Spotlight on Endometriosis

Lisa D. Ellis

Reviewed by QualityHealth's Medical Advisory Board

As an actress and co-host of Bravo’s "Top Chef" show, Padma Lakshmi’s famous face is easy to recognize. Yet her endometriosis—a chronic health problem that caused pain and infertility for much of her adult life—went undetected for more than a decade by some of the nation’s best doctors.

What Is Endometriosis?

About 8.5 million women in North America currently suffer from endometriosis, a disease that interrupts the normal release of the uterine lining during the menstrual cycle in women of reproductive age, allowing some of the uterine tissue to remain in the body and attach to the organs. This can cause an array of serious health issues, including:

Abdominal and bladder symptoms
Painful intercourse
Irregular bleeding
Diarrhea and constipation
Pelvic and rectal pain
Infertility

Despite the extreme nature of the symptoms, which can worsen as the disease progresses, many women suffer for years before getting a proper diagnosis.

Ignoring the Problem

The problem is that society expects menstrual periods to be painful, so doctors all too often dismiss severe symptoms as a “normal” part of the female experience, according to Tamer Seckin, MD, a New York City-based gynecologic surgeon who is known for his groundbreaking work treating endometriosis. But women don’t have to suffer unnecessarily, Seckin stresses. He points to the array of treatment options available, including a procedure he performs called lapascopic excision, which involves removing the damaged tissue and, in the process, restoring organ function.

In Lakshmi’s case, this procedure made all of the difference, freeing her from years of pain and allowing her to regain her fertility so she could get pregnant and have a baby.

Spreading the Word

While Lakshmi is grateful for her own happy ending, she wants to help change a system that fails so many women. "If I had been diagnosed at 13, 16, 25 or even at 30, that would have been 12 weeks a year, every year of my life, that would have been completely different," Lakshmi says. "Even though I had excellent healthcare and saw many of the most respected doctors, I was not properly diagnosed until the age of 36. After being bedridden for a few days a month and having multiple surgeries, I felt something had to change for the next generation of girls."

The Endometriosis Foundation of America

This desire to help other women and prevent them from unnecessary suffering prompted Seckin and Lakshmi to join forces and create the Endometriosis Foundation of America (EFA). The goals of EFA are to raise awareness about endometriosis and to shine the spotlight on the array of effective treatment options. The foundation also supports important research efforts to gain a better understanding of this disease. Seckin points out that despite the widespread nature of endometriosis, it is currently one of the least researched conditions.

Furthering Research and Public Awareness

In an effort to change this, EFA has created the ROSE (Research OutSmarts Endometriosis) Project, a research effort in conjunction with the Feinstein Institute for Medical Research, part of North Shore/LIJ Hospital in Manhaasset, NY. The ROSE Project is designed to learn more about the causes of endometriosis, including a possible genetic component, so the medical community can develop new ways to prevent and treat this disease.

EFA also recently launched a pilot community and school-based awareness campaign called the ENPOWR Project to help young people identify the signs and symptoms of endometriosis and to educate them on when and how to access a specialist for a proper diagnosis. This campaign is currently limited to New York, but Seckin hopes the model will expand throughout the nation in the not-too-distant future.

What You Can Do

If you suspect you or someone you know could have endometriosis, Seckin and Lakshmi stress the importance of being your own advocate and getting a proper diagnosis. They point out that you can get the ball rolling educating yourself about the condition and starting a conversation with your doctor. You can also visit the EFA website at endofound.org to learn more about the disease, including symptoms and treatment options.

"My decades-long struggle with the disease, misdiagnosis and unsuccessful treatments led me to champion this cause and make a positive impact by sharing my experience. This disease is much more than 'killer cramps,' and young women in particular need to recognize the signs and symptoms and advocate for their own health and treatment," Lakshmi says.

Tamer Seckin, MD, reviewed this article.