Five years ago, Karen Hashley was in San Francisco for work when a jolt of pain in her abdomen caused her to double over and hyperventilate. While Hashley was used to sharp cramping from her periods, this felt worse. At the emergency room, doctors performed an ultrasound and discovered a large cyst on her left ovary that caused it to twist, what’s known as torsion.
When she followed up with her gynecologist, the doctor suspected Hashley had endometriosis. Suddenly, there was an explanation for the cyst and years of pain she experienced.
“It took 20 years to be diagnosed,” the 35-year-old from Brooklyn told TODAY. “If I had known what was happening I could have managed my symptoms. There was a lot of suffering in silence.”
Endometriosis occurs when uterine tissue grows outside of the uterus and forms cysts. Women with the condition often experience pain, nausea and infertility. As many as 11% of American women ages 15 to 44 have it, according to the U.S. Department of Health & Human Services Office on Women’s Health. Diagnosis of endometriosis can take up to 10 years, according to the American College of Obstetricians and Gynecologists.
Starting with her first period at 11, Hashley experienced heavy flow, nausea, fatigue, insomnia and back pain. While the symptoms originally started around her period, as she aged, the pain and nausea became near constant. In middle school when she complained about her horrible periods, she was told menstruation felt awful for every woman.
“It just got normalized,” she said. “I just started being like, ‘OK I guess this is what it’s like to be a woman’ … It never was right but I just thought it was my lot in life.”
Her doctor confirmed her diagnosis via surgery — currently, the only way to properly diagnose endometriosis — and removed cysts on her ovary, bowel, bladder and behind her uterus. Like most women living with endometriosis, she wished she had known sooner.
That's why Hashley decided to participate in the ongoing ROSE (Research Outsmarts Endometriosis) study, conducted by Feinstein Institutes for Medical Research at Northwell Health in New York. Launched in 2016, the study aims to discover what causes endometriosis and if a better treatment can be developed. After Hashley signed up, she encouraged her identical twin sister, Carla, to join as well.
“Endometriosis is so prevalent but it's still under-funded and under-talked about,” she said. “I want to help the conversation.”
What is being done about endometriosis?
“One of the biggest problems is the seven- to 10-year delay in diagnosis,” Christine Metz, professor at the Feinstein Institutes for Medical Research at Northwell Health, told TODAY. “If women can get a diagnosis much earlier, they will get treatment earlier, and earlier treatment will reduce the pain and suffering.”
And, earlier detection could potentially lead to better treatments. Right now women with endometriosis have few medication options and often resort to surgery.
“It's a little bit sad there is no cure for endometriosis and there is no known way to prevent endometriosis,” Metz said.
Metz is one of the researchers in the ROSE study. They are collecting blood and saliva from women with endometriosis, those without it (the control group), and those who suspect they have it but haven't been diagnosed. Starting this summer, the study will be recruiting teens age 12 to 18.
“We believe that collecting menstrual effluent (waste) and the way we're studying endometriosis is going to give us a better insight," Metz said.
They suspected that women with endometriosis have menstrual blood that differs from women without it. Their early results with a small group of participants show there is a difference.
“There are markers … found in women with endometriosis,” Metz said.
This new study will include teens and women in menopause as well as women who have other gynecological problems, such as uterine fibroids.
“Can we predict endometriosis in women who haven't undergone the diagnosis?” Metz asked. “That’s our ongoing study.”
They hope that they’ll be able to develop a test to effectively diagnose women with endometriosis without surgery, since that is currently the best method for diagnosis.
In July, the group published a study in the Frontiers in Reproductive Health that further bolsters their research aims. The study shows that intrauterine inflammation not just pelvic inflammation contributes to endometriosis, making it more likely that menstrual blood will be an effective, noninvasive way to detect the condition.
When Carla joined the study she didn’t have endometriosis. Like her twin sister, Carla had bad cramps throughout her life but “figured they were normal.”
“It was just like low-key pain in my lower right side,” the 35-year-old from Washington, D.C., told TODAY. “I never told anybody about it because I didn’t think about it.”
After Karen was diagnosed in 2016, Carla went to her doctor and asked to be evaluated for endometriosis. But the doctor said she was fine. A few years later, she visited her sister's doctor.
“She was like, ‘Well even if I didn't know your identical twin I would say you probably have endometriosis,’” Carla recalled the doctor saying.
In January Carla underwent surgery, which confirmed her diagnosis. Doctors also discovered the cause of her right side pain: The endometriosis tethered her ovary to her pelvic floor.
She, too, views her role in the study as a way to help others.
“Karen and I both had symptoms as teenagers and could have been diagnosed 10 to 15 years ago,” she said. “Participating is my way of fighting for women's voices in health care and research, knowing that so many voices are left out.”
This story was updated on March 3, 2021 to include further developments in the ROSE study.