Endometriosis: Understanding a Complex Disease

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By The Center for Endometriosis Care

Abdominal or pelvic pain? Infertility? Painful sex? Bowel-related symptoms? Bladder pain? Lower back or leg pain? Bloating? Crippling fatigue? Debilitating periods? Endometriosis could be at the root of these symptoms–and many others. Despite being among the most common of diseases, persistent myths, misinformation and deficient health literacy about the disease continue to enshroud endometriosis–even by the most well-intentioned sources–often resulting in poor information systems and continued lack of effective care.

To begin, 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 NORMAL, particularly in 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.

Moreover, endometriosis is NOT just ‘painful periods’–nor is it simply ‘bits of rogue endometrium implanted as a result of backflow menstruation’  as many articles and organizations incorrectly describe. Normal 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, 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.

Endometriosis is not merely 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lining implants itself waywardly throughout the body like daises in a field with each period–yet unfortunately, this outdated, widely-touted notion continues to keep endometriosis mired needlessly in delayed diagnoses, hysterectomy, poor surgical treatment, ineffective medical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.

Endometriosis affects approximately 176 million individuals worldwide, including 7.5 million in the U.S. and 775,000 in Canada alone–yes, even the rare male. The illness accounts for a significant loss of productivity–nearly 11 hours per woman per week – which is 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 its 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.

Currently, the only way to obtain a definitive diagnosis of endometriosis is still through surgery; typically laparoscopy. Though symptoms and/or diagnostic testing (CT scans, MRIs, etc.) may give rise to “informed suspicion,” only surgery permits the requisite visual and more importantly, histological, diagnosis.  Laparoscopy also facilitates treatment of the disease.

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, the disease is not “cured” by removal of the uterus, ovaries and/or tubes and cervix.

Still–despite the stark outlook on the disease, there is help and hope! Surgery (in the proper hands), alternative therapies, diet and nutrition, acupuncture, physical therapy,  and other complementary treatments can all be helpful at effectively managing symptoms. At the CEC, we believe high-quality, minimally invasive excisional surgery is the cornerstone of any effective management plan.

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 of endometriosis.

This post has been adapted from a comprehensive article posted by The Center for Endometriosis Care (CEC). March is Endometriosis Awareness Month. The CEC, which is designated a Center of Excellence in Minimally Invasive Gynecology, approaches endometriosis treatment unflinchingly through a multidisciplinary, integrated, patient-centered approach. The CEC motto is “We believe there is help–and hope.” 

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