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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Patient Reviews

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  • Winnie Chan

    I’ve seen many obgyns over the years explaining my monthly symptoms during my period...but eventually it became a daily struggle with these pain. It feels like a poke here and there near my right pelvic region. I was given birth control pills for the past ten years but honestly, it didn’t help at all. I was in bed whenever I…

  • Rachel Grobman

    Dr.Seckin is so much more than a surgeon. His passion for helping endometriosis sufferers and determination to improve the quality of life in all of his patients is undeniable. I remember when my gynecologist first told me I needed a laparoscopy. Her exact words were "I can do the surgery, but if you were MY daughter- I'd send you to…

  • Esin Kocabiyik

    I was there for hysterectomy but then I found out that I also had endometriosis.My both surgeries went excellent and I feel great!.I am so thankful to Dr.Seckin and all his team for making my journey smooth!

  • Samuel Taveras

  • Rena Ebrahim

  • nikoletta pados

    I am a physician who suffered from deep infiltrative endometriosis. I needed laparoscopic surgery, so I went to see my former gynaecologist and he performed the procedure (a surgery which he supposedly does hundreds of times a year) last November. I had severe pain again when I had my period in January and was advised to go on taking a…

  • Grace Larsen

    After years of excessively painful periods, a serious loss of quality of life, and a series of uninformed and uninterested doctors, Dr. Seckin and Dr. Goldstein turned my life around. I was told I woke up from my surgery almost a year ago with a smile on my face, and I haven't stopped since. Before I heard of Dr. Seckin,…

  • Nicole Novakowski

  • Jacqueline Galindo

    Dr Seckin and his team gave me back my life! Tomorrow will be 1 month since my surgery and I feel great. Dr. Seckin, Dr Liu, and Dr Goldstein are not only beyond words talented and amazing Doctors, but they are also genuinely wonderful and caring people. I cannot say enough great things about Holly, Asiye and Kim as well.…

  • Anna Lu

    Dr. Seckin and his staff spared me from years and years of heavy periods and unbearable endometriosis pain. After having surgery with him (my first) I can now function like a regular human. No more eating NSAIDs like candy and calling out sick from work. Thank you, Dr. Seckin!