Endometriosis: What you need to know

Several times a week, I meet women and adolescent girls with clear signs of a disease that can seriously affect their health who don’t even realize it. Or, I’ll meet individuals who have struggled for years to get a diagnosis for symptoms related to pelvic pain or infertility. Most have seen several doctors and yet have never even heard the word “endometriosis.”

Endometriosis is an inflammatory disease that affects nearly 200 million women worldwide. It is caused when menstrual blood gets into the abdomen through the fallopian tubes, usually during menses, and develops into chronic and debilitating monthly episodes of pain, including bladder or gastrointestinal (GI) symptoms. Because it is so misunderstood, endometriosis often goes unrecognized. The average time to diagnosis is an astonishingly long 11 years!

Endometriosis is a leading cause of painful periods and infertility, but recent studies from our center suggest that irritable bowel syndrome (IBS) also is frequently associated with this disease. Other ailments affecting women, including interstitial cystits (IC), painful intercourse, and even chronic fatigue syndrome may be symptoms of endometriosis.

It appears that endometriosis is present in 80% of couples with unexplained infertility and is a common finding in women with unexplained recurrent pregnancy loss. The mechanisms accounting for these problems appear to be through inflammation that leads to disturbances in the actions of two female hormones, estrogen and progesterone. Progesterone is essential for pregnancy. Without adequate progesterone, estrogen action becomes dominant and can make endometriosis grow out of control.

The delay in diagnosis for endometriosis leads to years of suffering and often ineffective treatments. Non-surgical testing for endometriosis has been developed here at Prisma Health and is currently available under the tradename ReceptivaDx. This type of testing is especially helpful for women with unexplained infertility or in vitro fertilization (IVF) failure.

Treatment of endometriosis is highly effective and includes both surgical and medical therapies. Teenagers with periods that are severe enough to prevent them from going to school likely already have the disease, and these girls should be treated with oral contraceptive pills early on.

For women with a diagnosis of endometriosis who still suffer pain or infertility, new medications including Elagolix, an orally active non-protein pill, will be available sometime in 2018. The Levonorgestrel-containing IUD also has been shown to be highly effective in stopping menstrual-related pain.

If you or someone you know has unexplained pain, unexplained infertility or irritable bowel syndrome that gets worse with menses, endometriosis is the most likely cause. The best advice is to see someone who understands the disease and who knows how to treat it and prevent recurrence. Endometriosis need not ruin the lives of women anymore, but knowing its signs and symptoms is the important first step in finding a solution.

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