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.

Our office is located on 872 Fifth Avenue New York, NY 10065.
You may call us at 212-988-1444 or have your case reviewed by clicking here.

<< Previous Article
7 Endometriosis Symptoms You Should Never Ignore
7 Endometriosis Symptoms You Should Never Ignore

Doctors often brush off endometriosis symptoms as something less severe, but the condition affects up to 10% of women of…

Read more >

Next Article >>
A Cross-Country Endometriosis Story: <br />Alyssa’s Journey to A New Quality of Life
A Cross-Country Endometriosis Story:
Alyssa’s Journey to A New Quality of Life

Introduction Alyssa:Let's see. I started having my period when I was in 4th grade, I think and have just never…

Read more >

Patient Reviews

Write a review
  • Angela Aro

    I have struggled with endometriosis and adenomyosis since first starting my period at 13. I was diagnosed at 21 and what followed was a series of unsuccessful surgeries and treatments. My case was very aggressive and involved my urinary tract system and my intestines. After exhausting all of my local doctors I was lucky enough to find Dr. Seckin. We…

  • Emi O

    Seckin and Dr. Goldstein changed my life!

  • Kristin Sands

    Like so many women who have tirelessly sought a correct diagnosis and proper, thorough medical treatment for endometriosis, I found myself 26 years into this unwanted journey without clear answers or help from four previous gynecological doctors and two emergency laparoscopic surgeries. I desperately wanted to avoid the ER again; a CT scan for appendicitis also revealed a likely endometrioma…

  • Wilfredo Reyes

    Dr. Seckin literally gave my wife her life back. I am eternally grateful to him for his generous, determined spirit to see that Melanie finally live free from the prison bonds of Endometriosis.

  • Carla

    I am so grateful to Dr Seckin and Dr. Goldstein. My experience was nothing short of amazing. I was misdiagnosed with the location of my fibroids and have had a history of endometriosis. Dr. Seckin was the one who accurately diagnosed me. Dr Seckin and Dr. Goldstein really care about their patients and it shows. They listened to my concerns,…

  • Melissa Boudreau

    When I think of Dr. Seckin these are the words that come to mind. Gratitude, grateful, life-changing, a heart of gold. I feel compelled to give you a bit of background so you can understand the significance of this surgery for me. I am passionate about Endometriosis because it has affected me most of my life and I have a…

  • Jaclyn Harte

    Dr. Seckin and Dr. Goldstein radically changed my quality of life. They treat their patients with dignity & respect that I've personally never seen in the literally 25+ doctors I've seen for endometriosis. This summer, I had a surgery with Dr. Seckin & Goldstein. It was my first with them, but my 5th endo surgery. I couldn't believe the difference,…

  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…