- Endometriosis afflicts an estimated one in 10 women and adolescents, 176 million women and girls globally, 8.5 million in North America alone. So, why does the public know so little about this devastating disease? Why the seeming lack of interest?
Endometriosis, in its most severe form, has been known for centuries. So, why has it taken modern medicine such significant time to develop dialogue about this condition? Perhaps it is because endometriosis is not fatal; or that young girls are taught to 'live with' the pain associated with menstruation (i.e., cramps), growing up with a fear of appearing 'weak' for complaining; or simply, in the still male-dominated field of medical research, there exists a lack of empathy and the condition has just not been a focus. No matter the reasons, the devastating effects of this disease remain.
10 Years Wasted
For many women suffering with endometriosis, the severe painful periods, intense cramping, chronic pelvic pain, urinary frequency or urgency, irregular and/or painful bowel movements and pain associated with sex is a debilitating and disheartening experience. Several women find themselves bedridden for a number of days each month. Most women with endometriosis suffer symptoms up to a full decade prior to diagnosis; the average age of diagnosis is 27. In an effort to deal with the painful symptoms, medical professionals have frequently prescribed often addictive painkillers, which create a dependency within patients, while failing to correctly resolve the origins
of the condition.
Infertility Connection And Hysterectomies
Endometriosis is one of the top three causes of female infertility; while it is one of the most treatable, it remains the least treated. The relationship between endometriosis and infertility is due to several different factors; these include distortion of anatomy, hormonal fluctuations, peritoneal effects and the effects on the immune system. Due, in part, to a lack of focus within the medical community, several women's health practitioners are ill-equipped with the knowledge to properly diagnose and adequately treat endometriosis. One such often inadequate treatment is a hysterectomy. Based on the misconception that a total hysterectomy may provide relief from symptoms, evidence to the contrary demonstrates that disease left behind in the body at the time of hysterectomy may continue to cause symptoms. Rather than resolving the issue, the woman is left to deal with the physical, emotional and psychological repercussions of this intense procedure.
Healthcare Practices Vs. Treatment
A popular form of endometriosis surgery is laser vaporization; the procedure time of which is often less than meticulous excisional surgery. Medical facilities may often grant preference to such shorter procedures that seemingly accomplish the same result - yet the problem lies in the fact that laser vaporization is superficial and does not treat deep disease; it may even complicate symptoms by leaving fibrotic tissue and carbon deposits behind. Moreover, such surgeries only destroy tissue; without samples of the disease itself, there is very little opportunity for pathological work to be done, thus further delaying the research and development of preventive measures.
In an effort to resolve such, EFA has launched the creation of a tissue procurement facility to be further expanded over the next two years at the Lenox Hill Hospital Department of Pathology, in coordination with the Feinstein Institute of Medical Research in the North Shore/LIJ Health System. This effort - the world's first Biorepository Research Core for endometriosis - will serve as the genesis for groundbreaking translational research on this enigmatic disease.