Although it affects an estimated 1 in 10 women, awareness is low for endometriosis, a disease in which tissue that normally grows inside the uterus is found elsewhere in the body. But Tamer Seckin, M.D., the founder and medical director of New York’s Endometriosis Foundation of America, is out to change that.

“The public and the medical community need to know what endometriosis is and how to diagnose and treat it,” Seckin says of the invasive disease. “Once we have awareness, other elements like research funding, wider health care coverage and better training of doctors to recognize and deal with the disease falls into place.”

Warning signs

Symptoms of endometriosis include pelvic pain, heavy periods and painful intercourse. While therapies such as diet, birth control pills and over-the-counter pain medications can manage symptoms, Seckin says the only treatment is laparoscopic excision surgery to remove the disease down to its roots. Women suspecting they have the condition can take the first steps in treating it by being prepared when seeking options. Seckin says the first thing patients must do is disclose all their symptoms.

'“Once we have awareness, other elements like research funding, wider health care coverage and better training of doctors to recognize and deal with the disease falls into place.”'

“She needs to be honest about her pain level and the effect the disease is having on her quality of life,” he says. Patients should also discuss the details of laparoscopic excision surgery, including making sure the surgeon sends post-surgery tissue samples to a pathologist to confirm endometriosis. This way, she understands how the treatment will affect her symptoms and the progression of the disease.

Surgery details

In addition, Seckin says patients should discuss the surgeon’s experience in removing diseased and damaged tissue, reconstructing organs and restoring their functionality. “It’s crucial that patients find the right specialist to receive the best care,” he adds.

Though Seckin laments that the topic is vastly under-discussed — “because it’s still taboo to talk about a woman’s period” — he’s encouraged by the recent willingness of celebrities, including Padma Lakshmi and Lena Dunham, to open up about their struggles with the disease.

“By sharing their personal journeys with ‘endo,’ these women are bringing the disease out of the shadows,” says Seckin. “And that’s a good thing — for both disease awareness and research.”