Endometriosis Awareness is recognized across the world throughout the month of March, with the mission to raise understanding of the so-called “invisible disease” affecting millions of individuals from every corner of the globe. For a list of events, please visit http://endometriosis.org/news/
A devastating illness affecting approximately 176 million women and girls worldwide, endometriosis is clinically defined as the presence of functioning endometrial-like tissue in areas outside the uterus. This aberrant process gives rise to pain, inflammation, development of painful ovarian cysts called endometriomas (“chocolate cysts”), fibrosis and formation of adhesions (fibrous bands of dense tissue). The result is chronic pelvic pain, bladder, bowel or other organ dysfunction, dyspareunia, infertility and many other significant social and psychological impacts. Endometriosis remains a leading cause of infertility, gynecologic hospitalization, pelvic surgery and hysterectomy, yet the disease remains poorly understood, underdiagnosed, undertreated and lacking in awareness.
The disease typically develops on the pelvic structures including the rectovaginal cul de sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes, but as recognition grows, it is also increasingly being diagnosed in areas outside the reproductive organs such as on the diaphragm or lungs, where it can induce a dangerous condition called Catamenial Pneumothorax. Rarely, endometriosis may be diagnosed in areas even as far removed from the abdominopelvic region as the brain. Symptoms routinely start early in life – an estimated 70% of teens with pelvic pain go on to be later diagnosed with endometriosis – but are often ignored by caregivers, healthcare consumers and practitioners alike. There is no prevention for endometriosis and no absolute cure, but there are treatments that can help.
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 and likely, a composite of several mechanisms is involved. In general, no particular demographic, personality trait or ethnic predilections exist in accordance with endometriosis, though family history cannot be undervalued, with studies indicating a near 10-fold increased risk in women with first-degree relatives who have the disease.
Not all those with the disease experience pain, but many will struggle with painful symptoms; some even life-altering. Common signs of endometriosis include (but are not limited to):
- Crippling menstrual pain
- Pelvic pain at any time of the cycle; often intractable
- Bowel or urinary disorders/pain/dysfunction
- Painful intercourse/pain with sexual activity
- Infertility/pregnancy loss
The only way to obtain a definitive diagnosis is 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 by permitting surgical removal of the disease from all involved areas. Alternative therapies, diet and nutrition, acupuncture, physical therapy and other adjunct treatments can also be helpful at effectively managing symptoms on a non-invasive basis, particularly when combined with quality excisional surgery as the cornerstone of any effective management plan. Unfortunately, many who struggle with endometriosis are instead often misdiagnosed and/or directed to “manage” the pain for years through repeated 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. 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 theUnited 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.
Those affected by endometriosis may benefit from a collaborative framework of healthcare providers (“centers of excellence”) who possess specialized training and expertise in management of the disease, as well as from the collective knowledge and experience of peer support groups. To find a center of excellence or endometriosis organization, visit endometriosis.org/support/
Surgical Program Director of the Center for Endometriosis Care
Vice President of the Endometriosis Research Center
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