Can Endometriosis affect the Sciatic Region?

As we enter a turning point in healthcare, more physicians are finally beginning to recognize endometriosis for the significant, public health crisis it is. Better still, teens and individuals with the disease are advocating strongly for themselves – and each other. Armed with authoritative knowledge about endometriosis, they are rightfully acting as partners in their own healthcare and taking a role in their disease management.

Sadly, we still have a long way to go, however. There are many who continue to maintain that endometriosis “is cured by pregnancy/hysterectomy/drug therapy/menopause” and who believe the disease only occurs in and on reproductive organs, and even then only in older women.  Of course; we know none of these old wives’ tales are true.

Indeed, while endometriosis typically develops on the pelvic structures including rectovaginal septum, bladder, bowels, intestines, ovaries and fallopian tubes, it has also been found in uncommon/distant regions including nervous system, rectus abdominis muscle (“abs”), lungs (where it can induce Catamenial Pneumothorax), and even rarely, the brain.  Endometriosis has also been found in rare males (even absent of estrogen therapy) and at fetal autopsy. The female ovaries are among the most common of locations, with the gastrointestinal tract, urinary tract and soft tissues following1 but even disease as far remote as the gastrocnemius has been documented in the literature.2
Image Linked from Wikipedia Commons

Symptoms of endometriosis, in general, do vary considerably, and may mimic those of other conditions like pelvic inflammatory disease or pelvic infection (but remember, endometriosis itself is NEVER an infection!), ovarian torsion, adenomyosis, fibroids or even ovarian cancer.  Classic signs include severe dysmenorrhea (painful periods are NOT the same as endometriosis!), deep dyspareunia (pain associated with sex), infertility/pregnancy loss, chronic pelvic pain, Middleschmertz (painful ovulation) and cyclical or perimenstrual symptoms, and the disease may present as bowel obstruction, melena (bloody stool), hematuria (bloody urine), dysuria (painful urination), dyspnea when the diaphragm or lungs are affected (shortness of breath), and swelling in soft tissues.  Degree of disease present (“stage” of endometriosis; 1-4 based on severity) has no correlation with severity of pain or symptomatic impairment. You can read more about endometriosis in general here. Consider joining others with endometriosis to share experiences and understanding on our social media network here.

Few laboratory tests are valuable in the diagnostic spectrum, as markers like CA-125 (cancer antigen), CCR1/mRNA and MCP1 (certain transcription factors modulated in endometriosis) all have very low specificity and sensitivity thus far.  Imaging tests (MRI, ultrasound, CT scan) may be more specific and helpful (particularly in the surgical planning stage), but it is very difficult if not impossible to confirm or exclude a diagnosis of endometriosis based on symptoms and tests alone. Certainly, though some prefer ‘medical diagnosis’ through use of hormonal treatments, this is far from accurate as well.  True confirmation can only be obtained through surgical biopsy.  Therefore, suspected extrapelvic disease should never be dismissed out of hand.

Extrapelvic endometriosis absolutely does exist, with just a few references to such noted above; indeed, these diagnoses are becoming even more prevalent.  This increased recognition may be in part due to the practitioner’s own improved understanding of the disease, and/or to the patient’s active role in their own care: speaking up and being heard about new or different symptoms they are experiencing and insisting on proper, authoritative treatment. To that end, one consideration for some patients who may present with specific symptoms is sciatic endometriosis.

ADAM has a rendering of sciatic pain in their graphic linked here:
Image Linked from ADAM

Sciatic endometriosis is not abundantly common – but it should always be included in the diagnostic approach to pain and symptoms affecting the sciatic nerve distribution.  The first case of biopsy-confirmed sciatic endometriosis was described by Denton & Sherill in 1955.3 Since then, many additional cases have appeared in the literature.  Symptoms that may lead to suspicion of sciatic disease may be predominantly left-sided, though infiltration of the pelvic wall and somatic nerves causing severe neuropathic symptoms due to endometriosis infiltrating the right sciatic nerve has also been well-documented.4

Pain may begin just before menstruation and last several days after end of flow and be accompanied by motor deficits, low back discomfort radiating to the leg, foot drop, gait disorder due to sciatic musculature weakness, cramping and/or numbness radiating down the leg, often when – but not limited to – walking, especially long distances, and tenderness of the sciatic notch. There may also be positive Lasègue’s Sign (an indication of lumbar root or sciatic nerve irritation in which “dorsiflexion of the ankle of an individual lying supine with the hip flexed causes pain or muscle spasm in the posterior thigh” [Kosteljanetz et al.]).  There is almost always a history of pelvic endometriosis.

Left untreated, sciatic endometriosis may presumably cause nerve damage through cyclical inflammation and advance “aggressively” to the epineurium and perineurium.5  Unchecked, symptoms will likely lose their cyclical nature with time, due to scarring, resulting in progressively shorter pain-free intervals until constant pain prevails.6

Physical examination may reveal various neurological deficits involving the sciatic nerve rootlets. There may be localized tenderness over the sciatic notch, but this is not a classical finding [Ellias et al.]. Pelvic examination may also even be normal.  The disease can be seen on imaging tests in some cases,7 though ultimately a visual (surgical) diagnosis is indicated.  Early diagnosis and treatment is indeed critical in order to minimize the damage caused by the recurrent cycles of bleeding and fibrosis, characteristics of endometriosis.8  While sacral radiculopathies (pudendal, gluteal pain), vascular entrapment or sciatic neuralgia may be at the root of symptoms for some individuals, in patients with sciatica of unknown genesis and/or suspicion of pathology such as endometriosis, laparoscopic exploration of the sacral plexus and/or sciatic nerve is advisable.9

Sciatic endometriosis is generally treated the same way as pelvic disease: preferably gold-standard surgical eradication (excision). When not possible, a course of medical therapy may suppress symptoms until such time as the patient can receive proper surgical intervention with a skilled, minimally invasive pelvic surgeon who has vast experience in highly complex cases of endometriosis. Physical therapy with a skilled PT specializing in endometriosis and CPP can also be very helpful.

It is very important to understand that not every patient with symptoms relating to the lumbosacral plexus or proximal sciatic nerve bundle will actually have sciatic endometriosis, as there can be several differential diagnoses. However – endometriosis can be a real (albeit less common) cause of nerve injury and symptomology.10  This extrapelvic manifestation of the disease must be considered in the differential diagnosis of those with symptomatic presentation, particularly if a history of endometriosis or chronic pelvic pain is present.

If you or someone you love suffers (or thinks they may be suffering) from endometriosis, we’d be honored to lend our expertise and free opinion. Please visit us here to learn more about the CEC’s services.

1. Woodward, Sohaey, Mezzetti.  Endometriosis: Radiologic-Pathologic Correlation. Continuing Medical Education. Radiographics. January 2001 21:1 193-216
2. Poli-Neto, Rosa-E-Silva, Barbosa, Candido-Dos-Reis, Nogueira. Endometriosis of the soleus and gastrocnemius muscles. Fertil Steril. 2009 Apr;91(4):1294.e13-5
3. Anaf, Simon, El Nakadi, Fayt, Buxant, Simonart et al. Relationship between endometriotic foci and nerves in rectovaginal endometriotic nodules. Hum. Reprod. 2000 15 (8): 1744-1750
4. Ceccaroni, Clarizia, Cosma, Pesci, Pontrelli, Minelli. Cyclic sciatica in a patient with deep monolateral endometriosis infiltrating the right sciatic nerve. J Spinal Disord Tech. 2011 Oct;24(7):474-8
5, 8. Teixeira, Martins, Avila et al. Endometriosis of the sciatic nerve. Arq. Neuro-Psiquiatr. 2011, vol.69, n.6, pp. 995-996].
6. Grand Rounds; “Endometriosis of the Sciatic Nerve.” Mazin Ellias, MD. Medical College of Wisconsin. April/June 1999
7. Wadhwa, Thakkar, Maragakis, Höke, Sumner, Lloyd et al. Sciatic nerve tumor and tumor-like lesions-uncommon pathologies. Skeletal Radiol. 2012 Jul;41(7):763-74
9. Possover, Schneider, Henle. Laparoscopic therapy for endometriosis and vascular entrapment of sacral plexus. Fertil Steril. 2011 Feb;95(2):756-8
10. Ghezzi, Arighi, Pietroboni, Jacini, Fumagalli, Esposito et al. Sciatic endometriosis presenting as periodic (Catamenial) sciatic Radiculopathy. J Neurol (2012) 259:1470–1471

Endometriosis: Understanding a Complex Disease

deep excision of endometriosis

(c) Center for Endometriosis Care

A Challenging Conundrum:
abdominal or pelvic pain? Infertility? Painful sex? “IBS” or bowel-related symptoms? Bladder pain or dysfunction? Lower back or leg pain? Bloating? Crippling fatigue? Debilitating periods? Endometriosis could be at the root of all of these symptoms – and many others, as the disease may present in different ways in different individuals. Most commonly, however, pain is among the top complaints of those struggling with endometriosis. Despite being among the most common of diseases, persistent myths, misinformation and deficient health literacy continue to enshroud endometriosis – even by the most well-intentioned sources – often resulting in poor information systems and continued lack of effective care.

Endometriosis is much more than simple, so-called “killer cramps,” as it is often mistakenly labeled, with symptoms routinely occurring apart from menses at any time of the cycle and, in many instances, becoming chronic in nature. It is important to understand that minor cramping during menstruation IS NOT UNUSUAL for many individuals, particularly adolescents. Inflammatory hormones like prostaglandins (along with others) are linked to menstrual discomfort; this mild pain is not typically cause for alarm and may be remedied through a variety of measures. Usually, such pain is temporary and subsides after menses. This is called “dysmenorrhea.” Dysmenorrhea is NOT the same as endometriosis.

Endometriosis is also NOT just ‘painful periods’ – nor is it simply ‘bits of normal endometrium implanted in abnormal places, caused by backflow menstruation’  as many articles, endometriosis foundations, spokespersons and even top scientists continue to incorrectly describe. Endometrium – the lining of the womb which breaks down and is shed during menstruation – is profoundly, histologically different from the functional glands and stroma that comprise endometriosis. The tissue does somewhat resemble but is not the same as – ‘normal’ endometrium. Characterized as the presence of endometrial-like tissue found in extrauterine sites – an important distinction, the aberrant processes involved in endometriosis give rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), organ dysfunction and much more. Alterations in certain biological processes of the endocrine and immune systems have been observed with the disease, and endometriosis is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules.


(c) KSinervoMD

Endometriosis is not a simplistic condition whereby normal uterine lining implants itself waywardly throughout the body like daises in a field with each period – yet unfortunately, this outdated, widely-touted notion continues to keep endometriosis mired needlessly in delayed diagnoses, hysterectomy, poor surgical treatment, ineffective medical suppressives and worst of all, a lack of hope. Fortunately – endometriosis is not a hopeless disease and quality treatments do exist.

Who has endometriosis: it is likely that a multitude of factors including genetic/epigenetic predispositions play strong roles in determining which, when and whether an individual will develop the disease. Though endometriosis largely affects females of reproductive age, the disease can and does impact menstruators and non-menstruators alike – including rare cis males, post-hysterectomy/menopause and before a girl’s first period. It is imperative to look beyond gendered health and include all persons, many of whom who are  often struggling to access endometriosis diagnosis, treatment and supportive, quality care in a traditionally female-identified space. The oft-overlooked, unique considerations in healthcare settings that fail to be inclusive can lead to additional stressors, further isolation and impaired treatments. Endometriosis has also been documented in the human fetus, and is extremely common in teens – though often dismissed, ignored and under-diagnosed due to stigma and lack of awareness. Without a doubt: endometriosis has a significant social and psychological impact on the diverse population affected – across several domains of their lives. The time for the disease to receive recognition as a major public health issue is long past due.

What it feels like: common, oft-debilitating symptoms of, and potential associations with, endometriosis include (but are not limited to):

* Crippling period pain in menstruating females
* Abdominopelvic pain at any time, often intractable and chronic
Bowel or urinary disorders/pain/dysfunction
* Painful intercourse/penetration/sexual activity
* Infertility/pregnancy loss/possible link to preterm births
* Immune-related and other comorbid disorders
Allergies, migraines or fatigue that may tend to worsen around menses
* Coughing up blood in cases of pleural/thoracic endometriosis
*Leg and lower back pain, particularly in cases of sciatic endometriosis
*The disease may also resemble some symptoms of, and has been linked to, adenomyosis
*Data also links chronic fatigue with menstrual abnormalities, endometriosis, pelvic pain, hysterectomy, and early/surgical menopause
*Comorbid pain syndromes, mood conditions and asthma are also common in individuals with endometriosis

Not all persons with endometriosis will have all symptoms, and no two cases are identical.

Where it is: the disease may present at an early age and typically develops on the pelvic structures including the rectovaginal cul de sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes. As recognition grows, it is also increasingly being diagnosed in areas outside the reproductive organs i.e. diaphragm and lungs, where it can induce a dangerous condition called Catamenial Pneumothorax. “Pelvic endometriosis” is traditionally defined as lesions of the tubes, ovaries and local peritoneum; “extrapelvic disease” is wide-ranging and refers to that found elsewhere – including the gastrointestinal tract, urinary tract, pulmonary system, extremities, skin, central nervous system and beyond [Jubanyik, Comite. Extrapelvic Endometriosis. Obstetrics & Gynecology Clinics of North America, Volume 24, Issue 2, Pages 411-440 (1997)]. Rarely, endometriosis may be diagnosed even in areas as far removed from the abdominopelvic region as the brain and soleus/gastrocnemius musclesthough again, this is highly uncommon – indeed, in performing over 8,000 procedures across a span of 20+ years, we have never encountered brain endometriosis in our practice. There are also highly uncommon, sparse reports in the literature of vena cava invasion in a post-menopausal woman; on the adrenal gland; periclitoral endometriosis; the iliac vein; intrahepactic endometriosis; nasal endometriosis; and other very rare manifestations of the disease. Symptoms often start early in life, but may be ignored by caregivers, healthcare consumers and practitioners alike. An estimated 70% of teens with pelvic pain go on to be later diagnosed with endometriosis.

The pain and symptoms may worsen or even become chronic over time as the lesions become deeper and more fibrotic.  As a result, infertility, bladder or bowel dysfunction, painful sex and many other physical and quality of life issues can occur. Current research indicates there is a preponderance of inflammatory milieu and hyperinnervation involved in the pathophysiology of pain in those with the disease, and that patients with chronic pelvic pain routinely demonstrate increased pain sensitivity even in non-pelvic sites. Early data implies that where the lesion is located may correspond to infiltration and/or adhesion formation, though further research needs to be done in this area.

menstrual-crampsEndometriosis & Malignancy: in recent years, a potential cancer risk in association with the disease has emerged, but it is critical to understand that endometriosis is not a malignancy. Increased risk factors include early-stage/low-grade disease and a specific histology i.e. endometrioid or clear cell carcinoma [Kim, Kim, Chung, Song. Risk and prognosis of ovarian cancer in women with endometriosis: a meta-analysis. British Journal of Cancer 110(7):1878 (2014)], but much is still unknown about the relationship. To that end, robust research is underway to evaluate the clinicopathologic characteristics of endometriosis-associated ovarian cancer (EAOC) in comparison with non-EAOC as well as other potential links. It is also true the potential exists for endometriosis to malignantly transform, but this again is a poorly understood and uncommon phenomenon. Though some mistakenly refer to the disease as a “benign cancer,” it is not: all cancers by definition are malignantIt is inaccurate to refer to endometriosis as ‘cancer’ and doing so contributes to the spread of misinformation that continues to surround the disease. “Benign” does not imply the disease has any less capacity to derail lives, however. Nonetheless, much research remains to be done to better illustrate and understand the tenuous link between endometriosis, ovarian cancer and other potential malignancies.

Endometriosis & Other Disorders: there has been extensive data over the past decades indicating endometriosis may be linked to select co-morbid conditions in some individuals with the disease as well, including a low/modest association between certain pigmentary traits and melanoma;  pain syndromes (interstitial cystitis, irritable bowel syndrome/inflammatory bowel disease, chronic headaches, chronic low back pain, vulvodynia, fibromyalgia, temporomandibular joint disease, chronic fatigue syndrome, etc.) as well as mood conditions (defined as depression and anxiety) and asthma; select infections and endocrine disorders; headaches and migraines; thyroid disease and others. Similarities in the clinical and epidemiological features of the associated disorders may be at the root of their co-morbidity, and further investigation is needed.

Predictability: generally, no particular demographic, personality trait or ethnic predilection exist in association with endometriosis and there is no preventive measure, though some provocative and debatable phenotype studies have begun investigating certain physical characteristics as part of the disease profile. Still, widespread lack of awareness and accurate disease understanding on the part of society – even by those affected – contributes in part to the average diagnostic delay of nearly a decade (6.7 years) across multiple physician consults—even today.

The Cost of an Enigmatic Public Health Concern: carrying a fiscal tag of nearly $119 billion annually, endometriosis affects approximately 176 million individuals worldwide (7.5 million in just the U.S. and 775,000 in Canada alone) – yes, again, even the rare male. The illness accounts for a significant loss of productivity – nearly 11 hours per individual per week; 38% more than for those with similar symptoms who do not have the disease. Endometriosis remains a leading cause of gynecologic hospitalization and hysterectomy (many performed needlessly) and can distort every aspect of the impacted person’s life. Yet despite it’s socioeconomic and global health impact, it remains a poorly understood, underdiagnosed, undertreated disease, sorely lacking in awareness and validation. This continues to lead to delayed diagnoses, poor treatments and widespread lack of support.


(c) Center for Endometriosis Care

Diagnosis: currently, the only way to confirm a definitive diagnosis of endometriosis is still surgically; typically Laparoscopy. Though symptoms and/or diagnostic testing (CT scans, MRIs, etc.) may give rise to “informed suspicion” and are helpful for presurgical planning, only surgery permits the requisite visual and histological diagnosis. Laparoscopy also facilitates treatment of the disease.  Though a popular approach among some ob/gyn generalists, it is inappropriate – and impossible – to diagnose endometriosis medically. There has also been over 50 biomarkers studied to date towards a non-invasive diagnosis, none with universal success. A more recent study indicated that concurrent measurements of CA125, syntaxin-5 and laminin-1 might be a somewhat useful, non-invasive test in the diagnosis and prediction of disease severity, but this has not been borne out in large, multicenter studies.

(c) American Society for Reproductive Medicine

Staging may be done at the time of diagnosis. This is a classification system developed by the ASRM based on the location, extent of and depth of disease, presence and severity of adhesions, and presence and size of endometriomas. Based on the corresponding number of points, endometriosis is assigned into stages I-minimal, II-mild, III-moderate, or IV-severe.  Stage does not correlate with severity of symptoms and a better system sorely is needed.

What causes endometriosis – and what doesn’t: often called a “disease of theories”, the definitive cause(s) of endometriosis remain under debate, though demonstrated association with a number of hereditary, environmental, epigenetic and even certain menstrual characteristics exist. Current research has implicated HOX genes, mesenchymal stem cells and certain immunologic factors in disease origin; nonetheless, no single theory explains endometriosis all those affected; more likely, a composite of several mechanisms is involved. The most popular theories which have emerged over time include:


(c) Center for Endometriosis Care

Retrograde menstruation – ‘Sampson’s Theory’, which dates back to 1921, is perhaps the most popular – yet flawed – of theories. Initially, Dr. John Sampson assumed that endometriosis is the result of “seedlings” from the ovaries.  Later, in 1927, he proposed the disease results from reflux menstruation, wherein endometrium is “showered backwards” onto the peritoneum and ovaries, taking hold and implanting.  However – endometriosis lesions and endometrium are NOT the same histologically, and retrograde menstruation is a very common phenomenon among most menstruators. Essentially, Sampson’s Theory considers endometriosis as normal endometrial cells which behave abnormally because of abnormal peritoneal milieu; however, this is actually not supported or borne out in the current literature, though this notion has persisted for almost a century. Unfortunately, this popular theory continues to complicate effective management and understanding of the disease today. Despite persistent propagation of Sampson’s Theory by countless sources, multiple studies have demonstrated that retrograde menstruation does not account for pathogenesis; the eutopic and ectopic endometrial stromal cells in those with endometriosis exhibit fundamental differences in invasive, adhesive, and proliferative behaviors from those who do not have the disease. Without question, there are various additional factors that contribute to disease pathophysiology and pathogenesis.

Immunologic dysfunction – a “broken” immune system may allow for the disease to take hold and play a small role in lesion developmentbut this does not sufficiently explain the disease process to begin with. Some have characterized endometriosis as an autoimmune disease, but there is no robust evidence to support this. It may, however, be linked to several autoimmune disorders and share an underlying pathophysiology. More research is needed to explore this topic.

Homeobox genes – dysfunction of HOX genes may results in abnormal differentiation and migration of cells during embryonic formation of the female reproductive tract, giving rise later to endometriosisThe presence of endometriosis in fetuses strongly suggests an embryologic origin.

Stem Cellshave been linked to disease even in absence of menstruation; this would also account for the rare cases of documented male endometriosis. Work continues to emerge from this area of important research.

Genetics – increased risk of endometriosis may exist in those with a mother or relative with the disease.

Environmental Toxicants pollutants (including a speculative link to dioxins, for which there remains conflicting evidence) have been hypothesized to induce certain cell changes, which in turn facilitate abnormal immune response allowing for the disease to take hold.

In specific, very limited cases the cause may be anatomic and/or due to neonatal uterine bleeding, but this remains speculative.  Still more recent data is exploring endometriosis from a systems biology perspective (Griffith et. al. 2014), while others maintain the disease results (at least in part) from hormonal aberrations i.e. certain deficiencies and inappropriate activation of receptor signaling and resistance, DNA Methylation, and/or aberrant MicroRNA expression.

Lymphatic spread/Halban’s Theory suggests vascular or lymphatic dissemination, but little confirmation has been reached in this particular area of research.

Yet, despite the myriad of theories, no single assumption accounts for all cases in all those affected. It is likely that affected individuals are born with endometriosis and a combined number of multiple factors subsequently trigger the disease later in life.

Nevertheless, endometriosis is certainly ‘not in your head’though a number of sources have indicated over the years that endometriosis is caused by “negative emotions” and various deep-seated psychological components. While there are various social, psychological and emotional aspects to any painful, chronic illness such as endometriosis, these are consequences of the disease – not the causeEndometriosis has its origins in very real, very complex genetic and molecular underpinnings – not some abstract ‘rejection of one’s uterus’ or inability to get along with one’s parents, among other erroneous claims.  Various psychoimmune interactions are present in those with endometriosis i.e. pronounced immunological shifts, manifested by imbalanced production of anti-inflammatory cytokines among other biologic responses – but these are part of the network of adaptive reactions associated with and perhaps because of it – not the origin of the disease. The highly offensive contention that endometriosis is a psychological ailment due to one’s internal failings or otherwise rooted in emotions leads only to further delayed diagnosis and ineffective treatment of the disease, and should be denounced wherever such claims appear.

Poor treatments lead to poor outcomes: unfortunately, many who struggle are often misdiagnosed and/or directed to “manage” the pain for years through repeat, superficial/incomplete surgeries in which all disease is not removed, or through use of painkillers, and/or via medical therapies like oral contraceptives and hormonal injections – but these only mask symptoms and do not treat disease long-term in any way. Patients are also sometimes misled to believe that the only long-term solution is removal of reproductive organs (hysterectomy/salpingo-oophorectomy) – a dangerous myth. Though hysterectomy has its place in endometriosis treatment for select cases, particularly where pain originates from the uterus, the disease is not “cured” by removal of the uterus, ovaries and/or tubes and cervix.  This ongoing misconception is responsible for countless, needless hysterectomies performed each year – indeed, nearly half of the 600,000 hysterectomies performed in the United States annually are the result of endometriosis.  Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue.  Many patients will need complex, multidisciplinary surgery combined with adaptation of lifestyle changes; indeed, we believe in an integrated, patient-centered approach here at the CEC.

Individual accounts of life with endometriosis often exemplify and embody the social implications of negative attitudes towards menstruation and reproductive health. This disease is so much more than ‘painful periods’ – it has the propensity to take away so many choices – when and whether to engage in a fruitful, enjoyable sex life free of pain with a partner of one’s choosing, when or if to pursue fertility options, whether or not to undergo invasive and painful procedures, or to choose ineffective menstrual suppression and medications which alter the cycle, and much more. Likewise, endometriosis is consistently sidetracked by and mired in the fertility aspect by many researchers and physicians, when what we should be focusing on is not a person’s procreative potential, but the impact which pain has on her entire life and her resulting ability to make and enjoy her own choices – whether sexual or career or socially oriented.  Truly, endometriosis is a public health crisis – and a key pelvic health initiative needing further promotion, understanding, research and empathy.

Still – despite often stark outlook on the disease, there is help and hope!

Quality surgery, alternative therapies, diet and nutrition, acupuncture, physical therapy and other adjunct treatments can all be helpful at effectively managing symptoms long term. We believe high-quality, minimally invasive excisional surgery (LAPEX) is the cornerstone of any effective management plan.


(c) Center for Endometriosis Care

Surgical Treatment: confusion often surrounds the surgical approaches for endometriosis. It is important to understand that the laser is a tool – not a method of treating the disease. Likewise, Laparoscopy is the surgical approach (minimally invasive) – not a tool. The da Vinci robotic-assisted procedure is also an approach, not a method It is important to understand that tool and method are not nearly as important as skill of the surgeon: if he or she cannot excise, they cannot excise using any method or tool.  For example: laser can be used to safely and successfully perform laparoscopic resection (excision) of all disease, as we do – or it can be used to superficially and incompletely burn surface lesions.  It’s imperative to determine which method your surgeon will be using and understand their disease knowledge, approach and expected outcome. Again: the tool is not as important as the skill of the surgeon who uses it, and most tools can be used to facilitate a number of surgical approaches.

At the CEC, we use the C02 laser as an effective tool to achieve deep excision. Dr. Albee was among the early and few pioneers to focus their work solely on treating endometriosis and pelvic pain pathology, a legacy carried forward by Drs. Sinervo and Kongoasa today. We do not practice obstetrics here at the CEC, and concentrate only on endometriosis and causes of pelvic pain. “LAPEX”, as coined by Dr. Albee (Laparoscopic Excision), differs significantly from less meticulous laser/other surgical techniques including laser vaporization and electrocautery as commonly performed by many ObGyns. These methods destroy tissue, making microscopic evaluation impossible and leaving behind endometriosis “roots” – leading to high recurrence. LAPEX is indeed the gold standard for the definitive treatment of endometriosis and may alleviate many of the associated symptoms, but is practiced by only select advanced gynecologic-endoscopic surgeons in the world. Excision requires highly advanced surgical expertise and commands intense training on the part of the practitioner, as well as a complete and thorough (and accurate) understanding of endometriosis etiology, pathophysiology, sequela and far-reaching consequences. Read more here about LAPEX.

Only through early intervention can we reduce the associated morbidity, infertility and progressive symptoms of endometriosis.  We must alleviate our culture of menstrual misinformation through timely and authoritative disease education – thus leading to reduced costs and most importantly, improved patient outcome.  Early diagnosis and proper treatment are critical keys to living well in spite of the disease.

painThe Center for Endometriosis Care (CEC) is a COEMIG-designated Center of Excellence which approaches endometriosis treatment unflinchingly through our multidisciplinary, integrated, patient-centered approach. We believe there is help – and hope. Please let us know how we can assist you.








Women suffering in silence: The endometriosis crisis

cnbcThere’s a little-known but extremely common disease afflicting 1 in every 10 women in the United States and costing the nation an estimated $119 billion annually. Many women struggle in silence, not even knowing they have it. The disorder is known as endometriosis and can affect women of all ages. Read more at CNBC here.


March is Endometriosis Awareness Month! Real Stories from Real Experts (Page 2)

Each day thaware15-300x98roughout Endometriosis Awareness Month, we will be adding stories (and in some cases, links to stories) that have been shared with us by the real experts who know this disease best: those who live with it every day (read more about this project here). Check back daily for the latest and scroll down to see all the stories as we add more. We commend our contributors for bravely sharing their experiences in order to raise awareness and help others. You have our gratitude and respect, and remain our sources of inspiration each day. Thank you.

PAGE 2 | Be sure to visit Page 1 here to read all the stories
Jane Doe

Here’s what I know about endometriosis…

I know that since the age of 11, it has completely taken over my life. It started with extremely heavy periods, fainting, throwing up, sweating, diarrhea and horrible pain. It only continued to get worse the older I got. My family doctor couldn’t figure out the problems and then at age 14 I started getting ovarian cysts and they were awful to deal with but I knew that they weren’t the main cause of all my problems.

Finally, I was referred to this incredible OBGYN at age 22, she knew right away what my problem was, endometriosis. When I was 26, all my problems got worse, I hadn’t been able to hold onto a job for very long or really enjoy life to its fullest. I ended up in the ER for what felt like the millionth time but this time was different. I couldn’t stand the pain any longer. My OBGYN suggested surgery and at age 27 I was operated on. My right ovary was attached to my hip area and was successfully detached. She was able to remove some of the endometriosis but my left ovary and left ureter were completely covered. So they were left as is. For the first time in my entire adult life, I felt normal. I started a great job and traveled and even got engaged to my boyfriend of 7 years. We found out summer 2015 that I pregnant with twins, it quickly went from exciting to the most horrible experience of my life. I was 9 weeks along when I miscarried both babies, it was just awful. I’ve never felt such horrible pain in my life and not to mention the grief that came along with it.

It has been 6 months since then and my endometriosis has only gotten worse. Worse than before my surgery. It’s accompanied by severe cramps/periods, panic attacks, diarrhea, blacking out, back pain, vomiting, depression, fear of getting pregnant and going through all of the awfulness again. I lost my job because of everything I had gone through and the now constant pain from endometriosis.

So what I know is that pregnancy does NOT fix endometriosis, if anything it has only made it much worse. I now have to wait until April before I see my surgeon again so I’m not sure what the future holds. I hope that one day there is a cure for this so no more girls and woman have to suffer.


Jane Doe

I am 44 years old, and it has taken over 20 years to finally be diagnosed with endometriosis.   Ever since my period started it has been painful, unpredictable and heavy.  I was put on birth control as a young teenager to control my “bad cramps” and to “regulate” my cycle.  I was told that pain with menstruation was just part of being a woman.   

For years I told doctors that something felt wrong with my periods, it should not be normal to feel like I had the flu the week before, having to drag  myself through my 8 hours of work and then going straight to bed due to severe fatigue when getting home, PMS hit me like a Mack truck! The week of my period  I  sometimes would be  doubled over in pain and heavy bleeding, there were days I could not eat during my cycle because eating would make me so sick to my stomach.  I begged for hysterectomy since my early 20’s due to the awful pain only to be given some other form or birth control to try or dismissed. Thank God I now know that hysterectomy is not a solution to endo, but that is how bad the pain was. I was willing to lose body parts to be free from the pain and havoc that endo gave me.  

Last February I had a cyst on my left ovary that caused severe pain that just would not resolve, now I would really experience the frustration and heartache it takes to diagnosis and properly treat endo.   I went to my primary care doctor, 4 different Ob-gyn’s, a Uro-gyn (to consider bladder, bowels and female parts) , a Gastroenterologist (to consider bowels) , and a Urologist (to consider bladder). I got all kinds of different diagnosis, but still had no relief of relentless pain.  I  finally found one Ob-gyn that was willing  to do an exploratory laparoscopy. She was the 9th doctor in a few short months I consulted  for my pelvic pain, she found me full of endometriosis and adhesions from an old gallbladder surgery .  9 doctors in a few months to finally figure out what my pain was from, the only reason I kept searching so hard was because the pain was so severe and constant it was taking me away from my friends, family, job, and life…I had no more quality of life.     

I had ablation with the OB-gyn who found my endo, and had another surgery with an excision specialist who removed endometriosis from more challenging areas (he also found adenomyosis that was missed for years THAT was addressed by hysterectomy). 2 surgeries in 5 months for endo that was inside me for over 20 years and countless doctors to properly address endometriosis. 

Many doctors, many years and tears to finally put a name to my pain: Endometriosis and adenomyosis. Now my road to recovery can finally begin.



My story began at the age of 11 when I broke out in hives one morning and started my first menstrual cycle later that day. Every month my immune system would drop with the onset of my cycle and I would come down with a cold, strep throat etc. and the pain from the cramps would increase. By high school I was missing classes due to the pain from my cycle. My dr kept telling me to take Advil, it never helped. It wasn’t until I began working full time and my boss begged my dr over the phone to do something to help, and for a while my pain was manageable. By the age of 21, I re-enrolled in undergraduate school and my monthly pain had become debilitating. It took my mother begging her oncologist to check me out before I was finally scheduled for surgery to check for endometriosis, I was 23 at the time. Once I was diagnosed with Phase IV Endometriosis my life became nothing but one surgery after another, hormone suppression drugs, bc pills in every dose and combo possible, my pain was never taken seriously and even days after surgery was treated like a drug seeker. I went through too many Drs to count. Some told me the pain was in my head, one told me I just had a low tolerance for pain, but my favorite was when one told me “your pain is not my problem”.

So, after too much suffering and no end to it in sight, I had all my reproductive organs removed along with all endometriosis tissue the surgeon could find. I was 30. It always amazed me that everyone was always so caught up in my fertility, when it is known that endometriosis is the number one cause of infertility, and, to be honest when you are doubled over vomiting from pain the last thing you are thinking is “wow, I sure wish I had a screaming infant to take care of right about now!”

During my hospital stay I was put in a room across the hall from the mourning chapel. Naturally when I discovered this and was encouraged to walk around, I went searching the halls for the evening chapel, they didn’t seem to have one. On my last night a nurse I had not seen before came in and asked me if I was ready to see my baby. I just started laughing and told her I would love to see the baby, but there was no way it could possibly be mine.



I don’t remember exactly when I started menstruating, but I think I was around 13. Throughout middle and high school, I always missed at least one day of school a month or had to be picked up early due to being doubled over with painful cramps. My mother would just tell me to put my legs up and take a nap. Family, friends, magazine articles – nobody acted like it wasn’t totally normal to miss school when you have your period. It didn’t get better, and when I was 15, I was prescribed oral contraceptives to help regulate my period because it often lasted up to 10 days and my cycle was around 24 days long. It seemed I was menstruating more than I wasn’t.

I took those pills (changing the brand/type a few times along the way) for 15 years. I remember asking my doctors if it was ok to be on them so long. “Yes, perfectly safe,” they all said. During those years, I had gotten married and my husband and I had always said we didn’t want children. My periods weren’t quite as painful, but looking back, I had a lot of other symptoms I just never put together with my reproductive system. I would have stabbing pains in my rectum that would nearly bring to my knees at random times, like while walking across a restaurant to be seated at my table. I had painful IBS type symptoms that would often leave me pale and weak. The worst was probably the painful intercourse. This nearly ended my marriage due to my inability/unwillingness to talk about it with my husband, which left him feeling unwanted by his wife, and me vulnerable and without control.

Shortly after my 30th birthday, my husband and I decided maybe we did want to have children after all. I made an appointment with an OBGYN and had her run any tests she thought necessary to be sure I was healthy enough to conceive and carry a baby. She said I was! I could stop taking the pill after my current cycle ended. We were scared but excited and wondering what in the world we were doing, but after 15 years of taking a pill every single day, I stopped.

That’s when all hell broke loose. Suddenly, I was missing work or going home early nearly once a week. I was almost constantly in abdominal pain that left me laying on the couch in the fetal position sometimes for entire weekends at a time. We stopped making social plans because I had been cancelling nearly all of them, anyway. Sometimes I would lay in bed moaning in pain until I blacked out. I eventually found taking four ibuprofen at a time would give me a few hours of relief so I could get through at least part of my day. I desperately went crawling back to that OBGYN, not knowing where to start. After she asked me to try taking Mirilax daily, because she was convinced that I was just constipated. When that didn’t work, she sent me for a colonoscopy where I was found to have a few places in my colon which were “irritated,” but nothing more. My professional treatment was to “…double-up on the Mirilax.”I left with a large bill for a test that didn’t tell me anything. I was back at square one. One day, I even ended up at a walk-in clinic when I couldn’t stand the pain any longer. They did an x-ray of my abdomen and sent me to see a specialist because they saw some calcifications on my hip bones. I was hopeful, but it turned out to be yet another waste of time.

I started to have searing pain in my hip joints that felt like hot pokers. The stabbing rectal pain became more frequent and significantly more intense. In a desperate attempt to take control of my own health, I tried something called the “Whole30.” The 30-day strict elimination diet with a structured reintroduction led me to discover eating wheat/gluten caused serious, painful episodes and constipation – sometimes lasting as long as 10 days! I also found I felt much better without dairy or legumes (especially soy) and limiting sugar was important if I wanted to feel good as well. This was revolutionary in my life! I finally felt like I had some control over my health! I got to a healthy weight, was no longer missing work and was becoming active again (even running my first half marathon and first obstacle races!), but I still had painful episodes around the time of my period. I saw another physician who tried treating me with hormone therapy. I was taking a dose of progesterone daily with additional sublingual doses during painful episodes. This was the first time my periods weren’t too painful for me to exercise; but my cycles became very unpredictable and the progesterone often left me exhausted.

