In her 20s, Christie Reuter experienced cramping and heavy periods that worsened over time.
“I was in so much pain that I knew something was wrong,” the 37-year-old from West Islip, New York, told TODAY. “It’s hard to go about daily life just in pain, knowing like it’s more than just a week of cramps. I get pain when I ovulate as well and sometimes I get random pain for no reason.”
A doctor suspected endometriosis and suggested laparoscopy to diagnose it. That surgery confirmed that she had endometriosis but that doctor did not remove it — what’s called excision. This meant her symptoms continued as the disease progressed. The doctor also put her on a medication to suppress her hormones, but the side effects felt terrible and she stopped taking it after three months.
“It was absolutely horrible,” she said. “I had looked online and found the reviews saying it was awful and my doctor encouraged me not to worry about that.”
After this experience, Reuter found another doctor who excised her endometriosis. By this time, the disease had grown on the outside of her bowels, uterus, fallopian tubes and caused some of her organs to be stuck together, intensifying her pain. While she original felt relief after her 2017 surgery, the pain has returned and her doctor thinks more endometriosis might have developed.
“I’m still in a lot of pain. It always grows back basically. At some point I’ll probably need a hysterectomy,” she said. “It’s concerning for me because I’m almost 38 and I want to be able to try and have kids and it’s harder for people with endometriosis.”
It took years for Reuter to be diagnosed and treated for endometriosis, which sadly remains common. Endometriosis impacts about 11% of women, according to the U.S. Department of Health & Human Services Office on Women’s Health. It takes up to 10 years for it to be diagnosed, according to the American College of Obstetricians and Gynecologists. The only way to diagnose endometriosis is through surgery, Christine Metz said. But a new study published in the journal BMC Medicine conducted by Metz and her colleagues as part of the ROSE study could lead to better ways to screen for the condition.
“One of the major problems for people with endometriosis is the delay in the time between symptoms and diagnosis. And that could be anywhere between six and 12 years — and I’ve even heard longer,” Metz, co-director of the Research OutSmarts Endometriosis (ROSE) clinical study, told TODAY. “One of the limiting factors that plays into this is that it requires laparoscopic surgery to define endometriosis, mainly in the pelvic cavity. This method that we’re proposing would be a non-invasive method to identify those at risk for endometriosis.”
Metz and her colleagues analyzed samples of menstrual effluent from 33 women to see if they could detect a cellular difference between women diagnosed endometriosis and women who did not have it. Women with endometriosis had a marker in their menstrual fluid that women without it did not have.
“This paper that’s out now really defines the difference between patients who are already diagnosed versus controls,” said Metz, a professor in the Institute of Molecular Medicine at the Feinstein Institutes for Medical Research. “In the past in order to get the endometrium, you would have to do a surgical biopsy and we found that you can indeed get endometrial tissue through menstrual effluent.”
Dr. Megan Billow, who was not involved in the research, said the paper provides evidence that there’s a distinction between women with and without endometriosis.
“What this study is showing is that they really were able to identify differences, at a cellular, molecular level in women who have endometriosis versus women who do not,” Billow, a doctor at Cleveland Clinic’s OB/GYN & Women’s Health Institute, told TODAY. “The impact that studies like this have is in helping to develop tests or biomarkers that we can utilize that can essential identify women that are likely to have endometriosis.”
Billow said that could eventually lead to quicker diagnosis, which means that women can receive treatment faster.
Billow said the drawback of the the study is that it only looked at a few participants.
“The biggest limitation is a small sample size and understanding the clinical significance of this,” Billow said. “We know that this is what the differences of the two groups was but then how do we utilize that in developing a test?”
Metz said the ROSE study continues and they’re looking at women with symptoms but without a diagnosis to compared to those who do not have endometriosis to see if they can discern a difference. She hopes that continued research leads to better screening for the condition and perhaps better treatment. Only excision treats endometriosis but the disease can continue to occur even after surgery.
“We’re hoping to study aspects of endometriosis through menstrual effluent, which would guide us to better therapies,” Metz said. “We hope that having an early detection method could lead to clinical trials to test new agents or existing agents in a more aggressive way."
Reuter participated in the ROSE study after her 2017 surgery and feels grateful that she might be able to help others avoid what she’s experienced.
“It’s very rewarding because there’s so much pain involved with it that there’s very little light at the end of the tunnel,” she said. “This is an amazing breakthrough that is going to help a lot of people.”
This article was originally published on TODAY.com