I had no idea it wasn’t normal

I had no idea it wasn’t normal

The first step in diagnosing endometriosis is often getting the patient to recognize that her symptoms aren’t a normal part of menstruation.

BY MARY ELLEN SCHNEIDER from endometriosisjourney.com

For many women with endometriosis, the diagnosis is delayed – in part – because they don’t realize their pain is abnormal. That was the case for Amanda Motola, Danika Underhill, and Madison Warren, three patients of Tamer Seckin, MD, a laparoendoscopic surgeon in New York who specializes in the removal of endometriosis.

Perspectives on Endometriosis Management

While their journeys are different, each experienced moments when she was not believed or when her pain was minimized by a physician, a family member, or a coach. After treating hundreds of women with endometriosis, Dr. Seckin said this is a common theme.

 

The diagnosis

Ms. Motola, age 24, was diagnosed at 21. Ms. Warren, age 25, also had a relatively short time to diagnosis, though she was prescribed oral contraceptives at age 14 and sought care from two gastroenterologists before her diagnosis. For Ms. Underhill, age 39, she wasn’t diagnosed until her early 30s, when she had trouble conceiving. Her undiagnosed endometriosis pain had been controlled for years through oral contraceptives and careful adherence to a diet and exercise regimen. The decision to have Dr. Seckin perform laparoscopic deep excision had more to do with her goal of getting pregnant than her desire to be free from pain, she said.

The learning curve

For each woman, endometriosis was not even considered until it was suggested as a diagnosis. And even after diagnosis, it was an uphill battle to learn about her condition.

 

 

The surgical experience

Almost immediately after seeing Dr. Seckin, Ms. Motola was scheduled for laparoscopic deep excision. The procedure took about 5 hours and she was in the hospital for 3 nights. Ten months after the surgery, ultrasounds showed no evidence of recurrence.

Ms. Warren had some surprises during her surgery, including losing her appendix. The procedure successfully treated her pain; however many of her gastrointestinal symptoms have returned.

For Ms. Underhill, the surgical recovery was harder and more intense than she expected. She became pregnant within 2 months.

Patient patterns

While there isn’t a “typical” patient journey in endometriosis, there are often patterns. Patients often require multiple surgeries. Dr. Seckin often sees patients whose symptoms have not resolved despite surgery and medication; some have become opioid dependent.

Awareness is critical

How does the medical community begin to raise awareness of this diagnosis? Ms. Underhill said it starts by giving mothers more information so they can recognize the symptoms in their young daughters and by making it a part of the health curriculum in schools, just like sex education. The answer is multifactorial, according to Dr. Seckin. There’s a need to empower women with knowledge and awareness, but there’s also work to do for physicians and those designing medical school and residency curricula. Dr. Seckin cofounded the Endometriosis Foundation of America to help raise awareness and provide research funding for the condition.

Mary Ellen Schneider is the editor of Ob.Gyn. News.
Whitney McKnight is a multimedia reporter for Ob.Gyn. News.

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