By this time, my husband I had been trying to conceive for around two years and we realized infertility may also be an issue. Refusing to go back to the first OBGYN, who also tried treating me with antibiotics “just in case,” I made an appointment with a different physician who practiced “natural family planning.” This turned out to be the best decision of my life. He mentioned he suspected endometriosis during my first visit with him. This was the first I had heard that word mentioned by a medical professional. He explained that it could only be diagnosed via laparoscopic surgery. I was fearful of surgery and of the possibility he could be wrong and he might find “nothing wrong with me” as so many before him had. He completely understood and respected my reservations about surgery and he had other solutions! I felt so at ease with his care even though I still didn’t have definite answers. He sent me to a fertility care specialist who taught me to use NaProTECHNOLOGY (Natural Procreative Technology) to chart my cycles using the CREIGHTON MODEL FertilityCare™ System (CrMS). This system taught me so much about my reproductive system and the charting allowed my doctor to see my body wasn’t producing enough progesterone (which was already suspected by my previous doctor). He had me taking it vaginally, but only 10 days per cycle, starting the third night “post-peak,” in order to preserve fertility. This seemed to help with the pain a little, but not enough to make up for the messiness of the vaginal suppositories and the constant sleepiness. I went crying into his office one day, begging for the surgery. I had my period that day and was in tremendous pain. He asked if he could examine me. That’s when we discovered I had Pelvic Floor Dysfunction (the exam left me barely able to walk to my car). He asked me to give pelvic floor physical therapy a try before we scheduled surgery, just in case that was what had been causing all of my problems.

This sounded intimidating, to say the least, but my therapist was incredible! She made me feel totally comfortable and again, I learned so much about my body! Unfortunately, she couldn’t help me. I would start to get better, but my cycle would start again and we’d lose all the ground we had made the weeks prior. She reported back to my doctor that she hadn’t been able to help me and we scheduled laparoscopic surgery for a few weeks later. I was nervous and scared, but looking forward to finally having answers and possibly relief. The plan was to look for endo, and if it was found, remove it. During my surgery, endo was found and it was removed from my uterus, ovaries and bladder. It was also discovered that my pouch of douglas was obliterated and my uterus was stuck to my bowels. My doctor didn’t feel he had the skill required to remove the endometriosis from my bowels and free up my uterus, so that was left as it was. He recommended that if I still was experiencing pain, that I seek a specialist to remove the remaining endometriosis.

Through physical therapy, I learned about a Facebook group called “Nancy’s Nook” that focuses solely on evidence based education about endometriosis. For the first time, I didn’t feel totally alone in this, as there are thousands of other women all over the world with the same disease (and many of the same debilitating and sometimes embarrassing symptoms)! Some women were unable to work at all due to their constant pain. I was starting to feel grateful my pain generally only lasted from the onset of my period until I ovulated and then I would get a break for about 10 days. My doctor and I tried various things for pain relief and I ended up with a prescription for an opioid narcotic pain reliever. It usually worked, and as long as I cut it in half or quarters, I could function at work. However, taking them daily for several days in a row led to a feeling of foggy brain and physical exhaustion. I started to feel like I was treading water, just trying not to get swept away by the current of pain and fatigue. I often used essential oils in a hot bath with epsom salts to help my body relax and sometimes had to take a strong prescription NSAID with my other prescription pain reliever in order to function. Opioid drugs can cause constipation and other issues, and the strong NSAID was putting me at risk for things like stomach ulcers. Not to mention, I was still dealing with infertility. This was no way to live.

Nancy’s Nook maintains a list of expert endometriosis excision specialists based on the methods they use to treat endo (excision vs. ablation…etc.), and most importantly, patient feedback from other nook members. Through my research, I determined Dr. Sinervo at the Center for Endometriosis Care in Atlanta, Georgia (a five and a half hour drive from where I live) would be the very best surgeon to treat my specific situation. I applied online to submit my records for review and after receiving the application packet, it took me another several months to get the courage to submit it. Within about two weeks of submitting my packet, I heard from Dr. Sinervo himself! He was certain he could help me and let me know one of his staff members would be in touch to start the process of scheduling surgery. I had to spend some time convincing my insurance company that they should make an in-network exception for an out of network surgeon and then I was ready! I was actually looking forward to having surgery. I knew this surgery would be the beginning of the end of my endo journey. I expected to need more pelvic floor therapy after I was healed, but I was expecting my life to be back to “normal” within about six months of surgery. On December 9, 2015, I went into surgery knowing a bowel resection would possibly be required. I came out of surgery having had a bowel resection, appendectomy, partial vaginectomy (there was a nodule of endo in my vaginal wall muscles – ouch!) and having had several endometrial cysts removed as well as my uterus and ovaries unstuck from my bowels. For all that was done, I felt pretty great immediately after surgery. My bowels were working, my pain was easily managed and my appetite was normal.

About a week a later things took a turn for the worse, however. A rectovaginal fistula formed. This was pretty awful. Not painful, but emotionally defeating. I went back to Atlanta and the doctor that performed my bowel resection with Dr. Sinervo did a temporary loop ileostomy. Talk about an adjustment. I felt like I had brought another patient home from the hospital with me requiring its own special treatment and care. Fortunately, another Facebook support group called “ostomyland” came to my rescue. At first I thought nobody needed to know about my ostomy, but within a week or two, I was no longer embarrassed and was able to tell people about it. I came home from the hospital with it on Christmas Eve and my dad and stepmom drove twelve hours to visit us the day after Christmas. I was able to get dressed and go out to eat with them and my husband with no issues (other than my appetite being a fraction of what it was pre-op). As I sit here writing this, I am recovering from another surgery that was 10 days ago where Dr. Sinervo repaired the hole in my vaginal wall along with the adhesions that had formed from the excision surgery. So far, my two post-excision periods have occurred immediately after my ileostomy surgery and this last surgery, so it’s hard to tell if my pain is gone because I’m managing post-surgical pain with the same prescription pain relievers I used for endo. I can tell you I just feel different, however. I feel like the endo part of my pain and suffering is gone. I still have to get through another surgery or two to repair my bowels and reverse my ileostomy, but once those are over and I am healed, I can begin therapy and that will be the last piece of the puzzle for getting my life back.

People need to know about endometriosis. They need to realize it’s not normal for women and young ladies to have severe pain during their periods and to seek help if this is the case. We all need to advocate for ourselves and accept nothing but the best care available without interference from our insurance companies, families, friends, employers or doctors who don’t know what they don’t know. There is no cure for endometriosis and pharmaceuticals can only treat the symptoms and should never be prescribed to a patient as a treatment for the disease. The only real way to treat the disease is with excision surgery with a skilled surgeon who knows what to look for and how to remove the deep infiltrating disease from any and all tissues (or employ the help of additional surgeons as needed such as in the case of deep bowel involvement). Unfortunately, there are not many of these expert surgeons in the world, so be prepared to travel; but it will be worth every mile to get your life back.



I had horrible menstrual pain as a teenager. The pain was so bad I threw up. At age 18 I was put on birth control pills to control pain, bleeding and ovarian cysts. Even with the birth control I still had horrible, painful periods and pain throughout the month as well, which worsened the older I got. Because of the painful periods I chose to skip the sugar pills so I wouldn’t have a period. I did this for about 4 years before I got married. I got married end of October 2010 and stopped BC end of November 2010. April 2011 I had emergency surgery. Went into the Dr on Tuesday and had my surgery Friday. They suspected a hydrosalpinx. It ended up being endometriosis of the ovary. At that point I lost my left ovary. Immediately after surgery I was put on Lupron. It did not help the pain and I was hospitalized one week after surgery for a low grade fever and severe pain. My endometriosis was burned off during this surgery. The pain was so bad I wasn’t even able to wipe myself for nearly two weeks after going to the bathroom. I was only able to sleep on my right side for a month. I was not able to even stretch out on my back.

Let’s talk about the Lupron shot. It had horrible side effects. I was extremely fatigued. I had one big mood swing. Meaning I went from my usual happy easy going self to frustrated and hard to get a long with and next to impossible to live with. Remember id only been married 6 months! I hated my own self and there was nothing I could do! I gained nearly 50 lbs with the two shots I received. I believe these shots lasted 3 months a piece. It took a year for me to lose the gained weight. This surgery was followed by multiple surgeries. 9 in four years. Some were both laps and DNC and other just DNC. I was put on just about every drug known to suppress my symptoms. I was told to get pregnant or get a hysterectomy. I wish I could get pregnant! Because of all the damage done I have less than a 3% chance. I was diagnosed with pelvic floor dysfunction.  Insurance won’t cover pelvic therapy I need. They will approve 8 hours a year saying their therapist states I shouldn’t need more than that. I have spent probably close to $25,000 all together in pelvic therapy over the last six years. But the insurance will cover all these surgeries that didn’t help and ended up doing more damage to me than the endometriosis would have.

Over the years I have formed adhesions both from the improper surgeries and the continued growth of the endo. The adhesions have formed into frozen pelvis and I am now experiencing bowel blockages. During my first surgery I was told if I hadn’t have had this surgery I would have to have surgery on my bowels in 4-6 years because the endometriosis was so bad my bowels were almost completely closed off. It seems that’s the only part they got right. The surgery was in April of 2011 and I have had blockages confirmed on xray in January 2016. Five years later. From a surgery that didn’t work! I now have the bowel issues the surgeon then stated I would have had at this time had I not had the surgery. This should go to show these bandaid surgeries do not work! I did not learn until end of 2015 that these treatments don’t work and excision surgery is the best scenario. I wish I knew then what I know now.

No Dr or individual led me in the right direction. And it was not something I thought I needed to research. I thought I was getting proper care. I also want to note how fatigued I am from the chronic pain and not sleeping. Blood and urine tests show my cortisol is very low and doesn’t spike mid morning like it should. It actually drops. I wake up feeling no better than I did when I went to bed other than the fact my heart isn’t racing from exhaustion. I’m also out of breath just talking due to fatigue. I am just exhausted to no end.



How endometriosis changed the course of my life…

I’ve been dealing with endometriosis for over 30 years and in that time this condition has shaped my life in ways I never would have expected.

I received the official diagnosis of endometriosis in my early thirties, but looking back I can now see the symptoms were there right from my early teenage years.  It takes an average of almost 10 years for women to get diagnosed with this disease, shunting through the medical system with their symptoms, getting put on hormone altering drugs, prescription pain medications, or even being told to live with grueling pain.

I had very painful periods in my teens, and as I progressed into my early twenties my periods would stop and start, or be much longer than normal.  Finally I went to a gynecologist about this and was sent for a D&C (dilation and curettage  – a procedure to remove tissue from inside the uterus for diagnosis).  This showed nothing abnormal and I was put on a birth control pill to “help regulate” my periods.  But over the next years I started developing other symptoms: a bloated abdomen, sensitivities to certain foods, and bouts of irritable bowel syndrome (IBS).  I would often have sharp pains from my ovaries and a relentlessly aching lower back.

Finally one night I woke up with pain that felt like an axe was in my abdomen, the worst pain I ever felt in my life.  I should have gone to emergency but for some reason I just lay curled up on the bathroom floor crying and toughing it out for hours.  That event got me referred to another gynecologist and ultimately for a pelvic ultrasound.  The ultrasound revealed that I had many uterine fibroid tumors and a cyst on one ovary, and it was thought that the extreme pain had been from the rupture of a cyst on the other ovary.

Next I was sent to an endometriosis specialist and scheduled for a laparoscopy, where the official diagnosis was made.  The organs in my pelvis had been extensively stuck together with adhesions.    I remember being told that I had “stage 3” of this disease that I had never heard of, couldn’t pronounce, and oh by the way – there is no cure, and you may not be able to have children.  There is definitely a huge shock factor to that kind of news.

Post-surgery it was recommended that I go on a course of Depo-Provera – a synthetic progestin that is supposed to slow down any endometriosis growths, by suppressing menstrual cycles and estrogen in the body that stimulates the endometriosis.  I had the first shot, and within less than 2 months had gained close to 10 pounds. But worse than the weight gain were the horrible mood swings, anger, and irritability – not to mention hair loss and skin breakouts.  By 9 months in, I couldn’t stand being in my body or mind anymore.

Not only was I feeling negatively about my body and health, but endometriosis had begun to take a toll on my personal life as well.  I think, no I know, there were times I pulled away from potential relationships, and even took myself out of the dating realm for long periods of time, because at some core level I allowed myself to believe that I was “broken” as a female, and possibly couldn’t have children, so what man would want to take that on.  And I’m sure for many women who do have a partner, at some level they wonder if they’re going to lose them.  Along with dealing with sometimes debilitating physical pain and fertility issues, this is another layer of endometriosis suffering that can be devastating.

During this time I had started intensely researching to try and understand what I could do to support my health.  At this point, I made the decision that I was going to take control of my healthcare and try and find some additional options.   I told my Dr. I was not going to take the Provera any longer and she advised against going without drug intervention, but I had committed to and felt comfortable trying some alternative health measures and at least seeing what happened.

Many women with endometriosis often also develop other health conditions.   A 2002 study reported in the Sept. 27 issue of Human Reproduction(1) concluded that hypothyroidism, fibromyalgia, chronic fatigue syndrome, autoimmune diseases, allergies and asthma are all significantly more common in women with endometriosis than in women in the general USA population..  This was the case for me, with hypothyroidism, fibrocystic breasts, uterine fibroids, digestive issues and other pelvic pain conditions, so at this point I felt well and truly imperfect; and I knew I wasn’t just dealing with endometriosis alone, but a multi-system dysfunction.

Because I was diagnosed in the 1990’s there was much less information available, but I devoured anything I could find about women’s hormones, reproductive issues, nutrition, supplements, and alternative health.  I radically changed my diet, and used supplements to help clear excess estrogen in my body and bring my hormones into balance.   I made sure I was exercising regularly and allowing myself to rest when I needed it.  I starting seeing a naturopath for extra guidance on supporting my health with natural means.  I began to improve and reached a point where I had very little pain or symptoms!

I felt so good for so long, that eventually I slid out of the “program” I had developed, and a few years later, was back for another laparoscopy as I had a large ovarian cyst.  After surgery #2, I decided I would stick with what I knew worked for me, and never looked back.

I returned to specific nutrition, supplements, acupuncture, exercise, and later discovered pelvic floor physical therapy to address the damage that had been done in those years to the internal structures.  I never had to have a further surgery or medical intervention for the endometriosis, and experienced very little pain.

My relationship with endometriosis had altered, to the extent of changing the course of my life.  In the last few years I felt strongly that after decades in the business world, I wanted to find a way to help other women with everything that I had learned – so they didn’t have to experience years of frustration, isolation, and needless suffering while trying to make some sense of the flood of sometimes conflicting information on how to treat the disease.  I became a certified nutrition coach with specialized training in women’s health and pelvic pain conditions, and now focus my personal experience, knowledge and my heart on helping women manage this disease, on both physical and emotional fronts.

One of the most important lessons endometriosis has taught me has been that when faced with a serious health condition, you need to become your own advocate and take control of your health care by understanding as much as you can about it.  Knowledge is power, and once you have that control back, you can make informed decisions, and support your body’s natural healing abilities. 

I also learned that there is no magic bullet, or exact path to take.  For most women, managing endometriosis will mean an individualized combination of surgery, pain medications, nutrition and lifestyle changes, and physical therapy to recover, but it can and does happen!  There are some wonderful organizations for endometriosis that continue to put out an empowering amount of practical information, and medical and alternative health practitioners (among whom I now count myself) who are absolutely dedicated to relieving the pain of endometriosis.

Living with endometriosis changed the path of my life drastically from how I envisioned it would be as a young girl, but now, as a middle aged woman, it’s created an opportunity for me to serve and support other women in a way that never would have existed but for my painful journey.  I am proof that you are not alone in this fight, and that there is hope and healing!


1 Human Reprod. 2002;17(10):2715-2724



I am a 42 year old woman and was diagnosed with Endo in 2004. My mother had Endo and one of my best friends from childhood has Endo. My symptoms started developing in my teens. I developed flu-like aches and pains, vertigo, as well as low grade fevers ( I did not have severe cramps back then, but did have severe allergies and the strange flu-like symptoms). As I got to be in my 20’s, I started developing heavy periods and bad cramps with my period. I also started having a terrible stabbing pain in my lower right ribcage. At first it was diagnosed as GERD and I was put on an acid reflux diet and Ranitidine. It did make a bit difference it seemed but nothing significant.

was 28 when I had my first event that indicated there was something wrong. I was working at an editing facility in NYC, sitting at my desk when I suddenly had an excruciating pain in my abdomen on one side. It felt like I was being stabbed. It was so bad I called a coworker over to help me. I had No idea what was going on and did not even have my period at the time. My boss asked if I needed to go to the hospital. I had no clue what to do. I said I wasn’t sure. So they took me into one of the studio rooms where there was a couch and had me lie down for a while. The pain continued on and off for probably an hour. Then it was gone as soon as it came. They sent me home in a car to rest. It was a strange and frightening occurrence but it seemed to pass and it didn’t happen again for a while.

Some months later I had the pain again. I decided to see a GYN and he told me I needed an ultrasound. The ultrasound showed that I had a cyst on my ovary. He recommended I see an oncologist who specialized in gynecology…. I was blown away. I went to see her and she ordered blood work and a CT scan. She did not believe I had cancer from her findings (thank god), but told me she would need to do a laparoscopy to be sure. She said she believed I had endometriosis. We scheduled the surgery. And then just the day before my surgery, she called me and told me that she had made a mistake. That I did not need surgery…. I didn’t understand this. But she said that I was ok and the cyst would go away on its own.

Well, whatever was going on, I started to feel better and assumed that I was ok, as the Dr said I would be. Nearly a year later, I was having problems Again. I went back in to see my GYN who ordered another ultrasound, and there it was… A chicken egg sized cyst on my ovary. A chocolate cyst they said. My GP had also  done blood work and did a CA125 test. She said it showed abnormal cell growth. So, by her recommendation, I went to see a surgeon who would do laparoscopy and remove the cyst. He diagnosed me with Endo. He removed the cyst and some near by specs of Endo. He showed me pictures of the surgery and explained what he did and put me on birth control to try to keep the cysts from forming. I didn’t do well on the birth control pills. My period symptoms were a bit better, but I began to lose weight and have terrible joint pain and felt quite ill and also crazy. I was switched to another BC. Didn’t do well on that either. I had terrible swelling and sickness and mood swings. I stopped taking birth control after 3 weeks of hell.

I had several cysts in the years to follow. Bad cramps, heavy periods, intestinal problems, vertigo and depression. I suffered through and just took tons of ibuprofen. I also suffered chronic yeast infections and UTIs, some so bad they infected my kidneys and I had to take multiple rounds of antibiotics to get better, a vicious cycle for the yeast infections. In 2011, I got very sick. I had the worst yeast infection of my life, a UTI, was bleeding for 13 days straight, and my abdomen was distended. I began to get a fever and had a terrible stabbing pain again. I went to my GP and she was terrified for me. She said I had to go to the hospital Immediately. She believed I had a ruptured cyst or an ectopic pregnancy. I took myself to the ER, dripping with sweat and bleeding heavily. They did an ultrasound and said I had another cyst. And possibly a growth of sorts. They suggested I see a specialist. I also had a strain E coli that usually only ICU patients get.

The specialist at Weill Cornell did an ultrasound right in his office, he said I had polyp and it was like the culprit for all the imbalance and infections. The cyst was an ovulation cyst and would dissolve on its on. So, I had another procedure. A Hysteroscopy to remove the polyp. And that was that. He said that I should just stay off birth control since it seemed to cause me more problems and just take things as they come.

I did okay for a while. The usual symptoms continued. Until my husband left me. And I was devastated… I lost weight because I couldn’t eat. I left my job because I couldn’t focus on work. And I had to move to a whole new place and get a roommate. I got 2 jobs, working 7 days a week to support myself. I was stressed out and exhausted. And then, I began to get severe cramps again. More ultrasounds. More cysts. More birth control despite my skepticism. It was supposed to be a low estrogen miracle drug. My hair started falling out, I lost weight, I felt crazy, and now…. A new side effect. Reynaud’s syndrome. My fingers started turning dark purple and my finger tips were going numb. I got off the drug. And the Reynaud’s never went away and continues to this day, 5 years later, but now my fingers And toes turn white. I also developed Sciatica, that always seemed to coincide with my cysts. I had many trips to the ER that year. And one trip, an ultrasound showed a complex abnormal cyst that was entwined with my ovary. Another trip to a specialist. A wonderful Oncologist in gynecology that was straight forward and told me she would do the surgery and find as much as she could and it should hopefully give me another several years of relief. She did the surgery, and was able to save my ovary. She also found Endo all over my bladder, uterus, rectum, and covering the bottom of my appendix… So much so that she contemplated removing it, but decided to leave it since she was able to get it all off.

Then I joined a new Endo study that seemed promising. It was for a new drug that was supposed control pain in a different way. I was hopeful. But in all of the screening and tests they did, I had an abnormal PAP smear with precancerous cell on my cervix. I was disqualified from the study. And had a biopsy which thankfully turned out ok.

My last laparoscopy was 2 1/2 years ago. I felt good the first year after, with the exception sciatica that continued. But since then, I have suffered terrible all-over body pain, intestinal problems, nausea, unexplained vomiting, Reynaud’s,   abdominal bloating, nose bleeds during my periods, and a pain in my shoulder/ collar bone area that was at first misdiagnosed as Pleurisy. This pain occurs mostly with my periods but also comes and goes throughout every month. I have all the symptoms of Diaphragmatic Endo and my new GP believes that is what causes the pain after several xrays and scans and labwork. I have been taking pain killers on and off now for 4 years. And now for the past year, I have been taking Tramadol on a regular basis. My Dr suspects I have Fibromyalgia, as the pain I have is widespread, chronic and often debilitating. It takes me hours to get moving in the morning. I also have chronic sinus infections, yeast infections and UTIs again. I developed reactivated Epstein Barr in the summer and suffered for weeks with infections and mono-like fatigue. I have also had BV infections a few times since.

Recently, I have had pain, severe bloating and strange pink discharge again. Another ultrasound, but nothing significant showed up. The new GYN says it’s like tiny Endo adhesions. He recommended Lupton shots or an IUD. I said absolutely not. I have no interest in being a guinea pig again. I have started taking daily supplements to combat the infections. I am seeing a chiropractor for all of my sciatic and back pain. And continuing to forge ahead. I thank god for a boyfriend who is understanding and supportive, especially when we have sex and it hurts so much sometimes we have to stop.

I am grateful ( in a bitter sweet way) for my dear friend who suffers Endo worse than me and is a daily support for me. She had a hysterectomy that was never necessary because her Endo is actually colorectal. She also suffers from hypothyroidism, fibromyalgia, and allergies. She can no longer work full time. She and I are constantly searching for news on Endometriosis waiting for something monumental. Waiting for a huge break through. We are in our 40’s and feel forgotten.

We hope someone will listen, that the medical and scientific community will help us and help all the young girls that will become women with endometriosis. Thank you for reading this.



Endometriosis to me means that I am conflicted. When I want to have sex, on one hand I want to feel close to my partner and on the other I am aware of the pain I am about to endure. It means even though I’m on the pill when my period comes I am going to need to be home as often as I can so I can get to a bed, floor or couch when I feel like I’m going to faint from the pain. It means I’m not as energetic as I once was and sometimes I just need to stay in bed all day. It means being that annoying person in the restaurant asking what’s in the sauce, and to take out certain things because I need to avoid inflammatory foods. It also means that I take care of my diet more than ever and actually feel good. I avoid saturated fats, refined sugars, wheat, caffeine, soy products, preservatives and chemicals. Natural foods help keep it under control, which gives me my sense of power over my body back. This doesn’t give me complete control but any feels like a blessing. I exercise for the same reason but I don’t have the energy to do as much as I used to and I don’t have the pain tolerance to withstand the pain that sometimes comes with things like running or lots of bouncing and movement.

Explaining my diet is frustrating because it’s not vegan, or paleo, or vegetarian…it’s damage control! Being in pain every day is frustrating because I am constantly on the verge of tears and talking about it with GP’s is frustrating because they don’t know enough about it.

Endometriosis has come with depression, frustration, lifestyle change and the need to develop skills of adaption. However, to adapt means to accept, to accept means to feel content, feeling content leads to happiness, which eventually balances out, the frustration, the depression and the pain so it’s all manageable. I’m forced to manage my symptoms, my body and my mind and that has led to much more care and mindfulness towards myself than I ever gave before.


The first I recall hearing about endo was in romance novels, which I started reading about the same time I started getting my period, at 11. The heroines in the book would either be unable to conceive, or told they wouldn’t. Beyond that I had no understanding of what endo was. I was the youngest of 5 girls, and I’m pretty sure heavy periods were just part of life for all of us. I had no issues conceiving, had a daughter at 22 and a son at 23. Rapidly gained 100 lbs, and was miserable physically and mentally for the rest of my 20’s. Had gastric bypass at 31, and got my life back. Had the self confidence to deal with some of the physical issues I had suffered from for years. Had lots of dr appointments, tried to deal with the painful periods and leaking urine. Uterine ablation, urethral sling, nothing worked quite right. So many appointments, not a single mention of endometriosis. A laparoscopic surgery may have been offered, but I had felt like a hypochondriac for so long I thought that was crazy. I got my dream job as a police officer, and tried to live a normal active life as a working wife and mother. I couldn’t do it. Eventually the ovarian cysts got bad enough I agreed to have one removed. And it was me who suggested she take my uterus while she was at it. It was not the quick lap she had planned, it was many hours and a lot of blood loss. When I woke up the dr told me I had endometriosis. Not knowing anything about it I asked her how long she thought I had it, and she said she figured as long as I had been menstruating.

29 years.

29 years of skipping school to take naps before work. 29 years of awful bowel issues that I never imagined weren’t somehow my fault. Sex with my husband that started as teenagers so it felt like it felt, I didn’t know any different. I always thought it was because I was short, it must be hitting my cervix and that’s why it hurt and would sometimes bleed.

Things got so much worse after my hysterectomy. The remaining ovary got angry. I tried 6 months of Lupron, every day was lived in a depressed fog. A new dr who took out the remaining ovary then wouldn’t talk to me. Repeated bowel obstructions. Hip and back pain. Bladder issues.

The worst, realizing my 21 year old daughter has alarming symptoms. But there is hope. I have surgery scheduled at CEC, and have found a local excision specialist for my daughter. So we will fight on, with so much more knowledge, and the heart to share it.


I was diagnosed with a very severe case of endometriosis on October 31st, 2012 (I was 23) however I had serious symptoms since the age of 10. I had 4 major surgeries including a total hysterectomy w/ bilateral salpingoophorectomy, a pre-sacral neurectomy, my appendix removed, a bowel resection, adhesions and endometriosis removed, ruptured cysts, etc. My last surgery was on August 25th, 2015 and I had many complications afterwards such as severe serum sickness, allergic reactions to medications, etc. I am currently planning my 5th surgery and I can’t even afford it! Since 2012, I started a FB support group online called “Endometriosis Online Support Group.” My goal was and still is to fight End together, raise awareness and find a cure.



I began with “extreme pain” at age 16 (menstrual cycle began at 12).  I continued every month thereafter in pain, through high school and my job and no one understood it at that time.  I wasn’t even actually “diagnosed” with Endometriosis until the age of 21.  Even at that time and with having a female doctor; she suggested the pain was everything but, including gastrointestinal.   When I finally pushed her to perform a laparoscopic surgery.  I still remember her saying: “Oh, you were right all along, you do have Endometriosis, I guess you self-diagnosed yourself correctly”.  I knew from that moment on, I would have to be my own advocate for medical help.    Unfortunately in my experience, it never got better; doctor after doctor with various remedies of help, yet nothing worked.  I was given everything from prescriptions of bcp’s to muscle relaxers and pain relievers, suggestions of cooling/heating pads and warm baths, diet/exercise advice to having a hysterectomy in my 20’s to rid the pain.  I was trying so many different methods and nothing was working, plus I wanted a child/family, but wasn’t ready at that time.  * I got married in October 2003’ and finally had my son in September 2005’. *  In between that time, I decided to go with a few rounds of Lupron.  I was warned by the doctor, that this was a drug given to cancer patients and not a drug to be taken lightly, because it would also push my body into a pre-menopausal state, but that I would be rid of the extremely awful and excruciating pain I was constantly experiencing.  I decided to weigh the pros and cons and did receive the shots of Lupron.

This was the 1st time in my life, that I did not experience pain every single month.  However, my experience did not come without any consequences.  I obtained side effects from this high dosage-drug including: daily days/nights sweats, constant headaches, nightmares and intense moodiness.  Looking back, it probably wasn’t the best alternative for me, but it was one I decided to take, because I was so sick of the pain I was in.  I also had a 2nd lap. surgery performed in 2004’, with high hopes of conceiving very soon.  I was also given a prescription of Clomid to up my chances of pregnancy, because this disease affects every part of your being.  Although I got the positive pregnancy result in early 2005’, I knew this too was going to be a rough road with everything I have experienced thus far.  It was never an “easy” pregnancy from the get-go; I struggled to get pregnant, then as I was, I had constant morning sickness and developed Preeclampsia towards the last few months.  I was constantly monitored by my doctor 3 days a week, for weeks and then everyday for weeks, until finally I was hospitalized, because of the Preeclampsia potential of hurting my baby and I.  I was then placed on bed-rest and in this time, my employer was everything but caring or understanding.  In fact, I was told by the employer that they didn’t even believe me that I was sick or diagnosed at all.  When I cried to my doctor about such, she was furious and contacted the employer herself.  She was only the 2nd doctor that I felt, I finally had on my side, that got me and the disease I was placed in.  After having our son, the pain came back ten-fold with the Endo. and I was asked again about receiving shots of Lupron.  At this point, I denied the shots because after all, I had been told by medical staff and women online that after having a baby, the Endo. pain would go away forever.

Well, obviously this is a myth and couldn’t be farther from the truth.  I constantly just lived with this pain and dealt with it the best way I knew how; by crying, holding my stomach, resting, warm showers, drinking hot tea and taking plenty of Midol (the only over-the-counter medicine that seemed to work for me).   In 2009’, a different female doctor performed yet another lap. surgery, this would be the 3rd and final one I had done.  My husband and I wanted more than 1 child and tried all along, but it never happened.  I was told at this point that the Endo. had spread all over; not just on my female organs, but on my liver, bowel, kidneys and other organs, many of which could not be reached by a laser and taken off.  I also was experiencing great pain on my left side and had ink run though my ovary/tubes.  The pain was unbearable and soon come to realize my left tube was completely blocked by Endo./scar tissue, bringing my chances of conception to a 50/50% chance.  Yet again, I found myself in tears and knowing this is why my health has been this way all along.  I gave up on myself after this diagnosis was given.  I was blessed to have our adorable, cute and one-of-a-kind son.  Why did I need to keep pushing the envelope, when it took so much just to get here?  I finally decided enough was enough and no more doctors, no more medicines and no more false hopes.

I continue living with this pain that I was given, for whatever reason and dealing with it the best ways I know how, but that’s what I decided, just to live with it!  I have tried in the meantime to create an “Endometriosis Walk” in my local area to no avail.  I contacted the Endometriosis Association by email in Milwaukee, WI and was given some steps on How to create a Walk, but so much is needed and involved, I just never knew how to go about it the correct way.  I also contacted our local government and did receive a response back by Tammy Baldwin on much needed research into Endometriosis in our areas.  She sent a letter of agreement, but stated that funds for such were low and basically not a top priority at this time.  I wish it was and I wish more people would get on the bandwagon with this.  I am not the only one suffering and won’t be the last.

When are doctors and medical staff, research and government going to take us seriously?  My name is Tina and I am a 40 year old woman with Endometriosis!  Please spread the word and help find a cure.


My first experience with pain was my first cycle. I was 12 and I was at the mall with a friend. My “stomach” began to hurt very badly and I ended up vomiting quite a bit that evening. I woke up the next day and I was having my first period. Back then, I only had pain on an occasional basis. I remember being 14 or 15 and feeling so awful. I kept vomiting, I could barely stand and I was crying and begging my mom to do something. Now, I can admit that I have always been a tad dramatic. So, my mother called me a drama queen, gave me Tylenol PM and put me to bed.

My first gynecological appointment was at the age of 16. I discussed the pain with my new doctor and he prescribed birth control that he said was made to lesson cramps. Fast forward to my sophomore year of college. By this point, I’d learned tricks to help lessen cramps a tad, but my go to was still Tylenol PM. In January of that year, I started my period but after two weeks, it was still going. I lived about 4 hours from my gynecologist so I called and spoke with the nurse. She told me not to worry that it happened sometimes and to call back in a week if it was still going. So, I called back the next week. We spend the next four weeks talking every other day. I’d begun losing a drastic amount of weight, I was exhausted all the time and the pain was becoming so severe I couldn’t function. I was told that the second I stopped bleeding I needed to get in the car and drive home for an appointment. I stopped bleeding on a Sunday evening. I called the emergency line and was told that I would have an appointment at 8am the next morning. Unfortunately, the doctor was unable to give me an exam. The tools were not able to be inserted and even a normal check with his hands was not doable. My body refused to cooperate. We had a long discussion about what to do. He listed off about 5 different reasons for my pain but said that he would not diagnose me with anything officially. He said anything he found would affect my insurance later in life. He started me on the 3 month without a period birth control, gave me Darvocet for pain control and wrote a doctor’s note excusing me from any and all classes I would miss that semester. I started my period again 2 days later and it continued for another 2 months.

After that flare, I had no issues outside my period for many years. I eventually lost my insurance and graduated college at the height of the recession. I was unable to find anything but part time work without insurance. I bounced from free clinic to free clinic and always asked about cramps but was told it was not a big deal. During this time, I got pregnant and had a miscarriage at 12 weeks. I got married at the age of 25 and found a job that offered insurance. I was so excited that I found a doctor right away and had an appointment scheduled for the day after my insurance went into effect. I continued to see this doctor for three years. In that three years, my husband and I were unable to conceive. And, at almost every appointment, I asked about painful periods and painful sex. I was prescribed 800 mg acetaminophen and was told to tell my husband “don’t try to be a rock star in bed”. We had a multitude of fertility testing done, but a reason why was never found. Eventually, the inability to conceive caused the end of my marriage.

I remarried 2 years later and at my first doctor appointment made sure to let my doctor know about the pain around my periods. The pain had been gradually increasing in time length. Where the pain had previously just been during the period, it was now present for over a week before, during the entire time and for a few days after. He immediately did a different exam, told me he believed I had endometriosis and sent me to schedule a laparoscopy. While I was in the recovery room, he informed my husband that there was disease “everywhere”. He sent me home and told me things should get better soon. But, they didn’t. At first I thought I had caused a problem by doing too much after surgery but 4 months after surgery I was in pain daily and it was just getting worse. And, there had been no decrease in period pain. So, my doctor told me to pick between Lupron and Danazol. I chose Lupron because I was worried about my voice changing with Danazol. But, mostly, I did it because my husband begged me to. I had not worked since we married and he thought it would be the perfect time to try something new out. It was the worst decision I’ve ever made. The pain skyrocketed. And, in addition to that pain, I lost the ability to use my hands most days and had difficulty walking from pain and fatigue.  After 3 months, I refused to take it anymore.

Although I had discussed the drug at length with my doctor, he just shrugged and said that most women stop taking it for joint pain. I was furious. It has been a year since my last shot; my hands still have issues and I cannot walk more than 100 yards without either falling, getting dizzy or needing to sit down. My doctor just keeps adding meds for me to take.

Currently, I take 21-25 pills a day.

I was finally able to meet with a specialist in Phoenix, AZ. I was diagnosed with Pelvic Floor Dysfunction and was encouraged to follow up with another doctor to determine if I had Irritable Bowel Syndrome.  We discussed my options and set out a plan. My husband is in the military and we are about to move. Once we move, I will start seeing a new doctor  (found by the specialist in AZ), begin pain management and try to find a pelvic physical therapist. If all goes according to plan, I should be able to have surgery some time in the next year. In addition to excision surgery, my doctor wants to give me a pelvic floor botox shot and has offered to do a presacral neurectomy. But, has warned this may have serious side effects.

