Endometriosis, a chronic inflammatory condition, affects approximately 10% of reproductive-age women worldwide. Despite its prevalence, a new study from the Massachusetts Health Quality Partners and the Endometriosis Association found “our health care system is failing Black women living with endometriosis.” The study describes a system that often neglects Black women’s pain, leading to prolonged suffering and reduced quality of life. In response, the researchers developed a roadmap to advance equity in endometriosis care.
Natalya Martins, one of the lead authors of the study, joined GBH’s All Things Considered host Arun Rath to discuss their findings and how Black women living with endometriosis are often overlooked. What follows is a lightly edited transcript.
Arun Rath: Let’s start off with an overview of endometriosis ... how it actually affects individual women, their health and the challenges it presents.
Natalya Martins: Sure. I’ll just start by sharing for those listeners who aren’t familiar with endometriosis. It’s a chronic, multisystem inflammatory disease where, essentially, tissue similar to the lining of the uterus grows outside of the uterus. It can cause severe pain, infertility and a range of other symptoms that not only impact a person’s health but also their quality of life.
Just for a little bit of context and background — at Massachusetts Health Quality Partners, or MHQP, our mission really at a high level is to improve the quality of patient care experiences throughout the commonwealth. Over the last few years, a lot of our work has focused on addressing inequities in pain care. We’ve had many, many conversations with patients and clinicians that have really highlighted the need to improve care across the board, specifically for pain and for women — and for women of color, more specifically.
We started to focus our attention on endometriosis because it’s a very painful disease that’s often underdiagnosed. It’s diagnosed late and undertreated, particularly for Black women. On average, it takes about seven to 10 years after the onset of symptoms to get a diagnosis of endometriosis, and Black women are statistically less likely to actually get diagnosed. And, when they are diagnosed, on average, they’re diagnosed at ages 2.6 years older than white women.
Outside of those disparities in diagnosis, there’s also inadequate funding for research and treatment.
So, there are 6.5 million women in the U.S. alone who have been diagnosed with endometriosis. The funding allocation from the NIH, the National Institute of Health, was $29 million in 2023. In comparison, that same year, Crohn’s disease — that’s a chronic inflammatory condition like endometriosis that affects approximately three million people in the U.S. — received $92 million in funding, so that’s over three-fold the funding allocated for endometriosis.
Rath: That’s kind of stunning, actually. I mean, there’s so much in this report about these disparities. Again, I think “stunning” is probably the best word for it because you’re talking about this doubling-up of getting diagnosed later, and then when you get the treatment, it’s not as good.
There was a quote from this report, just one example of this kind of medical gaslighting, really. A Black woman with endometriosis said, “When I had my follow-up with the doctor, I was told at the time that this is a white woman’s disease and they didn’t know how to care for a Black woman.” It sounds like from what the study looks at, that’s not uncommon.
Martins: Absolutely. I would say, in response to that quote, that there’s a major gap in clinician education. We heard that many clinicians receive almost no training about endometriosis — what it is, how to treat it. As a result, Black women are often told their pain is normal or that something will go away on its own, maybe with a few ibuprofen. Particularly, that falsity that endometriosis is a disease that only affects white women came up time and time again, and it’s just unacceptable.
Rath: The report lays out these stark disparities, but there’s also a research roadmap. Talk about that — the solutions. What are the priorities and goals you have identified to advance equity in endometriosis care?
Martins: Sure. But I think before getting into some of those research priorities, I do just want to underscore how we heard firsthand how this disease has really disrupted lives. It keeps women from school, from work, time with their friends and their family and, for some, it can even lead to infertility. We really need a future of earlier diagnoses as well as improved treatment options, and I think that’s the course that this roadmap really tries to delineate by amplifying the voices of women with endometriosis.
I’ll start by saying loud and clear that we need to reform insurance policies so that diagnostic procedures, multidisciplinary treatments and alternative therapies — you know, as one example, we heard about the critical role of pelvic floor physical therapy post-surgery. We have to make sure those are covered. Right now, many women are struggling to get the care they need because insurance just won’t pay for it.
Speaking to the insurance and affordability gaps, one Black woman with endometriosis shared with us that endometriosis is “like a bad layer cake. You start with the bottom layer, which is access. If you don’t have insurance or insurance says 'no, you don’t need that test or MRI.’ How are you getting the care you need? Then you add in all the other layers. So much scar tissue everywhere, causing chronic pain. It’s like a terrible cake that nobody wants to takes a bite of.”
These quotes are just so, so powerful, and we’re so grateful to the women who participated in this project and shared their stories to really elevate this roadmap as not only a research agenda but also an awareness-raising tool.
Going even further upstream, we did hear also from participants in this project that there’s a lack of research on effective treatments. That is a major barrier to better care and insurance coverage — especially in endometriosis, where disparities-focused research is particularly limited.
Essentially, more funding is needed to build evidence and highlight what works and what is most effective for women with endometriosis so we can get insurance companies to pay for that care.
Rath: Ahead of those ideas from the roadmap being put into place, for Black women right now who suspect they might have endometriosis and are facing challenges getting a diagnosis, what advice would you have?
Martins: Let me think about that. You know, I think something that we heard clearly as well is that we need to support patient advocacy groups that elevate Black women’s voices and push for change because we heard that support groups and community resources are really invaluable in offering both clinical information and emotional support. That might be one avenue to turn to.
A better future here means that Black women with endometriosis don’t have to fight to be believed.
