endometriosis: a challenging disease

Since ancient society, gender bias and inequity have long undermined women’s healthcare. Historically, the female reproductive tract has been framed as a source of physiological and psychological disorders in women; this is perhaps best underscored by the very origin of the word hysteria. Rooted in Greek “hystera” (uterus), the womb became identified very early on as the cause of a number of illnesses specifically affecting women. Absurdly, it was believed – and propagated across the centuries – that the womb “wandered” about the body; a concept which later came to be termed hysteria. Galen later wrote hysteria was caused by “sexual deprivation” and thus it was quite often diagnosed in such “repressed” women as virgins, nuns and widows. The medieval treatment was – predictably – sexual in nature (intercourse / vaginal massage)^1,2.  Subsequently, negative connotations between physical and psychological symptoms arose, many of which still persist in not altogether vague forms today.  Imagine, then, the difficulties of enlightening society about a disease which not only involves the uterus, but is intricately characterised by underpinnings of menstrual, abdominopelvic and sexual pain: endometriosis.

It is important to understand that minor cramping during menses is NORMAL, particularly in younger women. Inflammatory hormones are linked to menstrual discomfort in many women and girls. Such discomfort is not typically cause for alarm and is often easily remedied through a variety of measures. Dysmenorrhea, as it is known, is NOT the same as endometriosis. The intractable pain of endometriosis that interrupts your life is not normal – though societal bias continues to tell us that such pain is “part of having periods” and is our “lot in life” because we are female.

A growing societal crisis carrying a fiscal tag of nearly $100 billion annually in associated global costs, approximately 176 million women and girls worldwide between the ages of 15-49 are affected by the disease, during what should be the most promising, productive years of their lives³. Endometriosis also accounts for a significant loss of productivity – 11 hours per woman per week; 38% more than for women with similar symptoms without endometriosis⁴. More than simply ‘killer cramps’, it is related to a number of hereditary, environmental, epigenetic and menstrual characteristics – many sharing certain common processes with cancer⁵. Corresponding with a variety of comorbid conditions, ranging from autoimmune disease to food and environmental allergies and intolerances, endometriosis also remains a leading cause of gynecologic hospitalisation and hysterectomy, as well as a primary cause of infertility. Clearly, this is far more than merely a disease of a few women and adolescents.  It affects our employers, families, colleagues, teachers, peers and loved ones at considerable financial and intangible loss.

During a normal period, the body naturally sheds the endometrium (clinical term for lining of the uterus). In women and girls with endometriosis, however, some of this tissue is retained and implants in other internal areas.  Unlike normal endometrium, these implants have no way of exiting the body.  The aberrant process gives rise to endometriosis, resulting in internal bleeding, development of large, debris-filled cysts known as endometriomas or “chocolate cysts”, bleeding, painful inflammation, fibrotic scarring, and formation of adhesions (fibrous bands of dense tissue).  The disease typically develops on the pelvic structures including bladder, bowels, intestines, ovaries and fallopian tubes, but is also diagnosed in areas such as the diaphragm, lungs (where it induces a dangerous condition called Catamenial Pneumothorax) and less commonly, areas even farther outside the abdominopelvic region including the brain. Symptoms often start early in life, but are ignored by caregivers, healthcare consumers and practitioners alike. Indeed, 70% of teens with pelvic pain go on to be later diagnosed with endometriosis⁶.

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 menstrual characteristics exist.  Current research indicates that immune dysfunction and exposure to environmental toxicants may also be contributing factors.  Landmark studies supported by the Endometriosis Foundation of America have specifically implicated mesenchymal stem cells in disease pathogenesis.

Nonetheless, no single theory explains development of endometriosis in all women; more likely, a composite of several mechanisms is involved, including:
–       Retrograde menstruation – abnormal backflow, which almost all women experience, yet only some will develop the disease
–       Immunologic dysfunction – “broken” immune system allows for inappropriate implantation of retrograde debris
–       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 – tenfold risk in women and girls whose mother or relative has disease
–       Environmental Toxicants – pollutants cause cell changes, which allow for implantation and errant immune response

Likely, we are born with a combined number of pathological factors which subsequently trigger the disease. Generally, no particular demographic, personality trait or ethnic predilection exist⁷, and there is no preventive measure.  Widespread lack of awareness on the part of society contribute in part to the average diagnostic delay of nearly a decade (6.7 years)⁸ across multiple physician consults.