In the meantime, I am unable to work, have lost contact with most of my friends because I am unable to leave the house very often, and I spend a lot of time high from pain medication. I react very strongly to medication so I have to be very careful what I do while taking them. I cannot drive, have a difficult time cooking (I caused a kitchen fire twice)and cleaning, cannot enjoy any hobbies I used to love (some from the meds and some because of the lingering Lupron side effects) and I am having serious issues with concentration and memory. I am suffering from anxiety and depression because I hate what my life has become and I am afraid it will never get better. All I have ever wanted in life is to be a wife and mother and have a job that makes a difference in the world. It’s hard to have a good marriage when my husband spends so much time as a caregiver, adoption agencies have told us we are not candidates because of my current pain issues and I haven’t been able to work in a very long time. This is not where I thought I would be.



I would like to share my story of struggle with Endo for 19 years before diagnosis.  My monthly cycles started when I was 14 years old and right after starting my cycles would last 3 weeks every month. I was taken to the Dr about the problem and was prescribed a month supply of birth control being told it would correct the problem and be normal. The birth control did work and no longer took any after that. In 3rd grade I slipped and fell on my face hitting cement causing a concussion, fracturing my front teeth and my nose. I was able to make it to the school office and when I got there I passed out, the paramedics discovered I had a heart murmur. My family Dr told me being active in sports would make it go away.

I did every sport I could but never could just stick with one sport before exhausting myself to the point that I could no longer perform. After I turned 16 years old my cycles had become really heavy to the point of bleeding through my clothes even with wearing layers just in case, so I wouldn’t be embarrassed or teased. This was also a time I went into the foster care system because my parents were abusive, each in there own way. By the time I was 18 years old the cramping pain was becoming hard on me and couldn’t even make it to my room and the house rules of my foster family home was to be a part of the family, do chores and at that time was now working for my foster mom with child care so staying in bed or resting was not an option.

Over the counter pain pills didn’t ever really work good enough, but my foster mom saw me as over reacting, that it was normal and made her angry I couldn’t help do my part and job in the home. She would tell me to go to my room but couldn’t make it there and no one would help me. It seemed like every monthly cycle was like getting the flu. Stomach upsets all the time, constipation issues but when getting nervous or anxiety about something the opposite would happen. Fevers happened often through out my life, I was told my first year of my life I had sinus and ear problems with fevers of over 100 that lasted for hours and usually only at night till early morning hours, she said the Dr didn’t know what was wrong. My temp is normally 97.3 and 98.3 feels like a mild fever to me.

Every monthly cycle I would get a fever. In my 20 I was told to try yams yeast on my abdomen to help but just trying to rub it on my skin was so sensitive and painful I would be crying with no relief. My foster mom and Dr’s figured it was just associated with the abuse I went through and assumed I had been raped and just don’t remember. Things were bad but I know that did not happen because I feared to sleep at night and have a superb memory. Still a virgin I feared a sexual relationship for many reasons. After turning 21 my foster family had lost the house and we became homeless sleeping in a camp ground for 6 months. In a tent with blankets I was freezing every night with little sleep, when I felt I needed to urinate walking to the restrooms alone I feared until day light only causing me more pain. Once we were back in a home the problems got worse again and moving every 6 months was hard on me with my foster dad and my sister moving everything our selves and all 3 of us only getting injured every time.

Among the constant moving I was in the search of a job and when I was 24 I got my first retail job. I was so happy that even in pain I kept on and worked faster and better than most setting high standards for all my co workers to race me to the best full time potions. Before being hired I noticed my heart rhythm was not right and would take my pulse and my heart beat would stop for a second or 2 then start again. This concerned me but hadn’t had insurance for years and is why getting insurance meant so much to me. Many times in between moving from one place to the next all 8 of us were sleeping in our vehicle and hotels. With cramps, sitting sleeping like that or standing for to long only made the pain worse and couldn’t ever get sleep. I would go days with out eating simply because I had no money after giving it all to my foster parents and working on an empty stomach meant less pain. Above all odds my hard work brought me to a full time potion and now had insurance. Cardiologist diagnosed me with an early beat, I refused medication and was told it was nothing to worry about. Shortly after that, one morning at work with a huge abscess on my face, I started to over heat like I had never before. I started to feel ill and knew I needed help. The store was not open yet and I was working on scanning clothes at the front of the store, I felt like I was going to pass out so I crawled my way back to the office to let someone know.

After sitting and having to wait 30 min for the manager to arrive to let me leave the pain was gone, I felt high and was dripping in sweat, I was told I had looked green all over but then turned to pale. My foster parents took me back home and waited another 30 min or so longer before my foster mom said that she will take me to the dentist. When we got there he screamed and yelled at her to get me to the hospital. By then my skin was turning red from my face down to my chest just inches away from my heart. They told me any longer and it could have killed me, I had a jaw bone infection due to a impacted wisdom tooth. Soon after that my irregular heart rhythm was gone. Since that time my monthlies became worse where over heating with pain brought me to the point of passing out at work and at home. Before dizzy and faint and not able to walk from the pain was now drenched in sweat and dropping to the floor before passing out and causing injury. I went to the Dr about how much worse my monthly had gotten and so was offered the Depo shot to stop my period.

With already feeling bloated and squeezed on the inside, this only made that worse but less bleeding made that part of my monthlies not as bad. When I was 26 I became sexually active and things got worse for me, constant UTI’s, blisters and itchy stinging discharge, and yeast infections, yet had no STDS.  After one day at work I was moving a box and injured my back, still unknown how. I couldn’t hold my arms above my head anymore with out pain and strain that lead to numbness and tingling. The feeling of knives stabbing in all directions in my back and needles poking me and sensation of bugs crawling under my skin. I had to quit my job and moved in with my boyfriend. I was able to heal for once and get sleep for the first time in my life better than ever. He did not know of my other problems and Had fear and anxiety about telling him. After injuring my back I started drinking hard alcohol with red bulls to keep me going.

Alcohol I rarely had before and usually gave me this strange sensation of pain in my groin like I needed to urinate right away. Alcohol started to become a good numbing affect, as long as I could drink enough with out vomiting and the right kind I could with. We decided to move to AZ and at the wrong time of year, we learned the hard way. Had no AC in over 100 degree temps, I got so hot my face was beat red, we were in luck a gas station and clouds above us trying to form a storm. Walking into the store it felt like I was falling through the floor, I grabbed a water and ice cream sandwich and we sat out in the wind, we were lucky. I was a little over average weight but not over weight, but after 3 years I became border line anorexic.  I only had alcohol in the evenings and maybe one or 2 in the afternoons to keep things clean and tidy and animals taken care of but didn’t drink everyday. My boy friend is a disabled vet, so doing what I can for him has been something I wanted to do despite my own pain, I got him more than he realized but still wanted to be there for him. I had to cut back and stop drinking any alcohol even though that meant I had to just deal with the pain.

I still only took over the counter pain med because I didn’t like how pain killers affected me. They would cause my ears becoming so sensitive to sound, made it difficult to function and concentrate as my skin became sensitive too and even felt like I would forget to breath. That also meant by quitting alcohol that sexual intercourse would be more painful at times and certain potions. I started to lose interest in sexual intercourse. I went to the hospital again and they said I had a hormone imbalance. I didn’t have insurance so seeing a Dr for those who don’t have insurance would only prescribe pain killers and not find the problem.  I started to connect why I had so many UTI’s and blisters and remembered back to when I had to wear a heart monitor for a week and got blisters all over my chest, it was latex, I was allergic. Being under weight had made my periods last 3 days moderately heavy but wearing a tampon made things unbearable.

Over heating with sweat dripping off of me all over having to strip all my clothes off in severe pain not able to stand or crawl anywhere with out sliding all over from the sweat. I wanted to shave all my hair off, so hot and hair touching my skin drove me to high irritation. Hands would get cold as my abdomen and lower back felt extreme heat, my hands were cold enough to help. Night sweats and pain daily was reaching extremes. Painful urination and bowel movements. Have allergy asthma, IBS and sensitive to chemicals & light. My life was chaos. I went to a specialist, at first I didn’t acknowledge what she said she thinks I had never had heard of it. She prescribed me birth control, didn’t help, the lumps in my breast got huge & painful. Went to the hospital 2 times after that. Went to another specialist and she wanted to do surgery, after months I agreed to it & the biopsy came back positive for Endometriosis & in images of my surgery I also have small cyst all over one of my fallopian tubes not related to Endo. That was 10 months ago at the age of 33. Nothing removed or visible in abdomen and biopsy on ovary is where it is now. I have the Mirena in me and it has helped not having the worst of episodes but feel pain daily still but better than before.

I don’t take pills or drink, I deal and let my own endorphins help me & rest more to help ease pain. It is bad news and I am still trying to accept it while at the same time feel validation that it wasn’t all in my head or overreacting. Reading about others I feel connected and not alone anymore.


From the time I was 11 years old and got my first period, it was intensely painful.  I spent years living like this thinking it was “normal” because I was a woman and that’s just what we have to deal with. As the years went on the pain became worse and then started to affect my bladder and bowels. When I was 24 years old, I had what I thought was “just another bladder infection” but this time with intense pain on my left side and back. I was sent for a CT scan thinking I had kidney stones.  What they found was a very large ovarian cyst on my right ovary that needed to come out surgically.   A few weeks later I was in surgery, and that’s when I was diagnosed with endometriosis.

Nothing about this awful disease was ever discussed with me, I was simply told to start continuous birth control. When this didn’t work, I was then given a shot of Lupron. No side effects or alternative treatments were ever discussed. Months later when I was in the emergency room with severe pain on my right side again, another very large cyst was noted on my right ovary that required surgical removal. This was removed in surgery a few days later. 10 days after my surgery I was in debilitating pain at home and called my husband to bring me to the hospital right away. I was first dismissed as being a drug seeker, and told that my pain was “normal” after a surgery.  I was finally able to speak with an E.R. Doctor who ordered a CT scan that showed a 10 cm abscess on my right ovary. I was admitted to the hospital and stayed there for a week with an infection that did not subside, so again underwent surgery for removal of this abscess.

Months after all of these surgeries my pain was back with a vengeance.  The decision was made to remove my right ovary. Shortly after this surgery, my surgeon moved to another hospital and my care was transferred to a female OBGYN.  What I thought would be a wonderful change (she was a woman, after all), ended up being a disaster. After multiple consults with urologists after which I was diagnosed with IC and underwent multiple surgeries (hydrodistention, urethral dilation, and Interstim placement) I was still in significant pain daily. My new OBGYN surgeon reluctantly agreed to do another surgery to look for more endometriosis.  The disease was always found at the time of each surgery, although I experienced little relief each time. My relationships, work, and bank account began to be affected negatively because of this terrible disease and multiple surgeries. After a few more years of enduring pain on a daily basis and being expected to simply live this way for the rest of my life, I made a phone call to my doctor. Her return call changed my life. After explaining all of my symptoms, she said “Have you looked at your chart?  You have had multiple surgeries already and shouldn’t be in pain. You have a mental problem and need psychiatric help.”  I was stunned, shocked, and humiliated.  I knew this was not in my head, but where was I to go from here?  Days after this awful conversation I was accidentally included in a group text message among my coworkers in which they were discussing my multiple absences due to surgeries and were essentially calling me crazy.  Not only was my body failing me, this completely destroyed my spirit. I turned in my 2 week notice at work the following day and a few weeks later my husband and I made a big move to be closer to my family and the city I grew up.

Because of the awful way I was treated by my surgeon I decided I no longer wished to receive care for my endometriosis. After 3 years of no treatment and not seeing any doctors, I couldn’t take the pain any longer. I found a new doctor in the new city of which I lived and was told he was an amazing endometriosis doctor. At my consult endometriosis was seen on ultrasound, along with multiple large ovarian cysts on my one remaining ovary. I underwent surgery 2 days later for removal of endometriosis and cysts.  Stage four, extensive endometriosis was discovered in my entire pelvic region.  I had some pain relief for approximately 6 months. Now what was I to do?  Was this the way my life would be?  An endless line of surgeries with very short windows of relief?  I was in despair, and again ignored my symptoms and did not go back to see this doctor again.

Fast forward 3 years down the road, again, and the pain had become unmanageable.  I established care with a regular primary care doctor and was simply given the option of going back on birth control.  I refused this option as it had already failed me several times in the past. I got home from that appointment and started researching endometriosis online. That’s when I came across Nancy’s Nook Facebook page. And I credit this page for saving my life.

I learned that excision surgery is the gold standard for removal of the disease, a surgery which I had never had, nor heard of. I could not believe after all of the doctors, appointments, and surgeries I have had in the past that this was never mentioned as an option. A referral to a specialist was never even hinted at. The thousands of women’s on this page pointed me in the right direction- to Dr. Heegaard in Minneapolis, MN.

I saw Dr. Heegaard for consultation in December 2015 and after reviewing all of my old medical records and doing his exam, the decision was made to proceed with excision surgery along with hysterectomy and removal of my remaining ovary and tube. I had surgery 3 weeks ago and although I have a long way to go in my journey, I am confident that I will get there with my new doctor, my life-saver. I owe my life to him and to Nancy’s Nook.

It is appalling that it takes multiple years and multiple doctors to even get a diagnosis of endometriosis. It disgusts me that the majority of us women with endometriosis have been treated poorly by friends, family, coworkers, and even the doctors that we are supposed to trust. More needs to be done to bring awareness and education to this awful disease that robs us of our relationships, careers, fertility, and quality of life.  I hope that this will reach even one person that can relate and then seek quality care.  This is why I am choosing to share my story.


My story is not at all unique or extraordinary. As an active member of a large patient education group, I hear plenty of stories that strain incredulity, but mine is completely believable to many women who are endometriosis patients and it’s believable because it’s common (though no less important).

I did not know about endometriosis until after 40 years of age, when I stumbled into diagnosis. That part was accidental but I suppose inevitable. If it had come sooner, my life would be immeasurably different at mid-age. I might have had a rewarding career and thriving children and a wide circle a friends. This isn’t me lamenting what’s passed me by, this is me standing side by side with all the other women who watched as their friends and family participated in the business and pleasures of life, all while wondering why they felt incapable and crippled so much of the time.

My life is wonderful and I’m grateful for the people who make it so. I am grateful beyond words for my kind and loving husband of 18 years; he’s been at my side even though each and every one of those years included unexplained miseries and stressful circumstances. I am content and fulfilled and happy, but my life is still broken in many ways. I know I am privileged to be able to consider myself cured, but I am still putting the pieces back together, still carrying some baggage.

Again, my story is common. The vague set of symptoms that nagged me were characterized as gastrointestinal complaints and as a result, I spent lots of time in the offices of well-meaning doctors who knew little of endometriosis. I had my first colonoscopy in my late 30’s. I spent my 39th year on a gluten-free diet because Celiac was suspected. Looking back, I can see that one or two questions could have saved doctors the time, insurance the money, and me (and my husband) the pain and loss. But the doctors didn’t ask and I didn’t know that my painful menstruation, pain with sex, and unexplained pelvic pains could (should) be considered in the context of my more seemingly urgent bowel complaints. I didn’t understand the possible connections until much, much later.

As a younger woman, my physical distress was often attributed to an upset mental or emotional state and as a result, I feared being labeled a malingerer, a fibber, an attention-seeker. I felt those judgments often enough that I internalized them. Like so many others, I felt dismissed and ignored for years and even now, though I’m educated and empowered, I continue to live with those insults and injuries. Like so many others, I learned to keep complaints to myself because I feared dismissal and labels, and as a result, I facilitated the delay in my diagnosis. In the process, I folded in on myself. I folded in on my fear and anxiety and shame, and I settled into a profound sense of isolation. At the time, I thought I was uniquely alone, but I now see my experience as part of a whole; I see that though I felt isolated, I was not alone. I am a member of a 10,000 patient education group and I can see that our stories are so much the same, even when they are different.

I learned to keep my complaints to myself and over the years that took a toll on my career, my sex life, my personal relationships, and my self-esteem. By the age of 39, I was experiencing episodes of intense and frightening pain and at 40, I was hospitalized after seeking help in a local ER. I had had these episodes before: cold sweats, intense nausea, a twinge that quickly escalated to unrelenting searing rectal and LRQ pain — pain that could only described as insertion of red hot knives. I coped with Advil, lots of cursing, pacing the house, heating pads, hot baths, and nights on the cold bathroom floor. Usually, after an hour or so, the pain would return to a less terrifying insistence, but this time, the searing pain would not go away and my husband insisted we go to the ER. After all the usual exercises, the questions, the exam, and the common suspects (pelvic inflammatory disease, STDs, appendicitis, diverticulitis, so on), they decided to admit me for high white blood cell counts and unexplained pelvic and rectal pain.

They found an ovarian mass on CT scan and ultrasound, but I was told it was normal and would resolve on its own. Their main concern was the abnormality seen in my bowel and they thought for three days about things like ulcerative colitis and Crohn’s and as a result, I saw a parade of gastroenterologists and was told to follow up after discharge. I followed up and was told by the GE that there was nothing wrong with my bowel. Deflated, I dressed and waited for the PA to return to the exam room. She was the first person to ever say the word “endometriosis” to me and I was grateful enough to later send her a thank you note.

After months of watchful waiting with medication, I pleaded with the gynecologist to send me to someone who could help me with surgery. I had surgery in 2012 to remove a large endometrioma from my ovary and at that time, the highly-regarded fertility surgeon ablated all the endometriosis he could identify. I got good relief from my constant pain and debilitating bowel symptoms until about one year later, when the bowel symptoms gradually resurfaced. After another year, I started experiencing the old familiar lower-right quadrant pains that had formerly sent me to the ER on many an occasion.

My symptoms became so disabling that I often could not leave the house. I cancelled appointments and social engagements. The bowel symptoms and nausea became so pronounced that I could no longer travel or do any of the things I love. My fatigue was crushing, my spirits were low, and my anxiety was high. In short, my quality of life was terrible and as a result, my sense of isolation and hopelessness grew. Over 80% of endometriosis patients suffer from depression and/or anxiety and if you’re one of them, it’s easy to see why. We often feel hopeless because the overwhelming majority of options we are offered prove ineffective. Our families don’t understand and our doctors lack answers. Even once we learn about how skilled excision surgery can restore hope, the obstacles to more specialized care seem insurmountable.

The only way I could afford to hope for better was to convince my insurer that had I exhausted the in-network options and required something better. I saw the regional specialists who told me that I had IBS and gave me a script for an anti-depressant. I had had prior surgery by a highly-regarded surgeon in my region, I tried various drugs, and I altered my diet. I suffered for far too long and I knew that the only hope was to convinced my insurer that continuing on that path would only waste more of their money.

With the help of a patient education group called Nancy’s Nook, I was able to find a doctor who understood what was at stake. I found the Center for Endometriosis Care in Atlanta and I felt like I could finally dare to hope for better, for once, for a change. I am now fully recovered from excision surgery and I know that the success of my surgery is because of Dr. Sinervo’s exceptional skills and his knowledge of this disease. My gratitude to the staff of the CEC and Dr. Sinervo is equaled by my gratitude to the community of women who volunteer their time to educating others about excision surgery. Because of their dedication, I have the opportunity to put my life back together. For the first time in almost two decades, I can see a world of possibilities rather than a life negotiating limitations. I hope the same becomes possible for an ever-increasing number of women.


The Lucky One – an Endometriosis Story

Normally, I wouldn’t call anyone with an endometriosis diagnosis “lucky.”  Sometimes its hard to think of myself that way.  I’ve been through countless hormone treatments, 3 different surgeries, and have lost my fertility because of this disease.  In what universe am I “lucky”?

My mother was diagnosed with endometriosis at 21, after suffering for years with what she thought were “normal” cycles.  Because of her experience, she knew what was normal and what was not.  When she had me and my sister, and we started approaching puberty, she knew the signs.

I started menstruating at 13.  Shortly after, my cycles were becoming increasingly difficult for me to handle.  I was bleeding a lot, for many days longer than I should.  I was in a significant amount of pain.  I thought it was “normal”, but Mama knew otherwise.  She took me to her GYN’s office at 16 years old.  I was a modest teenager, absolutely terrified of whatever exam was about to be performed, so much so that I had a small panic attack in the office.  The NP took pity on me, and because of my mother’s diagnosis and my symptoms, she wrote down “suspected endometriosis” in my chart and put me on birth control.  Most doctors would have written me off as a dramatic teenager.  Most would have told me it was in my head.  Most would have insisted on an exam.  This one didn’t.  She listened, she knew.

My mother knew.  I was lucky.

For the next two years, I played birth control roulette.  I wasn’t very good at it.  It took years to find a birth control that didn’t trigger migraines and left me useless and bedridden.  I ended up back on migraine preventatives and strong medication for when I had an episode.

Periods in check.
Migraines in check.
Off to college.

Throughout college, I continued on my one birth control that seemed to do the trick, and kept up with my daily migraine protocol.  Miss either one of those, and there was hell to pay.  I was keeping the status quo, though.

In 2010, before the establishment of the ACA, my insurance company decided that my one Holy Grail of birth control was no longer a preferred method of treatment, and I could no longer afford it.  I thought that maybe my endo was in remission, maybe it wouldn’t be so bad.  I could just get off birth control and “tough through it” until my first Big Girl job came through and maybe my new insurance wouldn’t be so ridiculous.  Who are men in suits at an insurance company to decided they know better than my doctor what works for my healthcare treatment, anyway?

For the first month or so, it wasn’t bad.  I was able to preemptively manage severe cramping by rotating ibuprofen and acetaminophen on a strict schedule.  Until I wasn’t.  Until I was bleeding for two weeks or longer at a time, crippled with pain and passing huge clots.
I was engaged to be married to my wonderful husband in late 2011.  My endometriosis had clearly gotten out of hand, and I wanted to make sure I was going to have an enjoyable marriage, and enjoyable honeymoon.

I found a new doctor, with excellent reviews, covered by my new Big Girl insurance, and wasted no time in treating endometriosis as best as he could.  Within a month of being his patient I was on the operating table having a significant amount of endo “burned off”, along with a D&C for uterine polyps.  Most doctors wouldn’t have acted that quickly.  Most would have thought I was making a big deal over nothing, and would have wanted to “observe” my response to more hormones before operating.  Not my doctor.  I was lucky.  After surgery, he gave me and official endometriosis diagnosis.  He didn’t “stage” it, other than to say:  “Wow.  There was a bunch.  You weren’t kidding.  It was really rough in there.”  He then gave me two options:

Get pregnant NOW, or start an insanely intense regimen of hormones suppression to keep the endometriosis from growing back.  I was still engaged, the wedding was two months away.  We wanted to be married first, learn to live with each other before bringing a child into the mix.  Hormone suppression it was.  After 6 months, that form of hormone suppression was no longer working.  My endometriosis was coming back.  Bring on the Depo-Provera shots.  After 6 months of that rollercoaster, it was no longer working either, and it was very apparent that my endometriosis was back in full force.  My pain and bleeding was getting worse with every month.

With my doctor’s ultimatum (“It’s now or very likely never”), we decided to actively start trying to get pregnant in January of 2013.  For 6 months, I didn’t have a period.  I had intense daily pain, but no bleeding.  Its really hard to get pregnant when your cycle just disappears.  My body had been on synthetic hormones for so long, it literally didn’t know how to behave without them.  After some consultations with my Naturopathic cousin working with my GYN, I was able to reboot my system through some diet and lifestyle changes, with very specific supplements, as hormone therapy didn’t work anymore.
Three months of Clomid (deemed “the devil’s drug” by my husband) and three months of Femara, my progesterone levels were non existent.  I wasn’t ovulating.  And on the off chance that I actually did ovulate, my levels were so bottomed out, there was no way an embryo could survive and be sustained by my body.

Yale University has recently proven that while women with endometriosis have different levels of growths, pain, and organ disruption, all of them have one thing in common:  a struggle or even an inability to produce progesterone.

My doctor knew he’d reached the end of his expertise, and my needs were beyond what he could offer.  For that admittance of defeat, I am forever grateful.  He could have been stubborn, I would have trusted him.  He could have kept me on a crazy regimen of hormones that weren’t working.  Rather, to give me a fighting chance at having a family, he passed me on to an Fertility Endocrinologist (FE).  I know other doctors wouldn’t have done that.  Again, I was lucky.

My FE took a no-nonsense approach to our situation.  Because of financial constraints, we opted to try IUI first.  He skipped the usual beginner IUI medications (Clomid and Femara), as they’d done nothing but make my hair fall out in previous treatments.  Literally, I lost about half of my hair. Four rounds of IUI failure confirmed that we would need IVF if we ever wanted to be pregnant.  We knew my endometriosis was back.  By then, I’d stumbled across the Center for Endometriosis Care on YouTube of all places, and lost myself in the research and success statistics in excision surgery.

My husband and I had decided that if we were ever going to have endometriosis surgery again, we were going to Atlanta where I had an actual chance of getting it gone for good.  I spoke with my GYN as well as my FE.  Both gave me their blessing and encouragement as I sought a third opinion.  They helped in gathering my medical records and sending it off to the clinic in Atlanta, and offered assistance in any way that they could.  Most doctors wouldn’t do that.  Some doctors might even get offended that I was unsatisfied with my results with them.  Not mine.  I was lucky.

In 2015, I had my excision surgery in Atlanta at the CEC.  There is not adequate vocabulary in the English language to describe how thankful I am for each and every staff member I worked with.  From the lab techs to billing to the nurses and Dr. Sinervo.  The CEC made a really terrible diagnosis as easy as possible.  They listened.  They were on top of the latest research.  They worked with professionals from a variety of training and treatment methods, from homeopathic to the very latest in western medicine.  They gave me the opportunity to participate in research studies that were actively seeking a better understanding, and one day, a cure, for this rotten disease.

I woke up the day after my surgery (I don’t remember much from the day of) with a diagnosis of State II endometriosis, that had, in just 3 years, come back from nothing and spread to my intestines.  I left the hospital without an appendix, as it was so eat up with endo it was on the verge of rupturing.  But I also left the hospital with a <5% chance of having my endometriosis grow back.  I left Atlanta with a body that was a much healthier environment for a pregnancy to thrive.  I left the CEC with a fighting chance at a pain free life and hope for a family.  I left the CEC in remission.

I was lucky.

It has been almost a year since my surgery.  I am still virtually pain free.  Endometriosis has still jacked up my endocrine system to the point that I will likely never progesterone on my own, and therefore my only hopes of pregnancy are with IVF and a lot of progesterone supplementation.  I will always have this disease.  If either of the two blastocysts we have frozen end up being sweet little girls in the future, its incredibly likely that they will struggle with this disease, too.  But should I be blessed with girls, and should my daughters have endometriosis, they too, will be lucky.

They will have a mother who will fight for them.
They will have a father who will support them and believe them.
They will have doctors that listen to them.
They will have access to the best treatments available to them.
They will be educated on their bodies, and they will not be shamed into silence like so many others who have been told “its all in your head”.

My story shouldn’t be the exception to the rule.  I was diagnosed quickly, and had excision surgery at 28 years old.  I didn’t take me until I was 40 to get a diagnosis.  No doctor ever suggested a hysterectomy.  My doctors believed me, fought for me, supported me, helped me receive the best care I could.  My story should be the norm, but its not.  So many women suffer for so much longer than I did, with out the support system I have.  So many women cannot afford to pay the out of pocket costs I was able to pay to ensure I got the best care available.  So many women will continue to suffer like this until we, as survivors and fighters, decided that enough is enough.

Its time to be loud about our uteruses, our ovaries, our endometriosis.  Its time that the misogynistic treatment of women’s health is altered and fixed to benefit women and not the suits and politicians it currently serves.  Its time that stories like mine are normal.  We deserve effective and efficient treatment.  We deserve to have our stories of survival told.  We deserve more than half-assed articles with disproven, outdated misinformation presented as fact.  We deserve more research.  We deserve a cure.

I am a lucky one.

Its time we all were.



What I know about endometriosis is more than what many doctors know.  Isn’t that frightening?  It speaks volumes about the quality of care available to women suffering from this pernicious disease.

General-practice gynecologists are sure that they know what to do about endometriosis: give birth control, give Lupron, do a diagnostic laparoscopy with ablation, continue Lupron or birth control, do ablation again… and again… and again.  It’s a vicious, painful cycle of failure.

What I know from personal experience, research, and talking to actual experts is that none of the above “treatments” work.  They may provide relief to a subset of women, but not everyone, and often for only short periods of time.  It’s a cliché, but the treatments truly are often worse than the disease.  Many of us have permanent, physical damage from Lupron or botched surgeries.  Adding to the misery, the social and psychological impact of years of mistreatment and pain are hard to overstate.

I know that the only real treatment for endometriosis is surgical excision of all the lesions.  Most general-practice ob/gyns don’t do this and also don’t know what to look for during surgery.  They were trained to use outdated methodologies.  They don’t have the time or motivation to learn new approaches to endometriosis treatment.  No matter how much sensitivity is used in discussing the topic, many are offended at the idea that their approach is not the best.

I also know that we need to spread the word about endometriosis symptoms and the only effective treatment, excision.  We’re fighting an uphill battle since inertia of the medical establishment keeps perpetuating this cycle of delayed diagnosis and failed treatment. We’re also hampered by the reluctance of some medical professionals to take women’s health seriously.  They have to do better, and we have to keep insisting that they do.

It should not have taken thirty years of constant, excruciating pain, rude, apathetic doctors, and unnecessary, failed surgeries for me to find treatment and begin the process of getting my life back.  Isn’t it a shame that my story is the norm?


I suppose that my endo story is a bit unusual.  I had no problems at all for many years.  I was put on hormonal birth control when I was 17.  I had ‘normal’ pain with my cycle and no other issues.  In 2011, when I was 28, I switched to the Paragard IUD.  I started having a lot more pain, but my doctor and I chalked it up to the IUD.  The pain got continually worse.  I went to a gynecologist who didn’t think anything was wrong.  One night, it was so bad that I couldn’t stand up straight or walk, so I went to the emergency room.  The ER doctor refused to do anything beyond a cursory poke at my belly.  The nurse told me that, “Every woman has pain, you just have to start dosing earlier and take more Aleve or Motrin.”  In February 2012, I had the IUD removed.  Even after that, I was still having horrible monthly pain.

I finally went to an Urgent Care doctor in late April 2012, and he actually listened to me.  He decided to schedule a CT scan, just to look for irregularities.  On Monday, April 29, 2012, I got the call that I had a 10 cm tumor on my left ovary and a 12 cm tumor on my right ovary, and I was set up with a gynecological oncologist – Dr. Christopher Bryant.  He did a lot of bloodwork, and I did have elevated CA 125 levels.  I had a CT guided biopsy which was inconclusive, so he scheduled an open laparotomy.  Because he was concerned that it was cancer, he really wanted to open me completely up and in his words “take a good look around”.  I went in on May 16, 2012.  When I woke up, the very first thing I remember is the PACU nurse, smiling and patting my shoulder saying, “You don’t have cancer, you don’t have cancer”.  Pathology confirmed – Stage 4 endometriosis.  Dr. Bryant had removed the tumors and a bunch of scar tissue and adhesions, as well as my left fallopian tube, omentum, and appendix.  Had I not already had my gallbladder removed 10 years prior, he would have had to take it out.  I was put on 3 months of Depo Lupron and then birth control pills and recovered pretty well.  I also found out that several of my cousins also suffered from endometriosis – something I had never known.

A year later, I went to my yearly exam with my regular gynecologist and he could feel a mass.  A transvaginal ultrasound revealed two more endometrioma.  I could see the ultrasound screen, and I can’t quite put into words how I felt when I saw those words typed out.  Just barely a year later…and again?  My gynecologist performed the surgery, which was planned as a laparoscopy, with a senior physician attending.  They did decide to open me up.  It was, he said, the worst case of endometriosis either of them had ever seen.  All he felt capable of doing was removing the biggest mass and closing me back up.  He told me that my uterus was covered in scar tissue, and he didn’t think that I would ever be able to successfully carry a pregnancy, even if I could conceive.  He referred me back to Dr. Bryant, due to his skills as a surgeon, and recommended a hysterectomy as the only option.

Dr. Bryant refused.  At the time I was infuriated that he was going to prolong my pain, but now I know that he was just better educated and knew that a hysterectomy wouldn’t cure my endo and would cause a host of other medical problems.  He sent me to an endocrinologist/gynecologist in Memphis.  She did an ultrasound and agreed.  I had a few other growths that needed to be removed, but she felt that my organs were viable for right now.  Dr. Bryant did another open surgery and removed all the growths that he could.  He was hopeful that I may be able to go 5-7 more years before my uterus and ovaries are so destroyed by the disease that they have to be removed.

It’s been over a year since my last surgery, and luckily I have been relatively pain free.  I still get pressure fairly often, but I can manage it with Aleve.  Physically, I feel pretty good.  I am still somewhat self conscious about the long scar that cuts through my stomach.  I had a great surgeon, but there’s only so much he could do after my last surgery.  Emotionally has been a much tougher battle.  I divorced shortly after my first surgery.  Being divorced with a broken reproductive system made me feel pretty, well, worthless.  I had wanted a husband and children and, I felt, had lost my chance at both.  It took me a long time to find a new reason to fight – the combination of depression and endometriosis is a powerful enemy.

I have come to terms with my lack of fertility at this point, and I have a wonderful boyfriend.  I know that at some point in the next few years, surgeons are going to have to reopen the jagged scar and take out what remains of my reproductive organs being wracked by this disease.  It’s scary, but I know that it will be fine in the long run – albeit with some recurring pain and occasionally iffy bladder control.  I just hope that soon, other women won’t have to go through what I have.  That they’ll have better options for treatment and will be treated with kindness.


It is extremely hard for me to share my experience with Endometriosis because it has completely altered my life and the way I live it. However, I’m sharing my story with you because I believe it’s important to educate as many women as possible and spread awareness.

I was diagnosed with Endometriosis just after my 30th birthday. No one told me that this disease would completely destroy all of my internal pelvic organs. No one told me that I would be in debilitating pain on a daily basis and that I would slowly lose function of my bladder and pelvic floor muscles. No one told me that I would be battling infertility for the majority of my life. What they told me was, “Here take this.” Hoping to keep me quiet.

I have been in pain since the start of my period. If the word period freaks you out, then you are part of the problem. I was told by multiple OBGYNs that, “it’s normal to be in pain, you’re a women you just have to deal, or it can’t be that bad.”

I have been treated as a drug seeker when I fainted and had to go to the ER due to the pain being so significant all I could do was pass out. Trust me, when that happens, shit gets real scary fast. I had not yet been diagnosed.   The ER doctor told me I had food poisoning, even though my boyfriend had eaten the same meal and was not ill. Not one test was ordered while I was in the ER.

I was dismissed by all of my doctors until I turned 30 when I finally had the courage to ASK FOR ANSWERS!! It took over 15 years to finally get the correct diagnosis, even after telling my doctors that I had a family history of the disease. My mother had a hysterectomy after having my brother due to her severe pain to “cure” her. Just so you know, a hysterectomy is not a cure for Endometriosis. My mother shares a similar story of being dismissed for years by her doctors.

Some of you may know women with the disease and some of you may have the disease. 1 out of 10 women is a lot of women suffering. It affects every woman differently. The treatments that may have helped you, may not help me or be appropriate. Another enigmatic problem with Endometriosis is that some women may have extensive lesions and adhesions and have no pain, while other women may have only a few lesions and be in severe pain. Please don’t minimize anyone else’s experience. Please, please do not tell a woman how to treat her disease because you have a friend that did _________ fill in the blank. Trust me we have tried everything! It’s dismissive and hurtful. Women suffering with this disease have been dismissed long enough. It’s time for validation. I will no longer tolerate anything less.

Since my initial diagnosis, I have learned that there is a tremendous amount of misinformation out there. Just go on the internet. The scary part is that the majority of it is coming from the medical field. Doctors are spreading misinformation to women on a regular basis as ways to “treat” or “cure” Endometriosis. THERE IS NO CURE! My doctor had the nerve to tell me to get pregnant, which is downright inappropriate to say to a women who has told her she has been trying to get pregnant for over 5 years with no luck. My thought was, “I can barely function right now. How would I be able to raise a baby with this pain?” My doctor then suggested putting me through medically induced menopause at the age of 30. Again I thought, “Ummm, are you f&#@ing serious!? No thanks.” The drug my doctor wanted to put me on is a chemo drug (Lupron). My doctor failed to share that piece of information and the numerous sited side effects. She assured me that it was the “Gold Standard” of treatment for Endometriosis. It’s not! Ladies, enough is enough!! Please don’t settle for half-assed answers. I encourage you to ask questions and do your research! Please get a second, third, or even forth opinion if you are being dismissed. Don’t settle for “Here take this.” Ask why? Ask what is the root of the problem? Ask! Ask! Ask!!!

We are supposed to have faith in our doctors. We are supposed to trust our doctors. Unfortunately, if you are diagnosed with Endometriosis, you soon find out that information is limited and doctors do not know how to manage or treat endometriosis effectively. Of 40,000 + OBGYNs only 100 OBGYNs are capable of excision surgery (meaning they cut out the cells). That’s a crime and a shame for women! We need better care for women. We need empathic health professionals that will listen with compassion. We need doctors to believe us when we say we’re in pain. We need more women standing up with the disease saying we will not tolerate this anymore!

