Endometriosis: a Challenging Conundrum

To begin, it is important to understand that minor cramping during menstruation is NORMAL, particularly in younger women.  Inflammatory hormones like those called “prostaglandins” along with others are often linked to menstrual discomfort; mild pain with periods is not typically cause for alarm and may be remedied through a variety of measures.  Typically, the pain is temporary and subsides after menses.  This pain is called “dysmenorrhea”.  Dysmenorrhea is NOT the same as endometriosis.

The normal endometrium is the lining of the uterus, which breaks down and is shed during menstruation.  It is profoundly different from endometriosis, which is the presence of tissue somewhat resembling – but not the same as – endometrium, found elsewhere in the body, where it doesn’t  belong.  With endometriosis, this aberrant tissue gives rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis and formation of adhesions (fibrous bands of dense tissue).  The significant pain often associated with endometriosis may become chronic over time, as the lesions become more fibrotic.  Infertility, bladder and bowel dysfunction, painful sex and much more can result.

A growing public health and societal crisis carrying a fiscal tag of nearly $119 billion annually (D’Hooghe, Dirksen, Dunselman, de Graaff, WERF EndoCost Consortium, Simoens), approximately 176 million women and girls worldwide between the ages of 15-49 are affected by the disease during what should be, according to Endometriosis.org’s Lone Hummelshoj, the “most promising, productive years of their lives.”  Endometriosis also accounts for a significant loss of productivity – nearly 11 hours per woman per week; 38% more than for women with similar symptoms without endometriosis.  The disease is more than just so-called “killer cramps“, with symptoms occurring outside menses. Recently, even slight concerns regarding small but potential cancer risk has emerged, but it is important to understand that the disease is not cancer.  Endometriosis also remains a leading cause of gynecologic hospitalization and hysterectomy (many performed needlessly).

The disease typically develops on the pelvic structures including the rectovaginal cul de sac, bladder, bowels, intestines, ovaries and fallopian tubes, but is also increasingly being diagnosed in areas outside the reproductive organs like the diaphragm and lungs (where it induces a dangerous condition called Catamenial Pneumothorax); rarely, even in areas as far removed from the abdominopelvic region as the brain).  Symptoms often start early in life, but may be ignored by caregivers, healthcare consumers and practitioners alike. Indeed, 70% of teens with pelvic pain go on to be later diagnosed with endometriosis.

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 women; more likely, a composite of several mechanisms is involved.

Theories of origin in general which have emerged over time include:

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 tissue and endometrium are NOT the same, and retrograde menstruation is a very common phenomenon among most women.  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. Without question, there are various other factors that contribute to disease pathophysiology and pathogenesis.

Immunologic dysfunction – “broken” immune system allows for inappropriate implantation of retrograde debris. This may play a small role in lesion development but does not sufficiently explain the disease process to begin with.

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 endometriosis.

Stem Cells – have been demonstrated to populate endometriotic implants even in absence of menstruation; this would also account for the rare cases of documented male endometriosis.

Genetics – as much as a seven-fold risk may exist in women and girls whose mother or relative has disease.

Environmental Toxicants – pollutants may be linked to cell changes, which facilitate abnormal implantation and errant immune response.

Yet, despite the myriad of theories, no single assumption accounts for all cases in all women.  It may be more likely women and girls are born with endometriosis and a combined number of pathological factors subsequently trigger the disease.

Generally, no particular demographic, personality trait or ethnic predilection exist, and there is no preventive measure.  Widespread lack of awareness on the part of society contributes in part to the average diagnostic delay of nearly a decade (6.7 years) across multiple physician consults—even today.

Common, oft-debilitating symptoms include:

* Crippling menstrual pain

* Pelvic pain at any time in the cycle

* Bowel or urinary disorders/pain

* Painful intercourse / pain with sexual activity

* Infertility / pregnancy loss

* Immune-related disorders

* Allergies, migraines or fatigue that tends to worsen around menses

The only way to obtain a definitive diagnosis of endometriosis is through surgery called Laparoscopy. Though symptoms and/or diagnostic testing may give rise to “informed suspicion”, only surgery permits the requisite visual and more importantly, histological, diagnosis.  Laparoscopy also facilitates treatment of the disease.  Alternative therapies, such as diet and nutrition, acupuncture, physical therapy, and other complementary treatments can be very helpful at effectively managing symptoms on a non-invasive basis.  The CEC believes quality excisional surgery is the cornerstone of any effective management plan.

Unfortunately, many women and girls are often misdiagnosed and/or directed to “manage” the pain for years through repeat, superficial surgeries in which all disease is not removed or use of painkillers and/or medical therapies like oral contraceptives and hormonal injections, but these only mask symptoms and do not treat disease 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, 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.

The Center for Endometriosis Care (CEC) is a COEMIG-designated Center of Excellence which was formed over two decades ago by Robert B. Albee, Jr., MD.  Patients come to us from around the world.  Our world-class team is led by Dr. Albee and CEC’s Medical Director, Ken R. Sinervo, MD – global pioneers in the precision care and treatment of the disease.  Often misdiagnosed and ineffectively treated, the symptoms of disease often chronically persist because it is rarely treated through the advanced, meticulous Laparoscopic Excision (LAPEX) procedure we have been performing here for decades, across thousands and thousands of patients. Such incomplete treatment results from even well-meaning physicians who do not recognize the disease or remove it in its entirety, leaving deep disease – and painful symptoms and pathology – behind. Suppressive medications and hysterectomy are recommended as next-step ‘cures’ – which of course they are not. We believe the key to success is removing disease, not organs.  True disease recurrence is actually quite low if all endometriosis is thoroughly excised from all locations – including the bowel, bladder and beyond.

Only through early intervention can we reduce the associated morbidity, infertility and progressive symptoms of endometriosis.  We must “alleviate our culture of menstrual misinformation” for our daughters 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. Please let us know how we can help you.