Endometriosis Awareness: Why Our Community’s Voice Matters

Uterus PainMany thanks to Nancy Petersen, RN for her invaluable contributions to this article. Visit Nancy’s Nook for Endometriosis Education & Support to connect with others who understand in a supportive, private setting.

No robust effort to champion public health can be complete without addressing the scourge that is endometriosis: an enigmatic disease taking immeasurable toll on every aspect of the health and well-being of approximately 176 million women and girls – and yes, even some men – from every corner of the globe (WERF). One of the most critical challenges facing the endometriosis community is a lack of factual awareness; a challenge which keeps us largely mired in myths, misinformation, lengthy delays in diagnosis, poor treatments and an incredible lack of support. The legacy of misinformation enshrouding this illness is shared in perpetuity – from even well-meaning, well-respected providers to patients, from medical educators to next-generation healthcare professionals, from health publishers to the media, from organizations to ‘celebrity spokespersons‘, from mothers to daughters, from generation to generation. Unrelenting societal and cultural bias surrounding menstruation and pelvic pain also keeps the disease belittled, invalidated, ignored and diminished. If you are not already angry about the state of affairs in endometriosis, you should be.
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Though receiving little mention in historical medical compendiums, it is without question endometriosis has, for centuries, negatively impacted the social, physical, emotional and sexual quality of life of those living with the disease. The profound economic consequences and significantly impaired quality of life greatly contribute to the urgent need for continued research and improvement in diagnostic and treatment modalities – yet endometriosis remains largely ignored throughout society; dismissed at the public and provider levels alike. Focus on better clarifying pathogenesis, pain mechanisms and potential links to certain morbidities/malignancies remains critically necessary. Prevention continues to be elusive, and many sufferers find themselves isolated and frustrated by the widespread lack of understanding and barriers to quality care they face every day.

Insidious enough on its own, endometriosis, not surprisingly, is also linked to several comorbidities including (but not limited to) certain cancers and autoimmune disorders, migraines, Graves Disease, Systemic Lupus Erythematosus & Rheumatoid Arthritis, and coronary heart disease. Moreover, a shocking 72% of those living with endometriosis have reported significant disease-related affects which interfered with their daily lives (Fourquet et. al. 2010).  This disease is so much  more than ‘killer cramps’ or simple ‘painful periods.’ Truly, endometriosis is a key public health initiative needing further promotion, understanding, research, empathy – and our voices.iStock_000011748410Small

Early intervention and increased, accurate awareness is requisite to reduce morbidity, infertility and progressive symptomatology in patients of all ages, yet in order for those affected to make educated choices about their health pathways, we must provide them with the correct information upon which to base their healthcare decisions and confer the most timely, efficacious interventions – including referrals to tertiary treatment centers as appropriate. Failure to diagnose and treat endometriosis through a judicious, well-timed approach may have multiple tangible and intangible consequences, as pioneering excision surgeon and Founder of the Center for Endometriosis Care, Robert B. Albee, Jr. MD, addresses in his acclaimed editorial, “Is Endometriosis all in Your Head?” Nevertheless, one need only turn to the most recent article on endometriosis to see it referred to merely as ‘killer cramps’ or ‘painful periods,’ routinely treated by one-size-fits-all approaches. Those with endometriosis are not broken people who are at fault – this is a systemically broken system which has failed them, time and again. Endometriosis is a social justice, medical, financial – and yes, human rights issue.

(c) Ladies Home Journal Magazine.

(c) Ladies Home Journal Magazine.

