Why Endometriosis Hurts Everyone

Endometriosis hurts. There’s no question about it. Millions of women suffer in the U.S., and around the world.

The clinical terms that doctors use to define the pain and suffering are well-known to many women, particularly as they try to seek some answers.  These pain words all start with “dys”: painful menstruation (dysmenorrhea); painful intercourse (dyspareunia); painful bowel movements (dyschezia); and painful urination (dysuria).  And all of these “dys” problems are strongly associated with chronic and unpredictable bouts of pelvic pain, spastic bladder, irritable bowel, abnormal bleeding, back pain, and infertility.

Endometriosis hurts because there is so much ignorance, particularly amongst physicians and other health providers.  When women with endometriosis are told ignorant things or have ignorant treatments that quickly leads to depression, questioning of self-worth, relationship breakups, loss of productivity, and feelings of isolation.  And ignorant treatments can lead to actual physical harm (“iatrogenic” is the term).  Luckily, this ignorance can readily be overcome when women with classic endometriosis symptoms turn to the Internet and social media, where it is easy to find that they are not alone.  And through that information often comes empowerment and a plan of action.

Endometriosis hurts when women have trouble conceiving.  In our experience, over 95% of women labeled with “unexplained infertility” actually have endometriosis.  If I blogged everyday about every patient in our practice who has unexplored infertility causes, i.e. endometriosis, I’d be blogging for many years.  In reality, endometriosis is by far the #1 diagnosis identified and treated in our subspecialty practice.  My colleagues in reproductive endocrinology and infertility do their patients a huge disservice when they label 20-30% of their patients with the non-diagnosis of “unexplained infertility”.

Endometriosis hurts even when it doesn’t cause pain.  Millions of women with endometriosis have no symptoms, or have mild cramps.  This is so-called “silent endometriosis”.  About one third of our patients have this, because they come to see us to determine why they are having trouble conceiving.  Many “unexplained infertility” women fall into the “silent endometriosis” non-diagnosis.  That’s because it is hard to diagnose endometriosis in the absence of symptoms. Women with “silent endometriosis” and “unexplained infertility” deserve a thorough laparoscopic evaluation, though this has become controversial amongst infertility specialists.  Better to jump to expensive treatments without diagnosing and treating endometriosis?  Better for whom?

Endometriosis hurts when fertility treatments fail, including IVF.  While powerful and expensive treatments like IVF often can overcome infertility caused by endometriosis, it is very clear in the biomedical literature that endometriosis interferes with ovarian response, egg and embryo quality, and embryo implantation.  How or why all of this happens is vigorously discussed amongst academic-minded physicians and basic scientists.  We don’t have all the answers but many of my colleagues are ignoring the science that already exists.  I could also be blogging for many years about each patient seeking second or third opinions, especially for failed IVF cycles.

Endometriosis hurts when families can’t grow because of infertility.  Endometriosis hurts those who like or love a woman with endometriosis because they don’t know how to help. Endometriosis hurts future parents, grandparents, aunts and uncles, cousins, and Godparents.

Endometriosis hurts everyone.