Living With Endometriosis: a Personal Perspective; a Professional Passion

Living with endometriosis has forced Iris Becene to slow down and listen to her body.

“To pursue the career I want, I must prioritize sleep, healthy eating, exercise, and stress level management,” said Becene, a medical student at Yale School of Medicine.

Becene was diagnosed with endometriosis when she was 15 years old.

“Getting an incurable diagnosis that is characterized by pain and potential infertility at 15 was devastating,” she said. “I had always wanted a family, and I had begun exploring the idea of becoming a physician. Suddenly, I was unsure if I would get to fulfill either of those dreams.”

According to Nina Stachenfeld, PhD, a senior research scientist in the Department of Obstetrics, Gynecology & Reproductive Sciences at Yale, endometriosis is among the most common gynecological conditions affecting women.

“About 17 million Americans, or one in 10 women, have this disease,” said Stachenfeld.

To better understand endometriosis, Yale Ob/Gyn hosted a special screening of the documentary Below the Belt on Thursday, May 16. After the film, experts discussed the crisis surrounding its diagnosis and the latest in advances, research, and advocacy. The panel included department Chair Hugh Taylor, MD, Alla Vash-Margita, MD, Stachenfeld, patients, and the film’s producer, Shannon Cohn.

“This documentary shows, through personal testimony, the impact of this disease and the consequences of late diagnosis,” said Vash-Margita, associate professor of obstetrics, gynecology & reproductive sciences. “The patients who were part of the panel shared their journey to diagnosis and stories about life with endometriosis.”

Even though the disease affects many women, it is still widely misunderstood and misdiagnosed.

“Menstrual cramps are the only pain that we as human beings accept as normal,” said Dr. Taylor. “Any other pain would prompt one to seek medical attention, but here we have pain that we’ve normalized. Thus, the pain of endometriosis is too often underappreciated and underrecognized by physicians, other health care providers, and even by patients and their families.”

Becene knows that all too well. She was initially told she had a gastrointestinal disorder.

“A gastroenterologist diagnosed me with fructose intolerance based on my history alone, which I do not have,” said Becene. “In the year before my diagnosis, I had over 25 doctor’s appointments with various specialists. I had every test imaginable – bloodwork, CT scans, ultrasounds, and even an MRI.”

At one point, she asked her mother to stop taking her to specialists because all she would be told was that everything was fine even though she was in pain.

But her mother would not give up.

“If it were not for her advocating for me and continuing to push for answers,” said Becene, “I would not have a diagnosis.”

Awareness is why Becene and faculty organizers say events like the Below the Belt screening are so crucial.

“The average time for diagnosis is about six to 10 years, and the delay can be devastating, including reduction in quality of life and the disease spreading to other organs,” said Stachenfeld. “This is why advocacy is critical to raise awareness for women and clinicians to recognize signs and symptoms of endometriosis better.”

“I can confidently say that had I not been diagnosed early, I would not be here in medical school,” said Becene.