Though many research investigations are being conducted on varied aspects of the disease, much of it is incredibly redundant in nature and sorely lacking in any translational benefit, in the sense that it will not prove helpful to patients in the ‘here and now.’ Moreover, much of the research is being directed solely towards pharmaceutical diagnosis and management, which do not provide long-term solutions; still others fail to examine the far-reaching impact of the disease in any meaningful way. “Blame the patient” is still prevalent, and individuals are still too often told the pain is in their head or even normal; others espouse ancient, mythical notions of retrograde menstruation as cause and hysterectomy, drug therapy, incomplete surgery or pregnancy as cures. Such sentiments are a monumental disservice to those suffering. Some influential organizations and practitioners continue to spread outdated information, further stemming progress. The enduring lack of awareness overall at every level of society contributes greatly to the average diagnostic delay of more than a decade across multiple consults, and despite its status as a true community health crisis, misinformation remains ubiquitous, continuing to pervade the media, healthcare setting and general public – resulting in continued long delays to effective diagnosis and treatment.

The disease remains a top cause of chronic pelvic pain, and yet diagnostic delay across all care settings has not improved. Indeed, data reflect that many practitioners’ knowledge is sorely limited, with direct consequences: in one investigation, 63% of GPs indicated they felt “ill at ease” in the diagnosis and follow-up of patients with endometriosis. One-half could not cite three main symptoms of the disease out of dysmenorrhea, dyspareunia, chronic pelvic pain and infertility. Only 38% indicated that they perform a clinical gynecologic examination for suspected endometriosis, and 28% recommended MRI to confirm the diagnosis (Quibel et. al. 2013).  In another example, nurse graduates in one of our professional education courses were administered a pre-test to determine perceived and actual disease knowledge. 100% failed to correctly identify the correct definition of endometriosis, opting instead for “cysts on the ovaries accompanied by elevated CA-125” and “an infection of the endometrium,” and 60% erroneously indicated that endometriosis only affects older, menstruating women. These brief samples illustrate significant knowledge deficits in the healthcare setting, and further demonstrate the crucial need for improved education with a specific emphasis on disease recognition among all age groups.  It is imperative that providers become not only aware of but also better educated on the clinical characteristics of the disease in order to make accurate diagnoses and facilitate appropriate referrals.

Endometriosis remains steeped in menstrual taboos, secrecy and shame and is epitomized in large part by extremely poor efficacy and safety profiles of commonly proffered therapies.  Prevalence corresponds to – and increases with – awareness and training of the diagnosing surgeon, but it is estimated to affect 8.5 million in North America alone (WERF 2010). The annual estimated cost burden – in just the United States – hovers around a staggering $119 billion (D’Hooghe et. al. 2012). Most of the price tag related to the disease is driven by high hospitalization rates, and those who struggle with endometriosis incur almost 65% higher medical costs (Mirkin et. al. 2007). Nearly a decade ago, it was estimated that total costs of care for women with chronic pelvic pain in general was substantial, with 15% of affected women missing an average of 14.8 hours of work, per month, in the United States alone – accounting for a staggering $14 billion in lost productivity each year. The total costs of potentially unnecessary medical, surgical and psychiatric care or hospitalization were further assessed at $128 million per year (Kuligowska et. al. 2004). A decade later, very little has changed, with endometriosis specifically accounting for a significant loss of productivity of 11 hours per woman per week, resulting in variable yet considerable costs by country (Nnoaham, Hummelshoj, Webster, D’Hooghe, Nardone, Nardone et al. 2011).

By and large, we are still not as a society taught what is ‘normal’ and what may be indicative of a problem; ‘period taboos’ stifle the conversations we need to be having about signs and symptoms of endometriosis that could lead to earlier intervention. We must create a far more participatory dialogue and put an end to the divisiveness and lack of collaboration among all stakeholders – stakeholders who should be working together towards solutions vs against one another; we must continue to lobby policymakers and legislators for robust institutional changes to further benefit those struggling with the illness; we must end the secrecy, isolation and pain of countless sufferers; we must revitalize and create a space for menstrual communication, broaden the gender dialogue, and engage in key conversations. We must allow the endometriosis community’s voice to be heard.  Now is the time.
illustration of Endometriosis in woman

