I had no Idea the Pain Is not Normal

The first step in diagnosing endometriosis is often getting the patient to recognize that her pain is not normal.

For many women with endometriosis, 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 Dr. Tamer Seckin, a laparoendoscopic surgeon in New York who specializes in the removal of endometriosis.

Perspectives on endometriosis management

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

The diagnosis

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

The learning curve

None of the women even considered endometriosis until it was suggested to them as a possible diagnosis. And even after diagnosis, it was an uphill battle to learn about their condition.

The surgical experience

Almost immediately after seeing Dr. Seckin, Ms. Motola was scheduled for laparoscopic deep excision surgery. The procedure took about five hours and she was in the hospital for three 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. But many of her gastrointestinal symptoms have returned.

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

Patient patterns

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

Raising awareness

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 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 co-founded 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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