“What is endometriosis?”
According to an annual report from Google, “What is endometriosis” was the third most searched health question of 2018. Currently, it returns 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 to the endometrium, or lining of the uterus, grows outside of the uterus, causing inflammation and pain as it responds to monthly hormonal fluctuations. It affects an estimated one in 10 women of reproductive age. An estimated 200 million women worldwide live with the disease. It is the leading cause of infertility and hysterectomy.
Year of endometriosis awareness
It was certainly a banner year of endometriosis awareness. In February, actress Lena Dunham penned an emotional essay in Vogue. She talked about 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 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.
March: endometriosis awareness month
Then came March, which is the global Endometriosis Awareness Month. 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 for increasing awareness, disease recognition, and research.
Other efforts to raise awareness
The awareness train continued full steam ahead beyond March. 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. The foundation now 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.
Obstacles to receiving proper care
It can take, on average, ten years for an affected woman 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 await. 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. This is one of the root causes of why most women do not receive a diagnosis until much later in their lives when the endometriosis has spread considerably,” Dr. Seckin has said.
“Doctors often prescribe these women pain medicine and birth-control pills and sometimes antidepressants. Drug therapies and pain medication are over-used. 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.”