Many clinicians, even well-meaning, remain naïve as to the potentially damaging effects endometriosis can impose on quality of life, sexual function and overall well-being of those suffering. Mistakenly often believed to impact only older individuals, in reality nearly 70% of teens with pelvic pain go on to later be diagnosed with endometriosis (Yeung, Sinervo, Winer, Albee 2011). Yet in Karen Ballard’s landmark paper from 2006, she powerfully described the stigma given to girls with menstrual pain who were mistakenly believed to simply be unable to ‘handle’ their periods. “The harsh reality is that unless they have a parent or a healthcare professional who believes in them and stays on course determined to understand the reason for the pain, young women [with endometriosis] often face dramatic changes in their lives once the symptoms become severe,” states Dr. Albee. “Somewhere along this journey, a careless doctor or healthcare provider will suggest that ‘it is all in her head’. Over time many will begin asking themselves whether or not they are somehow making this up. Sadly, parents do not know what to think and may begin doubting their daughters as well.”  Yet in the largest prospective study of excision in teenagers to date, we demonstrated in contrast that complete excision is an important part of the management plan for pain and even eradicate the disease (Yeung, Sinervo, Winer, Albee 2011).

Early diagnosis is fundamental in all settings to effectively manage the disease, and the Endometriosis Research Center encourages adolescents in particular to know when it’s time to seek help. “Periods – or symptoms at any time during a girl’s cycle – that are so painful they get in the way of school, work, sports, extracurricular or social life are an indication something is wrong. Don’t suffer in silence; talk to your nurses and doctors about getting diagnosed and treated,” the organization highlights in their Girl Talk® materials. Girl Talk®, launched in 2003, was the first program in the country designed to educate students along with school nurses, doctors and adolescent healthcare providers about the disease. Still, signs of endometriosis go frequently overlooked and under-diagnosed, resulting in inappropriate referrals and deficient treatment; lack of awareness and bias may result in delayed, mistaken and dismissive diagnoses i.e. sexually transmitted infection, conversion disorder, etc. menstrual-crampsStill even more isolated are the few men struggling to access endometriosis diagnosis and treatment in a traditionally female-identified space, as well as LGBT patients who face additional, unique considerations in healthcare settings that fail to be inclusive – leading to additional stressors and impaired treatments. There are also cases of male endometriosis in the literature, lending to further confusion about disease origins.

To further confound matters, a number of sources (including very prominent practitioners) continue to assert that endometriosis is a disease caused by ‘negative emotions’ and/or various deep-seated “psychological components” (Griffin 2013, Northrup, et al.). While there are undoubtedly various social, psychological and emotional aspects to any painful, chronic illness such as endometriosis, these are likely consequences of the disease – not the causeEndometriosis has its origins in very real, very complex genetic and molecular underpinnings – not an abstract ‘rejection of one’s uterus’ or inability to ‘get along’ with one’s parents, as some claim.  Contentions that endometriosis is a psychological ailment due to one’s internal failings or otherwise rooted in self-imposed, negative emotions leads only to further delayed diagnosis and ineffective treatment of the disease for countless women and girls.
Beautiful black woman doing different expressions in different sets of clothes
This is not to say that cognitive-behavior-spiritual efforts cannot be helpful to some by perhaps facilitating ways in which they can better temporarily cope with symptoms; indeed, our own patients often feel comforted by a short prayer before they undergo anesthesia and engage in a number of mind-body approaches as part of their self-care.  Renowned Nurse, educator, mentor, advocate, excision pioneer – and endometriosis patient – Nancy Petersen shares her experiences and perspective:

“I became a prolific reader of self-care, alternative care, ways of distracting the mind…all that reading, video watching, tape listening, etc. helped move my brain out of the continuous focus on the pain.  One of the books I read was Psychologist Mihaly Csikszentmihalyi’s Flow: the Psychology of Optimal Experience.  While written in a very scholastic way, I was able to pick out some key ideas, one of which is when you get into something you truly love, your life flows and distractions can be minimized in the moment…I began gardening…I found ways to adapt my life and my garden so I could still do this – without making my life and pain worse. This gave me back some power.  During this time, no one was helping me with my pain…so as my joy at digging my hands into the soil, particularly in an extremely difficult climate, began to emerge, I found that I could forget the pain for minutes, sometimes, even a half hour.  Even today…I can put the pain aside for hours at a time by finding joy. This is NOT to say the pain goes away, but rather, the brain is trained to look elsewhere for periods of time. I do not believe I would have had the strength to persist if my endometriosis had not been resolved through excision…so I am grateful for the success of [the disease] removal.”