I had my doctor tell me after my second failed surgery that she would have to start removing organs if my pain proceeded. My internal monologue kicked in as I thought, “Wait what?…You want to take what?” I realized this was a little more serious than I had been led to believe. I had also been referred to an urologist and a GI specialist due to other symptoms that had stolen my quality of life. I found a pain specialist and pelvic floor therapist on my own due to the reduced quality of my life. Hoping to find a little relief, I sought out answers from each doctor. None were versed in Endometriosis. I went through invasive procedures and tests, which only exacerbated the pain. I would not wish this on my worst enemy. During these tests, I had the dreaded “C” word thrown around by a few doctors. Once again I was in this familiar place of being scared, which had become the norm.

The urologist later informed me after a few painful medical tests that I had two other medical conditions that I knew nothing about. I was diagnosed with Interstitial Cystitis and Pelvic Floor Dysfunction in September of last year. My whole world continued to crash down as I learned that I had two additional painful conditions that also did not have cures. I had never felt so isolated and alone. Who would be able to relate? Who could sympathize with this pain that started to rule my life? Who would understand? Most of all who could help? I felt like I was running into brick walls.

I had enough. I went to all my doctors and got all my medical records. I got my last two surgical reports and started researching. My first surgical report stated I had Endometriosis on the bladder and other places, so why wasn’t my doctor removing that? I asked her and she replied that she feared she would permanently damage my bladder or other organs. That should have been my first clue that she was not capable of treating my case. We are taught to trust our doctors. We should be able to trust that they know how to treat one of the most common diseases for women. 1 in 10 women have it. But many doctors don’t have a clue how to treat this disease! I went through two very painful surgeries just to have my right ovary burned and the majority of my disease completely missed. I wish my doctor would have had the courage to tell me that my case was too complicated for her and refer me to a doctor that could help. Instead, her “treatment” drained my bank account, and I was still left in debilitating pain.

I’m dealing with depression and anxiety due to all the stress and changes that go hand in hand with chronic illness. It’s difficult having the people you love watch you suffer, when they would do anything to take away your pain or trade places. I still grieve, clinging to the hope that one day I’ll feel like me again. The worst part about any illness is feeling broken, and the pain is a constant reminder for me. I have come to accept my new normal. I’ve had to make considerable adaptations just to function normally. I’m still learning how to cope. It’s literally a day to day struggle to find balance. The funny thing about pain is it demands to be felt. I struggle with being angry at my own body because it demands so much from me and it continues to betray me. Just stay positive… Hahaha. Yeah, try that when you’re in pain every single day.

I did tons of research and found support groups. I asked questions. Lots of questions. I was lucky enough to find a support group that provided evidence-based education about the disease, treatment options, and articles. I was able to connect with women around the world who all share a similar story to me. I’m thankful for these women and I continue to learn from them each day. It’s heartbreaking to read the stories of these women who continuously try to manage their disease while being dismissed by medical professionals, family, friends and co-workers. I’m so thankful to have a supportive family and friends. Even my job is supportive of me. Having support means the difference between life and death for some women who have this disease.

I’m hopeful now that I’m being treated by one of only 100 doctors who specializes in this disease. I’m also very fortunate to have access to his care. Endometriosis is a CHRONIC ILLNESS. Yes, I know I look fine on the outside but my insides are a complete wreck. Even though I just had surgery, there is a huge chance that I may need another one and even another one after that. THERE IS NO CURE! All I can do is manage my symptoms. Endometriosis comes back.

This has taught me more about myself than I ever wanted to know. I’m still very early in my journey and I may not even know if excision surgery has helped for several months. I also have to deal with three painful conditions, not just one. I’m learning to utilize all the tools I have been given. I have learned that I will have to use multiple strategies to combat this. This will be a battle I will have to fight until there is a cure or better methods of treatment and pain management.

If you are experiencing pain with your periods to the point it’s affecting your life, you do not have to suffer alone. I wish someone had told me this 15 years ago. I wish I had advocated for myself earlier. I hope that this brings a little more awareness to the disease that is affecting women across the globe. This disease has affected every aspect of my life. March is Endometriosis awareness month. I’m hoping that you will take the time to research this disease and give it the attention it deserves.

I am still in the midst of my battle, but I hope that by me sharing my story I will inspire other women to share theirs. I am an Endo warrior! I fight like a girl! I will not keep quiet anymore! Time to speak up ladies!


Judas. My body is Judas. Betraying me all the time, not for a few bits of silver but to appease it’s master: Endometriosis. For so many years I’ve looked at my body this way–dividing it from itself, disassociating as much as I can my body from itself.

I remember my first period so clearly and so vividly that I swear I could describe every nerve that was pulled that very first day. I woke up early in the morning with intense waves of pain rippling through my body, and an intense need to vomit. I ran to the bathroom, threw up several times and then while still in the bathroom discovered the small smear of blood that would come to mean so much in the coming years. When I woke my mother up and let her know I thought I had started my period but that I was in excruciating pain she hugged me and said ‘yes, it’s your period and that pain is normal.’ Normal for her as she had suffered with the same pain herself throughout her childbearing years.

I didn’t know then how much my life would be changed by that small smear of blood.

It took me 20 years and countless doctors to be finally diagnosed with endometriosis. 20 years of missed school; missed parties; missed life. This hard to pronounce, mysterious disease coiling like a snake around my body parts finally had a name. By that point the disease had taken everything from me-it had taken my chosen career path, actor after too many times passing out on stage; and it had taken numerous relationships both romantic and non-romantic. Judas’ master has slowly grown over the years from symptoms lasting the first three days of my period, to symptoms lasting the entire month. Pain, nausea, bladder and bowel issues, anxiety, depression and co-morbid diseases make me writhe in agony for hours at a time. Even after 3 surgeries, expensive and extensive physiotherapy, and any other therapy I could get my hands on-Judas and I still battle.

But I will never give up the fight. I will continue to try to bring my body back to itself, to recognize the woman within who fought to be herself, and to show the world her gifts.

I work hard now to ensure endometriosis doesn’t take 20 years from another girl….I work hard to destroy Judas’ master, and forgive Judas for the rest.


Jane Doe
My lifetime story of struggle and endurance…

I’ve had Endometriosis and Endosalpingiosis, PCOS, IC, IBS/IBD, RA, hypothyroidism, fibromyalgia, and that’s just what comes with these diseases, and my genetic make up, mixed with environmental factors. 21 years of issues with my pelvic area! For many years before being diagnosed with Endo, I was told the pain was normal, irregular monthly, and heavy flow was typical. I was diagnosed at 16 with PCOS but they wouldn’t listen when I said there was something else worse going on.

Around 24, and after being referred to a lot of different specialties, they finally said “we can’t see anything from imaging scans, but we’d like to look inside and see if there’s anything. And if so we’ll remove it, biopsy and hope it works!”

Mind you I had just stage 0 cervical cancer and had been cleared by my oncologist, (they removed it off my cervix 80% taken in total, then bowels, uterus, and bladder, all had it on the surface only) they questioned if it was scar tissue for a few years, or if I was just over reacting. That last part hurt the most, I tried everything they said from heating pads, to cold packs, to meditating, and even bathing in epsom salt, advil, Tylenol…nothing ever worked, and so I questioned my own feelings and if I was overreacting or it was all in my head.

After a laparotomy, they removed a fairly large cyst off my broad ligament, found to be Endosalpingiosis, and a lot of small ones covering my other organs down there, found to be Endometriosis as well. I had 3 small scars, but due to how much was recovered it took months to fully heal. I was relieved to know it wasn’t in my head and finally had doctors want to help me, but I had no clue what it meant, especially for the rest of my life?! Immediately after surgery they treated me with Lupron, inducing menopause for a year, with monthly shots.

At that age, it was a nightmare, and I broke up with my BF at the time and just decided not to date for a while! I felt like a burden to my Mom and child, who helped me with everything. After those treatments I started to feel better for a good year, but pain came back. They referred me to a Urologist, he was a leader in IC. They said it was a condition that goes along with it! Go figure I had it! After a biopsy of my bladder and noticeable inflammation that was the next diagnosis. They also referred me to a gastro, and he also did biopsies in upper and lower GI, finding inflammation in lower, but ultimately saying it was IBS, with bouts of inflammation IBD.

Argg the frustration and tears and praying…nothing but another diagnosis on top of another, and all doing different treatments. I felt like a guinea pig, they didn’t know a LOT about most of it in those years, just that they go together. Great!

So I went thru weekly bladder instillations in his office, and tests that make you lose all self respect, dignity and feel like your being used the whole time just for research and not to help. Finally I was referred to a Uro-Gynecologist! He was incredible, one of the best doctors I’d ever met, and instead of treating me like a disease or another number, he cared and wanted to help. So after a while with all these diseases not being able to be cured, and treatments not doing that much help, he elected to give me an experimental surgery. By this time I just wanted the pain to end, and the same day I get the news that it might finally be over…I got into a serious car accident, and a tractor trailer rear ends me in a small car.

What a way to have hope one minute and the next it’s taken away. I spoke to the doctor about a week later, being in a lot of bracers. He said he’d think at the least my abdominal pain will go away. So we went through with the surgery a few months later! Hypogastric Neurectomy. What’s that? They cut you open 7 inches on your pelvic line, go in move everything to get to your spine, and then see all the nerves that branch from the tailbone, and one at a time remove them all, cutting and burning them off! 5+ hrs of surgery, 1 week in the hospital, and sent home! It worked incredibly, but about 8 yrs later I could feel some nerves start to grow back, and pain come back.

Meanwhile, I was diagnosed with fibromyalgia too. Great! Fast forward to this last year…PCOS was back, but the doctor doesn’t know how to treat the endo and that. So I’m on 200 Depo shot, progesterone only, suppressing my estrogen, and it’s helping but if I get my period the pains horrible. Luckily I only get it near the 3 month mark, so it’s tolerable. But now I have Hypothyroidism, I already had bad genes, and I new I’d probably get this one day especially since my Mom and Great Nana both had it. But now my whole system feels off. But pain is about 6 points lower than it was (on a scale from 1-10 it’s a 3 now) unless I get a period and it’ll shoot to a 9 again.

So I can’t complain, I’d love to have another laparoscopic surgery and have them clear out scar tissue and see if the endo is bad again and remove them…but my doctor doesn’t seem to want to do it, or refer me to a surgeon to have it done. She offered a hysterectomy, but said “it may not fix the problem, and if it did, you could still have phantom pain!” Hormones come from your ovaries, they’d only remove the uterus, so it might not fix anything! Great! No one ever told me 14 years ago that life would be like this, or that the pain would come back at times worse than before!

Also 6 years ago I was diagnosed with RA, I didn’t want to believe it or listen to them, so I ignored it, I was and am tired of doctors and pain and having to bring records with me everywhere, and not have them look at me like I’m a hypochondriac! Yes almost everyone has when we first met!  Needless to say, I finally gave in, started seeing a rheumatologist, and found my hands are deforming, osteopenia, and my body might be attacking all the “tissue” inside myself. So I’m going to assume that this is probably why I’m having excess pain in my abdomen over the last year. Hoping now the immunosuppressants will help everything! But it’s a waiting game, and I have to be patient and see if these meds end up helping.

So now, as I write this, I’ve had to move a LOT to try to get comfortable and hope it helps with what is laying on what, where the pain is at the moment. And my hands are killing me typing on this phone! So needless to say, I wish that there was more research on this disease, and their partner diseases. I wish insurance didn’t charge high copays, and make treatments so much more difficult. I wish most my life wasn’t full of pain, it is all I know. I wish I could live like everyone else, do things that most people do, and enjoy a pain free life. But that isn’t my life, it isn’t my fate, and it will never be. So I take the medicine given, get instillations regularly, shots, and a lot of other treatments or surgeries and try not to fall into insane debt, and of course, sometimes pass on treatments because I just can’t afford them! And I try to live my normal life, some days better than others, some weeks lasting longer than others.  But I’m still grateful to the one doctor I had years ago, who gave me relief for about 8 years. I wish I lived there still so he could treat me now.

Thank you for listening to my story, sorry if it’s long, I tried to make it short, but after so many years of struggling with doctors still questioning if I’m a hypochondriac or if I’m really in pain it’s hard to express it shortly. And even with a long history of biopsies and proof, some never believe, until they see for themselves, so they question you every turn they get. I would like to recommend others find a pain doctor to help manage your pain, this way if you have to find another gyno or uro-gyno you won’t suffer in between. I wish more gynecologists would know about endometriosis and listen to their patients. And I wish my gynecologist would try to clear me out inside again so I’d get some relief finally!



Fighting for Endometriosis Awareness in a Culture of Menstrual Misinformation: Breaking the Cycle

(c) Society for Menstrual Cycle Research

Fighting for Endometriosis Awareness in a Culture of
Menstrual Misinformation:
Breaking the Cycle
By Nancy Petersen, RN and Heather Guidone

Menstruation is a vital, normal process—yet remains linked to taboos, misconceptions and practices, particularly in relation to associated diseases like endometriosis. As a result, one of the most critical challenges facing the endometriosis community is a lack of factual awareness. The legacy of misinformation enshrouding the disease persists, propagated even by certain providers and organizations to patients, medical educators to next-generation professionals, health publishers to media, generation to generation. Consequences for these poor information systems are far-reaching, stifling the conversations we should be having about signs and symptoms of endometriosis that could lead to earlier intervention. Read the article:

March is Endometriosis Awareness Month! Real Stories from Real Experts.

Each day thaware15-300x98roughout Endometriosis Awareness Month, we will be adding stories (and in some cases, links to stories) that have been shared with us by the real experts who know this disease best: those who live with it every day (read more about this project here). Check back daily for the latest and scroll down to see all the stories as we add more. We commend our contributors for bravely sharing their experiences in order to raise awareness and help others. You have our gratitude and respect, and remain our sources of inspiration each day. Thank you.

Proceed to page Page 2 for all the latest stories


Shawn & Erin

My daughter had her first period at age 11.  And she was never the same.  It started with getting sick more than usual, then progressed to gastrointestinal type symptoms.  She was often nauseous, fatigued and would feel dizzy.  Her pediatrician did many blood tests including looking for a gluten allergy.  A year later in middle school, her symptoms progressed.  She had nausea more often, abdominal pain, constipation, bloating, headaches, dizziness and looked very pale especially when her other symptoms came on.  She started to have very long menstrual cycles with only a week or so break in between.  I began to suspect something like endometriosis as it ran in her dad’s family.  I sought out an ob/gyn and at the same time a pediatric gastroenterologist.  The first ob/gyn told me to give her just a multi-vitamin and would not prescribe the birth control pill because that was only for people looking to prevent pregnancies.  The second ob/gyn did put her on the birth control pill but made it clear for a patient her age, that was all she would do for her if she had endometriosis.  The GI doctor just prescribed anti-nausea medicine.  During this time, she was seeing a psychiatrist and therapist because she has OCD.  The psychiatrist told me that she thought she had a psychosomatic disorder and was causing herself to feel sick.  I set off to another ob/gyn, this time one that was supposed to specialize in adolescents.  She was put on continuous birth control pills.  When I brought up surgery, I was immediately pushed down.  And when I persisted, I was told that if they did surgery, they could nick something and not find anything.  I believe their goal was to make me too scared to have surgery done on her.  I was told endo did not happen to kids this young.  And when I said- isn’t it true that really, people are diagnosed later in life but have symptoms from early on—-that was agreed with but their position still stood.

By this time, my daughter had missed a big chunk of 6th and 7th grade because of so many absences and was doing school from home.  Our biggest frustration was not having a definite diagnosis.  Lack of a diagnosis left us with no plan and no hope for the future.

After her second time doing school at home in 7th grade, I set out on the internet to arm myself with information.  I found a couple Facebook groups that had tons of it.  It all resonated with us.  All the different types of symptoms, the young age people had their first symptoms, their struggles with doctors.  And most of all, that excision- getting that endo out from the root- made the most sense.  My search for a new doctor began.  Low and behold there were people out there that had successful surgery for endo.  And doctors that gave free reviews of cases that had caring, knowledgeable and sensitive staff.

At the end of her 7th grade year, we traveled 13 hours for surgery.  Our biggest fear was that no endo would be found and we would be back at square one.  After her surgery, June 1, 2015- we found out that she had endo on her bladder, rectal cul de sac, several areas in the pelvic wall, a gnarly looking appendix and also on her bowel which was adhered to a nearby ligament.  She could tell an immediate difference after surgery.  And when I told her the doctor found endo, she smiled from ear to ear.

She is now 14. Her nausea is gone, her fatigue is gone (except from that of a normal teenager), her pain is gone.  She is still having some issues with constipation, which we are seeking physical therapy for, as we think it has something to do with her muscles in that area.  Many endo patients can suffer from those types of issues as well.

Two and a half years it took- which for some would be a blessing.  Over two years to get a diagnosis, to get people to believe us, to find the right doctor.  I’m sure people thought I was nuts for going that far for care.  You have to trust your gut.  You have to advocate for yourself and for your child.  I later sent that psychiatrist a letter with her operative report.  I was respectful, even though she had not been.  I later also found out that she put down the diagnosis of psychosomatic at our very first mention of the symptoms, and also tried to bully her therapist to agree with her.

So, what do I know about endo?  I know it shouldn’t be this hard. I know I won’t let a doctor make decisions about my child’s health.  I know my heart breaks when my daughter tells me that the thing that angered her the most was there were so many people that didn’t believe her- even though she could count on me.  Lastly, I know that neither one of us will stop spreading awareness and CORRECT information.  It shouldn’t be this hard.



Looking back, I now know it all started in high school. But then, I chalked it up to bad periods and sensitive bowels. Fast forward to 22, and I was admitted to the hospital with the worst abdominal pain of my life. My large intestine was inflamed and swollen completely shut. We never did get an answer for that, but I started seeing a gastroenterologist (Crohn’s and Colitis run in our family) to figure out what was going on. I ended up back in the hospital after a colonoscopy left me in hellish pain again. A year later and I still had no answer. He finally told me I just had IBS and would have to start figuring out what food set me off.

I spent the next year trying different diets, cutting out different foods, and seeing no change in my level of pain or my terrible bowel movements. I was taken off work for about 7 months total, and unable to sit for more and a few hours or I would vomit from the pain in my abdomen. I was sure I would be this way forever. It wasn’t lining up with periods or anything, it was constant. All day, every day. I had given up on finding an answer. I fell into a pretty nasty depression, ended up with severe anxiety issues, and pushed all of my friends and family away. I spent weeks only getting out of bed to go to the bathroom, ignoring phone calls, and crying constantly. I have never been so alone in my life.

My saving grace came as a Facebook message from an old acquaintance whose sister had similar issues.  This woman told me all about her sister’s digestive and pain issues, how one day she would be fine, and the next she couldn’t move, how sex was no longer something she could enjoy because it hurt, and how hard it was for her to stand by and watch this happen to her loved one. She told me that after 7 years of fighting with what she thought was IBS, someone finally diagnosed her with Endometriosis.

I started to research it, and there wasn’t a single fact or symptom that didn’t fit my life. I saw my GP, and she referred me to a gynecologist, who didn’t believe what I had to say. She told me I was too young, and the symptoms I had weren’t consistent with the disease. She did a pelvic exam anyway, and couldn’t finish it because I was in so much pain I vomited in the middle of it. She still didn’t believe I had endometriosis, but she agreed something was wrong. I went in for surgery a few months later, and she explained that I did have the disease, and that she had never seen someone so young, with it so badly. My colon was completely attached to my pelvic wall with a very large adhesion, which explained some of the digestive trouble, and the rest of my abdomen was full of growths and other adhesions. She explained that, at this point, they were unable to remove it all as it was behind my uterus and she didn’t want to risk any damage to it by moving it. I went in for a follow up a few weeks later to discuss treatment and what I was in for, for the rest of my life….

I am now 25, and scheduled for a second surgery in 5 weeks, because it is back in full force. People don’t realize what pain can do to a person. I have missed work for many weeks again, only working a few hours here and there when I can. Money is tight because of this, and the stress and loneliness has only brought back the anxiety and depression I struggled with a few years ago. It is absolutely terrifying to me, knowing that I’m going around in circles like this, and I will continue to do so for the rest of my life. I have lost the person I used to be because of this disease, and I have no idea how to get her back. Women who suffer from something like this have to be stronger than anyone else can understand. The disease is exhausting on its own, but pretending to be okay for most of your life is much harder.

At this point, I am hoping the second surgery helps as much as the first one did. But I am terrified this will become my routine every 2 years for the rest of my life, and that I will be alone through it forever, because no one could possibly want to be with a woman like this, especially a woman who can’t have children because of it. Staying positive is nearly as exhausting and painful as the disease itself.

We need awareness and we need support in the medical community. This disease is never going to be a ‘one surgery fixes all’ thing for most women, and we need to find a better solution. Women need medical support, but they also need mental health support to go along with it. This is, by far, the most difficult thing I have ever had to face, and it is only just beginning.

That’s my story so far. Thanks for reading it!


I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal.  I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow.  I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this.  Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…

I became sexually active when I got married at 21 years old.  Now that I’d “done the deed,” I decided it was time I saw a gynecologist. My very first one. Man, was I excited.  I’d discussed my painful periods and lengthy cycles, but was told nothing was abnormal.   She put me on Ortho Tri Cyclen since my husband and I didn’t want children yet, in the hopes that it would regulate my cycles and pain. It did regulate the length of my cycles, but didn’t help with the pain much.  However, it turned me into a weight-gaining, moody, grumpy-guss. And I hated the pill.  Two years later, we decided we’d like to start our own little family, so I gladly got off the pill.

The cramps were worse than before.  Days of laying curled up in a ball on the bed, squeezing the hell out of my heating pad, no OTC pain meds or “specialty pills” like Midol helped. At all. I wasn’t about to exercise (“but it’s so good for your period cramps,” they say…you cannot get out of bed to exercise.) Didn’t want sex (even though everyone says it helps with your cramps…).  My bloating was so severe I’d be asked on several occasions when my baby was due. I had monthly diarrhea along with my period.  It was horrible.

Our medical insurance had changed, so I found a new gynecologist.  Same story : nothing abnormal about my periods.  Fast forward five years.  Still not pregnant.  Have done all of the homeopathic tricks in the book to conceive (including standing on my head after sex…ha!), test my fertility, monitor ovulation, etc.  Neither one of us wanted IVF, so we never considered going in for any fertility tests or treatments.  Every month I would start my period, every month I would be depressed at our failure.  We had friends and family who were having families of their own, I attended countless baby showers, offered way too many “congratulations.”  Each time, wanting to wallow in my own sadness over the fact that we have been unable to conceive. I had begun to resent those new mothers around me. At no fault of their own. I was still very happy for them…but still incredibly jealous, sad, and even angry. It was a dark and horrible downward spiral. We eventually stopped trying and hoped it would just happen on it’s own.

My gynecologist had retired, so I was assigned a new one at Kaiser.  At my next annual pap appointment, the new doctor agreed : nothing abnormal about my period pain or cycles.  She did discover however, that I had a septated vaginal canal.  A split down the center of my vagina, so that I have a right side and a left side.  My right side was normal leading straight to my cervix, but the left side just dead-ended at the back of my vaginal canal. She surmised that if we had been having sex on the left side and his semen was just hitting a blocked wall, making it impossible to conceive.  So we tried making sure he was on the right side during intercourse. Still no pregnancy.

Which was a good thing.  In 2009, we separated.  My marriage had ended. Add that to my growing emotional pit.

Since I had left my husband, I had to get my own health insurance which mean, you guessed it : a new gynecologist.  My first visit to this doctor was hilarious.  Within seconds of descending between the cleft of my thighs, he popped his head up in excitement, “You have two!!!!!”  I told him I knew I had two sides.  “No,” he said, “you have two cervix!”  WHAT?  How in the world did my three…THREE…prior gynecologists miss the fact that I have two fully-functioning cervix?  This doctor was so excited he had to invite a few staffmembers and specialists in to look for themselves (with my permission, of course).  So after the excitement died down, he told me that my right side was wider, but my cervical opening was tiny.  And my left side was much narrower, but my cervical opening was normal.  He figured we hadn’t been getting pregnant because of the tiny opening on the right.  He also said women with “this condition” have a very hard time naturally conceiving.  “Nearly impossible,” he said.  So I resigned myself to not having children.  He also believed my period pain and cycles were “normal.”

He was also the first gynecologist to prescribe me pain medication for my horrendous cramps.  Naproxen Sodium. And it was the only thing that worked. I took those pills every month until my excision surgery in 2014.  Five years of having to depend on pharmaceuticals to help alleviate my pain. Sometimes they didn’t work at all.  Most times I had nausea, exhaustion, and dizziness from those pills.  Sometimes I was afraid to drive.  And nearly fell down the stairs on more than one occasion.  Not an easy pill to stomach.

I had been routinely reprimanded at work for all of the time I had missed.  I called in sick for one or two days every month.  Sometimes three.  I had exhausted my sick time and had to start using vacation time.  I was told if I missed another day, “disciplinary action” would be taken.  So I would go to work in pure agony.  I had cancelled dates and appointments because of my pain. But again…”it was normal.” Fast forward to 2012 and I moved to San Diego.  New job, clean slate (new vacation and sick time), new insurance, and yep, a new gynecologist. I told him about my septated canal, my double cervix (which lead into one uterus), but I had been told for so long that my periods were normal that I didn’t bring it up.  He asked if I experienced any cramps and what the length of my cycles were, which I answered. No surprise. He advised me to continue to take my Naproxen Sodium as needed.

In 2013, he wanted an ultrasound because I had expressed some tenderness during my pap.  He discovered I had a small cyst on my right ovary.  When I went in for a follow-up ultrasound, I now had a cyst on my left ovary.  Every few months, we continued this little dance and watched the cysts grow, disappear, and reappear.  During all of this, my periods continued their harsh game, I continued to miss work at the new job (1-3 days a month), and it was mentioned in my review that I had been missing an awful lot of work once a month…Fuck.

Finally in 2014, an ultrasound showed a larger cyst on my left ovary.  So my doctor ordered an MRI to get a better look at it.  MRI results were read and they believed I had a dermoid cyst on my left ovary, which could potentially become cancerous.  It looked like I also had abnormally thick uterine lining, which may have explained the cramping and lengthy periods. Due to the scary cancer possibility, we decided to do a routine robotic laparoscopy and remove the cyst. While I was under, he was going to perform a D&C procedure, where they scoop out that excess lining in my uterus (gross!).

Surgery.  The last thing I remember was the anesthesiologist talking to me about my favorite hiking spots in San Diego (may I just say that’s the BEST way to fall asleep?).  My 1.5-hour surgery ended up being 4 hours.  Once he was inside, my gynecologist (he was also my surgeon! LOVE HIM!) was surprised to immediately notice the unmistakable signs of Endometriosis: implants and adhesions.  What was thought to be a dermoid cyst was an endometrioma, also known as a chocolate cyst.  My abdominal cavity was invaded by Endometriosis implants. My bladder was glued to my uterus by adhesions.  My bowel was also stuck to my uterus.  I had adhesions and implants on my liver and diaphragm, too.  It is my understanding that he couldn’t remove it from my liver and risk puncturing or damaging that organ, but he smeared some type of barrier medication to hopefully stop it from growing.  And he managed to save my ovaries.

I have since altered my diet to a more Endo-friendly diet.  I’ve also received six grueling months of Lupron Depot injections.  And I am now on a continuous birth control pill. So far I am pain-free.  But…for now…pain free.  I’m terrified for the day if it returns…but at least I now have the love and support I need…

Discovering I have Endometriosis has changed my life.

I’m horrified and saddened that none of my prior gynecologists ever suggested or hinted that I may have this very common disease. Let alone noticed I had two sides…and two cervix! Only since 2012 have I started receiving pap smears on each cervix, which should have been done since my first pap.  I lost a little bit of faith in the medical community on that one.

Endometriosis is one of the leading causes of infertility.  All of that time trying, crying, and fretting while we tried to make a baby…wasted. But at least now I know why I couldn’t conceive.

But the BEST part? I have embraced this horrible disease and diagnosis, I’ve met beautiful and wonderfully passionate women who have the same disease, and we have come together for support and advocacy.  I have learned that my pain was never normal. That I am not alone.  And I have found a way to overcome the emotional storm that came with the diagnosis.

I am stronger for it.


Jane Doe

Endometriosis Counts.

The weekend is finally here. I watch the clock counting down the hours that my second job as an on-call crisis counselor will go by without needing me tonight. Not because I do not enjoy my job or because I find it overwhelming to talk to suicidal, homicidal, or people in crisis, but because I am so tired I just want to rest. This is what my battle with Endometriosis has done to do me. I am a shell of my former self. I sit here in bed on my heating pad next to my cup of peppermint tea, and bottles of pain pills and magnesium and turmeric supplements and start my nightly ritual of scrolling through the posts from other women on the online support groups I joined several months ago through Endometropolis, Nancy’s Nook, Adenomyosis Support and Adenomyosis Miracles as well as looking up articles on Endopaedia with other people searching for answers, solutions, and hope.

My mind drifts off and I think about all the things I miss doing and how my life has changed. I am an avid traveler and have been to 14 different countries, 44 states, have been scuba diving in the caribbean, skydiving from13,500 feet, have pet tigers and held alligators, and ridden elephants and camels in Laos and India, but have found myself rooted to home this past year so I can be close to a bed and a bathroom at all times now. My dream of finally seeing Hawaii will have to wait. I miss the days when I could go to the mall and walk from one side to the other without needing to find a place to sit and rest, or when I could shop and try on clothes in the fitting room without having to suddenly abandon everything to find a bathroom to avoid an embarrassing accident.

I think about the cats at the Humane Society whom after 7 years, I had to stop volunteering to help because my symptoms had become too debilitating. I think about my Little of 6 years with Big Brothers Big Sisters and feel sad about how I feel like I am letting her down, since I can barely get through an outing anymore without being completely worn out after three hours and have to go home. I look at my pile of laundry on the floor and feel guilty for not pulling my own weight of household duties anymore. I reflect on how difficult it was to stay alert at my fulltime job as a trauma counselor and how strange it was to have to inform all my clients of my health problems this year and the likelihood of me being unavailable for several months in the near future due to major surgery, because I wanted to ensure they get the best care, knowing I can no longer function at my best. My focus is always on my clients, so having to share this personal information was a break from the norm.

Thankfully, I work with wonderful people, both clients and colleagues, who have been very gracious about my health challenges. I think about how grateful I am to have their support and the support of my partner, family, and friends, because I hear so many stories of other people who have had nothing but rejection and isolation when people discount their symptoms as something that “every woman has”, or “is just cramps,” or they just need to “get over it and stop complaining because it is not that bad.”   I think about my family and how I could not celebrate the holidays with them this year because I was in too much pain and fatigue to travel. Instead, I spent three weeks in bed and missed out on every friggin holiday meal…oh to think about the cookies I missed. Not that I could really enjoy them anyway, it has been half a year since I was able to eat what I want without being fearful of the debilitating pain, or constipation, or diarrhea it will induce.

I don’t just have endometriosis, I am one of the unlucky 10-15% of endo sufferers who won the crap lottery of developing rectovaginal endometriosis. This means the endometriosis, or uterine-like tissue that has grown outside the uterus has attached to my bowels or rectal region and brings with it painful bowel movements, fluctuation periods of bowel dysregulation, severe bloating, inability to have any clothes or anything else touching my abdomen without pain (this part could be more related to Adenomyosis), feeling like I cannot empty my bowels, and frequent and sometimes sudden urge to empty my bowels. It started out as a pain restricted to my periods, but it has now become something I endure on a daily basis. The pain is not constant, it comes and goes with flare ups related to inflammation, but at its worst I am screaming in pain, nauseous, shaking, and pacing.  Sometimes I feel like telling people to just start forwarding my mail to the bathroom. Medical researchers do not know the exact cause of the disease, but I have heard several theories floating around related to genetics, autoimmune disease linkages, menstrual backflow (Sampson’s Theory), and even complications during infancy or at an embryonic stage of development.

My mind wanders and I think about the numbers.

Ten. It has been ten years since I started going to doctors for symptoms related to my endometriosis. I told the doctor my bowel movements were very difficult and painful during my period. It felt like my intestines were being wrung out. My back pain was terrible. I had been having constant bleeding throughout the month that did not stop despite multiple changes in birth control methods. It has been ten years since I had my first exploratory surgery to find the endometriosis but was told afterward that none was found, and that my doctor suspected I had microscopic endometriosis. Perhaps I was in the one of every ten women who had endometriosis, but at this point, it was not clear. Seven. It has been seven years since I had my appendix removed in an emergency surgery and for the first time in my life, feared I would die. When the surgeons opened me up they found extensive, severe endometriosis and blood pooling throughout my pelvic cavity with a chocolate cyst, otherwise known as an endometrioma wherein endometriosis has invaded the inside of the ovary and filled it with dark, chocolately colored blood, indicative of stage 4 endometriosis.

Four. Endo only has 4 stages and stage 4 means the poorest outcome for fertility. The surgeon said the endometriosis had inflamed my bowel and infected the tip of the appendix, causing it to need to be removed.  They removed the appendix, but left all the endometriosis.

Twenty-Nine. I was twenty nine years old when doctors told me that my window for having children naturally was closed.

Two. I have been through chemically induced menopauuse twice to treat the symptoms of the endometriosis. The first time I took Aromatase Inhibitors it shrunk my endometrial cysts dramatically and I was pain free for four years afterward until I stopped all birth control hormone suppressant treatment and my symptoms came raging back. Little did I know that the disease was ravaging my body even though my symptoms were being kept at bay. One doctor described the disease as like “a cancer that does not kill, but takes away your quality of life.” The second time I went through chemical menopause I did not have near the same luck as the first time, as the disease was already too far advanced. My only hope now is excision, a complete cutting away of all the endometrial tissue.

Six. It has been six months since my symptoms with bowel pain and back and sciatic nerve pain became debilitating and I began having to take over the counter pain relievers on a daily basis, and prescription pain relievers when needed. This is when my battle with fatigue became a daily struggle, though I can see signs of it much earlier.

Nine. I have seen or consulted with nine different doctors related to my endometriosis this past year: a general practitioner, a reproductive endocrinologist, a gynecological surgeon, a gastroenterologist, a pain management doctor, a colorectal surgeon, 2 ER doctors in one visit because the first did not know enough about endometriosis and the complexity of my condition to help, and another retired surgeon and endometriosis research specialist. Five. Five thousand dollars was the out of pocket costs I had to put down upfront to pay for the fertility meds to start In-vitro Fertilization (IVF) in hopes of trying to have a child, likely by means of surrogacy. Sixteen. Sixteen thousand dollars would have been the expected total cost of one round of IVF. Two. Two months, that’s how long it has been since the doctors told me that IVF was no longer an option for me either because my disease was too far advanced.

One. They also said I would have 1% chance of success with IVF and may put my life at risk by attempting it because of my distorted anatomy. Another doctor told me “You are in the ½ of one percent of the most severe cases.”  I have an endometrioma the size of a grapefruit on one ovary and one the size of a lemon on the other ovary. One endometrioma is partially obstructing my bowel, which is also covered in scar tissue. I was also diagnosed with Adenomysis, which is when endometriosis has penetrated inside the muscle lining of the uterus and causes a collection of painful symptoms and abnormal vaginal bleeding of its own. My endometriosis has advanced to a state that is known as frozen pelvis. This means that my anatomy has become severely distorted by adhesions and scar tissue. Nothing is in its right place anymore. My cervix is tethered to my rectum in what doctors dreadedly call an “obliterated cul de sac” and my ovaries that are so covered in cysts they resemble more of a bundle of grapes than ovaries, are bound together like backward butterfly wings. My fallopian tube is blocked and bloated like a sausage. My pelvic anatomy has become frozen in an immovable Picasso-esque state. I am told surgery on me will be like “chiseling through concrete.”

Another term that is associated with my type of endometriosis is DIE, Deeply Invasive Endometriosis. The endometriosis has so deeply invaded my soft tissues it replaced them with dense fibrotic tissue. In my case, the endo has invaded the mucosa, the second of three layers, of my rectum and almost the entire lining of my rectum has been worn away. This is why bowel movements are so painful. According to the Center for Endometriosis Care, only 1-2% of endo patients require significant surgery for bowel endometriosis. I again win the crap lottery. Yay. Again, that number five comes up. That’s how many organs the surgeons I had been consulting with want to remove from my body: uterus, cervix, ovaries, fallopian tubes, and middle section of rectum.

