By Emily Ortman, SWHR Director of Communications
Battling cancer. Everyone recognizes this as a challenging, distressing experience. But Linda Griffith, who was diagnosed with and survived breast cancer, says that experience doesn’t come close to her struggle with endometriosis.
“Breast cancer was actually a walk in the park compared to a 40-year experience with endometriosis — and I really mean that,” said Griffith, PhD, a professor of biological and mechanical engineering at MIT.
Endometriosis is a chronic inflammatory disease that occurs when tissue similar to the lining of the uterus grows elsewhere in the body. The disease, which affects about 1 in 10 reproductive-age women, can cause symptoms like infertility, pelvic and back pain, painful periods, painful sex, and intestinal problems.
Despite its prevalence and potentially severe effects on women, their families, and society (see SWHR’s factsheet), endometriosis is not well known or well understood. The Society for Women’s Health Research brought together three leading endometriosis experts for a congressional briefing on June 19 to discuss the current state of endometriosis research as well as identify policy needs to improve a woman’s diagnosis, treatment, and access to care.
The experts described a multitude of barriers facing women with endometriosis including:
- stigma around period pain and menstrual issues
- absence of noninvasive diagnostics
- a dearth of knowledge about the disease (including what causes it)
- inadequate treatment options
On average, women with endometriosis are not accurately diagnosed until about 7 years after their symptoms begin, an “embarrassing” diagnostic delay, said Robert N. Taylor, MD, PhD, a professor of obstetrics and gynecology at the University of Utah.
Currently, the only way to definitively diagnose endometriosis is surgery, limiting access to diagnosis for women who don’t have medical insurance or the resources to undergo a surgical procedure. “Many of us are really making a big effort to try to develop new guidelines — nonsurgical, clinical guidelines — so we don’t have to subject everybody to a surgical procedure,” Taylor said.
As researchers develop new methodology for looking at symptoms, family history, biomarkers, and other risk factors, along with diagnostic imaging tools like ultrasound and MRI, the field should be able to come up with a nonsurgical approach to diagnosing endometriosis, he explained.
Another major barrier to timely diagnosis is the stigma around menstrual issues and societal normalization of women’s pain. “Pelvic pain is the only pain that’s defined as ‘normal,” said Stacey Missmer, ScD, scientific director at the Boston Center for Endometriosis and a professor of obstetrics, gynecology and reproductive biology at Michigan State University.
The expectation of women to “prove” their pain to doctors and even family members creates a burdensome threshold to getting diagnosed, particularly for young women and adolescents, Missmer said.
With health care systems shifting to electronic medical records, there is an opportunity to incorporate the topic of pelvic pain into official medical record by asking a question or two at general practice visits, Missmer explained. “When asked, about 30-40 percent of adolescents and young women report having life-impacting pain with their periods, but no one collects that information routinely,” she said. “It’s not in a standard clinical workup.”
When young women aren’t believed and their pain is ignored, it affects their lives on a larger scale than not just getting a timely diagnosis. “That changes who these young women are and what they think they can achieve and how they choose to move forward with their lives,” Missmer said.
Despite being a well-known, well-respected scientist, Griffith said she still felt misapprehension before her ninth surgery for endometriosis. “You really get this self-doubt that no one is going to find anything wrong with you,” she explained. “Is it really in my mind?”
Studying the Biological Basics
There is a lot we still don’t know about endometriosis, including what causes it and the relationship between endometrial lesions and pain and infertility. “Endometriosis biology really isn’t rocket science — it’s a lot harder than that,” Taylor said.
All three experts stressed the need to identify different subtypes of endometriosis, similar to the different types of cancers and cardiovascular disease. “There is no question that those informative subtypes are just waiting to be discovered and they will change how we think about and how we approach this disease,” Missmer said.
Subtyping the disease could help explain why there is such variation in patients’ symptom presentation and response to treatments. Studying endometriosis proves challenging, though, as scientists do not have great animal models for researching and testing treatments. Griffith and her team at MIT are applying innovative engineering solutions to create new tools for studying diseases like endometriosis. They invented a new technology — a “body on a chip” — that can model human organ interactions, allowing them to examine how hormones affect the endometrial tissue that lines the uterus.
Searching for Treatment Options
Because we lack a clear understanding of the biology behind endometriosis, there is no cure and current treatment options are limited.
Many women start by trying pain medications and hormonal suppression therapies that reduce levels of estrogen, which is one of the major drivers of endometrial lesion growth. But hormonal suppression treatments can have negative side effects including hot flashes, fatigue, trouble sleeping, headache, depression, and bone loss.
The other more invasive option is surgery to remove the lesions — but they have a tendency to grow back. Griffith had nine surgeries to remove lesions and an emergency hysterectomy.
To address the lack of recent innovation in this field, the Food and Drug Administration (FDA) needs to implement policies and incentives that spur development of nonsurgical diagnostics and treatments, said SWHR President and CEO Amy M. Miller, PhD, who moderated the panel. She added that these new tools must be developed with a patient-centered approach to ensure meaningful outcomes that match patient needs, she said.
Overcoming Funding Challenges
Despite the clear need for much more research, endometriosis received just $7 million in National Institutes of Health (NIH) funding in fiscal year 2018, putting it near the very bottom of NIH’s 285 disease/research areas. “The amount of federal funding for endometriosis pales in comparison to the number of women who have the disease,” Miller said.
Griffith noted that all funding for her endometriosis research is from philanthropy, while she gets large amounts of federal funding for her work in areas like liver and gastrointestinal diseases.
“Because of the lack of funding, it means that a lot of people dedicating their lives to this field are doing it while they are trying to do other things that are actually keeping their laboratories and their teams afloat,” Missmer said. Although she has seen more and more interest from graduate students in this area, “whether funding will allow them to maintain in this field is left to be seen.”
“I’m exceptionally encouraged around the passion and the dedication of this field,” Missmer added. “It isn’t overstating to say how impactful getting this right will be.”
Learn more about SWHR’s work on endometriosis here.