Importantly, she maintains: “You cannot just ‘muscle through the pain.’  Sometimes that will make things worse, because you work physically beyond your tolerance, but you can distract the mind from paying attention for periods of time. Is it easy? Not at all!  It is hard work, requiring self-education, focus, practice – and sometimes, you will fail. In some cases, you may always fail! BUT trying to improve your ability to cope with pain until you can find more effective care can be empowering, and give you a sense of purpose.  Please do not interpret this to mean you can do ‘mind over matter’ where your pain is concerned.  Rather, you can build short respites, sometimes even longer. For me, it was at least something I could try. That alone was empowering.”

En précis, a number of various emotional, mental, social, spiritual and behavioral factors can somewhat influence our health, but endometriosis is not caused by “being excessively self-critical” (Northrup 2009), nor by “insecurities, disappointment and frustrations,” or as a result of “disappointments from dad” (Weaver 2013). While various psychoimmune interactions are present in women with endometriosis, including pronounced immunological shifts manifested by imbalanced production of anti-inflammatory cytokines (among other biologic responses), these are part of the network of adaptive reactions associated with and perhaps because of the disease – not the origin of it. In our own clinical setting, we are contacted by more than a thousand patients annually from every corner of the world, many of whom relate to us that their caregivers and loved ones feel they are embellishing their accounts of pain and symptoms – yet most have previously diagnosed endometriosis. “Individuals with endometriosis generally do not make up – or cause – their symptoms of pelvic pain, nor do they exaggerate about the severity of pain experienced,“ says Petersen of her experiences. In fact, she noted, 75% of the women who came to the excision treatment program she founded with Dr. Redwine had been dismissed in the past by their doctors as being neurotic – yet, as in our own patient population, also had biopsy proven disease.

Ken Sinervo, MD MSc FRCSC ACGE, world-renowned excision surgeon and Medical Director of the Center for Endometriosis Care, discusses this failed scenario playing out time and again in healthcare settings across the globe:

“A girl mentions her symptoms year after year and is placed on different birth control after different birth control to “manage” them – yet failure of one type of birth control should indicate that her pain and symptoms are not normal…if there is failure of one birth control and/or NSAID, it should suggest the possibility of endometriosis. But instead, these patients are dismissed, ignored and marginalized. It takes years before they finally get their diagnosis and are pariahs – labeled as having endometriosis – a medical dead end.”

Nonetheless, even upon surgical diagnosis, the person with endometriosis may only be offered ineffective (and potentially harmful) drug therapy that only temporarily quells the symptoms, incomplete surgery which leaves disease behind, or worse still, counseled to undergo unnecessary hysterectomy.  Though hysterectomy has a place in treatment for select cases, endometriosis is not “cured” by the procedure. Yet, nearly half of the 600,000 hysterectomies performed in just the United States alone annually are the result of endometriosis (Centers for Disease Control, Hysterectomy Surveillance data). An ongoing, dangerous myth responsible for many needless hysterectomies, we must put an end to this misguided “treatment.”  Still others are simply told nothing can be done for them, leaving them in utter physical and emotional torment. Tragically – some even lose all hope.