Zero. The number of children I have or the number of pregnancies I have had and the number of ovaries I will have if I follow through with my current surgeon’s recommendation. Three. Three months was all the time my last consulting surgeon said I would likely need to be on an iliostomy bag after my bowel surgery. Three months, that’s how long I have to wait to consult with an endometriosis excision specialist in hopes of getting my life back or having a surgery that might spare some of my organs, avoid the iliostomy bag that I hear is rarely performed with expert endometrial surgeons, perhaps save a portion of an ovary to prevent early menopause and avoid raising my risk of heart disease, osteoperosis, and dementia; and maybe just maybe give me a chance at having a child.  Thankfully one is local, but the other would require a 5 hour drive to see her.

100. That’s how many surgeons in the US are said to be qualified to expertly excise endometriosis. Unfortunately, I have heard only a handful of those are especially skilled with managing bowel endometriosis. I wonder how much longer I will have to wait for the surgeons to have openings to schedule my excision surgery after I finally get into see them.  What magical number will that be? I think back to that number ten again. It was ten years ago when doctors first suspected I had endometriosis, but found none. Last week my gynecological surgeon said in hyperbole, “if endometriosis has four stages, yours would be a ten.” I wonder, how does that happen? How many others are like me out there, not knowing what time means to our bodies with this disease?

176. One hundred Seventy-Six Million individuals are currently living with Endometriosis globally today.

I am shaken out of my thoughts by a crisis call from work. I would love to stay home and rest, but I need the money for when I have surgery and will be out of work for probably 2-3 months and out of money while I take FMLA. I am forcing myself to push through, because I need to squirrel away every bit of sick and vacation time for when I am out for my surgery so I can still afford to eat and pay rent and student loans. At least I have insurance that will cover my surgery; from what I hear I am in the minority on this since so few doctors take insurance for this type of surgery, not to mention the countless number of people without adequate insurance coverage.  So, I pick up my purse that is now frayed and tearing at the seams from the weight of all the medical supplies I must keep with me at all times: four types of pain relievers, hemorrhoidal cream, wipes, and heat patches and get ready to head out to work once again.  I hope it is a short call. I say goodnight to my heating pad, cats, and partner and head out into the cold night and think about what a relief it will be to take another warm, hot soak in the bathtub when I get home.


My experience with endometriosis likely began when I was 13, although I didn’t realize it at the time.   I had extremely heavy and painful periods that would leave me unable to attend work or school for two days every month.   I went on birth control when I was 17 and my periods became manageable.  For the next 10 years I carried on normally, not giving my periods a second thought.

In January 2009 I started having pain in the lower left side of my pelvis.   Imaging studies came back normal so my family doctor referred me to a gynecologist.   In March 2010 I got my surgical diagnosis – endometriosis and pelvic congestion.   However my surgeon chose not to treat anything because the endo was directly on top of the congested ovarian veins and he felt it wasn’t worth the bleeding risk.    So I carried on for the next 2 years managing as well as I could with pain meds.    But the pain got worse with each passing month and by 2012 it was affecting my ability to function normally.   My surgeon finally agreed to treat the endo.  I didn’t know enough about my disease to ask him about how he would be treating it.  The endo was ablated and within 6 weeks of the surgery my pain snowballed out of control.    The pain was so severe I couldn’t work, I was walking with a limp and I started having to take narcotic pain meds for the first time.

Over the next 2 years I had 3 more surgeries with 3 different surgeons, none of which did a thing for my pain. All 3 of the surgeons even told me that I didn’t have endo anymore, that it had been successfully treated during my ablation surgery in 2012.  I tried acupuncture, massage, pelvic physical therapy, dietary changes, naturopathy and even a drug called lupron, which forced my body into temporary menopause.  Nothing worked.  I had become a passive observer in my own life.   I was confined to the couch, left the house only for doctors appointments and trips to the pharmacy and was torn away from the job I love.  It felt like I was locked in a dark room with a small window that offered only a glimpse of life spinning by in a blur, while I was just stuck.   They were some of the darkest days of my life.   It was then that I met Nancy Petersen of Nancy’s Nook, an endometriosis support group on facebook.   I started learning about excision and current treatment options for endo.   I became obsessed.   This was it, it was my last chance to get my life back.   I read everything I could get my hands on.   With this new found knowledge I started to consider travelling from Alberta to the United States to see a specialist.    My family was worried – it’s a big step when you come from a country with universal health care to think about spending lots of money for a surgery that you could do at home for free.   It’s an even bigger risk when your doctors are telling you that you no longer have endo.    I had a gut feeling that my doctors were wrong, that there had to be an explanation for my pain.

In early 2014, I had surgery with Dr Cindy Mosbrucker which entailed excision of endo, Presacral Neurectomy and appendectomy.  Pathology confirmed that there was endo in 7 different places on my peritoneum.  Finally I had that the validation that I had waited so long for.  Over the next few months my pain started to slowly improve.   I started to wean off my pain medications and eventually returned to work.   Today, I am back to living my life.   I still have some mild to moderate pain from spasm in the pelvic floor muscles, but it is manageable with medication and it is continuing to improve with physical therapy.

As horrible as my story sounds, I consider myself to be one of the lucky ones.   I had a surgical diagnosis within 16 months of the onset of pain.   Most women wait an average of 7 years to be taken seriously enough to get a proper diagnosis.   I also had a family doctor who took me seriously from day one.  She gave me access to pain medications, got me every referral I asked for and was a constant source of support.  She never lifted a scalpel, but she was the biggest reason for my success.  A lot of women with endo get dismissed by doctors as being weak, drug seeking or neurotic.  Endometriosis can be a very isolating disease, especially when you don’t have a doctor who believes you.  Lastly, I was very fortunate to have the means to get myself to a specialist.   Most women don’t.  I hope that we will gradually change the way the healthcare system approaches endometriosis.   Every woman with this disease deserves access to effective surgery, it shouldn’t be reserved for those who can afford to pay.

My hope in sharing my story is that women suffering with endo will be encouraged to keep fighting.   There are people out there that can help you, but it’s not going to come easy.   Trust your gut and advocate for yourself.   Educate yourself as much as you can about your disease and use that information to your advantage.   There is hope!


I have endo. This is what I know.

I know that I began having painful periods in high school, but never painful enough to keep me home from school. My periods were heavy-but that was to be expected. My mother had endometriosis, after all. What I was experiencing was just normal. At 15 I was told by a gynecologist I could just feel myself ovulate, since the ultrasound showed nothing. At 20 I was told that I didn’t have endometriosis, because the manual exam performed by the doctor that had diagnosed my mother turned up nothing. And yet…

At 24, miserable and on anti-depressants, I couldn’t understand why I was feeling suicidal or why I was gaining weight inexplicably or why I was developing stretch marks and cystic acne. I was lucky that I had a good psychiatrist who told me to find a gynecologist and ask to be tested for PCOS. I did, and I was, and one laparoscopic surgery later I had confirmed PCOS and endometriosis. I was relieved to have a name put to my suffering. I remember being wheeled to recovery as my husband leaned down with tears on his cheeks, telling me that I could have babies. That we could have babies. And we did, after one year of Lupron and one IVF cycle, we welcomed a baby boy into our lives. And then we miscarried, upset but hopeful that we might be able to conceive again naturally. I went on the pill, mostly continuously, cycling every few months to avoid constant spotting. I thought I was done and life would move along according to plan.

And it did, mostly. There was pain; there is always pain. Mostly back pain Leg pain, really. And then I gave birth to another boy. Soon after, the IBS, or what I was told was IBS, began. For three years I was tested and retested, trying to find the source of the problem. The doctor said you have inflammation, but he couldn’t tell me why. Sometimes, rarely, this just happens. Even though I had told him I had endo, like I do at EVERY new doctor appointment, it didn’t occur to him to explore that route. Fast forward almost four years, and the abdominal pain had become too much, and I was waking up in the night with these bowel attacks that would cause me to break into sweats where I would rock back and forth on the toilet just waiting for it to pass. After an hour, it usually did. During the day, I was dropping my boys off at school and coming home to lie in bed for hours, trying to do the minimum in house work, attempting to make dinner without complaint or needing to lie back down. I knew I needed to exercise and would take prescription pain killers just to swim for 30 minutes, or walk a mile. Sometimes I would bleed after those sessions that weren’t intense by any stretch of the imagination. I called my old doctor, the one that originally diagnosed me and asked to have another lap done.

The pictures! I asked him to give me the photos he took. Because endometriosis is so invisible, I need proof myself that I hadn’t gone crazy and imagined it all.  The photos looked like someone had taken spider web material, the kind that people decorate their houses with during Halloween, and had applied the biological equivalent of Elmers glue to it and stuck it to my bowel. And the implants looked like little ball bearings nestled in their squishy homes. I was in awe, and utterly vindicated. THIS WAS NOT IN MY HEAD. And still…

Just this past week, my pain management doctor asked me to speak to a psychologist, like he does all his patients. I complied, and told him about a particularly upsetting episode I had a few days before where I felt an unjustified rage take over, which led to my being upset—really upset, and self-harm was considered—but that I felt that the GnRH drugs were to blame. The doctor looked at me and attempted to diagnose me as generalized anxiety and bipolar, even though I have had no symptoms to support this diagnosis, and even though I told him I AM IN DRUG INDUCED MENOPAUSE. I think it’s pretty safe to say I am a hormonal (or lack thereof) mess right now, and the anxiety kind of speaks for itself. I’m facing a hysterectomy in the very near future. You’ve only been talking to me for an hour. I’m thirty-seven years old, I’ve been living with this disease for over half my life. “I KNOW MY BODY.” I wanted to shout. How dare he treat me like I had been committed to some 19th century insane asylum with the general diagnosis of “hysterical female”. I cried so hard after that appointment, and I felt so hopeless and so angry. But I’ve decided to channel that anger into advocacy and activism. I can’t help anyone if I am blinded by anger.

So what do I know about endo? I know that I am tired. I am tired of the pain, the constant explanations and self-defense, the fighting for the right to be treated to the best of one’s ability. I’m tired of explaining my disease to OTHER PHYSICIANS. I’m exhausted with day-to-day living that other people take for granted. I’m tired of weighing pros and cons and making huge, life altering decisions with not a lot of guarantees as to the outcome. I’ve decided to quit the induced menopause and just ride it out as long as I can until that hysterectomy. I’m cautiously optimistic that the pain will be better. I’ve also decided that I will pursue my suspicions that the back pain I have endured for the past 20 years is down to the endo–the doctors seem to get distracted by the herniated discs and so don’t consider the endometriosis a valid culprit. The lesion on my kidney will also get more attention from me, and I will fight to find a good doctor that will listen. I will demand to be heard.

I also know that endo has made me a tough-as-nails woman. I know what I am made of thanks to endo. While I may lie in bed on some days, I still get up and soldier on, ready to take on another day. Ready to take care of my family, and rejoicing in the days when I can have fun with them, too. I know that I am not alone. I know that there are hundreds of thousands of others just like me, feeling the same way. I tell my story for all of you. This much I do know: you are not invisible.

See for more from Melissa.



“Ms. H., your lung collapsed and you need to get to the hospital immediately.” Were the words uttered from the doctor when I went to the urgent care a few weeks ago about shortness of breath.  After being transported from the urgent care to a hospital and having surgery days later, I can’t express how shocking it was to find out that this happened because of endometriosis.  While in the hospital, I reflected on how this started for me:

As we enter March, which is endometriosis awareness month, I think about the first time I experienced an ovarian cyst rupture in 2010 which led to discovering that I have endometriosis (although I wouldn’t receive an official diagnosis until 2015). I was in class when it hit like a gazillion kicks to my pelvis.  Thinking it was just horrible cramps, I went to the store, bought some aspirin thinking that would ease the pain enough to get me through the day. Hours later after going home and taking off work later that night and going to sleep because of the pain, I woke up feeling like I was about to die. Although the pain eventually went away for the moment, I scheduled an appointment with an ob gyn to see what was up after much hesitation plus after researching this issue and realizing I had endometriosis-nevermind what drs said.

Now while I can’t speak for all masculine women and I can only imagine what trans men go through, I will speak on my own hesitation on going to the ob gyn for endometriosis in saying that this is not just an issue that affects cis women.  Many times, when I brought up my issues to the many ob gyns I would visit due to dissatisfaction with how they approach the issue as if we are all copies of the standard cis, hetero women.  The ob gyns I would visit would rule out removing my ovaries or a hysterectomy even though I would express to them countless times that I don’t desire to bare children so saving my ovaries for reproductive purposes doesn’t matter to me.

One even said that unless I “switch teams” there’s no need to even come in to have a pap done (which I filed complaints after this comment and dropped the doctor). I was pissed that they weren’t listening as they continued to say “you may change your mind” “I don’t know much about your lifestyle but I know so and so who is a lesbian and she has kids so you might want to save them”  I would often come out of character enraged that I was being compared to other lesbians as if we’re all the same; not to mention being personally tired of defending myself against the not wanting to bare children thing and how “lifestyle” is used as if we live in another dimension but that’s another story.

Once again, I found myself hesitating finding another ob gyn but it had to be done.  I questioned myself on how many more times would I have to have my guard up and defend myself at a damn doctor’s office when I only want relief from the excruciating pain that I experienced almost monthly?  Or how it’s just bad cramps and all in my head? How many more times would I have to hear about the medical discovery that the ovaries are good for the heart? That’s great and all, but when I’m literally crawling around my apartment in pain I’m could care less about those benefits in that moment.  Would I have another reminder that endometriosis is associated with cis and hetero women?  Yes, over and over again even though I did eventually find a good OB GYN and currently taking medication to minimize the pain or so I thought (update: I later dropped the doctor due to a potential fatal error on his behalf and visiting another one so I hope this goes well).

It’s a major problem when you have many non cis women and trans men that are fearful, fed up and annoyed with going to the ob gyn because of the misunderstandings, hetero-normative questions and just simply not listening to understand the unique issues that we experience.  What’s worse is that many avoid going at all to avoid the hassle and its time that health care providers realize that endometriosis effects a diverse group of women with different experiences, orientations, identities, needs and not just the hetero cis women.

Health care providers should ensure that ALL women are heard and receive proper treatment without bias. These doctors shouldn’t get passes because their doctors, or that they had such and such schooling and what not because at the end of the day, all of that is bull shit if they cannot get past their own God complexes to serve and treat the people without patients being victims of their crap or having to wait years for an official diagnosis.



When I had just turned 20 I had dealt with a really odd health issue of chronic daily nausea. I was stressed, going to college full time with a double major of music education and biblical studies, worked part time, and had a relationship with a young man in the coast guard who was gone a lot. My main doctors had told me that my issue was anxiety and that I had nothing wrong with me physically. They ran all the tests for GI issues and it was true, nothing came back positive and during this time I was losing hope and tired of not being able to live my life like I had envisioned I would at age 22.

I ended up just taking drugs to cope with this nausea and tried to enjoy my new married life but then the issue of painful sex had overcome me now. No matter what we tried I couldn’t enjoy sex at all and tried to seek counsel from doctors. My first exam in a new state was horrible. The woman doctor abruptly inserted the speculum and said to me curtly “see, you can fit a penis inside of you” and told me I just needed to relax. However I knew there was something else going on that I didn’t understand. The next year was when I started to get painful periods unlike any other periods of my life and was told to try hormones. However I could not stay on any longer than a week because it made my nausea unbearable and I became so emotionally unstable that this was no longer an option. Sharing this with family they didn’t think it was a big deal because “most women have painful periods” but when I had to go to the ER several times due to ovarian cysts rupturing I had to plead with them to see that this was a big deal. My husband would become worried seeing me cry out in pain during these periods, as I laid on the kitchen tile floor, waiting for any meds to kick in, or the time I had actually passed out while sitting on the toilet.

I had known one other woman in my life that was diagnosed with Endo, but she had felt better with time and so I didn’t think that this was what I had. After having more and more days of pain that would hurt not during my period but other days, I knew I needed to see more doctors in hopes of finding what was wrong. I finally had a normal gyn agree to do a Laparoscopy in August of 2014 and she removed a rather large cyst on one ovary and the other had a chocolate cyst that didn’t even appear in my ultrasounds. She did find adhesions “every where” on my bowels, bladder and more and yet she wasn’t trained to touch them. I now know that I was a severe case of endo and all she had to tell me was that I needed to stay on birth control because according to her that would stop the endo adhesions from growing. It helped my symptoms for a little bit, but once again a year later the pain was getting worse and my nausea was still around. I have since gone to a so called expert in the field of women’s issues, but he had said that he would put me on Lupron after a surgery because that was the only thing that would stop the endo from growing. Either choose that or try to get pregnant.

I have finally found the truth about how this disease can react and know now that I need to find an excision specialist. Being 27 now and trying to live a life with chronic pain and nausea is not fun, and has been stressful on a marriage, but I am thankful for this opportunity to share my story for those who may have the same thing and no doctors believing in them. For those being told that you must have anxiety or that having cysts at this age is normal. For those who have family members that have told you that this is all made up in your head, and you have nothing wrong with you. I have been told these things and now finally showing them that I do have this disease helps a little to bring awareness for all women. I know that there are many others out there who need to hear this message and I hope to have more doctors out there who know the truth about Endo.


I told my story when I was a year post hysterectomy from Dr Kongoasa; I felt my story gives a glimpse of the struggles before and after surgeries.

Today is a milestone. Today marks 1 year since my hysterectomy. I was not aware of how much this surgery would change my life, both positive and negative. As most people know, I have endometriosis. I have had prior surgeries for this disease yet continued to suffer terribly. I would cry most mornings as the terrible pain would bring me to my knees. At this time I thought there is no way this can be endometriosis, I had a “specialist”. So began the search for the next 2 years as to why I am in so much pain.

I ended up with back surgery. I woke from that surgery feeling no pain, awesome!! Within 2 weeks the intense pain was back. Defeated best described how I felt. I endured several steroid injections in my back. Didn’t work. I researched and found a doctor who performed prolotherapy. I thought this will be the answer to my pain. I went twice a month for 15-20 injections in hip/groin all the while awake feeling every bit of pain. After 8 months of this torture I realized this was a dead end. Back to the drawing board, I researched more and coming to the realization that endometriosis can still be the culprit. Again the search was on to find another specialist. I found a great doctor. The morning of my appointment I was scared. What if the doctor doesn’t find anything, what if he does?

The doctor did find something-Adenomyosis. The only treatment is a hysterectomy. Ok, I can do this! Surgery was 7 hours. The doctor spent a better part of my surgery searching for and excising endometriosis that was left by the other specialist and besides uterus, I had my appendix and right ovary removed. I’m no stranger to surgeries, this was my 7th but waking up in recovery this time was the most terrifying moment of my life. There were some issues with my heart. I thought I was going to die, a memory that hasn’t left my mind yet. The issues did resolve and the next day was sent home to start the journey of recovery.

While pre-surgery pain was gone I had to now deal with new issues. During surgery I was diagnosed with Interstitial Cystitis, disease of the bladder which causes terrible pain and there is no cure for and pelvic floor dysfunction, which 8 months later I still go to physical therapy for. And let’s not forget the PTSD. This came as a surprise to me but as I came to find out many women who suffer with chronic illnesses and repeated surgeries suffer from.

Through therapy I have realized I have to mourn the old Robyn. I have to learn how to go through life differently. Not to have high expectations because that leads to disappointment. I have to learn to make smarter decisions and be aware of what my body can handle. This is The life of someone who suffers from a chronic illness.

My reason for writing this is not for sympathy but to bring awareness to anyone who may have a friend or a family member who may suffer from a chronic illness. Having a chronic illness is a very lonely world that most don’t understand. Don’t assume because we look good we must feel good. Be there for your friend or family member. A simple phone call or visit can make the body and soul feel good.

I could have easily been one of the many people who gave up and couldn’t take the pain mentally or physically instead I choose to fight every day! In the endometriosis world, we call that being a warrior.



My discovery of endometriosis came after a doctor’s worry that I had an ectopic pregnancy. After an ultrasound later that day, it was confirmed I had PCOS. I was referred to a gynaecologist, who gave me an unconfirmed diagnosis of endometriosis just by a pelvic exam. Within a few months I had my first laparoscopy, with endometriosis confirmed and my ovaries drilled. My gynaecologist told me I had only one option: fall pregnant, have a few babies and get a full hysterectomy by the age of 30. I was 18 at the time of him telling me this.

Following his advice, my partner and I tried for a baby, and fell pregnant within 3 months. I was deemed high risk and had an ultrasound every month, eventually getting induced at 37+4 weeks due to severe pelvic instability. 1 month post birth I had an ultrasound to check my ovaries, and a cyst had already grown back.

Prior to pregnancy/birth, the only pain I ever had was during menstruation. Post birth I had pain constantly. My gynaecologist said I had only one choice left, which was to go on a 6 month course of Zoladex. I had been on 95% of the available contraceptions and my body had rejected every single one.

During the Zoladex I felt great, with no pain. Once I came off it, I was left with chronic fatigue and fibromyalgia. My pain was constant, I had “endo belly” every single night, which is both uncomfortable and painful. I was so sick that I could barely look after myself.

It took another 10 months to be referred to/seen by another gynaecologist at a hospital, as my current one had said there was nothing else he could do for me. The hospital decided to trial me on “Estelle 35-D” continuously, telling me I wasn’t allowed to have periods, as presenting to emergency once a month just wasn’t sustainable. As well as providing me with tranexamic acid for the breakthrough periods I did have.

After 3 months of this course of treatment, I had my next laparoscopy and they found no traces of endometriosis, despite an endo specific ultrasound a few months earlier showing my bowel was adhered to my ovary. During a cystoscopy, they noted bleeding within my bladder upon emptying, and gave me a diagnosis of Interstitial Cystitis. They discharged me from the service, saying there was nothing else they needed to see me for.

That was a year ago, since following the treatment of continuous OCP, my symptoms have almost completely gone. My periods are bearable thanks to the Tranexamic Acid, and I barely bloat. I’m working with a women’s Physio on my pelvic floor, which is constantly engaged due to being in protective mode of the pain.

I still get small twinges of pain similar to nerve misfires, throughout my pelvis and lower abdominal area, however I’m much better than I was.

This started at 18, I’m now 24. Not 100% better, but I’m not suffering every single day. Thanks for reading :)


Jane Doe

I actually have probably a very different story than most women.

I did not know I had endometriosis in 2007… I had no symptoms. I had regular periods, regular cramps for a day or two, and regular flow. I had sharp shooting pain and two days later ended up with lap surgery to have a grapefruit sized tumor removed from my ovary (the pain was torsion of the ovary). I lost the ovary as well.

What they were not expecting to find was endometriosis invading my body, especially since I had not normal symptoms. What is normal anyway?

I did 6 months of Lupron treatment and 1 exploratory Lap. Surgery in which she “lasered” off or removed a few remaining spots of Endo. I didn’t ask a lot of questions, nor did I research Endo much. I never realized how bad it could have become. For that, the tumor was a blessing, they found the Endo and treated it. The Lupron sucked but it worked from what I know.

I then had low progesterone and had to take Clomid to get pregnant with my first child.  Unsuccessful Clomid trying for my 2nd child and I stopped it.  30 days later I was pregnant miraculously and put on progesterone immediately.

I have had two c-section and I’m just now starting to notice some low grade off and on intermittent pain.  It’s seems rather cyclical but it’s also pretty random as well.  I am starting to have some low-key bowel issues. No painful periods.  Organic cotton tampons have been a game changer for me for lightening my flow and days.  I am on an odd 32 day cycle and my obgyn suspects perimenopause  and suspects I may have Endo returning, but tests show I’m still ovulating and without exploratory Lap surgery we don’t’ know about the Endo.

So I’m just waiting to see what happens. Waiting, every small pain I wonder what is going on with my body. Waiting for painful sex, waiting until I feel I may need a lap exploration done which I don’t want at all.

This disease for me has been VERY trick to navigate. I don’t have pain and heavy bleeding to rely on to know I have endo.  I don’t even know if I have endo right now, but I could have it again.  I’m at a loss and no one can help me?  I feel like a jerk complaining especially with women in excruciating and debilitating pain, but this is my story.

I have suspected Endo, suspected early perimenopause (I’m 34) and no one can give me definite answers or advice. All I know is I am a nightmare moodiness wise for the 10 days leading up to my period and I feel trapped for over a week of the month in regards to this horrible hormone imbalance. It’s PMS like I’ve never had before and it’s a nightmare for 10 days of the month.  I pray for my period to start because immediately I am ME again.  What is going on with my hormones?

What is going on with my body?


Jane Doe

I have been suffering with endometriosis for years – it’s been left untreated for 10 years. The pain I go through every month is no fun. I finally got a new doctor and had surgery, but unfortunately it didn’t help. There has to be something to help people like us so we don’t have to suffer. I’m 35 years old am unable to have children due to this.


Marianne & Emily

M: From the time I got my period at 11 is been heavy and painful. I remember going in to emergency a couple times thinking I had appendicitis but was told it was probably just cysts and there was nothing they could do. There was nothing they could do for my bad periods except give pain killers and birth control. I just accepted that my uterus hated me and I dealt with it and took days of to stay in bed until it was tolerable.

When I was 32 I started having sciatic pain every couple months, then a year after it was more frequent. When I was 34 it was happening every month with my period then the pain would go away. December 12 2014 it was the worst is ever felt and the sciatica caused foot drop. The Dr’s finally tried to help and had xrays, ct scans, mri, physio therapy etc. And the Mirena IUD inserted. The Mirena did work for a while but not so much anymore.

My pain is coming back and I’ve been having almost regular periods. I went to a spine specialist and they confirmed that I had degenerative disc disease but that shouldn’t be causing the back pain and was dismissed yet again. I had done a lot of research about my back since I thought that was the problem but never looked up the symptoms together.  November 2015 I started doing my own research and right away discovered sciatic endometriosis. I brought it up with my family dr and he said there’s no way that’s what I have. I have been reading about it obsessively since November and had 2 appts with the local gynecologist and he now told h me he thinks I have endometriosis and adenomyosis.

Some days it feels like if I pushed I’d give birth to a uterus. 😕 I can’t stand up straight, I have shooting pain, I can feel when I ovulate, random nausea and diarrhea, painful sex (which I haven’t had in a long time but I’m sure it would be worse now), the list could go on.

E (Daughter): My daughter was always having issues with her tummy since she was born. She’s had a couple barium tests and xrays but was told it was something she’d grow out of. She was either having diarrhea or constipation and pain. Then she got her period at 12. She says that the pain she was having was exactly the same as cramps. Last November and December she was having very heavy periods every 2 weeks so the end of December she was put on birth control and is helped quite a bit but I really don’t want her to have to go through what I did. I feel better now that I know what it is and can help her so she doesn’t go through what I did, but it’s horrible to know I gave her this.

I forgot to mention there is a family history of hysterectomys, but up until now I didn’t think to ask. I wish I would have. I’ve been asking for a hysterectomy for years, long before I knew what endo and adeno were, and while I know it won’t solve all my problems I know it would help immensely. I just wish I could convince the Dr’s to do it. They say I’m too young at 36 but I have my 2 kids and I want it gone!


Jane Doe

I knew I had endometriosis when I was 12 and my periods had started a year before because a girl in my class had it and they immediately knew because she bled horribly and her pain was intense.  I did not bleed a lot but my pain was very intense and I knew I must have it.  There were 3 other friends in my grade who had it (later confirmed many years down the line) so I can’t understand the statistics on why it is so few – that is totally inaccurate.  I kept going to my dr telling him I had it and he kept telling me I didn’t.  Amazing how he would have known considering he never looked inside me.   He sent me to a gynecologist who also told me it was impossible and to stop whining about the pain since it was better than cervical cancer.

My exams (paps) were excruciating and left me feeling violated and with hours or days or crippling pelvic pain.  Sex was and is the same way.

Endometriosis has stolen career opportunities, friendships, intimacy and any chance at a  sex life.  It has alienated me from every other menstruating woman or formerly menstruating women who never had this disease.  Women nod in agreement when I say my period pain is bad but they have no idea.  They go on with their jobs, having children, having a sex life without any thought.  They pop a Midol and are fine.  I take morphine tablets and they don’t work!  I’m still unable to stand just to do my dishes or take a shower when I’m on my period and sometimes outside of my period too.   I need to premake meals and stick them in the freezer including frozen pancakes for breakfast so that when I get my period I dont have to cook.

I had to fight for my diagnosis for 22 years and then another 2 1/2 years for surgery.  I got one of the best excision doctors here in my province and it still didn’t help.  I believe I have adenomyosis on top of this.  Before and since surgery I have not been able to walk a ten minute trip to the subway to get to work because of sharp stabbing pains in my side where the endometriosis was (the pain never changed after surgery).   This is after 2 years of pelvic physiotherapy, strict clean, organic eating for decades and as regular exercise as I can keep up with.

I’m exhausted all the time and suffer severe acne.  I can’t tolerate any of the medications and even if I could, they would destroy my joints further because I have a connective tissue disease and the hormones they offer break down much needed collagen that my body already has a hard time producing.  I wouldn’t want hormones anyways since all they gave me was more constant bleeding, migraines, worse acne, swollen breasts 24/7, bloating, nausea and chronic vulva pain which never went away.  Certain birth control pills can create chronic thrush and change the enzymes in your liver permanently leading to a burning vulva and vagina 24/7(vulvodynia) – something I am stuck with for the last year and a half since trying the last round of hormones.  My life is over.  I’m 30 and don’t have any children.  I can’t have sex anymore after struggling for years with vaginal pain.  I can’t sit down for more than a minute at a time due to the vulvodynia and I can’t work.  I have no money left for treatments. I’ve attempted suicide a couple of times and barely survived.  I wish I hadn’t.  I’ve tried every single pain killer possible for the pain and nothing works.  I just found out too that even with the changing laws on assisted death, I would qualify from my other condition alone (that also causes chronic pain) but because I am young no one would even consider it.   There doesn’t seem to be a way out of this hell.  Meanwhile I watch everyone else from outside my window having a life, managing somehow.

Kudos to those that manage to work with this illness.  I used to be able to push myself as long as I took dangerous overdoses of Advil – until that ruined my stomach and I now I can no longer eat many things or take the Advil.


Amy M.

My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

It is now 24 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.

I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is, these doctors I went to had never thought about listening to me and looked at me as if I was faking or as if I just wanted pills or something other than to simply be pain free.

Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.

I soon went on Lupron and had every side effect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.

Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.

I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.

In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realize how severe my disease actually was.

The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.

Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan!

Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.

We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments.”

In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF. Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The Clomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative.

It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.

All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practices, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease.

The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new! The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked. I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for the doctor to get me cleaned up and alleviate my pain.

Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.

The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.

In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!

We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy – doctor’s office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this.

All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favorite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.

And we did, in July 2012.

This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert in Brooklyn, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.

The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I’m not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.

Unfortunately, the last appointment I had with my favorite OBGYN, felt like many others I had previously, with no help in sight. That was November of 2013. In February of 2014, I was lucky to find another OBGYN. He was very sweet and reminded me of my first experience with the doctor who got me. I was happy to have someone in my corner again. In 2014, I went to a specialist in robotics surgery, my OBGYN referred him, not because he was an endo specialist but he was good at the surgery. I was so displeased with this Dr’s attitude and lack of empathy. I felt like he was doing me a favor for seeing me. I was literally crying in his office, he was one of those cruel people who don’t know endo and thought a hysterectomy was my only choice for a “cure”. I was in tears when I called my husband about it. By the time I reached my husband’s office, he was on the phone with Sabrina from Dr K’s office. The doctor is an endo specialist in NYC. She was so helpful of what we needed to do and how she would be in our corner as far as fighting our insurance company for coverage. I was in a much better mind frame after lunch.

That very evening, I had the honor of going to The Blossom Ball to volunteer, an event was hosted by Padma Lakshmi and her Dr, Dr Seckin. It was amazing, so many people supporting the endometriosis cause and I met a lot of fancy shmancy people. SO with Endo girls all around me I felt empowered to do what I needed to do. We waited until April of 2014 to make an appointment with Dr K, he does excision surgery and the initial visit, since not covered by insurance is a 100% out of pocket cost. We felt very comfortable with him and he really understood the disease and knew what needed to be done. His office administrator also knew her role in getting the surgery approved with insurance.

So here I was June 2014, getting yet another surgery, this time with a true specialist of the disease to excise ALL OF IT. I woke up from surgery and the results were very good, they removed all of it. I was diagnosed as a stage III of IV stages. Now the trick was to not get it back. I quit caffeine (which is a trigger) immediately and have not turned back to it to this day. On my most recent follow-up with Dr K, in January 2015, I was diagnosed with adenomyosis, this is where the inner lining of your uterus breaks through the muscle wall of the uterus. Nothing you can do to fix it other than removing the entire uterus. Such is life I guess.

As of June 2015, I feel good. I am currently on birth control to control my hormones and to stop my periods from being so awful. It has helped some. I am sure I have a long road with my endometriosis, but I embrace it as there is nothing else I can do … other than help others. That is what I intend to do! I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.



“How can you have endometriosis and NOT be an activist?”

My Endo Story starts with my first period, at age 15, (although the diagnosis of ‘endometriosis’ wasn’t raised until many years later).  I bled for weeks on end, and finally was brought to the E.R. after collapsing in the shower.

Two weeks later I was hospitalized for a serious case of Mononucleosis.  My doctor thought the stress of the heavy bleeding was what caused me to get  so sick with mono.  My blood count was so low, I was borderline needing a blood transfusion.  I went on to be diagnosed with Epstein-Barr Syndrome, and was in and out of school, sick, for the next year.

I was put on Provera, to “regulate my period”, and doctors kept me on some form of hormonal treatment until my early 20s, when I decided I wanted to get to know my own cycles and experience my natural emotional states. I came to realize that the horrible suicidal depression and sense of un-realness from the my teenage years were likely due to the heavy-handed hormonal treatments.  No doctor or adult warned me of possible emotional side-effects, or noticed the negative change in my mood.  I was too young to recognize it in myself or ask for help.

I believe I was 26 when “endometriosis” was brought up by a doctor for the first time. He ordered an ultrasound and found a large complex “chocolate” cyst on my ovary.  I remember surgery being brought up as an option, but I was discouraged by my doctor and my mother from having it, despite it being a relatively safe procedure.  It was 1997, and the first of countless times that a definitive diagnosis could have been made, but was not pursued.

I continued with very heavy periods, pain and worsening bowel symptoms through my 20s and into my 30s.  I was starting a successful career as a songwriter and touring musician. Very heavy painful periods were normal in my family, so I assumed it was just my lot in life.   I did my best to manage, and worked hard on building my career.

My first album was a great success.  I was preparing for a sold-out CD release show when I was struck down with unbearable pain.  My boyfriend brought me to the ER and I asked for an ultrasound, since I had previous experience with ovarian cysts.  The ER doctor refused, told me I had PID and dismissed me with a huge bottle of Vicodin and some heavy duty antibiotics.

I managed to play the CD release show on painkillers, but could barely stand from the pain.  It was far from the performance I had prepared for.  And instead of basking in the success of the evening, I finished the show and collapsed, exhausted, on a couch.  I followed up with a doctor who eventually did an ultrasound, and found it actually was a large ovarian cyst that had caused my pain.  I’d never had PID.  Endometriosis lurked in the back of my mind, but my inability to tolerate birth control pills and the lack of urgency or viable options given by my doctors kept me in limbo for many more years.

My bowel symptoms (constipation and pain) were getting so severe that I was trying everything I could do to regulate myself.  I eventually saw a gastroenterologist at around age 30.  He told me there was nothing wrong with me and that I was addicted to laxatives, and if I didn’t stop taking them I would be back in his office for a colostomy.  Ashamed and horrified, I added another layer to the huge burden that undiagnosed endometriosis was becoming.

I continued working hard at my music career, touring, recording and releasing albums.  By my mid to late 30s, my health was in serious decline.  Heavy periods with clots and flooding and pain had been an accepted part of life for decades.  My bowel dysfunction had progressed to the point where I could not have a BM unless I took an enema. I was having bladder symptoms too, feeling I needed to pee all the time.  I suffered near-constant yeast infections.  I was so sick with fatigue and weakness that I felt like a ghost.  ER visits became more frequent, due to hemorrhaging, severe pain or inability to have a BM.  The pelvic pain was constant, and felt like being stabbed with a red-hot poker dipped in battery acid.

Thanks to Austin’s HAAM (Health Alliance for Austin Musicians), I was finally able to access medical care and follow-up for the first time in my adult life.  I was found to be extremely anemic, with almost no ferritin.  I was referred to a gynecologist, who strongly suspected endometriosis and scheduled me for an ablation.  I woke up from the laparoscopy hoping to be cured.  Instead, the recovery nurse informed me that I had advanced stage IV endometriosis, the second worst case that my gynecologist had ever seen, and she did not have the skill to remove it.  Her surgical report noted endo everywhere:  ovaries, fallopian tubes, ureters, cul-de-sac, uterus, bladder, peritoneum, even my omentum had endo.  I was devastated.

