What is endometriosis?
According to an annual report from Google, that was the third most searched health question of 2018, currently returning over 31 million results. "What is the keto diet?" and "What is ALS disease?" took first and second place, respectively, on Google's list.
Endometriosis occurs when tissue similar that of the endometrium, or lining of the uterus, grows outside of the uterus, causing inflammation and pain as it responds to monthly hormonal fluctuations during a woman's menstrual cycle. It affects an estimated one in ten women, or 200 million women worldwide, and is the leading cause of infertility and hysterectomy.
It was certainly a banner year of endometriosis awareness. In February, actress Lena Dunham penned an emotional essay in Vogue revealing her tough decision to undergo a total hysterectomy at 31 after enduring a long and relentless battle with the disease.
"I feel like anything that is caught in the shadows like endometriosis, that leaves women feeling lonely, that leaves women feeling less than, that is what I want to devote myself to. That's what I've tried to do with my work and in my life, and that's what I feel my job is," she told CNN.
Singer Halsey, and actresses Sarah Hyland and Julianne Hough have also publicly detailed their longtime battles with the disease.
Then came March, which is globally recognized as Endometriosis Awareness Month, as countless women took to social media to proclaim that they, too, were #1in10. The Endometriosis Foundation of America, founded by Dr. Tamer Seckin, also threw its annual Blossom Ball gala to fundraise to increase awareness, disease recognition, research.
The awareness train continued full steam ahead beyond March as the foundation, which has given more than $750,000 in grants to endometriosis research, launched its #LetsTalkPeriod campaign, which rallied public support behind a bill that, if signed into law, could help bring endometriosis education to millions of New York state pupils. The bill passed unanimously in the Senate, and the foundation plans to push for its passage in the Assembly in 2019.
Still, despite increased disease awareness, obstacles remain for women with endometriosis to receive proper care.
It can take, on average, ten years for an affected individual to receive an accurate diagnosis of endometriosis. This, in part, is due to physicians not being trained and armed with the right questions and protocols for discovering why a woman may be experiencing debilitating menstrual pain.
Often, however, even when a woman is referred to an endometriosis specialist, new hurdles exist. For one, there are very few physicians who specialize in endometriosis. It is estimated that only 100 specialty endometriosis surgeons, like Dr. Seckin and the Seckin Endometriosis Center team, are in practice in the U.S.
"These gynecologists are generalists, not trained to recognize early endometriosis, which is one of the root causes for why most women are not diagnosed until much later in their lives when the endometriosis has spread considerably," Dr. Seckin has said.
"Patients are basically given pain medicine and birth-control pills and sometimes antidepressants. Drug therapies and pain medication are over-practiced. Birth-control pills are good to diminish the flow so the period doesn't reflux as much, but it's important to have the right ones and the right timing. I want the lesions excised, so I treat this disease microsurgically and remove the inflamed tissue."
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