There is a better way.DSC_1702

Most patients will indeed need complex, multidisciplinary surgery combined with adaptation of lifestyle changes – yet few are guided towards excisional surgery by their providers and remain unaware of non-invasive, adjunct options such as physical therapy, nutritional approaches and alternative approaches that may help when combined with quality surgical treatment. Despite the increased challenges presented by meticulous and thorough dissection of disease, complete excision of endometriosis is possible – including vaginal resection – and offers a significant improvement in sexual functioning, quality of life and pain, including in those symptomatic patients with deeply infiltrating nodules in the posterior fornix of the vagina. Laparoscopic Excision restores normal anatomic relationships and can treat pain, infertility or both by sharply dissecting deep fibrotic nodules which may be causing partial or complete cul-de-sac obliteration. The C02 laser can be successfully used as a precise cutting tool to excise to the roots of disease, from all areas including bowel, rectovaginal septum and other complex regions. Conversely, superficially burning the disease with the laser – which is what most commonly occurs in typical ob/gyn surgical settings – destroys tissue, making microscopic evaluation impossible and does not remove all disease (Albee, Sinervo).  Simply “shining a light” (Redwine) at the disease does not eradicate it. It is important to understand the difference between tool and method; for additional reading on this topic please visit this article. For information specific to the robotic/da Vinci® approach to endometriosis, please visit this article by Dr. Albee. Again: in that this kind of surgery requires uncommon surgical skills and anatomical knowledge, it should be performed only in selected reference centers by those focused on treating the disease.

In general, true LAPEX significantly improves general health and psycho-emotional status. Data reflect pain, sexual function, fertility rate and quality of life are improved and associated with low complication and recurrence rates after a CO2 laser laparoscopic radical excision of endometriosis. Complete excision “prevents persistent disease” (Koh 2012); only 7-12% of the time can we document endometriosis after complete excision (Albee, Sinervo 1990-2014 data). Thus, LAPEX remains the most minimally invasive, highly cost-effective option, provided early diagnosis is conferred (Mabrouk et. al. 2011). Left un- or inadequately treated, however, endometriosis can lead to continued pain, infertility or pregnancy loss, dysfunction, in-patient stays and post-operative morbidity, reduced productivity, and ultimately increased costs and poor outcomes. This contributes to highly unnecessary increased financial burdens on patient, hospital provider, practitioner and society alike. Read The Case for Endometriosis Surgery to learn more.

Says Dr. Sinervo: “We have seen patients with more than 20 procedures, who would have had a fighting chance of pain relief had they been offered excision of their endometriosis at an early age. Despite this, our average patient has been on 2-3 medical treatments (birth control, GnRH agonist/antagonist, Depo-provera, Nuvaring, progesterone, esterase inhibitors, etc. etc, etc.) and undergone 2-3 surgeries.” He continues: “Typically, patients are told they have few options: we can try one surgery and if you don’t get relief you are offered GnRH agonists (i.e. Lupron®) or other suppressive medication which has long-term side effects; suck it up and live with pain; get pregnant (who plans on getting pregnant as a teen?? A few, but most are not ready for this!); have an early hysterectomy; or worse, undergo useless surgery after useless surgery treating the disease superficially – which causes more chronic pain and leads to retroperitoneal fibrosis [scarring below the normal pelvic tissues, which may be more damaging than the endometriosis was originally. These patients are damaged much more than their original disease may have harmed them by these ineffectual treatments.” The good news? Following excision in the hands of a skilled endoscopist, says Dr. Sinervo, “between 80-85% will have significant improvement in their pain for years; some do need hysterectomy due to other painful conditions, most likely adenomyosis. BUT, much of this could be avoided by EARLY (within a few years of symptom onset) DIAGNOSIS and EXCISION.”