The following months were a blur of trying to recover from surgery, a desperate attempt to keep my music career going,  searching for a specialist surgeon who could handle my advanced endo, and consulting with an expert who treated women’s illnesses holistically (and used compounded herbal medicines).  I looked at my lifestyle, my identity and my history of sexual and emotional trauma.  I got regular therapy and started a daily mediation and mindfulness practice.  I slowly realized how dissociated from my body I had become.  The pain and suffering were so bad and had gone on for so long, I literally could not be at home in my own skin.

A few months later I experienced a health crisis and went back to the ER.  I was in shock from blood loss and my inability to urinate or have a BM.  I was catheterized and a blood clot came out of my bladder (endo?), along with 1100 cc’s of urine.  After 4 days of hospitalization, I underwent emergency surgery with a self-described “specialist” in endometriosis.  He performed an ablation, released my organs that had been glued to each other with adhesions, and reassured me that all the endo lesions had been removed.  Wanting the best chance at recovery, and wanting to be a good compliant patient, I even attempted another round with birth control pills, despite my previous experiences with severe depression when taking them.

There was tremendous pressure from my family to recover quickly and be able to support myself financially.  This led to a catastrophic argument just a few days after my surgery was performed.  Again, I did not recover from the surgery as quickly as my doctor and family expected.  Within days of starting the “low dose” birth control pills, the emotional liability and strong suicidal urges returned.  I stopped taking them after a couple months’ trial.  At first I seemed to experience some decreased pain from the ablation, but this was short lived.  The bowel symptoms, heavy bleeding and clots had not improved at all.

The debilitating fatigue continued.  This, and constant muscle and joint pain, led to a diagnosis of Fibromyalgia in 2011.  My ability to work as a performer deteriorated until I eventually could not perform at all.  I applied for disability and was granted SSDI in 2013.  This relieved me of my dependence on my parents, who resented having to help me financially.  I continued the slow journey of learning to live with chronic pain and fatigue, and continued having heavy periods.

In 2014 I had my third laparoscopy with a new gynecologist, this time a daVinci-assisted excision.  My gyn surgeon released my bowel, which had been “tented up” due to adhesions.  Neither of the previous two surgeons had noted any bowel involvement, despite my horrific bowel symptoms.   Endometriosis was present on most of the surfaces that had been operated on previously.  My ovaries and uterus had re-adhered.   In a few years, my endometriosis had  more or less returned to the same state it had been before my first surgery.

This latest gynecologist also took the initiative to test me for adenomyosis, which I had never even heard of.  I was diagnosed with adeno via ultrasound in 2015.  My twin sister, mother, and two other sisters have all been diagnosed with endo or adeno.  (My mother didn’t even know she had endometriosis until she recently re-discovered the surgery report from her total hysterectomy, due to breast cancer, at age 42.)

Now it is 2016 and my life is lived on a day-to-day, moment-to-moment basis. I practice excellent self-care, but my health is still poor, and I am often confined to bed, by pain and fatigue, for days and weeks at a time.  My auto-immune symptoms continue, and I was recently seen by a rheumatologist who diagnosed me with lupus/UCTD.  My music career is on indefinite hold. My relationships have suffered.  Family and friends sometimes respond with resentment and contempt instead of compassion.

I try not to wonder too much how my life would be different if endometriosis had been diagnosed and treated back when I was a little girl of 15, hemorrhaging onto the bathroom floor.  Why I couldn’t get help until the disease had wreaked havoc on my life and my body.  Despite this I try to meet each day with joy, make music when I feel up to it and live as full a life as possible.

With my recent introduction to Nancy’s Nook and the Endometriosis Research Center, I am trying to get up to speed with the latest information.  I am heartened to learn of the few specialists who have dedicated their lives and careers to helping women with this terrible disease.  I am starting to pursue a doctor from the list, and addressing the financial and personal preparations to be seen.

I have hope that I will soon be able to eradicate endometriosis from my body once and for all.  Perhaps my auto-immune disease will go away once my body is relieved of the constant stress of endometriosis.  And perhaps one day there will be more options for treating adenomyosis as well.  In the meantime, I’ve learned from another Nook member about a non-hormonal prescription medication that can help reduce the heavy blood loss and clots.  I’d never heard of it before, and I’m afraid my doctors haven’t, either.  The combined wisdom and experience of these fellow endo warriors has been a great discovery.  (Nancy’s Nook came up as a suggested link recently when I read CNN’s outrageous Lena Dunham article.)

It gets me thinking:  with all the stigma and baggage attached to this disease, all the misinformation and shame and denial that women suffer, doctors’  hesitancy to suggest laparoscopic diagnosis despite obvious symptoms of endo, the inadequate treatments and outdated methodologies that are offered up by our gynecologists as if they were legitimate options, we have to ask ourselves: how can you have endometriosis and NOT be an activist?


Thank you for taking the time to do this project. I am the one in ten. I was diagnosed with endometriosis in 2008. My journey began in 2007, although looking back, I was having symptoms in 2004. In 2007, I had not been feeling well and went to the doctor. He wanted me to have a pelvic ultrasound. My pelvic ultrasound was unbearable. I was immediately sent back to my FP. I had a fever and he prescribed antibiotics.

A few days later, I was still not feeling better and was admitted to the hospital for 4 days. I was treated with IV antibiotics. They thought I had PID. My now husband had to be tested for STDs as did I, and we both tested negatively. I went to see my GYN in the cities. Yet another round of tests with no answers. We treated the symptoms, but still no answers. Fast forward to November of 2008, after being in agonizing pain for a year, missing work and still not feeling any better. A diagnostic lap confirmed the diagnosis of endometriosis.

I did depot Lupron for several months, which helped with the pain, but also caused menopause-like symptoms. Never again. I felt better for a while, but as time went on, the endo came back. My first surgeon did ablation. It only provided temporary relief. In 2015, I joined a Minnesota Facebook group. I was referred to Dr. Eric Heegaard, who is considered to be the specialist in our state. He performed my surgery in July of 2015. In addition to excision, he did a cystoscope, placed a foley and removed it in the OR, hysteroscopy, D&C, IUD insertion, right oophorectomy and bilateral salpingectomy. I have been seeing a naturopath for just over a year, and began using essential oils.

I still suffer from hypothyroidism and adrenal fatigue. I had two colonoscopies; one in 2008 and 2011. Since my latest procedure, I still have some pain, but overall, I am doing much better. As an RN, I have prided myself on learning as much as I can about endo. 1 in 10 women worldwide suffer from it. No one fully understands what causes it and there is no cure; only symptom management. It is not all in our heads. The pain, fatigue, depression & daily struggles are all real. Thank you.


Lorin Janae

My name is. I am 35 years young and have been coping with this disease for 23 years.

From the time I began my menstruation cycle, at the age of 12, I had horrible cramps, with accompanied vomiting and diarrhea and or constipation. My mother and her mother also suffered with this type of pain so we thought it might be “normal.” I missed days of school each month, and cancelled plans regularly. I was placed on birth control pills at 17 years of age with not real relief, EVER. I’d even been given prescription naproxen which also barely touched the pain. I assumed this was my life. One day in my senior year of high school, my pain was so bad, I had vomited and was hunched over in tears. I was sent to the nurse only to be told she would not call my Mother until I ate a bagel, and that she did not believe my pain was that bad. She told me I must be crying because of something going on at home! WHAT??!! She finally called my mom, and I did NOT eat the bagel, but I did however leave her office feeling invalidated and put down over this debilitating disease.

Here are my symptoms that I’m sure many others can relate to: debilitating cramps, contraction like cramps, sharp electrocuting pains, low back pain, restless leg, fever, hot sweats, vomiting, fainting, not being able to walk, crawling from bed to bathroom, electricity like pain in belly button, bleeding from my belly button, painful urination, painful bowels, blood in stools, appendicitis, excruciating pain in lung & diaphragm, nerve pain radiating from my neck, down my arm, in my shoulder blades. Collapsed lung, fatigue, exhaustion, depression, anxiety, sadness & feeling alone and unheard. – and I may be forgetting some!

Yes, I have been diagnosed with thoracic endometriosis. It is on my right lung and both left and right diaphragms. The symptoms I’ve had since 2007, but was looked at like I was crazy by my “trusted” OBGYN. At first she admitted to hearing about this. At the next visit, she never heard of it, this couldn’t be endo and to see my primary care doctor. I’ve suffered with this agonizing pain for 7 years (and current) until being diagnosed and confirmed. The same story is true for my abnormal looking belly button which gave me pain every month with my cycle since 2010. I was passed on to primary care doctor. Until March of 2014 when my belly button bled and I was rushed to the emergency room.

CAT scan showed appendicitis, which had nothing to do with belly button pain but nevertheless, I needed surgery which turned out to be endometriosis attached to my appendix & colon. To my validation, they biopsied my belly button and confirmed endometriosis as well as took a picture of my diaphragm with endometriosis. Happy day!!! I wasn’t losing my mind!! That same year in August, I had another surgery to excise the umbilical endometriosis. Fast forward to October 2014, I was back in the hospital for a collapsed lung. A total of 18 days in the hospital and 3 different procedures during those 18 days to repair my lung but my endometriosis was left to keep me company. Today I still suffer with pain and fatigue etc. I look forward to traveling to the CEC to have all of this taken care of on March 31st, with a team of the best doctors & surgeons including Dr Ken Sinervo!

Thank goodness for my Facebook support group, “Nancy’s nook endometriosis discussion and education” lead by Nancy Peterson. I have found out so much about this disease, the best ways to treat it and the true excision surgeons who know what they are doing. Before this group, I would have opted for ablation but now I know better and I am truly grateful! I long for a better quality of life. One without all this pain and anxiety of just how painful my cycle will be. I hope to be one of the last to be diagnosed so late in life and be heard by doctors who know and understand the disease enough to give REAL treatment to their patients.


Amy S.

I have to start this out first by saying, throughout this entire story, there is 1 thing that MUST be remembered…from the time I was pregnant with my first child which was 16 years ago, and right up until about 6 months ago, please remember this – I was treated by the same doctor all throughout those last 16 years. This doctor, whom I had every ounce of faith in, whom delivered both of my children, who’s performed now more surgeries on me than was EVER necessary, THIS doctor was very highly recognized in our community. He’s voted one of the best. He has awards worth mentioning, yet not deserving. I haven’t been mistreated by several uneducated doctor’s out there, and there are a LOT. Nope, I was mistreated by the same doctor, year after year, and I had no idea of another way. He was the best. That is to say, I had no idea there WAS a better way, until I came across the CEC, and Nancy’s Nook on Facebook (of ALL places!).

Okay, so I’m 40 years old now, I’ll be 41 next month. I was diagnosed with endometriosis after having a laparoscopic procedure done on a growing cyst I had, almost 4 years ago now. I had never even heard of the word, I was clueless. My doctor, who I had been seeing for over a decade just so causally informed me after having that procedure done, that “Amy, you have endometriosis”. That was it. He offered nothing more on it. The way he said it even didn’t imply much at all, it seemed like no big deal whatever it was. I had NO idea what having that even meant. I am ashamed to say, that it took me some time to even research it. Honestly, what made me look into it was because of a comment I had received some time later after being diagnosed.

I was having a sonogram done on my abdomen/area because of pains I was having and I was sure I had another cyst in there, rupturing, moving or something, and I was in a LOT of pain. So the radiologist started her usual 21 questions about why am I here, what are my symptoms, is there any history of anything….blah blah blah. I simply stated, “yes, I have endometriosis” – she just grabbed my hand, gave me the most sincere look on her face and said so sweetly “OH! I am so sorry!” I remember calling my sister when I left that apt and saying to her “wtf disease do I even have? Why did that lady say that to me that way?“ That night, I began my research…and I’m still researching. That was 2 ½  years ago.

I’ve pretty much suffered since middle school. I had the most horrific God awful periods, always very heavy…I can remember when I couldn’t wear tampons anymore because of how heavy they were. I was just in high school. My ‘history’ actually started with my first surgery in 2011. I had a rather large mass engulfing my right ovary that was over  9cm in dimension…about the size of a grapefruit, and it weighed 5 lbs. Pretty damn big. He removed this fibroid tumor and it had so completely taken over that ovary, that he removed it as well. I did okay for a little while, until my surgery in 2013. Okay meaning, as good as one can be when her ovaries and hormones are messed with – which, let’s face it, there is not a damn thing good about having your ovaries f***ed with! But this surgery in 2013 was because of yet another large and growing cyst on my left ovary now. Lovely. This is also the surgery where he recommends me to have an ablation done – due to my constant complaining of STILL having horrible periods, bleeding excessively, even losing large amounts of bloody tissue. That is what he suggested, removing these cysts and having an ablation done on my uterus to control the heavy bleeding. If ONLY I knew then what I have learned now, I would have demanded he test me for endo. I would have asked about excision. I would have asked about anything endo related I could think of!

I’ve been complaining to my doctor of now over 15 years, who’s delivered both of my children that I know now I’m blessed to have, of all my symptoms since at LEAST since my 2nd child was born – 10 years ago. After her birth, my body really fell apart. My cycles became horrendous. Sex slowly just become more and more intolerable. Pelvic exams were horrible, I laid and cried at many of them just waiting for them to be over. My doctor was always kind about it, well looking back now I realize he wasn’t kind, he was actually ignorant because he hadn’t tied any of this to endo. But he would always say “I’m sorry Amy, I know this hurts, I’ll be done soon”. My moods were out of control. I complained at every single visit all of these issues, and never once – not one ever dare mention of the word ENDOMETRIOSIS.

I have actually since asked my dr why he never ever thought of this, or why didn’t he see if I had this 10 years ago…why have I kept having surgery after surgery, and now there are no more female organs to even remove because as of  Feb 2014 I’ve had a complete hysterectomy….and this damn disease has gone NOWHERE. Why didn’t he EVER check this out before? He had no answers, no response that was good enough for me. All he had was “I’m sorry Amy, I do not know”. What kind of healthcare system is it when your highly awarded doctor isn’t up to date on the latest? My doctor was voted best in the area. He was highly recognized. Yet, he was completely uneducated on this disease. This disease affects 1 in 10 women and NOT ONCE IN 10 YEARS did he EVER think to see if I had this? What the hell is that? It’s UNACCEPTABLE.

Furthermore,  because he was uneducated, so was I, because I trusted him to take care of. He was my doctor, aren’t we supposed to trust in their care and knowledge!? I now have this body that is nowhere functioning at a normal level. Within 1 month after my hysterectomy, my endo pains kicked in full gear. This became another turning point for me to further educate myself. Hell, I wasn’t even told that having a hysterectomy ‘might’ not help. Of course he said it wouldn’t guarantee my endo would be forever gone, because there are no guarantees with any surgery. But, I figured I had nothing to lose in having the hysterectomy. It all made perfect sense to me, remove the organs, remove the issues. So in his mind sad to say, and in my mind, we had had other surgeries that weren’t successful,  I always seemed to have ‘some’ issue going on…and so the best solution WE had -so WE thought – was just removing it all. Seemed SO simple, and yet SO naïve when I think of it now.

I still can’t believe though that my dr thought having a hysterectomy might help with my endo. EVERY DOCTOR SHOULD BE EXCISING and TESTING to diagnosis with absolute certainty. There should be NO other options for our doctors.  My endo sure showed me though who was in charge after having my hysterectomy. It came back stronger than ever, (probably because it wasn’t properly removed and instead it was cut all up, burned out, spread the hell out all over in there after surgery) and I was bound and determined to not live in pain.

Daily pain is not something anyone should live with. I have a full time job, managing an engineering office, I have 2 kids and a husband and a house to take care of. I had a life to live. I couldn’t take hormones because they literally caused me to be in endo pains, non stop, daily. Which isn’t odd because I was taking a hormone that fed the disease I was trying to eliminate! There’s no better option to provide than that? That was NO life I was willing to accept. So we tried different things. I changed my diet and my heating pad became my best friend. I’ve tried herbal remedies, I’ve tried different hormone therapies, I’ve done the damn Lupron shot – and there’s another story on it’s own, for I also have now thanks to having rounds of Lupron shots; joint and bone pain, my vision has gone down hill, along with my cognitive thinking and the list is LONG – but sticking on the endo diet has been the ONLY thing that has worked effectively for me.  But it’s not enough, it’s not GOOD enough. I still live in chronic pain from endo. I shouldn’t have to live like this.

Not to mention now I also suffer all the after effects of going through surgical menopause, of taking the Lupron shots. So now that I’ve had the ablation done, I’ve had the hysterectomy, there really isn’t much left to take out…that is…except for this ENDOMETRIOSIS that STILL EXISTS in my body TODAY because of INEFFECTIVE SURGERIES. On top of all that, with each ineffective surgery I had came more adhesions, more scar tissue….just to further damage my insides.

This story is to help educate others. There needs to be more awareness of this disease. There needs to be information, pamphlets even in every single doctor’s office. I still to this day, look anxiously for that pamphlet on endo and leave saddened at the sight of none around. I had one of the best doctors in my area, so how did he miss this? Why is a disease that affects more women than breast cancer not being talked about more often? How can a disease that affects 1 in only 10 women continue to NOT be talked about? Why is having multiple unsuccessful surgeries, doping patients on pain killers, recommending long term side effects caused by having Lupron shot and just plain causing us to go completely bonkers on hormones all okay?? Why isn’t it more important to find a cure for this disease? How much longer can we ‘treat’ or ‘mask’ endo symptoms while not truly helping the person, before we all cave in to the desire of that pain free life after death?




After years of hospitalizations, misdiagnosis and pain, I was finally diagnosed with Endometriosis on May 29th, 2015. I didn’t know what it was and felt completely lost, there is so much misinformation out there and the internet propaganda makes it seem like is a cookie cutter disease – it’s everything BUT.

By the time I was 25 years old, I had gone through to several doctors. I was “diagnosed” with colitis, Chrons, had several scans to look for tumors, had several tests to rule out cancer and in 2012, my physician basically told me I was crazy and should find counseling. I started counseling only to find out that I was perfectly fine and that there was nothing psychological wrong with me; instead of relief I felt alone, crazy and completely lost.

On May 27th, 2015, I was rushed to the ER with severe abdominal pain; four hours later I was sent home with Tylenol and was told that it was just an ovarian cyst. The pain was constant and unbearable, finally the next day, I found a doctor willing to see me and that was the first time I heard the magic word. ENDOMETRIOSIS.

I had my surgery the very next day, it was supposed to take no more than 40 minutes, but it was so severe that I was in the OR for almost three hours. Endo had spread everywhere, uterus, ovaries, bladder, intestines and colon; to make it worse my organs were stuck together due to so much scar tissue and my out-patient 40 min surgery turned into a weekend hospital stay.

During my post-op I heard the phrase no one wants to hear…”THERE’S NO CURE!!!!!” My battle had just begun and I had a long way to go.

It still feels like a nightmare and I can’t wake up; I get up every morning knowing that I have to fight, because this is my normal. I pray that one day, women don’t have to go through life thinking that they are crazy or that they can’t take period pain or feel shame to talk about “women’s issues.” I wish that one day, this disease will be taken seriously and that future generations wouldn’t have to go through the roller coaster that many women, like me, have.



I have lived with endometriosis for more than six years now, so I have done my fair share of researching as well as trying treatments in hopes they would stop my pain. I started my period at 13 years old and always had very bad cramps as well as heavy bleeding, but I thought that was normal. However – it is not normal for us to have bad cramps or to miss school and work because the pain is so bad.

I dealt with this until I graduated high school. I was starting my second semester of college when I began have severe pain when I was not on my period. I knew this was not normal. One of my cousins had just had laparoscopic surgery for endometriosis so I knew a little bit about the disease. I went to my gynecologist and she put me on a birth control to see if that would help with my ovary pain. I stayed on this birth control for seven months before we decided that it might be best for me to have surgery to see what was going on.

I did not know anything about the different techniques for laparoscopic surgery and she was not a specialist. After surgery, she told me that I had endometriosis that she burned, but there was some that she could not remove because it was ‘too close to my ovary and she did not want to damage any of my organs.’ I continued having pain after surgery and she told me there was nothing else she could do for me and would not send me to a specialist.

Since my first surgery, I have had four more laparoscopic surgeries including a hysterectomy at 23 years old and have been to more than 20 doctors trying to find answers. During my third surgery, my appendix was removed just to make sure disease could not grow on it. I have tried almost all of the birth controls that are on the market as well as Lupron and Depo-Provera in hopes that I would find something that would decrease my pain so that I could get on with my life.

After everything I have been through since I tried Lupron, I would not recommend it to anybody. I have had a total of three doses of Lupron: two doses in 2011 and one dose in 2013. In June 2014, I was diagnosed with osteoporosis at the age of 24. The injection causes horrible side effects that can last a lifetime. I have tried most pain medications, but they did not help with the pain. They just made it bearable for me to sleep. Pain medications do not fix the problem. I know that endometriosis causes other health issues. Along with endometriosis and osteoporosis, I have also been diagnosed with Vitamin D deficiency, polycystic ovary syndrome, interstitial cystitis, retroperitoneal fibrosis, irritable bowel syndrome, scoliosis, and am getting ready to see a rheumatologist to find out if I have any autoimmune diseases.

Not only does endometriosis affect me physically, but it also affects my everyday life. I was accepted to pharmacy school in 2011 and 2014. However, I had to withdraw from the program both times because my pain level was too high for me to be able to stand for hours during labs, studying, and sitting through lectures. This was heartbreaking because this was something I wanted to do since before I graduated high school and found out I had endometriosis. I have lost friends because they could not handle me canceling plans because of my pain. They thought that I was making up excuses for not doing things with them.

Even though I have had a hysterectomy, I still have problems with endometriosis. I had to have another laparoscopic surgery a year after my hysterectomy because all of the disease was not removed during my hysterectomy. Although both ovaries were removed, endometriosis continued to grow because all of the lesions were not removed. Endometriosis makes its own estrogen, which causes the implants to continue to grow.

Millions of women suffer with the disease worldwide, yet many doctors do not know much about it. I have found that patients know more about the disease than the doctors who are trying to treat them for endometriosis, which is horrible.

Endometriosis has taken away my ability to have kids as well as any dreams I had set for myself before I was diagnosed. I do not want anyone to go through what I have been through. I hope to see a cure for endometriosis in my lifetime.


My story is like that of so many others. I “started” early – I was almost ten years old. At first, the periods were just uncomfortable. Then, in high school, they got worse but they were so infrequent that it wasn’t too disruptive. By college, my body hated me. I was still irregular, but it didn’t matter. My pelvic pain was virtually non-stop. I dealt with the pain for nearly two decades before I finally found a doctor who helped me achieve pain relief. Nearly two decades of dismissal and self-doubt.

For several years, I visited multiple doctors about my constant pelvic pain. I’d go through the painful pelvic exam, consent to all of the bloodwork, do an ultrasound, and travel somewhere for a CT Scan. It never failed, a cheerful nurse would call a few days later and let me know that nothing was actually wrong with me. “Your test results are fine. I hope you’re feeling better. We’ll see you at your next annual exam!” They were done – they hadn’t identified the problem and they were good with assuming there wasn’t one. And once again I’d accept it – maybe it was just in my head. And what else was I supposed to do? The PA saw me, the doctor saw me, they did imaging… nothing was wrong.

But why did it hurt so badly if nothing was wrong? Why did exercise make me want to cry? Why did trips to the bathroom leave me pale white and cramping for hours? I often brought up these questions in my annual exams. Here are some of the most memorable answers I got (with my commentary):

You probably just need to lose some weight.

Oh, so all fat women cry in the restroom? And skinny girls don’t? Did you miss the part where I told you it hurt to exercise?

You’re just experiencing what every other woman deals with. You’ll learn how to handle it someday.

So I’m just not very good at being female. That’s a great thing to tell an 18-year-old virgin who schedules a pap smear every year because she’s sure her pelvic organs are trying to kill her.

Maybe you just feel guilty because you’ve started sexual activity too quickly.

I first heard this comment at the age of 18. I wasn’t sexually active until I was 22 – and then it was with my husband. Even in the most guilt-ridden spiritual experiences, the marital bed is unlikely to produce such severe mental anguish that you create your own psychosomatic pain.

You may have an STD. Do you consent to testing?

Sure doc, if you refuse to accept that I’m a 20-year-old virgin with pelvic pain that is unrelated to STDs, test away.

You should get pregnant—sometimes that helps.

Gee, thanks, doc. I don’t ovulate (or even regularly menstruate). Pelvic exams are excruciating, even when you agree to use the little speculum. My abdominal muscles scream when I ask them to deal with a bowel movement; I’m sure I’ll be fine with an 8-pound human in there! And, oh, wait, I’m only 18 – I don’t need a child yet!

I can’t tell you how many times I heard statements like these. I attempted to count the number of doctors I saw about my pain and I think it is somewhere around 23 now. Yep—23 doctors in less than 10 years. I’d finally get the courage to visit a new doctor about my constant abdominal and pelvic pain. I’d go through all of the lab work, the excruciating physical exams, the imaging studies, the awkward health history discussions. I’d anxiously await the news – I just wanted answers. And instead, they would dismiss me.

It only got worse after I married. My wedding night was a bit anti-climactic, but I believed all of the myths about how it gets better. I tortured myself by trying to learn sex. Seriously—I really thought I might be doing it wrong. I started to believe them that I might really be crazy. I’m not a mental health professional, but I can testify anecdotally that female pelvic pain during sex is not good for a marriage, especially if the female has been taught that her pain isn’t real so she doesn’t mention it to her husband. Believe me, a loving husband can tell the difference between your “grin and bear it” and “oh, so wonderful” faces – but they don’t know why you’re grinning and bearing it. In today’s performance-focused world, it’s safe to assume he thinks it’s his fault. It’s a bad situation and I’m not really sure how we survived it.

The pain increased to constant and severe by the time I turned 27. I was in graduate school, so I first visited my student health center. My past experiences with student health centers weren’t great (in undergrad, it was the first place to suggest pregnancy as a potential cure for my nonexistent pain), but I was fortunate to get an amazing nurse practitioner. Sure, she put me through all of the same steps – an excruciating exam, bloodwork, an STD panel (which she acknowledged was just to rule it out if she referred me out), a sonogram, a CT scan, and an MRI. Later, she called to have me return to visit with the OBGYN on staff because the results all came back normal and she didn’t know what else to check. The doctor checked me out, saw me bracing for the pain, handed me a tissue for the tears, and immediately looked at the nurse practitioner with worry – yes, worry – in her eyes. For the first time, someone took me seriously.

She referred me to a “local pelvic pain specialist.” His nurse worked me in three days later. Finally, I thought, they’re taking me seriously.

The “local pelvic pain specialist” seemed knowledgeable. He recommended surgery and got me in quickly. I had surgery two weeks before Christmas, which he assured me would give me plenty of time to heal before the spring semester started. At my 8 week post-op appointment, my pain had only increased. His response: “Well, there wasn’t much endometriosis in there and you should be better. This isn’t healing pain because it’s been 8 weeks. You should just lose some weight.” Yep, we’d gone full cycle.

My hope crashed and I realized that I was exactly where I started. Somewhere in the anguish of recovering from what I refer to as a botched pelvic laparoscopy, I discovered an online educational group for women with endometriosis. I finally began to feel like I wasn’t crazy – and the hope began to grow.

In June 2014 (18 years after I started my period), I was lucky. Through the online group, I found a surgeon in Atlanta who has dedicated his life to properly treating endometriosis. He uses excision, a specialized surgical technique, to completely remove the endometriosis from the body. He doesn’t burn the top of the endometriosis tissue off, he cuts it out and eliminates the problem completely. Of the thousands of GYN surgeons in the US, only a handful have taken the time to become this skilled with excision of endometriosis. Only a handful have refused to let the insurance companies dictate the level of care they will provide. I’m thankful for him, but I’m also sorry. He is fully aware that he can give us our lives back, but the current insurance reimbursements make it difficult for him to do so without charging higher out-of-pocket patient fees. I’m so thankful that he doesn’t let the challenges prevent him from giving so many women such an amazing gift.

My surgery took about two hours. The endometriosis was not the most severe cases, but it was bad enough to effect my bladder, ureter, colon, pelvic sidewalls, uterosacral ligaments, round ligaments, and ovaries. In fact, my ovaries were “stuck” to my colon with scar tissue. This might help explain why I wasn’t ovulating.

Today, I’m nearly two years post-op. I exercise regularly, happily visit the restroom, enjoy a much better relationship with my husband, and try my best to provide support and encouragement to the thousands of women stuck on the other side of our journey.

As I write this, I’m 23 weeks pregnant. Despite nearly six years of being told we’d have to use a specialist, my sweet baby girl was conceived without assistance (and without pain, I’ll happily add). Looking back, I’m sure I’ve forgotten some of the frustration, the pain, and the dismissal, but I still remember wondering if I’d ever live a pain-free life and if I’d ever experience pregnancy.

I’m one of the lucky girls – I have both. Too many don’t get either and we shouldn’t be okay with that.



Hi from Sydney, Australia! I was 13 when I first started having symptoms, pretty much as soon as I got my period. At first it was cramps and heavy bleeding, which my mum said was normal, so I dealt as best as I could and tried to get on with life.

Soon though, just before my period came, I would get excruciating pain in my lower abdomen, to the point of having to stop and hold my breath until it went away. Then it was having to sit till it went, then lie down, then curl up in a feotal position trying not to throw up. By fourteen I was having regular ER visits where at first they thought it was my appendix, then diverticulitis, then cysts etc. At sixteen I had my first surgery, an exploratory by a general surgeon on my right lower groin which found nothing, so they told my mother I was making it up for attention and referred me to a shrink. By the way, it took my mother six more years to finally believe there was something physically wrong with me. I spent most of the years between sixteen and nineteen in agony, having to beg my GP for pain relief, curled up in bed biting on a pillow to stop from screaming, clawing the wall trying to get away from the pain, throwing up, head pounding, totally out of my mind. It was hell. I fell pregnant and had my first child at nineteen because I was told I’d never have kids, so no birth control. :( And it was bliss to have no pain during it, but it only took two months after her birth for it to come back.

I fell pregnant again and had my son at twenty just to have some respite, but again it returned afterwards. At 21 I finally had enough and demanded a referral to a gynecologist who listened to me and said “So, you’ve had endometriosis for eight years then.” Stop. Hold up. What is endometriosis?? I had my first laparoscopy three months later and was confirmed to have moderate disease on my uterus, bladder, lower intestines and all over my lower abdominal wall. Finally, a reason why I was like this! The reason why I couldn’t finish school, couldn’t hold down a job, broke so many promises, had two children just to get some relief. Then the whole wild ride of hormones, surgery, hormones, surgery started.

I tried every drug they had, progesterone, testosterone, Primula, Depo-Provera and Danazol. The Primula made me weepy, the testosterone made my voice deeper and I grew hair in weird places, the Depo-Provera drove me crazy and the Danazol made me suicidal. The side effects were worse at times than my disease. When I stopped treatment, my pain was indescribable, I’m shuddering now just remembering it, and my bleeding was that severe I was anaemic and passing out from blood loss. It also costs so much money to buy pads when you’re bleeding three out of four weeks every month!

I fell pregnant with my third child (after being told I’d never have another!) and had some extreme issues with the pregnancy (pelvic separation) and then had a surprise fourth child a year later with even more problems in the pregnancy with me spending the last three months in hospital in a wheelchair, so after she was born my new ob/gyn recommended a hysterectomy as a ‘total cure’ for my endo as well as never falling pregnant again. So I had a partial hysterectomy at 26, I decided to keep my ovaries so I didn’t have to endure menopause on top of recovery. Worst. Mistake. Ever. They botched my surgery ( I found out later my gyno left during and let a student do my procedure!), I only found out about this when I was having stomach pain a year later and had an X-ray which showed the surgical staples left in my abdomen! Apparently he nicked an artery and I almost bled to death and required a transfusion and no one told me. Nice.

I was so sick after and ended up being infected with hepatitis whilst in hospital which triggered my now ongoing battle with small fiber neuropathy. Thanks again Nepean Hospital. At least my endometriosis was now ‘cured’, right? That would be a big fat no. Twenty years later I’m still having ongoing pain. Now it’s also joined by pain from adhesions due to nine laparoscopies and one hysterectomy, pain from chronic arthritis due to having four children to try and get some endo relief, pain from surgical staples which are now moving around in my abdomen and causing issues, and constant chronic pain and symptoms from my small fiber neuropathy with autonomic involvement which was caused by the hysterectomy which was supposed to ‘cure’ my endometriosis!

Now my eldest daughter is fighting her own battle with this horrible disease and has her own surgeries and hormone horror stories to tell. Unfortunately my youngest daughter has also begun to show symptoms and I’m now struggling to find a specialist that is knowledgeable, compassionate, caring and most of all, up to date with current awareness of this terrible assault on womanhood.

Wish me luck.



My whole life I’ve had painful and irregular periods. Roughly 8 years ago, I started feeling pelvic pain every day. I also had a continuous fever, full body aches, and horribly unexplained nausea, and pain and problematic bowels. It became it unbearable so I went to my family doctor. And so it began. They ran test after test and I was given pain and nerve medication and referred to a Gastro doc. They ran tests, nothing. They did a colonoscopy, nothing. They referred me to a specialist a few hours away at Duke, and more testing and nothing. They then referred me to see a Gynecologist, so I saw 3, and even though all my symptoms are textbook Endo, no one even mentioned it to me. At that point I hit a brick wall and accepted that I would suffer forever. The pain gradually became worse. It put me in and out of the ER where I would be laying on the table crying, in a fetal position. One ( male) doctor said to me “women have one week a month where they are supposed to be in pain.” I’ll never forget that moment because I felt so defeated, and crazy and so depressed. I gave up.

Less than a year later I became pregnant and gave birth to a beautiful and amazing little boy! I breastfed for a year, so therefore had no periods. Once he weaned, they came back and the pain with it. 24/7 pain like I’ve never experienced before. I was so scared to do be told I was crazy again. Finally the pain and sickness became so bad, I completely blacked out 3 times, and decided after the last time I needed to try for help, again.

This time being a little older, I started researching and scouring the internet, and self diagnosed with Endo. Everything matched. Went into my doctors appt, told them everything and the doctor said “no, it’s not Endo, you likely have a fibroid.” Had an ultrasound, no fibroid. They referred me to another doctor in the practice, who finally after much persistence agreed to do an exploratory Lap on me. FINALLY! There it was, I was diagnosed with Stage 4 Endo. So severe, it’s completely devastated my bowels and has fused multiple organs. I had 2 laps to clean up large chocolate cysts, and free my ovaries from Adhesions. During this whole ordeal, I have been repeatedly denied any pain management, and was told that Tylenol and Advil should handle it. I began researching again, and tried every herbal and natural remedy to find relief. I even tried the “Endo Diet.” Nothing helped. It somehow felt like it made my Endo angrier!

I miraculously became pregnant! A true miracle, with how bad my Endo is. The doctors keep saying being pregnant will “fix my Endo”. As I sit here today, 6 months pregnant, I am in more pain than I have ever been. The Endo on my bowels is stretching, causing extreme pain and nausea, along with that mysterious fever. Most days I can barely leave the sofa, or play with my 5 year old boy. Being pregnant limits my pain management even further. Up until a few weeks ago, my doctors kept telling me there was no reason my Endo should be causing pain during pregnancy. Until they finally acknowledged that I should have had a bowel reconstruction surgery, before getting pregnant. Would have been nice to know that before!

I’ve lost friends, and family over this disease and have been told it’s all in my head. I am pregnant with a little girl, and the likelihood that she will have it is so high, and it’s devastating to think. I hope by the time she’s a teenager the perception has changed. So that if she does have it, she doesn’t have to endure what I have. One thing I’ve learned through this, is that we are our own advocate. No one is likely going to understand the pain and the struggle, unless of course you are lucky enough to live close to a specialist! We must keep spreading awareness, continually educating ourselves, and most importantly keep fighting.

Thank you CEC for what you’ve done for us!!!! I really can’t thank you enough!



What do I know about endometriosis?

I know that it doesn’t discriminate based on age, ethnicity, lifestyle, anything.  Endo can take out anyone.

I know that endometriosis takes far too long to be diagnosed, because we’re told time and time again that our pain is “normal”.  That it’s just “bad cramps.”

I know that so, so many women are misinformed.  That so many doctors are misinformed.

I know that it breaks my heart to know that there are very few happy-ending stories like mine, and it kills me to think that I can’t help other girls get the same positive outcome that I’ve had.

I know that there is no cure, and that excision surgery done by a true specialist is the absolute best treatment and chance at getting your life back.

I know that endometriosis tries to tear us down, but that it can make us so strong.

I know that I have endometriosis, but it does not have me.



What do I know about endometriosis?

I know my symptoms started when I was a teenager, about two years after beginning menses.

