Endometriosis focus of new women's health center at Cold Spring Harbor lab that opens with $20M endowment

A women’s health research center focused on endometriosis opened Thursday at Cold Spring Harbor Laboratory, hoping to unravel the mysteries behind the painful disease that impacts millions of women every year.

The Endometriosis Foundation of America said it is committing $10 million to the center, which will put the spotlight on a condition that has traditionally not received the kind of attention or funding awarded to other health issues. Marilyn Simons, chair of the Cold Spring Harbor lab’s board, made a $10 million matching donation.

Endometriosis causes tissue similar to the lining of the uterus to grow on other organs such as ovaries, bowels or bladders in women of childbearing years, according to the Centers for Disease Control and Prevention. It can cause severe pain, internal bleeding and infertility.

Scientist Semir Beyaz, who works at Cold Spring Harbor Labs, has been researching what causes endometriosis and how it develops by examining genetic, environmental and lifestyle-related factors.

"This will allow us to do the research that has not ever been done before, which is the foundational work across different patient groups," Beyaz said. "If you don't understand the mechanism, you cannot solve the disease."

Researchers said they can take healthy cells and transform them into diseased cells to find better ways to diagnose and eventually develop treatments for endometriosis, as well as ways to prevent it.

"We have resources here that we can deploy to endometriosis to potentially first understand it, and then solve it," Beyaz said. "Cold Spring Harbor is one of the forefronts in this molecular and genetic research that we historically applied to other diseases like cancer."

Women have said their chronic pain has been dismissed, even by doctors. The Endometriosis Foundation of America said it takes about 10 years for a woman to receive a diagnosis because not enough people in the public and the medical community have a strong knowledge of the disease.

"Endometriosis is not rare, it’s not imaginary," said Dr. Tamer Seckin, a gynecologic surgeon and pioneering endometriosis specialist who is the namesake of the Seckin Endometriosis Research Center for Women’s Health at Cold Spring Harbor Labs. "It’s a systematic, inflammatory disease that affects at least 200 million women around the world."

Seckin, who helped start the Endometriosis Foundation, said he believes this is the first research center dedicated to the disease. It will have the advantage of 30,000 specimens from patients that Seckin has collected to use for testing.

He urged women to advocate for themselves if they feel a doctor is not taking their complaints and symptoms seriously.

"Women should not accept what they hear from any doctor," Seckin said. "They have to speak for themselves."

Alexis Joel attended the event at Cold Spring Harbor Labs along with her husband, singer Billy Joel, and shared her own experience with endometriosis.

The Northport native fought back tears as she recounted how a long line of medical specialists and numerous health tests were unable to provide a diagnosis or ease her suffering.

Endometrial tissue growth is linked to a woman’s menstrual cycle and hormone fluctuations. Some women experience internal bleeding, adhesions and scarring. The tissue does not just appear on the reproductive organs but can be found in other parts of the body.

"I was begging doctors to help me," Joel recounted. She said she finally found relief with Seckin, who had operated on comic Amy Schumer. "She said he will change my life. She was correct."

Seckin removed 27 lesions during surgery on Joel.

"This is more than science," Joel said of the lab’s research. "It's a pathway to an earlier diagnosis, targeted therapies and personalized care for millions who have waited too long for answers."

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.