Still, even those directed towards effective resources for quality treatment may find themselves faced with insurmountable barriers.  Failure to provide patients with timely, cross-border referrals, lack of authoritative disease education and roadblocks to effective intervention remain significant obstacles – often leading to heartbreaking consequences. Ours remains a healthcare system broken from the inside out, with policy advocating for hysterectomy, which may be needless, and expensive, ineffective medical therapy that has never been proven to confer long-term relief – yet in many settings remains first-line approach (even diagnostic) by many insurance carriers and providers alike. There are no incentives to improve quality of – or perform – specialized treatment for endometriosis; complex, complete excision is reimbursed at lower or same rate as simplistic vaporization or not covered at all. Similarly, referrals are routinely, injudiciously withheld from patients. Often, these decisions come from bureaucrats who do not even understand endometriosis, let alone the need for precise treatments.  Our system further encourages superficial surgery by reimbursing and rewarding incomplete operative measures and fails to support proper surgical intervention, leading to untreated disease – which in turn leads to certain failure and need for repeated reoperation, thus incurring additional costs. Moreover, there is no support towards the creation of “disciples” due to lack of incentives, red tape restrictions and medicolegal fears; if this current climate continues, there will be no next generation of endometriosis surgeons to carry out the legacy and teachings of our surgical pioneers.

Says Petersen, “Endometriosis pain is on par with acute appendicitis. Patients develop peritoneal signs and symptoms (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, etc. etc.), something every medical and nursing student has been well educated to look for in patients. But in endometriosis patients, [it is dismissed as] “oh, it’s just her period!” If you think about the degree of pain associated with peritoneal inflammation, the LEAST we can do is be sure that the patient has adequate pain relief until disease can be resolved. What we fail to recognize in untreated endometriosis is that this disease restricts potential, sexuality, childbearing, ability to work in many cases, and generally constricts life…the lane to quality endometriosis care is cobbled with failure.”

Living with endometriosis truly exemplifies and embodies the social implications of negative attitudes towards menstruation and women’s health. This disease is so much more than ‘painful periods.’ It has the propensity to take away so many of an individual’s choices – when and whether to engage in a fruitful, enjoyable sex life with the partner of her choosing, when or if to pursue fertility options, whether or not to undergo invasive procedures, to choose ineffective menstrual suppression and medications which alter her cycle, and more.

“We aren’t encouraged to talk about painful sex, debilitating cramps and bleeding, bowel issues, bladder problems, intractable pelvic pain and the like in ‘polite’ company…in fact, we’re often silenced when attempting to do so,” the CEC’s Surgical Program Director, Heather Guidone, remarked recently. “Not much has changed in the past two decades where the conversations about endometriosis are concerned. So patient frustration, significant diagnostic delays, high treatment failures and extremely deficient health literacy continues to obscure the stark realities of this disease. Likewise, endometriosis is consistently sidetracked by and mired in the fertility aspect – when what we should be focusing on is not a woman’s procreative potential, but the impact which pain has on an individual’s entire life and their resulting ability to make and enjoy their own choices – whether sexual or career or socially oriented,” said Guidone, who suffered for decades from stage 4 disease herself and struggled with countless failed treatments and infertility. There is no shortage of endometriosis stories…but the public, the medical profession, and society at large must start listening. We have to hear the voices if we are ever to improve the state of affairs in this disease.”Growing female symbol like plant with leaves and roots

Dr. Sinervo’s call to arms:

“Do all that you can to help other women and endometriosis sufferers to put pressure on health care providers to realize the horrific impact this disease has on women’s health, professional lives, social interactions and so many other aspects of life; adolescents in particular can be quite literally scarred for years if their disease is not recognized and treated effectively early on. Some spiral down such a negative path that it may not be reparable. I would rather treat all women at an early stage and avoid bowel resections, or bladder resections or hysterectomy – something I really think is attainable. More doctors should not be scared to be brave and take the chance that a young patient may have endometriosis and save them years of suffering.  I pray for early diagnosis and effective treatment for all women struggling with this disease.”

We plead for an urgent shift in priorities if we are to realize improved time to diagnosis and increased access to efficient treatment. Those focused on the disease would agree that treating early and effectively is the cornerstone to living well in the long-term – in spite of endometriosis. The conversation about the physical, conceptual and political facets of our disease is limitless – but making the difference starts with us. In our work, in our conversations, in our presence in society at large. The global endometriosis community deserves nothing less.

Be sure to visit EndoWhat.com, web home of the groundbreaking documentary, now screening internationally.

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Date of publication: Oct 15, 2013. Minor updates: Mar 31, 2016.

 

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