I know when, as a 19-year old, I brought my symptoms and concern for endometriosis to my attention of my OB/GYN, she dismissed my concerns because I didn’t have “enough” symptoms; since I wasn’t sexually active, I didn’t know if the symptom of painful sex was present, so it was apparently impossible to diagnose me. As if painful, debilitating periods, nausea, and gastrointestinal distress during my periods weren’t enough. (Forgive me for being a non-sexually active single teenager).

I know it took 14 years from the onset of my symptoms to get a proper diagnosis, when, at the age of 28, I established care with a new OB/GYN. I boldly announced to him that I thought I had endometriosis and to his credit, he believed me. My suspicions were confirmed 2 weeks later when I had a diagnostic laparoscopy, which I know is the only definitive way to diagnose endometriosis.

I know endometriosis is debilitating. When my symptoms quickly returned after my first surgery, worse than they had been prior to surgery, I spent my days curled up in the fetal position in bed, unable to do anything but exist on strong painkillers and wish to die so the pain would go away.

I know that oral contraceptives and GnRH agonists are only palliative therapies for endometriosis; they do nothing to treat the disease itself, which I why I refused to even consider taking them.

I know that excision is the gold standard for endometriosis care. However, my OB/GYN is not an excision expert. There are few surgeons worldwide who are truly qualified to perform excision surgery. I decided that I couldn’t take the suffering anymore, so I sought a second opinion with the experts at the Center for Endometriosis Care in Atlanta, Georgia. The day after my 29th birthday, I had surgery with Dr. Sinervo, who excised all the endometriosis he found, which was still present even only 6 months after my first, non-excision surgery had supposedly removed it.

I know there is no cure for endometriosis. While removing the endometriosis lesions via excision removes the disease itself, there can be complications such as scar tissue that are impossible to 100% prevent. I know my lingering pain is from scar tissue and it is a pain I have to live with every day. But when I consider where I was and where I am now, I will take this pain over the pain of raging endometriosis any day.

I know that traveling to have surgery with one of the world’s best excision experts was the best decision I have ever made in my life. Dr. Sinervo truly saved my life, and for that I am forever grateful.

I know I am one of only 176 million women and girls worldwide who is affected by this horrible disease that has no cure and not enough awareness. Together, with loud voices, we can respond with what WE KNOW about endometriosis and change the future for women with this disease.


An Interview with Dr Sallie Sarrel

aware15-300x98We’re excited to celebrate Endometriosis Awareness Month by bringing you the stories of those who know this disease best: all of you! We had an overwhelming response to our call for submissions last month, and we are very grateful to each and every person who wrote in to bravely share their accounts of what it is like to live with endometriosis. We feel there is no better way to raise awareness than to portray first-hand experiences, poignantly and courageously written by the real experts. Please take the time to read through them and remember – every day throughout March, new stories (and in some cases, links) will be shared, so check back daily!

We’re thrilled to kick off our Awareness Series with an interview conducted recently with Dr. Sallie Sarrel, a renowned Physical Therapist specializing in endometriosis and pelvic pain. We caught up with Dr. Sarrel at her practice in NJ to talk about how endometriosis has affected her life – and her profession.

Dr. Sallie’s StoryDr Sarrel
Dr. Sallie Sarrel PT ATC DPT is a Women’s Health Physical Therapist who splits time between New York City and New Jersey. Her long battle with endometriosis led her to develop a multidisciplinary program for women experiencing the chronic pain and muscular dysfunctions associated with endometriosis.

So – let’s get right to it. What’s Your Endo Story?
I had stomach issues, back, hip and leg pain for as long as I can remember. I would wake up at night all throughout my teens with pains in my foot. Even from my first period I had very heavy bleeding and clotting; plus migraines, lay-in-the-dark-and-cry migraines every period. My mother would tell me that women were supposed to have pain and that everyone lived with some kind of pain so I should stop complaining. I swam in high school and in college then later I took to running marathons and playing tennis so I thought the pain was from how hard I was on my body. I saw a chiropractor or a physical therapist at least once a week since I was 15 years old. My initial sexual experiences were painful, but my first gynecologists told me that was normal and wine before should help. Bloating dominated my life. My constipation was so bad it would keep me up at night, except when I had my period. Then I would have bowel seizing-bouts of diarrhea that squeezed my insides so tight I would sleep in the bathroom. I couldn’t sit down on my bottom, it felt like a rock was lodged somewhere in my sacrum. I couldn’t stand for long periods of time without pain. Plus I had horrendous food allergies, fluctuations of extreme moodiness, and fatigue. In the year before my diagnosis I saw 14 gynecologists, had 12 MRI’s, more ultrasounds than I can remember and 2 cat scans. They all were negative.

After hearing about endometriosis on TV, I decided I fit the symptoms and pursued the gold standard of the disease, excision surgery, for a diagnostic laparoscopy. A simple diagnostic surgery turned into a 6-hour procedure that gave me back my life.

In my post operative appointment my surgeon issued me a challenge: If I didn’t like what had happened to me- years of enduring misdiagnosis- I should take my medical license and change the treatment of endometriosis for generations to come.

That’s just what I have done. I started a private physical therapy practice for women with endometriosis. I traveled the world lectured on the importance of multidisciplinary care for women with endometriosis. It hasn’t been easy. I endured two more excision surgeries, an emergency hernia surgery, failed fertility treatments and despite the addition of acupuncture, physical therapy, and a specific exercise program I live with varying degrees of pain each day. But that’s minimal compared to my life before diagnosis.

How has being a Physical Therapist impacted your journey?
I am a physical therapist and an athletic trainer. My job is physical. For a very long time it was hard to advance in my career because my pain would hold me back. Not to mention surgery and treatment has a financial toll that prevents me from taking business risks. Just finishing my doctorate program in physical therapy was difficult. I had to be able to lift patients. I had to be able to demonstrate demanding exercises. I had to be able to get through hospital rotations without needing to urinate every few hours during my period. In medicine, your needs are secondary to everything else whether its an exam or a patient there is no room for back aches and crippling fatigue.

Being involved in medicine has defined my journey. In my early 20’s I suffered a freak skull fracture while working as an ocean lifeguard. Doctors attributed my heavy periods to the head injury. They offered me birth control pills. The pills made me sick and did not help my symptoms. In an effort to control those symptoms, I enrolled in cranial sacral courses. This was my introduction to manual therapy and I’ve never stopped pursuing more and more education in manual therapy.

In my first jobs as an athletic trainer when no one was watching I would lay on the training tables with hot pack and estim on my back for hours at time. I used the therapeutic ultrasound unit in whatever clinic I was working in on that spot in my foot to ease the constant burning. Incidentally, that foot pain disappeared after my first surgery. I changed my diet; I flew to gurus and meditated in tents. Any technique for back pain I would read about I would go to the person that wrote the article. I was so convinced my pain was musculoskeletal in origin that I went to every practitioner who might be able to help the back pain. For a few months I brewed custom teas that despite their $90 a bag price tag smelled so bad my neighbors complained. I wasted valuable time and financial resources on all these supposed “cures” for my pain. What I needed was diagnosis and quality interventions.

My love for exercise and fitness permeated my journey. Because the bloating and the pain were so bad prior to diagnosis I would torture myself in the gym for hours. The torture would continue when I got home, because I would rarely see results. After my first surgery, I discovered reformer Pilates. I went on to get certified to teach reformer and mat Pilates. It was easier on my body and taught my spine and core how to move again. On the reformer I felt supported and built up enough strength to stabilize my pelvis. My rehabilitation programs with patients now incorporate stabilization as well. After my fifth surgery I discovered the megaformer- a Pilates reformer on steroids, and have never looked back. My love for exercise but need for pelvic stability and safety has led me to present on the subject at international conferences.

Aside from working – which we know you do all the time! – what else do you like to do?
Freeing my pelvis from endometriosis has allowed me to engage in life again. I love playing tennis and am currently competing in a mixed doubles league. It’s a little tricky to schedule matches around my period, but luckily no one else but me has noticed every four weeks I have to sit out a match. I also love to travel. Before I was diagnosed sitting on a plane for longer than an hour or so was excruciating. But when we removed the calcified endometriosis from my sacrum the airways opened to me. I also love spending time with my beloved little poodles, Bailey and Dior, especially at the beach. Most weekends I am busy inventing new paleo, gluten free, dairy free recipes so I can look fabulous in either my athleisure or my gown at the Endometriosis Foundation of America’s Blossom Ball.

Let’s talk a bit about the way media often portrays the disease. Do you think this causes problems?
I never knew sex wasn’t supposed to hurt. I didn’t have a pain free bowel movement until I was 40. I missed school, work and lots of social opportunities because of pain and my period. I’ve had decent care after diagnosis, but I will never have a child. No one should have to endure this, ever. Years ago we didn’t have Google. The Internet and social media and all the efforts by the endometriosis societies and foundations have gotten us talking about endometriosis. I never even heard that word until I was 34 and everyone’s efforts have changed the face of this disease. We are prepared to help the next generation and I am so grateful for that. People don’t have to suffer alone.

Excision surgery excises the disease at its roots. This is currently our best defense against the disease. If there is pain post excision than we have a responsibility to incorporate pelvic physical therapy to treat the associated musculoskeletal pains. No one should have unnecessary surgery; no one should have an unwarranted hysterectomy. We owe our women better than this. When the media continually applauds treatments that don’t work and that do harm I fear we are failing our women. I’m tired of seeing things like “hysterectomy cures endo” or “Lupron is the same as surgery”. If endometriosis is present in the body and grabbing ahold of your nerves or peritoneum, just taking out a uterus and leaving the disease behind does nothing for anyone. Lupron has horrendous side effects and again, leaves the disease and all its adhesions behind. I went nearly 20 years without diagnosis and I am in medicine with a doctorate and access to medical care. Every day I work hard to educate people however I can that endometriosis is treatable. But it has to be treated right. If someone says to me that there are many ways to treat endometriosis, I always respond that there is one: excision. (and then hopefully pelvic pt). Endometriosis affects 1 in 10 women: that’s 176 million women worldwide. It is an international health crisis. In order for it to change, we must as a community of women demand the media teach people to stop perpetuating myths and nonsense that costs women the quality of life they deserve.

We know that it’s different for everyone…what are the highs and lows of having endometriosis for you?
During my second surgery adnexal torsion was discovered. As a result, I lost an ovary without informed consent. I was completely shocked when the doctor told me the ovary was removed as was my family. I am unmarried and the only girl in my family. When we arrived home as we pulled into the garage my father’s eyes filled with tears. Very softly he said that he had always wanted to be a grandpa. It isn’t just my hopes and dreams this disease has taken but it has stolen hopes and dreams from everyone around me.

Soon after I went into premature ovarian failure. In a desperate and very regrettable move, I endured an emergency egg freezing cycle. That cycle yielded not a single egg plus it caused my third surgery. Knowing that I am out of options for a biological child of my own is devastating. Even with specialized fertility counseling I still feel the sting of being motherless. I never imagined a life without a child, or a husband for that matter. You mourn, ever day in some way. You mourn for the child you could not have but most of all you mourn the loss of all those things that were supposed to be when you grew up.

It hasn’t all been bad. That vow I took to make sure no one else suffers the way that I did, I took very seriously. I truly believe it is time the women that have this disease speak up and speak out to change all of our futures. Each day, even if its just one woman I teach some one something that will help them live a healthy life with endometriosis. From diet to meditation there is always a way to unwind the mess endometriosis has caused. Excision may remove the disease from a woman’s body, but pain may remain. Pain may be from the pelvic floor or from chronic pain patterns and physical therapy is crucial to healing. (See this article for more information) My struggle with endometriosis allows patients to connect with me as a practitioner and surgeons understand that I not only know endometriosis inside and out, but I preach the wonders of pelvic physical therapy for ongoing post excision pain for a reason.

What do you see on the horizon for your practice?
In 2015 the Women’s Health Foundation, the largest women’s health foundation in the U.S. named me their Passion Award Winner for taking my journey to fight pain Below the Belt. Their award was a giant boxing glove which I proudly display in my New Jersey practice to remind myself that as broken as this road has been change can come one pelvis at a time.

Thanks so much, Dr Sarrel! We’re proud you’re out there in the community helping to improve lives. Happy Endo Awareness Month! Check back tomorrow to see our next story!

The Media Got it Wrong…Again

February 9, 2016 — From time to time, some celebrities and public figures will open up in the media to reveal their struggles with endometriosis. While it can be validating for some people to see personalities like Padma Lakshmi (arguably the most outspoken and high profile figure to begin speaking openly about her struggles years ago and who even formed a foundation to raise awareness for the disease) discuss endometriosis, the ensuing press coverage around their stories is typically rife with misinformation and gross inaccuracies, which in turn get shared in perpetuity because of the high profile personality attached to the feature.

Articles and books featuring the stories of those who have come forth to talk about their experiences with endometriosis such as Susan Sarandon, Jamie King, Kirsten Storms, Halsey, Stephanie March, Daisy Ridley, Pamela Anderson, Cyndi Lauper, Tia Mowry, Jillian Michaels, Julianne Hough and many, many others – even Marilyn Monroe and Hillary Clinton – all had disease inaccuracies in common when the articles were run (sometimes through no fault of the profiled subject who was merely sharing her story, but as a result of poor fact gathering by the authors who cover them). The situation is further compounded when certain organizations and key leaders within the endometriosis community cosign the misinformation with erroneous “facts” of their own. One need only check a news source or social media feed on the disease to see the far-reaching fallout. Unfortunately, this is the kind of awareness that endometriosis does not need more of, and we must insist on better. The moment an article begins framing endometriosis as a ‘hard to diagnose’ illness affecting older women, characterized by normal endometrium merely implanted elsewhere and growing like weeds by means of ‘backwards periods,’ easily treated by drug therapy, hysterectomy or non-excisional surgery, the author has ceased to be informative – and is in fact doing harm by publishing such statements.

Endometriosis is not a simple disease nor hard to diagnose, though diagnosis is considered uncertain until surgery is performed. The disease should be treated at the time of diagnosis – by the hands of someone who is an expert on endometriosis. To learn more facts about endometriosis, click here. To be certain, this is not a universal indictment of all media nor of any public figure who chooses bravely to share their endometriosis story. However, this type of feature all too often goes ‘viral’ and transmits the wrong messaging about the disease; thus we owe it to the global endometriosis community – patients, our dedicated colleagues, providers and researchers alike – to oppose the damaging information contained within such articles.

Unlike The Guardian, which published an incredible, well-researched 8-part series on endometriosis recently, most media gets it wrong time and again – serving only to further increase delayed diagnoses, contribute to poor information systems surrounding the disease, uphold deficient treatment options, and result in isolation and lack of support for those suffering. Enter CNN and their latest article covering Lena Dunham’s announcement that she would be “taking time off to rest” because of her struggles with the disease.

Predictably, CNN’s widespread feature posted both on their site as well as many social media outlets contained erroneous, outdated information on endometriosis, sparking immediate backlash from countless sufferers (all far more educated on their disease than the sources behind CNN’s article). We would be remiss if we did not also respond on behalf of our patients and those struggling with endometriosis, and have shared a copy of our response posted to the producers below.

Updated 2/13/16: as of this writing, countless responses have spiraled out across social media; CNN has yet to respond to any – however, they did make subtle changes in their article. Instead of ‘absolute cure,’ the statement now reads ‘hysterectomy may be the only cure’ – still incorrect. Sampson’s Theory is also still cited, as are the other areas of debate we responded to. Unfortunately, as of this writing, the same information found in CNN’s article now also appears in over 150,000 subsequent media/news articles and videos – including a viral feature on Good Morning America, further contributing to the spread of misinformation. Updated 6/15/16: while no corrections were ever made to this specific article, Ms. Dunham later acknowledged that her statement in a video she widely shared, in which she said “Lupron is the same as surgery,” was not entirely accurate.

Sent to CNN and publicly posted on February 9, 2016 — This entire article is straight out of the Old Wives’ Tale playbook. An opportunity to share helpful information with a broad cross section of society has again been squandered by media that remains too irresponsible to undertake actual research required to report authoritatively on the disease, instead opting for the superficial “first five hits on Google” approach. The legacy of misinformation enshrouding endometriosis unfortunately continues to be shared in perpetuity by sources like this – and even from well-meaning, well-respected providers to patients, from medical educators to next-generation healthcare professionals, from health publishers to media, from parents to children, from generation to generation; and even from some of the very organizations founded to advocate for the disease. The enduring lack of awareness at every level of society continues to undermine endometriosis, despite its status as a true community health crisis. Misinformation remains ubiquitous, pervading the media, healthcare community and general public alike – and once again, fails the individual with the disease.

The statement that “[E]ndometriosis [is] a condition most common in women in their 30s and 40s” is erroneous at best and dangerously irresponsible at worst, hinting that symptoms in youth should be ignored. In fact, as many as 70% of teens/adolescents experience symptoms early in life and even before onset of menstruation – yet the outdated notion that endometriosis cannot affect young patients leads to postponed diagnosis for several years – 30s, 40s – by which time ‘destructive lesions have affected the tubo-ovarian structures and severely compromised fecundability.’ [Brosen et al.] See also

Re: “Most people think that when women have a period, a few of these cells travel through the fallopian tubes into the abdomen and then they end up implanting where they shouldn’t be” – “Most people” think that because it’s largely what the press and those who lack knowledge about the disease continue to perpetuate. However, despite propagation of this premise by certain high profile endo organizations and others concerned with the disease, endometriosis is not simply bits of rogue, normal endometrium implanted via backflow periods, scattering wildly about the body like weeds. Long gone are the days of Sampson. Normal endometrium is profoundly, histologically different from the functional glands and stroma that comprise the disease, and while it somewhat resembles the tissue, it is not the same. This outdated, widely-touted notion continues to keep endometriosis mired needlessly in – and excuses – delayed diagnoses, oft-needless hysterectomy, poor surgical treatments, ineffective medical suppressives and wholly deficient support of individuals with the disease. See also

Re: “It can cause bowel problems, diarrhea, and cramping” – and infertility, painful sex, pregnancy loss, bladder pain, lower back/leg pain, organ dysfunction, crippling fatigue, debilitating periods, chronic pelvic pain, collapsed lung in the cases of pleural endometriosis, an increased risk of comorbid conditions…the list goes on. Endometriosis is not just simply painful periods with transient minor symptoms. See also

While it is true some may not even be aware they have the disease, such is the exception vs. rule. In contrast, most have tirelessly sought a diagnosis for more than a decade across as many as 5 or more physicians before someone took them seriously and listened to, rather than dismissed, their narrative. The problem does not lie in symptom presentation – it lies in the fact that most are not listened to by their providers/loved ones when they do present with symptoms. See also

It is obvious those consulted for this article do not have the benefit of widespread exposure to the global endometriosis community and the 176 million individuals struggling with the disease. Those of us who do, know that a great proportion of individuals living with endometriosis indicate thatsignificant disease-related affects interfere with their daily lives” and that their pain is often “incapacitating.” [Fourquet et al.] Endometriosis is a *major* public health problem affecting every single aspect of nearly 200 million lives (and costs society billions annually), not just a “small group” of some individuals in pain.

Re: “[T]he only absolute cure, said Sullivan, is a hysterectomy.” – This egregious statement and the outdated mindset which supports it are responsible for countless, unnecessary hysterectomies. Though hysterectomy does have a place in treatment for select cases, endometriosis is not “cured” by the procedure. Abundant data supports the fact that “endometriosis will be found…in a significant number of women with chronic pelvic pain status post hysterectomy with or without BSO, especially if the woman has a positive history of endometriosis.” [Nezhat et al.] Worse; an individual may read articles such as this and request a hysterectomy when other conservative approaches would be more successful. We must put an end to this irresponsible, dangerous myth, along with the notions that hormone/drug therapy, pregnancy, ‘rest’ and other such ‘treatments’ are somehow curative. In fact, most patients will need complex, multidisciplinary (excisional) surgery combined with adaptation of lifestyle changes – yet few are guided towards Laparoscopic Excision (LAPEX) surgery by their providers and remain unaware of other non-invasive, adjuncts such as physical therapy, nutritional approaches and alternatives that may help when combined with quality surgical treatment. Despite the increased challenges presented by meticulous and thorough dissection of disease, complete excision is possible in most cases and offers significant improvement in sexual functioning, quality of life and pain to many individuals, including in those with deeply infiltrating/fibrotic disease. Superficial surgery and medical treatment, however, will undoubtedly result in the continued pain, symptoms, and vicious cycle of ongoing, failed superficial surgical + hormonal suppressive approaches that are characteristic of the disease.

(c) Endo What & Arix Zalace, Patricio Cohn & Shannon Cohn

(c) Endo What

As we have stated before, the conversation about the physical, conceptual and political facets of endometriosis is limitless – but making the difference starts with all of us. In our work, in our conversations, in our presence in society at large, among our healthcare providers – and particularly among our media which has the capacity to help so many individuals who may be suffering silently. The global endometriosis community deserves nothing less. Truly, endometriosis is a key public health initiative needing further promotion, understanding, research, empathy and our united voices – not superficial click bait using the latest “It Girl” to spread more misinformation and inaccuracies to readers.



The Case for Surgery for Endometriosis

The quality of the surgery, not necessarily the procedure per se, holds the key to conclusively treating endometriosis.” Read more in the October 2015 feature on endometriosis in Contemporary OB/GYN:

Contemporary OB/GYN > Obstetrics-Gynecology & Women’s Health > Endometriosis



Endometriosis: the hidden suffering of millions revealed

The Guardian Journalists Sarah Boseley, Jessica Glenza & Helen Davidson take on the hidden suffering of Endometriosis in their feature article:

Be sure to also check out several, additional features in The Guardian from the week of 9/25/15:



Why Menopause Won’t Cure Endometriosis, Fibroids, or Ovarian Cysts

Why Menopause Won’t Cure Endometriosis, Fibroids, or Ovarian Cysts


When your periods stop, symptoms of these common female reproductive conditions might not. Read more about why at this Everyday Health feature.

CEC heads to DC in Support of Infertility Legislation


CEC was extremely proud to represent in DC

Have you, or has someone you care for, struggled with infertility? You’re not alone. In the United States, conservative estimates indicate that at least 1 in 8 couples will have trouble getting pregnant or sustaining a pregnancy. In our community, those estimates may be even higher, as endometriosis is a leading cause of infertility. Because medical treatments for infertility are rarely covered by health insurance, couples are faced with extreme financial burdens to treat infertility, and are sometimes unable to pursue the treatments they need to build their families. As a tireless bench to beltway to beside advocate and proud supporter of RESOLVE Advocacy Day, the Center for Endometriosis Care is extremely honored to have been part of the delegation to Washington, DC to meet with legislators in support of these very critical issues on behalf of our community.

IMG_20150514_131236As a leading cause of infertility, endometriosis is part and parcel of the scientific and programmatic steps needs to implement key actions to improve the lives of those who struggle with infertility and pregnancy loss. Infertility is a pro-family, bipartisan issue, and we are extremely honored to have met with a number of various staffers in both House and Senate to discuss the dire need for improved access to benefits and resources, not least of which include the offices of Senator Perdue, Senator Isakson (Chair of the Senate Committee on Veterans’ Affairs), Representative Price and Representative Maloney. We are very grateful for their time and the opportunity to review a critical legislative agenda which will advance support for the cause, including:

Support of the CDC National Public Health Action Plan for the Detection, Prevention & Management of Infertility, which requires bipartisan financial support;

Co-Sponsorship of S469, the Women Veterans & Other Health Services Act of 2015, which would provide increased benefits including access to reproductive technologies and adoption assistance to wounded Veterans who experience a loss of fertility related to their service to our country;

Co-sponsorship of S950, the Adoption Tax Credit Refundability Act of 2105, which puts the refundable provision back into the language of the Act so that families who need the credit the most to adopt children can receive it; and

Co-sponsorship of Representative Jeff Miller’s (Chairman of the House Committee on Veterans’ Affairs) newly-introduced HR2257, which would lift the ban on IVF and improve services for and access to reproductive treatments for disabled Veterans.

You can learn about all of these critical issues and more – and get involved – by supporting RESOLVE, the national infertility association. Established in 1974, RESOLVE is a non-profit organization with the only established, nationwide network mandated to promote reproductive health and ensure equal access to all family-building options for men and women experiencing infertility or other reproductive disorders. Learn more at

The CEC is privileged to have joined renowned powerhouse Barb Collura, President & CEO of RESOLVE and her tireless staff along with nearly 200 professionals/industry reps and patient advocates from across the entire United States in support of infertility advancements.

RESOLVE President & CEO Barb Collura standing tall on the Senate steps

RESOLVE President & CEO Barb Collura standing tall on the Senate steps

In the endometriosis/infertility community, #NobodyFightsAlone.

Family-building through photobombs with Barb from RESOLVE & Julie from Ferring, Inc.

Family-building through photobombs with Barb from RESOLVE & Julie from Ferring, Inc.

FRACTURED FEMININITY: Endometriosis Treatment & a Failure of Feminism

Dr. Joy Marya Stevans is a professional singer and voice professor based in the Washington D.C. area.

“For those of us who wish for proper care and healing, our current culture leaves us no choice but to act loudly and boldly in our own best interests, which are too often being ignored by the medical establishment and society at large.”


One Woman’s Journey with Endometriosis & Adenomyosis

videoDon’t miss Rebecca’s story and overview of her journey from pain to overcoming endometriosis and adenomyosis. Click here to access her video montage.

EndoQ&A With Dr Sinervo [Transcript]

Chat Q&A with Dr SinervoTranscript of Previously Broadcast Live Event

Endometriosis Q&A with CEC Medical Director & Excision Surgeon, Dr Ken Sinervo

Hosted on 5 March 2015 by The Endo Challenge Team

The CEC thanks all 568 attendees who took the time out of their evening to join this event, with a special thanks to the Endo Challenge team for hosting Dr Sinervo and planning, moderating and executing the chat. Though Dr Sinervo was unable to address many questions due to time constraints and the sheer volume of questions posted, we have followed below with the Q&A dialogue that took place. Thank you so much again to all attendees, and to the organizers for letting us participate in this fun and informative event!

Q1: Many of our followers are well educated on the CEC and your many accomplishments, but for those who are new to the endo community, could you briefly introduce yourself?

A1: I am the medical director at the CEC or center for endo care in ATL – Our practice specializes in laparoscopic excision of all endo within the body for management of pain and restoration of fertility when appropriate. We have treated almost 5000 patients with great long term results.

Q2: With so many women in the world having endo, why do you think endometriosis has not been taken more seriously by the medical community? Why are there so few specialists? Why is it that we still don’t have a cure?

A2: Unfortunately, I think it is many factors that result in poor medical treatment. We have been trained that there is no difference in how endo is treated, but there is a huge volume of literature to support excision over ablation – in fact, in Europe, they recommend excision whenever possible. When docs predominantly try to destroy endo, they universally have poor results – 80% having recurrences. However, with excision, we have less than a 7% recurrence rate (which is probably even lower than a few percent based on pathologic analysis). So docs don’t even want to offer something with such poor results. Specialists have to have an interest in it – too many do not want to deal with “whiny” (not my words) patients because they are labor intensive and learning to perform advanced laparoscopic surgery and require large volumes to get better. No cure since we are still trying to figure out the mechanism by which endo occurs.

Q3: We know that endometriosis can run in families; realistically, how much should a woman with endo fear passing it on to her daughter?

A3: If you have a first degree relative, the risk that daughter will have it is about twice the risk in the general population – so if 7-10% overall; it would be about 15-20% risk. Even in identical twins only between 35-40% of both twins have it.

Q4: What advice can you give to women who suspect they may have endometriosis or are struggling to be taken seriously by medical professionals? How can patients advocate for their own healthcare without being seen as rude or discrediting their knowledge?

A4: Unfortunately, most women see way too many docs and sub specialists before they are diagnosed with endo – probably takes about 7-12 years to get diagnosed. I think that you have to show them how your symptoms have progressed and affect quality of life. ‘Bad cramps’ don’t keep you out of work, especially if you have tried NSAIDs and birth control. Bad periods, in association with other symptoms – backache, painful intercourse, painful bowel and bladder symptoms, on the other hand, there is a very high likelihood of having endo. Trying more than one type of birth control has not been shown to be of any better outcome and there is no rationale to try more than a 6 month course of them, and if no better a scope should be next. Excision should be offered. If not move on. Medical treatments should not be tried till after confirmation with scope and best treatment.

I’m too blunt to ask about how not to “hurt” your doctor’s feelings. Getting early diagnosis and effective treatment are the most important things.

Any doc that says you will likely need repeat surgeries every 6-12 months is a quack and you should leave immediately. 82% of our patients only need one surgery, 2-4% need a 3rd.

Q5: If a doctor suspects endo but doesn’t want to do a lap to confirm, what would you suggest for the patient? Can a patient get a diagnosis without surgery?

A5: Really need a surgery for confirmation of diagnosis. Usually recommend ruling out other diagnoses at the same time if not done before (IC, Adenomyosis, adhesions, etc.). Endo can be suspected by history and physical, and ultrasound may confirm if you have severe endo but most do not have endometriomas.

Q6: Many doctors claim to be endometriosis specialists or excision experts but are not. How does a patient really know if she is dealing with a specialist?

A6: Tough one. Most gynes say they treat endo, but how do you know they perform excision. I would ask if they excise, what energy they use to do it, how do they treat endometriomas, what would they do if there was endo on the bowel or bladder that was invasive. Have they ever performed bowel resection, bladder resections? How often do they open up patients (our rate is less than 1 in a 1000 surgeries). Ask them about surgical volume. Very few can do both obstetrics and be an excision surgeon. I operate 4-5 days a week and could not deliver a baby if I tried – too busy.

Q7: Are there any limits or prerequisites for surgery with a specialist? For example, can a teen be too young for excision? Do you need a confirmed diagnosis before seeking excision?

A7: Excision can be done on all patients with endo from teens to post menopausal. In fact, I recommend excision in all patients because if we can minimize the amount of unnecessary surgery that would be good for all especially the patient. Risk of recurrence may be a few percent higher in a very young girl but if we can prevent the majority of severe cases by early intervention, that would be HUGE. About 25 %of our patients have never had a scope before, but less than 1% don’t have endo found.

Q8: Do you have any recommendations or advice for patients who must travel for excision surgery?

A8: HG – Traveling to an excisionist is a very broad question as each patient’s needs are different, however, in general – working with the center’s local resources e.g. hotels, etc. on discounts can help, working with the healthcare providers involved on various payment or discount options to reduce costs if necessary, fundraising efforts, etc. etc. can all be helpful, but again it’s very broad and based on need.

Q9: For those who cannot afford excision or do not have access to a specialist, what would be your suggestion for treatment? Are there any alternative medicine remedies that have been proven to be helpful for endo sufferers? Are Lupron and hysterectomy effective treatments? If not, why do so many doctors suggest them?

A9: Ultimately, excision is the desired treatment but when not possible, I would recommend treatment with birth control (whether pill, nuvaring, depo-provera, Mirena etc.) to buy time. May need to see pain specialist to manage pain till surgery an option. Could try ablative surgery to buy time but this is usually only ok for months up to 2 years if lucky). Not a big lupron fan due to many side effects, suggestion that much of their literature was made up leading up to trials, and seen too many severe side effects. If may be an option for some, but probably the last in my book (and not cheap – better off saving the money from lupron and getting insurance and saving deductible to get proper treatment).

Hysterectomy CAN be effective if all the endo is completely excised at time of hysterectomy. BUT the main article that is used to justify hysterectomy and removal of the ovaries was based on the fact that excision was not used during surgery – 60% with ovaries had recurrent pain; 10% without ovaries had recurrent pain – when we do excision, 82% do well and don’t need hysterectomy or other surgery; when we do hysterectomy and leave ovaries, less than a few percent need more surgery, if ovaries removed due to too much disease or patient need, almost never any more endo in our hands.

Q10: From all the research and studies done over the years relating to endometriosis, what do you feel has made the biggest breakthrough in understanding the cause of this disease? We often hear that certain events (miscarriage, tampon usage, c-section, every random theory under the sun) are linked to endometriosis. Is there any truth in those statements?

A10: All of the theories you mention are not likely related to endo. I think that there is a lot of evidence to support the idea of being born with endo (or the cells with the potential to become endo). Fetal studies that show endo in about 10% of fetuses. Lack of any actual images of endometrial cells implanting and invading into peritoneum. They can show that ectopic endometrium can grow into tissue in a Petri dish but it has never been seen naturally. Retrograde menstruation occurs in about 80-90% of women before and after surgery, so why do less than 10% have recurrent endo – because that is likely not the mechanism of how endo develops for most women. Then looking into genetics of endo, and seeing if we can identify genes that we can endo, and then developing gene therapies to prevent the disease from progression or tissue damage. Endo can occur in a c-section scar but is relatively uncommon.

Q11: How closely is endometriosis related to ovarian cancer and IBS, if at all? If a patient was diagnosed with IBS prior to being diagnosed with endometriosis, is it likely that the IBS symptoms will continue after excision?

A11: IBS is very common in patients with endo (one talk I gave to women with endo suggested about 80% were given the diagnosis). However, the percent with bowel symptoms after excision is about 20% of what it was before excision. Many women will go years because they were told they had IBS and in reality had endo – meanwhile suffering infertility, and years of pain before getting the diagnosis.

With regards to ovarian cancer, there is a 2-3 fold risk in a few small subtypes of ovarian cancer which is less common ovarian cancers. Clear cell and endometrioid cancers in particular. Use of meds like clomid may increase that risk even more. Good thing is there are studies which suggest that either having your endo excised, the endometrioma completely excised or removed, or ovary removed decreases risk of cancers by 60-80%. I really believe that excising all that abnormal tissue decreases risk of cancer in the future – no more inflammation from the endo, and less tissue damage which can lead to endo. There can also be malignant transformation (the endo turning into cancer as opposed to the endo being apart of the process that may have lead to a cancer) but is very uncommon – probably less than 1% of cases of endo. So endo is ASSOCIATED with higher risk of ovarian cancer, but not causally tied to causing cancer. Probably relates to ongoing inflammation.

Q12: How common is pelvic floor dysfunction in women with endo? How does one determine if physical therapy will help?

A12: The true incidence of pelvic floor dysfunction in women with endo (and other causes of pelvic pain) is unknown. I can only extrapolate from my practice in which the incidence is between 20-30% of patients. If patients have tender pelvic floor muscles, I believe the great majority (85-90%) will get better with pelvic floor physiotherapy. Sometimes may need other meds like valium suppositories, antispasmodics, neural stabilization meds, etc.

Q13: Can endometriosis cause abnormal pap smears?

A13: No, endo does not cause abnormal pap smears – exposure to HPV is likely the cause of most abnormal paps (and a few other causes are much less common).

Q14: Dr. Sinervo, do you have any final remarks or advice you would like to share with the women of the endo community?

A14: Just believe in yourselves if you feel you have endo. Seek advice of true experts. Seek early intervention and try to pursue excision if at all possible. Don’t be discouraged by this disease. You are all strong and can get through it. We can almost always win the battle.

I have been blessed to have so many success stories in women who have had many surgeries and tried everything under the sun. We can win with early diagnosis and excision. God Bless.

Preparing for Pelvic Physical Therapy by Dr. Sallie Sarrel, PT, ATC, DPT

Dr. Sallie Sarrel
The CEC often refers our post-excision patients to Pelvic Floor Therapy with highly qualified PTs who specialize in endometriosis and pelvic pain. It can be helpful to know what to expect, what the goals of your therapy are, how you can create a partnership with your PT and more. We’re very pleased to share some of Dr. Sallie Sarrel’s expertise to help you get prepared.

When treating endometriosis, your surgeon may choose to refer you to Pelvic Health Physical Therapy. Pelvic Health Physical Therapists are members of the team that treat the many causes of pain for the woman with endometriosis. Pelvic Pain is very complex, and in order to live the highest quality of life you can with endometriosis, you must treat all the causes of pain.

Preparing for a Pelvic Physical Therapy session can seem daunting, but here are just a few tips to make the situation seem less overwhelming:

Treat the First Session as a Fact-Finding Mission
During your first physical therapy session, the Pelvic Physical Therapist takes a medical history. Many send out questionnaires to be filled out before the session. Your therapist is exploring your case and you can explore your therapist as well. Ask your therapist how much experience they have with endometriosis, especially if your disease and surgical history are complicated. While Laparoscopic surgery may leave little scars externally, the work inside is complex. Treating women with endometriosis isn’t like treating most other populations, because the anatomy can become distorted from the disease. Find out how your therapist usually treats women with both pelvic floor dysfunction and endometriosis.

Many Pelvic Health Physical Therapists are primarily manual therapists. They believe in using skilled hands to elicit change in your body. To treat endometriosis, it is preferable for the pelvic Physical Therapist to be trained in techniques that address musculoskeletal causes and visceral relationships. Practitioners should have advanced training in visceral manipulation therapy and have significant training in pelvic floor work. Many Pelvic Health Physical Therapists also have training in Pilates, yoga, and nutrition to better facilitate lifestyle changes that will help your pain. Women with endometriosis often find the use of sensors or dilators internally rather uncomfortable. You should discuss your feelings on their use and your therapist’s beliefs on their use. Make sure you see eye to eye. Most of all, the first session is the time to decide if you and the Physical Therapist make a great team together. This is your health and physical therapy should be a partnership.

