A Northwell Health study is looking at the connection between menstrual blood and the early detection of endometriosis.
Endometriosis is a painful — yet common — condition. It causes abnormal uterine tissue to grow outside of the uterus, causing painful cramping and, in some cases, infertility. Roughly 1 in 10 people with a uterus have endometriosis.
While prevalent, endometriosis can often take between seven to 10 years to receive a diagnosis.
“I think a lot of people are suffering in silence, or they’re suffering and their voices aren’t heard,” said Dr. Christine Metz, co-director of the Research OutSmarts Endometriosis (ROSE) study.
The study, aiming to detect endometriosis early and improve treatments, is co-directed by Metz and Dr. Peter K. Gregersen at the Feinstein Institutes for Medical Research at Northwell Health. The ROSE study uses samples from participant’s menstrual blood as a screening tool for the disease.
The most common way to diagnose endometriosis is by undergoing surgery, typically an invasive procedure known as a laparoscopy.
Metz noted that there are very few studies that have focused on menstrual blood in the context of endometriosis. “We've really kind of pioneered this approach, and feel that we've learned quite a bit from it, and have published several papers that support our findings,” she said.
The ROSE study is in its second phase. The team is now seeking those who are suspected to have the disease for the clinical trial. Although typically seen as a women’s issue, endometriosis affects everyone with a uterus, even those who don’t identify as women.
“I probably went to like three or four different gynecologists before they were like, ‘oh, yeah, and you probably have it,’” research participant Megan Stade said. “Which is kind of ridiculous in the first place.”
Stade, 28, has a family history of endometriosis, though always had her symptoms belittled by doctors until very recently. Previous doctors often told her that she was just a “young girl” who had a “bad period.”
“It’s not okay to be in that much pain,” Stade said. She acknowledged a feeling immense relief once she found her current doctor, who she described as a “listening ear.” This doctor recommended her to participate in the ROSE study.
“Everyone there was so nice and accommodating,” she added.
With the screening tool developed by the research team, Metz said she hopes to expedite the diagnostic process. “I think people need kind of a push to get that laparoscopic surgery so that they are definitively diagnosed,” she said.
Like Stade, ROSE study participant Brianna — who chose not to share her last name due to personal concerns surrounding medical details — experienced painful periods since she was young. Brianna recently underwent the diagnostic surgery after providing a sample for the study.
“If I had known that I could have had suspected endometriosis at a young age, it could have really impacted my life,” Brianna said.
“If I have a daughter, the availability to have a product like [the ROSE study screening tool], knowing the family history, it would just be so great to know that she wouldn't have to go on a three to five year journey,” she added.
The ROSE study might do just that.
“The more that we can raise awareness of people sharing symptoms, and talking about menstruation, talking about period pain, the more likely we will be able to help treat these people,” Metz said.
The New York State Department of Health recently recognized March as Endometriosis Awareness Month.
This story is courtesy of WSHU Public Radio.