There’s a glimmer of hope for the millions of women across the country suffering from endometriosis.
The Seckin Endometriosis Research Center for Women’s Health opened this week at Cold Spring Harbor Laboratory (CSHL) on Long Island, making history as the first research facility within a top US scientific institution solely focused on unraveling the mysteries of the painful condition.
“Looking back, every woman I’ve treated over the last 30 years has carried a story of pain, of being dismissed, of fighting invisible battles that no one believed,” Dr. Tamer Seckin, a pioneering endometriosis specialist for whom the center is named, told The Post.
“This is not just a research project — it’s a promise that we owe to these women.”
What is endometriosis?
It’s a common condition that affects an estimated 5% to 10% of women and adolescents of reproductive age, between 15 and 49, and up to 50% of women struggling with infertility, according to Yale Medicine.
Endometriosis occurs when tissue, similar to the lining of your uterus, starts growing outside it — in places like the ovaries, fallopian tubes, and pelvic lining.
This misplaced tissue acts just like the uterine lining: thickening, bleeding, and shedding with each menstrual cycle. But because it’s in the wrong spots, it can’t exit the body, leading to pain, inflammation, and scarring.
Unraveling the complexities of endometriosis
“It’s the most misdiagnosed, mismanaged and mistreated disease,” Seckin said.
The stats back him up. On average, it takes about a decade from the first signs of symptoms for a woman to finally be diagnosed with endometriosis, according to Dr. Piraye Yurttas Beim, chair of the Endometriosis Foundation of America (EndoFound) and founder of Celmatix Therapeutics.
Why the massive delay? For starters, it’s difficult to diagnose.
“There’s not a simple blood test or a simple imaging test that can tell you definitively that you have the disease,” Beim said.
Instead, doctors typically have to perform invasive surgery to locate the rogue tissue, remove it and send it off to a lab for confirmation.
That’s a high hurdle — especially for patients who can’t afford the time, money or risks that come with going under the knife.
But the medical blind spot goes deeper than just a tricky diagnosis.
“Stigma is lingering and alive,” Seckin said. “Nobody believes it when women have pain.”
Too often, he explained, doctors chalk it up to being psychological — as if the pain is all in a woman’s head. But that couldn’t be further from the truth.
“No woman makes up pain,” Seckin said. “Ninety percent of the time, it’s endometriosis.”
He added that many women are conditioned to brush it off themselves, believing that even extreme menstrual pain — the kind that causes fainting or vomiting — is just a normal part of womanhood.
That same dismissive attitude, Beim noted, often shows up in doctors’ offices. Rather than investigating the root cause, many physicians simply hand out painkillers or prescribe birth control to mask the symptoms — leaving endometriosis undiagnosed and untreated.
Inside the endo lab
“Women’s health conditions like endometriosis have lagged far behind conditions like cancer and how we diagnose them and treat them,” Beim said.
Right now, treatment options are limited. Doctors either surgically cut out the affected tissue — sometimes removing entire organs in the process — or try to control the disease by suppressing estrogen, the hormone that fuels it.
But surgery is not a cure, as endometriosis has a high recurrence rate. Hormone treatments can also cause side effects in other parts of the body that depend on estrogen to function properly.or suppress estrogen, the hormone that fuels the disease.
That’s where the new Seckin Endometriosis Research Center for Women’s Health comes in.
“We want to understand the causes of endometriosis on a genetic level so that we can have earlier diagnosis and more precise and effective treatments,” Beim said.
Researchers at the new lab will also focus on developing smarter, less invasive ways to detect and prevent the condition before it wreaks havoc.
The effort is powered by a $20 million boost — with $10 million from EndoFound and a matching $10 million from CSHL Board Chair Marilyn Simons — giving scientists the firepower they need to finally crack the code on this devastating disease.