So, You May Have an Internal Exam…
Women with endometriosis may have issues with the muscles inside the pelvis. This is called pelvic floor dysfunction. Women with endometriosis can also have trigger points within the muscles of the pelvic floor. When a tiny fiber of a muscle or tissue stays contracted but the rest of the area does not, you can get an area of hypersensitivity called a trigger point. The trigger point can cause pain elsewhere from its location. Your trigger point may be inside your pelvis but it could cause lower abdominal or rib pain. You can have decreased mobility of scar tissue from childbirth and surgeries. During your first visit the physical therapist may want to evaluate your pelvic floor for some of these issues. Therapy will typically be in a private room. You will empty your bladder prior to the exam and then the Therapist will step out of the room so you can undress from the waist down and cover yourself with a sheet. Then the Therapist will conduct an exam much shallower than your regular GYN examination. It is a one- to two-knuckle deep exam. They will tell you step by step what is going on. Remember pelvic Physical Therapy is about that partnership – if you are not ready for the internal work, you need to speak up. This is your appointment and you need to be comfortable.

…Or, You May Not
You do not need to have the inside of your pelvis treated to make therapeutic gains. It certainly is one very useful tool in the Pelvic Health Physical Therapist’s toolkit but it is not the only tool. For non-sexually active women, especially teenagers with endometriosis, and women with issues like vulvodynia and vaginitis internal work, despite pelvic floor spasms, may not be advisable depending on the case. But, it is possible even without internal therapy to have improvements in your pelvic floor and pelvic pain. Additionally, you may have trigger points in your abdomen especially in the Psoas or hip flexor muscles. You may have spasming in the muscles around the umbilicus or other abdominal areas. The back and hip muscles may have length and strength issues. Your Therapist may chose to use that Visceral Manipulation technique to help work with the fascia, a saran wrap substance around everything in the body, to alleviate pain and dysfunction. For example, the fascia of the bladder ligaments is contiguous with the pelvic floor so visceral manipulation therapy may release issues driving your pelvic floor spasms. An internal exam is helpful, but it isn’t the only thing a Pelvic Physical Therapist can do to make you feel better. The treatment program should meet you where you are that day and that may or may not include internal work.

It isn’t all About the Pelvis – Even Though it is
Women with endometriosis tend to have central nervous systems that are highly reactive. You have experienced so many years of immense pain that the system is overwhelmed and the body may react to most stimuli as noxious. This is called upregulation. Because the brain has been so inundated for so many years with the painful stimuli, the brain may still recognize the pain even after the disease has been cut out. This is called central sensitization. Imagine being hit with a nail in your stomach for 8-10 years…as your natural computing system, your brain’s circuits would constantly be getting the message that the abdomen is being slammed with a pointy nail. When the nail finally stops, the brain may need a reset button to stop feeling the pain. That is one of the things Physical Therapy can do for centrally sensitized pain. Your Therapist may work on things like guided imagery, mindfulness meditation, breathing exercises, or use types of massage and myofascial release to help calm the body before even working on or in your pelvis. This is so when the pelvis is worked on directly, you don’t have reactive pain.

You Can Explore Options to Make Therapy more Comfortable
Sometimes – it is true – Physical Therapy may make you sore. You may have a reaction to the treatment and the soreness may be the movement patterns or fascia changing from therapy. Myofascial work can be very specific to adhesions and to the peritoneum as well. Patients are encouraged to drink plenty of water post-PT treatments to provide the cells and tissues with the hydration it needs as it experiences changes.

There are doctors who prescribe vaginal diazepam (Valium®) to help with pelvic floor pain. Vaginal Valium® is a small dose of either 5mg or 10mg that gets inserted into the vagina to relax pelvic floor spasms. It is available by prescription only. Many medical doctors prefer the first few times a patient uses the vaginal Valium® it is prior to Physical Therapy sessions in order to make therapy more comfortable. It is not something that is used instead of Physical Therapy. The intent of most doctors’ prescribing it is to serve as an adjunct to therapy. There is much debate in the pelvic health field about the use of vaginal Valium®. Some Physical Therapists feel it is better to treat the upregulation and centrally sensitized pain patterns than administer a drug. Some also feel that because it is given vaginally, it does not attend to the neuropathways in the brain that may be triggering the spasms. Others feel it is a valuable aide to Physical Therapy. Most patients try to experience Pelvic Physical Therapy and see how they react after a few sessions prior to exploring vaginal Valium® with their doctors.

So – now you are prepared to empower yourself over pelvic pain and embark on the journey of healing Pelvic Physical Therapy brings! Appointments in New York and New Jersey, contact Dr. Sarrel:

Dr Sallie Sarrel PT, ATC, DPT is a leading pelvic health Physical Therapist in New York and New Jersey. She has taken her own arduous battle with endometriosis to inspire women to empower themselves over pelvic pain. She frequently lectures nationally and internationally on the value of pelvic Physical Therapy and endometriosis. She has a fervent belief that you are not your pain, and is unique in her patient-centered approach to Physical Therapy and endometriosis.

Helpful links and resources:

Help Distribute Some Dignity

Image capture (c) Distributing Dignity, Inc.

Recently, we were chatting with one of our patients about ‘what to do’ with her inventory of unopened pads and tampons she’d be ‘stuck with’ following definitive treatment for Adenomyosis. It was really important to her that the products went to an underserved population that could benefit the most…and the answer came just days later, quite unexpectedly, via an article in the Huffington Post, which outlined the plight of homeless women who revealed one of the most difficult challenges you might not have considered: getting their period.

Distributing Dignity is helping to change that. A foundation whose enduring mission is to enhance the ‘Dignity of Women in Need,‘ the organization is working hard to provide critical assistance for a need many would otherwise never even realize existed. Often overlooked and under-donated, feminine hygiene products and bras are quite difficult to come by in the most vulnerable of populations: women in and aging out of foster care, those seeking refuge from domestic violence and abuse, our homeless population which includes our Veterans, teens and others, those struggling with life-altering illness, women displaced by disaster, and so many others. What began as homeless outreach in 2009 has become a widespread mission of charitable generosity committed to lifting up women in need.

We can’t think of a better place to donate your post-hysterectomy feminine product inventory and support a most deserving population of fellow women and girls at the same time. Donations are of course also accepted anytime from anyone who wishes to support this incredibly worthy cause.

Please consider joining Distributing Dignity’s efforts by visiting to learn more.

Congratulations to Dr Sinervo!


The CEC team could not be more proud to announce that Medical Director, Ken Sinervo, MD has been honored with the “2014 Vitals Patient’s Choice” Award. What a wonderful way to end the year!

The Patient’s Choice honor is given only to top-performing physicians based on verified feedback from those who matter the most: patients. This recognition reflects the positive differences a particular physician has made in the lives of his/her patients, and is awarded only to those who have received near-perfect scores as voted by the patients. Only 5% of the nation’s doctors were accorded this honor in 2014.

Moreover, Dr. Sinervo has received this award for *five years in a row* – an incredibly rare accomplishment only 1% of all doctors in the entire United States have achieved!

He has also received the “Most Compassionate Doctor” Award, granted to humble, dedicated physicians who value and treat their patients with utmost kindness and consideration, the “On-Time + Promptness” Award, and the “Top 10 Doctors” Award – all chosen by the millions of patients who visit Vitals each year to find a physician and share their experiences via reviews and rankings.

Please join our team in congratulating Dr Sinervo, who truly leads by example and inspires us to continue giving our patients the very best care every day. We are humbled and grateful to have our Medical Director honored for his accomplishments!

“Managing Expectations” by Susan Pierce-Richards, MSN, ARNP, ANP-BC, FNP-BC

TulipsLet’s talk about “Managing Expectations”
Susan Pierce-Richards, MSN, ARNP, ANP-BC, FNP-BC, November 2014

The average time from symptom onset to diagnosis is 7-12 years. You cannot un-do this in a few hours of surgery. [Readers may also be interested in this article] This does not mean women with endometriosis and pelvic pain cannot get well! – they absolutely can…but it is not like appendicitis where you have acute pain, surgery, surgical recovery and back to normal in a few weeks.

I hear from many women who become frustrated when 3, 6, 12 weeks or a few months post expert excision they are not completely symptom free…

Excision surgery is a crucial step – and the value of this step cannot be overstated. But it is the beginning. Remember… even perfectly prepared ground with perfectly healthy bulbs don’t yield all of its blooms the first year…

Timeframe: Symptom onset to Pre-Op for Expert Excision

Women with endometriosis most often have pain for many years prior to undergoing expert excision.

  • When we perceive pain we often involuntarily contract muscles – with endometriosis it is often pelvic muscles.
  • Over time these pelvic muscles stay tense and/or spasm, become weak and imbalanced and can irritate nearby nerves.
  • Women can develop pain from this muscle tension; can develop bladder pain syndromes, hip/back/leg musculoskeletal pain.
  • You can have changes in how your nervous system processes pain. Think 1+1+1 does not equal 3… it equals 10. This is particularly true when the symptoms interrupt sleep and other activities that would be restorative. Most women with endometriosis and pelvic pain have more than 1 source of peripheral and/or visceral nociceptive (generally interpreted as painful or unpleasant) signals.

Many women have anatomic distortion by the time they have excision surgery.

  • Adhesions from endometriosis, adhesions from prior surgeries, endometriomas, deep fibrotic endometriosis, prior organ removal.

Many women have a reduced quality of life due to years of invalidation, poor sleep quality, infertility, relationship difficulties, and social isolation from the pain and bowel/bladder/GI symptoms.

  • Can result in depression and/or anxiety symptoms
  • Maladaptive habits
  • Hopelessness
  • Relationships change – when we cannot contribute as much physically or emotionally in our chosen families, dynamics change in the relationships
My pre-op story:  

  • I was symptomatic from tweens. My periods were always horrible. I had pain with bowel movements and in high school I would take Kaopectate so I would not move my bowels during my period.   First sex was painful and was painful until I was 45 years old post excision.
  • By 20’s I had pain throughout the month, pain with bowel movements regardless of time of month, pain with passing gas. I had a “small bladder” and urinated a lot, and frequent night awakenings.
  • I had several years of infertility, was diagnosed with PCOS but the symptoms of endometriosis were never elicited and signs of endometriosis (complex cysts, cul-de-sac nodularity) were not explored by my providers. I did get pregnant and have a 10yo biological daughter. I also have an 8yo adopted son. I would honestly live through ever excruciating moment of my life to have these 2 children in my life.
  • I eventually sought care for persistent vaginal bleeding because I stopped reporting pain in my 20’s. I was just ignored anyway.
  • At 44 I underwent a hysterectomy for bleeding daily x 3 years (slowed down my Mirena IUD). Again, I did not report pain because providers never addressed it.
  • At diagnosis during the hysterectomy, I had a fixed pelvis, extensive dense adhesions, obliterated cul-de-sac, bilateral very large endometriomas, bowel endometriosis, widespread peritoneal disease.   The surgeon was unable to remove the endometriosis but did biopsy.
  • I then did a 6 month course of Lupron so that I could buy some time. I did very poorly on Lupron. I ultimately had upper GI bleeding which expedited my need for a higher level of care.
  • Throughout this time I worked like a dog – and exercised. Though this sounds counter intuitive, it was my drug. I could not tolerate narcotics and a few years before surgeries I could not tolerate NSAIDs either so distraction was my only tool. I withdrew from friends, family, husband.   We did not have sex for 3 years before my excision surgery 16 months later. I never missed work and have a successful career. I always managed a smile in public. But I was a shell…

Timeframe: Getting ready for Expert Excision

Nervousness, hopefulness, and excitement. There is a lot of pressure placed on both the surgical team and ourselves – this is the golden ticket right? The magic bullet…. or is it just preparing the garden properly to plant the bulbs….

My story:   I was weirdly giddy. I dared to hope. I had given up any chance for any kind of normalcy. Hope scared me, excited me. I was also in total denial about how big of a procedure I was having.   I was fortunate – I had a fantastic surgeons and nurses who prepared me for what was going to happen, what I might expect post op and what the next steps were….

 Timeframe: Post-op

This is not the end…. This is the beginning!

  • Post op healing takes time
  • Menses (if you still have a uterus) and ovulation can be more painful the first few cycles
  • The pelvic muscles can worsen initially during the healing phase
  • Pre-op pain may have been masking or mixed with bladder, pelvic floor, uterine, nerve pain

Undoing the years of damage

This will NOT happen overnight for most women and may take months to years of gradual improvement. Be grateful for the incremental improvements in quality of life. Each gain in quality of life is a huge victory. And understand you may have set backs and get your healthcare team to help you through it.

  • Surgical recovery: The body needs to heal from surgery. Surgical recover is your job. You need to breathe, move, eat, sleep and rebuild strength. Take the time to do this. Accept help. Let dust accumulate.
  • Pelvic Floor: The pelvic floor needs rehab – pelvic floor physical therapy. Pelvic muscle imbalance and tension can cause pain, bowel and bladder frequency, constipation, a sense of incomplete emptying, can worsen IC symptoms
  • IC/Painful Bladder Syndrome: Bladder symptoms can be masked or blamed on endometriosis. Persistent bladder symptoms can be Interstitial Cystitis/Painful Bladder Syndrome. Guidelines for diagnosis and treatment changed significantly in 2011 and not all providers are up to speed on them. It is very manageable. Diet is critical as is management of pelvic floor muscle spasm and tension (see above). Women can be taught to self-catheterize and instill medications into their bladder providing tools for self-management.
  • Adenomyosis: This is a tough one. Some surgeons will perform a presacral neurectomy. This can reduce the uterine pain for many women (not all). Some women do go on hormonal suppression (such as continuous birth control pills) until they are ready to have children.
  • Diet: You cannot expect to put garbage in and feel great. Many women with endometriosis, even after excision, have food sensitivities that make them feel unwell. Choosing whole organic (when possible) foods that are free from additives, and avoiding gluten, added sugars, inflammatory fats are good starting places.
  • Exercise: It is important to set goals to restore physical strength, flexibility, endurance. This can start early post operatively with slow gentle walking which is critical to prevention of post-operative complications. Work with your providers and physical therapists to help set realistic goals.
  • Relationships and mental wellness: This can take time as well. Consider counseling, yoga, and other restorative work.
  • Pain that persists with no obvious reason: Some people can have pain signals continue to fire despite having the source of tissue trauma, inflammation, or injury removed and healed. For some, their pain processing can take time to settle down. Pain management with medications that address pain processing can help for some patients with ongoing pain. I heard one surgeon talk about using medications to quiet the pain processing pre-op and saw better outcomes post op. Some pain processing problems can be reversed so it is important that all of the peripheral pain sources are addressed. Some patients are sent exclusively for pain management for pain processing treatment and management of the peripheral pain sources are abandoned. This is not very effective.

Remember the 1+1+1 equals 10? Reversing it sometimes requires additional work on the peripheral and central processing using physical therapy, medications, yoga and other modalities.

My story:   I had extensive excision with 2 surgeons. Endometriosis was extensive – nearly my entire pelvic peritoneum, endometriomas on my remaining ovary which were removed, fallopian tubes which were removed, appendix which was removed and was stuck down on my psoas muscle, bowel was adhered to the pelvic wall, freed and I underwent a low anterior bowel resection (about ½ my rectum and some sigmoid colon), fibrotic endometriosis on my ureters, some blood vessels and other pelvic structures. My first words waking up were “I’m not nauseous” as I had profound and relentless 24/7 nausea for the 16 months prior to this surgery – from the moment I woke up from my hysterectomy. It was very painful early in my recovery but I am pretty tough – a marathon runner. I was really surprised at just how painful that first week was.It was clear at about the 2 week mark that the endometriosis pain was gone. Wow.   Amazing. But it was also clear I was peeing over 30 times per day and 8 times at night and maybe I did have this IC thing (which was more devastating for me than endometriosis because despite having symptoms for over 30 years, I never considered myself with any “chronic” health conditions). At my follow up, I had a bladder instillation.   I cried – not because it hurt but for 2 hours I had no pain at all. I had not experienced a moment with zero pain in my memory. I had real hope for the very first time.So I sailed off into my perfect life…. Not so fast. My life gets better every day but it has taken commitment on my part, and my provider team’s part to make this happen. It has been 4 years since my excision.What has my recovery process looked like after I healed from surgery:

Get the IC under control:   I was very symptomatic with IC and Pelvic Floor Dysfunction. To get control:

  • I did meticulous food journaling for 9 months after making sweeping changes in order to identify triggers.
  • I catheterized myself daily and instilled meds for the first month. The next few months every other day, then twice per week… then weekly for a couple of years. Now I do them monthly.

The pelvic floor – my nemesis: My pelvic floor has been very stubborn and over time we have learned it was triggered by multiple issues.

  • Pelvic botox x 2 – I did this a year apart and also had pelvic floor PT.
  • Pelvic surgeon identified a left labrum tear. This improved over time, with PT as well.
  • Pelvic surgeon (again) and pelvic PT suspected spinal nerve root irritation. Long story but PCP, ortho x 2 missed the diagnosis. Physiatrist noted unilateral weakness in foot/great toe and confirmed nerve root compression at L5. I underwent lumbar microdiscectomy to relieve the pressure. A bonus effect has been a noticeable reduction in bowel and bladder frequency!

Low anterior resection syndrome: I had the expected bowel frequency post op, but mine has persisted for the past 4 years.

  • Diet has been very important as has pelvic floor rehab
  • Recent improvement after L5 microdiscectomy.

Restoring relationships and balance

  • For years I ran to control the pain, in spite of the pain, TO spite the pain. Now I run for the joy and camaraderie.
  • For years I avoided social situations. Now I enjoy spending time with friends, going to concerts, having dinner parties.
  • For years I avoided sex, it has to be well timed and isn’t as frequent as we would like (see pelvic floor – it’s a tricky balance) but it is so nice to have that part of my relationship back.  
  • For years I kept insanely busy to avoid any quiet time – running from the pain. Now I enjoy yoga, both its power and its stillness.

My story is not intended to frighten or overwhelm anyone – rather to provide hope and encouragement:

  1. With commitment and dedication – healing, improved quality of life is ongoing. I am 4 years out and continue to improve! And I celebrate each and every gain.
  2. All pelvic pain is not endometriosis
  3. Pelvic floor muscles are a highly underappreciated and common source of pain, bladder and bowel dysfunction. These neuromuscular behaviors can be rehabilitated but it takes time.
  4. IC/PBS is very common. It is very manageable but requires an investment of time and energy to identify triggers and commitment to your management plan.
  5. Pelvic floor physical therapy – a critical partner in your rehabilitation. Physical therapy plays a role in managing endometriosis, pelvic floor dysfunction, interstitial cystitis, pudendal neuralgia, adhesions, hip and back issues and more.
  6. Sometimes you have to address a new or stubborn issue. Advocate for the “next steps” in your care.

(c) Copyright Susan Pierce-Richards, MSN, ARNP, ANP-BC, FNP-BC, November 2014. Used with permission.

Canadian Advocate Raises Awareness, Helps Others with Endometriosis

logo_HuntLaura says she is “optimistic for the first time” after surgery to finally treat her endometriosis correctly. Find out what she’s doing now to help others here. Also follow her efforts at bringing endometriosis to the front of the Canadian health legislature here and here. If you are seeking help in Canada, be sure to also connect with the Endometriosis Network of Toronto and Alberta advocate, Brandi.

Just How Terrible IS Endometriosis?

Copyright RedOrbit Media

Researcher Kate Young and her team at Monash University have identified significant gaps in the care and treatment of women with endometriosis, across many aspects of affected shareholder’s lives.

RedOrbit Science News provides a summary and link to this important study here, with commentary by the CEC:



Thoracic Endometriosis

By Dr Nicholas Kongoasa

The term thoracic endometriosis has been used to describe the varying clinical and radiological manifestations associated with the growth of endometrial-like glands and stroma in the lungs or pleural surface. Catamenial pneumothorax (CP) is defined as pneumothorax (medical term for collapsed lung) happening around the menstrual period and is the most common manifestation of thoracic endometriosis, accounting for about 80% of cases. Rarely, thoracic endometriosis may present with catamenial hemoptysis (CH), which is expectoration of blood or blood-tinged sputum in association with menses.

In almost all cases, thoracic endometriosis is unilateral and right sided, although there are rare cases of left sided disease. Bilateral disease is rare. The presentation of CP includes cough, chest pain and shortness of breath. The chest pain may be similar to patients with spontaneous pneumothorax or present as shoulder, scapular or neck pain. Some management strategies for thoracic endometriosis follow:

For any individual with a spontaneous recurring pneumothorax, a gynecologic history and evaluation of her menstrual cycle should be done. When thoracic endometriosis is suspected, Video-Assisted Thoracoscopic Surgery (VATS; a minimally invasive thoracic surgery that does not use a formal thoracotomy incision) is the preferred approach whenever possible. The diaphragm needs to be explored thoroughly, including the visceral and parietal pleura, and if necessary, a port should be inserted at the subcostal margin to assess the posterior diaphragm. All accessible lesions and fenestrations should then be resected. Fulguration or ablation of lesions should not be used, as it is inadequate for treatment of endometriosis and will result in higher recurrence rates.

Following resection, plication (a procedure which allows the diaphragm to move and expand better, thereby improving ventilation) is recommended to seal and strengthen the diaphragm. Simple suturing of the fenestrations does not provide tissue diagnosis and is usually followed by recurrence. Lesions close to the phrenic nerve or its main divisions are best treated by limited resection (if possible) and repair. A mechanical pleurodesis is also further recommended after all accessible lesions have been excised.

Medical treatment has long been considered the first choice by some for their patients with thoracic endometriosis. The literature contains a variety of reports on the use of oral contraceptives, progestational drugs, danazol and gonadotropin-releasing hormone (GnRH) agonists. Experience in the last three decades has been greatest with danazol and GnRH agonists. However, the results of medical treatment for CP have been disappointing, as with all manifestations of endometriosis. At 6 and 12 months, surgical treatment of CP resulted in far lower recurrence rate than did hormonal therapy (5% and 25% compared with 50% and 60%). Therefore, before initiating pharmacologic disruption of ovarian steroid genesis in a young woman, all surgical treatment options should have been exhausted.

In our Center, we propose joint surgery by our thoracic surgeon colleague and one of our gynecologic surgeons specialized in endometriosis. The CEC will always collaborate when thoracic endometriosis is suspected. Not only will this allow for an assessment of the diaphragm from both the pleural and peritoneal side concurrently, this will also allow more thorough identification of endometriosis lesions and fenestrations by both specialists in one operative event. Additionally, there is a significant association between the presence of pelvic endometriosis and thoracic endometriosis, and a joint surgery will further allow the treatment of any pelvic endometriosis at the same time. The thoracic surgeon may want to do some imaging studies first prior to the surgery to see which side of the chest the disease is located.  Depending on the extent of the surgery, individuals may need to stay in the hospital between 1 and 5 days.

Further reading:

Glynis D. Wallace, DMD has written a book on her experiences with lung and colon endometriosis. Visit her site here.

Thoracic Endometriosis by Philippa Bridge-Cook, PhD

Thoracic Endometriosis Case Report

Thoracic Endometriosis

Catamenial Pneumothorax: Literature Review

Refractory Thoracic Endometriosis Syndrome

Thoracic Endometriosis: Association with Pelvic Endometriosis & Fertility Status

Material(s) presented herein are for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No portion of this correspondence should be considered as party to any CEC doctor/patient relationship. All contents herein are © copyright by the Center for Endometriosis Care except where otherwise explicitly noted. All rights reserved.


Interstitial Cystitis: Guest Feature by Dr. Martha B. Boone


Interstitial Cystitis
By Dr. Martha Boone

Interstitial Cystitis is a chronic inflammatory condition of the bladder. Its cause is unknown. The most common type of cystitis in women is caused by a bacterial infection and can usually be treated with antibiotics.

Interstitial Cystitis is NOT caused by bacteria and does not respond to conventional antibiotics therapy, in most cases. Interstitial Cystitis can present with a variety of complaints.

Interstitial Cystitis is also known as the painful bladder syndrome. It can be a chronic condition in which bladder pressure, bladder pain, pelvic pain, frequency, and urgency can appear in any combination of symptoms. The most common symptom seen in clinical practice is discomfort when the bladder is full and a feeling of relief when the bladder is empty.

Interstitial Cystitis (IC) is different from urinary tract infection. A urinary tract infection is actually caused by a bacteria that is found in a urine culture. Interstitial Cystitis (IC), to the best of our current knowledge, is not an infectious disease. IC is felt to be most likely an inflammatory disease of the bladder. The cause of IC remains unknown despite many years of research.

Signs and symptoms of IC:

Pain in your pelvis between the vagina and anus. For men, pain in the scrotum and anal area, and pain above the pubic bone.

Chronic pelvic pain.

Urgent need to urinate.

Frequent urination of small amounts throughout the day and night.

Pain or discomfort when the bladder fills and relief after urinating.

Painful intercourse.

Even though the cause of IC is not known, there are several theories. Some believe that the bladder’s protective lining has been damaged in some manner. Others believe that IC may be a type of autoimmune reaction. Some researchers have felt that heredity plays a part. Prior bacterial infections can predispose a person to IC and some researchers believe that it may be at least partially an allergic reaction.

IC may improve on its own or the patient may have cyclical episodes of IC “flares”. Risk factors include being female:

Women have a 90% greater incidence of IC than men.
Most people with IC are diagnosed during their 30’s or older. There are however, cases of younger people with IC.
Any chronic pain disorder.
People who have irritable bowel syndrome, fibromyalgia, migraine headaches, and any other chronic pain disorder, appear to be more prone to IC.

IC can result in a number of complications:

Reduced bladder capacity: IC can lead to the deposition of collagen in the bladder wall which can make the bladder wall stiff. This can lead to a reduced bladder capacity which means your bladder holds less urine.

Decreased quality of life: Frequent urination and pain can interfere with activities, work, and daily enjoyment of life.

Sexual problems: Frequent urination and pain with intercourse can strain personal relationships and make intimacy difficult.

Emotional problems: Chronic pain and interrupted sleep association with IC can lead to emotional stress and the lack of sleep can actually lead to depression.


Medical History and Bladder Diary. Your doctor will ask you to describe your symptoms so we request that you keep a bladder diary to include the volume of fluid that you drink and the volume of urine that you make.

Pelvic Examination. During a thorough pelvic examination, your doctor will check for any gynecological causes of your pelvic pain.

A urine test. Your doctor will perform a urinalysis and urine culture to be certain you are not suffering from a bacterial infection.

Many Facilities perform a Potassium sensitivity test. It is my feeling that this test is not necessary and can lead to an inordinate amount of pain, urgency and discomfort that is not necessary to make the diagnosis.

Cystoscopy. With Cystoscopy your doctor will insert a small scope with a tiny camera into your urethra to evaluation the lining of your bladder. This can be performed in the operating room along with distention of your bladder and possible irrigation of your bladder with anti-inflammatory drugs. Cystoscopy is performed mostly to rule out bladder cancer.

Bladder Biopsy. Bladder biopsy is not absolutely necessary to the diagnosis to IC. Biopsy is done to determine the degree of inflammation and to rule out bladder cancer.

To have the diagnosis of IC, all that is necessary is for you to have symptoms of a urinary tract infection (frequency or urgency or burning with urination or pelvic pain, or a feeling of discomfort with bladder filling) and to have had 3 negative urine cultures.


There are many treatments for IC and each of them has approximately a 75% success rate:

Physical therapy: Decreasing the muscle tenderness and restrictive connective tissue can greatly aid in decreasing symptoms of IC.

Oral medications: Advil, Motrin, Naproxen, and Tramadol.

Amitriptyline is world-wide the most prescribed drug for IC and felt by many to be the most effective.

Antihistamines (Claritin, Atarax)

Pentosan (Elmiron) is the only FDA approved drug for IC. It is believed to have anti-inflammatory effects and to restore the innersurface of the bladder lining.

Other techniques include:

Transcutaneous Electrical Nerve Stimulation Unit. This mild electrical pulse can relieve the pelvic pain and in some cases, reduces the urinary frequency. (TENS)

Sacral Nerve Stimulation. Your sacral nerves are your primary link between the spinal cord and the nerves in your bladder. Stimulating these nerves may reduce urinary urgency association with IC. With sacral nerve stimulation, a thin wire is place at the sacral nerve and it delivers light electrical impulses to your bladder. The advantage to this therapy, is that it can be tested prior to permanent implantation. This is one of Dr. Boone’s favorite treatments for the urgency and frequency of IC. When the number of trips to the bathroom are decreased, particularly at night, the patient can frequently manage the pain syndrome more effectively.

Bladder Hydrodistention. Dr. Boone is one of the most experienced doctors in Georgia, with this technique. Many patients will notice an improvement in symptoms after undergoing Cystoscopy with Hydrodistention in the operating room. This procedure may be repeated. It is usually combined with bladder irrigation of anti- inflammatory agents. Dr. Boone uses the “Rescue Bladder Cocktail”.

Medications can be instilled into the bladder in the office. Dr. Boone uses the “Rescue Cocktail” and has patients come once a week for 6-12 weeks for the bladder installation.

Surgery. Most practitioners caring for IC patients use surgery infrequently. There are lesions in the bladders of some IC patients called Hunner’s ulcers. If these are resected, patients can see great improvement. These lesions are however, somewhat rare. In the past, surgeons have removed the bladder, augmented the bladder with other organs such as bowel and cauterized the lining of the bladder. None of these surgeries are recommended, except as a very last resort, as the success rates are extremely low.

Fortunately IC, responds well to lifestyle and home remedies. Dietary changes may decrease bladder irritants. Common irritants are carbonated beverages, caffeine, chocolate, citrus products, Vitamin C, tomatoes, pickled foods, alcohol, spices, and artificial sweeteners.

The Interstitial Cystitis Association can provide a full list of the foods. Dr. Boone does not recommend that you take all of these items out of your diet at once. It is best to do an elimination diet whereby, you take them out one at a time. For example: if you think that tomatoes are irritating your bladder, have no tomatoes for an entire week. Then, re-introduce them in “a big way” by eating an entire tomato or drinking an entire glass of tomato juice. Within 2-4 hours of ingesting the irritant, your bladder should experience symptoms. Over the course of several months, the patient can determine which foods are problematic. Interestingly enough, about 50% of IC patients will have no sensitivity to food.

Some doctors are enamored with Bladder Training and Bladder Drills. This is simply trying to wait before you go to urinate. By gradually waiting longer between bathroom visits, it is believe that some patients can increase their functional bladder capacity. Dr. Boone has had minimal success with Bladder Training and Bladder Drills. But, with patients with minor symptoms, it certainly would be worth trying.

Other self care practices include wearing loose clothing to avoid any pressure on your abdomen or perineum. Reducing stress by using visualization, biofeedback, meditation, mild yoga, and mindfulness can be very effective. Do not smoke as smoking can worsen the painful condition and contributes greatly to the development of bladder cancer. Mild exercise, and mild stretching exercises can reduce IC symptoms. Heavy exercise may actually worsen the symptom by worsening pelvic spasms.

Many patients have received improvement in pain management by using acupuncture techniques. Dr. Boone uses Metro Acupuncture in Atlanta, GA. Make certain that your acupuncturist is familiar with treating pelvic pain.

Since IC is a chronic disease that occurs in young people, support is often necessary. If you find yourself with depression or anxiety related to your IC, please seek psychiatric assistance early for stress management.

A great resource for all patients with IC is the Interstitial Cystitis Association. They can be found on the internet and offer many forms of assistance.

(c) Martha B. Boone MD LLC. All rights reserved. Reposted with permission.

BlogTalkRadio Presents: Dr. Ken Sinervo on Endometriosis

blogtalkImage © 2014

According to WERF, almost 176 million individuals suffer from endometriosis across the globe. Many struggle with symptoms, on average, for more than a decade before they are taken seriously and given a proper diagnosis. On this week’s episode of TopDocs on BlogTalk Radio, CEC Medical Director and endometriosis expert Dr. Ken Sinervo talks about endometriosis warning signs, gold standard treatment, why the disease isn’t treated properly by more doctors, how to find resources for support and so much more. Take a listen!

Presacral Neurectomy

SinervoMDPresacral Neurectomy
“I still have pain and cramping after excision of endometriosis – what else can be done?”Dr. Ken Sinervo, Medical Director

While the majority of patients with pelvic pain do improve following treatment of their endometriosis with excision (approximately 85%), a small portion may continue to have pain from their uterus when having periods or from uterine irritability due to other conditions; most commonly, Adenomyosis.  The next most common condition is primary dysmenorrhea: painful cramping of the uterus without any obvious cause.

Adenomyosis is a condition in which the glands that make up the lining of the uterus (the endometrial glands) begin to grow within the wall of the uterus or within the myometrium (the middle, muscular layer of the womb).  Adenomyosis can cause heavy, crampy periods, backache, painful intercourse and/or continuous pain throughout the month. The pain is usually midline, but may rarely radiate to one or both sides.  Treatment for Adenomyosis includes birth control, Mirena® (a progesterone-coated IUD), hysterectomy in women who have completed childbearing, or Presacral Neurectomy (PSN).

A Presacral Neurectomy is a procedure that can be performed through a larger incision in the abdomen (laparotomy), or preferably, through laparoscopic approach.  At the CEC, we perform all our PSNs by laparoscopy.  During laparoscopy, a small incision is made below the belly button and typically, two smaller incisions are made at the bikini line. Any other pathology is addressed and then the Presacral Neurectomy can be performed.

The nerves coming from the uterus, which conduct pain signals, are interrupted or cut to prevent those signals from reaching the brain.  Most studies suggest that PSN helps approximately 75% of the patients who have it performed.  Most commonly, the results are immediate and last for many years.  There have been some studies that suggest the nerves can grow back, but this cobweb-like group of nerves does not usually have a sheath along which they could grow back.

The removal of the nerves is performed in the area near the sacral promontory between the major blood vessels. This surgery must be performed carefully and meticulously in order to avoid injury to these vessels and the right ureter, which delineates the lateral border of the dissection for the PSN.  We have performed hundreds of these procedures and have not had any injuries to the vessels where the presacral nerves or hypogastric plexus lies.  Few gynecologists have training in PSN, however, and subsequently, most do not perform the procedure.

As with all surgery, there are some potential side effects that could occur, but these are uncommon, occurring in less than 5-10% of patients.  They include constipation, which is usually mild and often improves over time or with dietary modification, and urinary complaints, that include urgency, which can usually be managed with timed voiding. Often, bladder urgency is improved, while about 5% may note a worsening of urgency, which can often be managed with timed voiding.

There is another procedure called the Laparoscopic Uterosacral Nerve Ablation, or LUNA, which has also been studied.  This procedure involves cutting those nerves that run in the uterosacral nerve region, which lead to the superior hypogastric plexus that is removed during a PSN.  Uterosacral ligaments that lie behind the uterus carry these nerves.  However, the majority of the nerves actually lie adjacent to the ligaments and when a LUNA is performed, the nerves may not be completely transected. Most studies do not find as good, long-term relief following LUNA, and few find any significant relief beyond 6 months.  Because of little long-term benefit, most endometriosis specialists or pelvic pain specialists do not perform LUNA any more.

Presacral Neurectomy has no impact on fertility or pregnancy and it does not affect the activity of the uterus during labor. There has been some suggestion that PSN may result in painless labor, and we usually recommend that patients mention to their obstetricians that they have had a PSN so that their cervical length can be followed to make sure they are not having premature labor they cannot feel.  The likelihood of this occurring is said to be minimal.

For questions and concerns about PSN or other procedures to treat endometriosis and its associated symptoms, please contact us. You may also be interested in these articles:

Was my Surgery a Failure?

Pain After Excision: What does it Mean?

Illuminating the Complexities Of Endometriosis

(c) Center for Gynepathology Research


Famed scientist, Professor Linda Griffith, and her MIT team have been researching endometriosis for years.  Their progress may one day lead to unlocking the mysteries of this disease. See updates on their latest developments here via Red Orbit, the leading media destination for timely space, science, health and technology news.

“Solved: 20 Years of Mysterious Pain” [Ladies’ Home Journal Feature]

© Copyright 2014 Ladies' Home Journal | Meredith Corporation.

© Copyright 2014 Ladies’ Home Journal | Meredith Corporation.

After 20 years of incapacitating pain, Adina finally got the answers – and help – she needed.  Grab your copy of the February 2014 issue of Ladies’ Home Journal magazine to read this multi-page endometriosis feature.  Thanks to Adina and LHJ for raising awareness on this disease – and for bravely sharing her story!

Update: a cached version of this article can be found online.