Common 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.

Unfortunately, many women and girls are often misdiagnosed or directed to “manage” the pain for years through repeat, superficial surgeries in which all disease is not removed i.e. vaporisation and use of painkillers and/or medical therapies like oral contraceptives and hormonal injections, but these only mask symptoms and do not treat disease. 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, 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.  Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue.  If one grasps the basic understanding of the lifelong challenges this illness presents, the collective would agree that in fact, many patients will need complex, multidisciplinary surgery combined with adaptation of such lifestyle changes.

Awareness is on the rise, though we still have far to go.  Through the years, several notable women have been associated with endometriosis, which has helped bring about greater awareness.  Jayne Kennedy Overton was one such early activist; among the first women to infiltrate the male world of sports announcers on the CBS NFL Today show, Kennedy-Overton helped bring the disease to light in a very public way at a time when endometriosis received little to no media coverage. Others, from the inimitable bombshell Marilyn Monroe (posthumously) to fitness guru Jillian Michaels to famed actress Susan Sarandon to The Honorable Hillary Rodham Clinton, have facilitated the rise of the disease to many of today’s headlines. Perhaps none, however, have done more to bring about dedicated awareness than the Emmy-nominated host of Bravo’s Top Chef, Padma Lakshmi. Co-Founder of the Endometriosis Foundation of America, Lakshmi continues to keep endometriosis in the spotlight by revealing her private struggles in a very public, candid way.  In 2011 alone, Lakshmi and her EFA Co-Founder, endometriosis specialist surgeon Tamer Seckin, MD, generated over 320 million media impressions about endometriosis – the most coverage in history by any single source.

Only through early intervention can we reduce the associated morbidity, infertility and progressive symptoms.  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.  No one knows their body better than the woman or girl with endometriosis – to them, I say this: trust your inner Cassandra*; you know when something is wrong.  If your doctor or those around you won’t believe your pain and symptoms or tell you it “can’t be endometriosis” because you’re “too young/too old/don’t fit the so-called profile” – keep searching until you find someone who does.  And above all else, remember you’re never alone.

*Greek mythology; “Cassandra” is a metaphorical reference to individuals who experience physical or emotional suffering, yet are disbelieved when they attempt to explain the cause of their suffering to others.

Get Help & Information:

• Endometriosis Care Centre of Australia
• Eve Health
  
• Endometriosis Research Center
  
• Endometriosis.org
• Endometriosis Foundation of America

The author is herself a stage 4 endometriosis, infertility, leiomyoma and adenomyosis survivor who has been engaged in the clinical study of the disease for nearly 25 years.

References:
1  King, Helen (1993). “Once upon a text: Hysteria from Hippocrates”. In Gilman, Sander; King; Porter, Helen et al. Hysteria beyond Freud. University of California Press. pp. 3–90. ISBN 0520080645

2  Maines, Rachel P. (1998). The Technology of Orgasm: “Hysteria”, the Vibrator, and Women’s Sexual Satisfaction. Baltimore: The Johns Hopkins University Press. ISBN 0-8018-6646-4

3  Adamson GD, et al. Creating solutions in endometriosis: global collaboration through the World Endometriosis Research Foundation. J of Endometriosis 2010;2(1):3-6

4,8  Nnoaham KE, Hummelshoj L et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011 Aug;96(2):366-373.e8

5  Kokcu, A. Gynecologic Oncology: Relationship between endometriosis and cancer from current perspective. Archives of Gynecology & Obstetrics Volume 284, Number 6, 1473-1479, DOI:10.1007/s00404-011-2047-y

6  Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Fertil Steril. 2011 May;95(6):1909-12, 1912.e1.  Epub 2011 Mar 21

7  Naseer-ud-Din; Ataullah Khan; Nudrat Illahi. Prevalence & Presentation of Endometriosis in Patients Admitted in Nishtar Hospital, Multan. Jamc Vol. 12 No. 3, 2000

By Heather Guidone

(Image credit: 1.)