Multistakeholder Convenings Reveal Systemic Neglect and Unheard Pain in Endometriosis Care for Black Women, Leading to Research Roadmap
(February 2025)
Our healthcare system is failing Black women living with endometriosis. This chronic inflammatory disease, which often leads to severe pelvic pain, painful periods, and infertility, disproportionately impacts Black women, who experience longer delays to diagnosis, inadequate pain management, and restricted access to treatments and specialized care. Beyond these challenges, research shows that women with endometriosis are at increased risk for comorbidities, including breast and ovarian cancer, autoimmune disease, and cardiovascular disease, as well as premature mortality. The stories of Black women reveal how these symptoms and health risks are compounded by years of pain, misdiagnosis, and neglect in a system that frequently dismisses their needs.
In 2024, MHQP and the Endometriosis Association (EA) convened Black women living with endometriosis, along with providers, researchers, and health plan representatives, and heard these experiences firsthand. These narratives were central to creating a new Patient-Centered Research Roadmap to Advance Equity in Endometriosis Care for Black Women, which MHQP and the EA are releasing today.
The effort, which was made possible by a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI) (EASCS #32674), seeks to bridge critical gaps in research. For far too long, the lack of research into and understanding of endometriosis has left healthcare providers without the tools or training to deliver effective, evidence-based care. The consequences are inadequate treatment, denial of coverage, and diminished quality of life.
By centering the stories of Black women and identifying actionable pathways for future patient-centered research, MHQP and EA aim to help address these inequities in research and care quality. This is more than a Research Roadmap – it is a testament to the advocacy of these women, which drives this call to action to address systemic inequities in endometriosis care.
What We Heard
Discussions during the two multi-stakeholder convenings underscored the diagnostic and treatment hurdles faced by all women with endometriosis, while highlighting the disproportionate burden faced by Black women as they navigate racial and other systemic inequities in the healthcare system when seeking endometriosis care. These are listed below, along with powerful statements from participants.
Dismissal of Symptoms, Misdiagnosis, and Medical Gaslighting
Black women with endometriosis reported that their symptoms were often dismissed by providers who held harmful racial biases and stereotypes, delaying diagnosis and treatment. This discrimination and disrespect added to the burden of the disease.
“When I had my follow up with the doctor, I was told at that time this is a “White women’s disease,” and they didn’t know how to care for a Black woman.” (Black woman with endometriosis)
“My primary care doctor referred me to a gastroenterologist and his diagnosis was that I just missed my mom’s home cooking… [the gastroenterologist] was like ‘you’re good, you just missed your mom’s cooking… Go home and have some of her fried chicken [and] you’ll be great.’ [He just] totally dismissed my pain.” (Black woman with endometriosis)
“I was meeting with a doctor [and] the first question was ‘how many sexual partners do you have?’ not ‘are you sexually active?’ not ‘do you have any partners,’ it just immediately ‘how many’? This goes back to those very rooted biases about Black women being sexually promiscuous. At that time, I was practicing abstinence so there were no sexual partners and so that stuck with me.” (Black woman with endometriosis)
Lack of Knowledge and Understanding Among Providers
Participants, specifically providers, shared that there is a knowledge gap among healthcare providers regarding the recognition and treatment of endometriosis. They attributed this gap to a lack of sufficient medical education and funding to support endometriosis research.
“People refer to me as an ‘endometriosis specialist.’ I find providers that use that term very misleading… How can you be an expert or a specialist in something we don’t have an idea about [what] causes it? It’s a chronic condition, we can’t tell you what causes it, and yet we wear the hats of experts very casually and easily.” (Provider)
“Unfortunately, my traditional training, [was] based upon a 1927 theory of endometriosis… [which] was (a) not to “hear” it [when patients describe their symptoms]; (b) not to “see” it [at the time of laparoscopy]; and (c) never [be] given the skills to be able to take it all out. I’ll take on the guilt of my GYN colleagues and plead a little bit of the training isn’t there.” (Provider)
Access and Affordability Barriers
Black women with endometriosis reported that they faced barriers to access and affordability in obtaining necessary tests and treatment, in part due to insurance limitations and high out-of-pocket costs.
“Endometriosis [is] like a bad layer cake. You start with the bottom layer, which is access. If you don’t have insurance or your insurance is saying ‘no you don’t need that test’ or ‘you don’t need that MRI,’ then how are you actually getting the care that you need?” (Black woman with endometriosis)
“For me [hysterectomy] was looked at as an elective procedure and I was initially denied even though I had this whole disease that was literally eating a hole in my uterus.” (Black woman with endometriosis)
“Chiropractic care helped with minimizing pain. I was in care for two years, but I had to stop because my insurance only covered so much, and I had to pay the difference. I could no longer afford it.” (Black woman with endometriosis)
Lack of Individualized and Multidisciplinary Care Plans
Black women with endometriosis recounted being offered limited treatment options, often centered around hormonal birth control or hysterectomy, instead of the individualized, long-term, multidisciplinary care plans needed for comprehensive management of endometriosis.
“Particularly with Black women, a lot of times [hysterectomy] is [automatically] the go to. When, through research, we know that hysterectomy, while it is a viable treatment option for a lot of people, it doesn’t cure endometriosis because endometriosis is a disease that occurs outside of the uterus.” (Black woman with endometriosis)
“[My doctor] swore that once I got on birth control it would stabilize my cycle [and] I would not be in much pain… and that was the only option that he offered.” (Black woman with endometriosis)
Limited Consideration of Alternative Care Options
Black women reported that they had to advocate for providers to consider alternative care options. It is important to note that surgical treatments play an important role for many women, but these are often miserable experiences and not curative.
“No one ever said ‘hey, what about pelvic floor PT?’… I had to fight for it and ask for it before I could finally recently get some pelvic floor PT to try to help with some of the pain and discomfort that I experienced in daily life. [If] you have pelvic surgery, [pelvic floor PT] should be the obvious [next] step and for a lot of doctors [it] isn’t.” (Black woman with endometriosis)
“I was the one who prompted [other care options] because [my doctor] wanted to just put me on medication. I don’t want to be put on medication if you can’t tell me why I’m on this medication – we need to get to the bottom of the problem.” (Black woman with endometriosis)
Lack of Shared Decision-Making
Black women with endometriosis shared that they are often given treatment options without any discussion about the possible side effects and therefore were not given the opportunity to make fully formed decisions.
“I was given a lot of those drugs, nobody talked to me about side effects. I was not given the opportunity to make a fully informed patient decision because they were the doctors, and I just believed what they told me… Nobody told me I would become suicidal. Nobody told me my hair would fall out. Nobody told me that I would have depth perception issues…” (Black woman with endometriosis)
Lack of Focus on Quality of Life
The emotional toll of living with chronic pain and enduring years of mistreatment, misdiagnosis, and inadequate treatment was evident in the narratives shared. Participants also shared that Black women diagnosed with endometriosis frequently encounter obstacles to accessing the necessary resources and support, including stigma around mental health care and the lack of specialized mental health providers who understand their specific medical context, which can result in mental health challenges.
Note that it is important to highlight the risks of referring Black women with endometriosis to mental health care, as providers may treat the pain as solely a mental health issue and dismiss pain symptoms. Ideally, patients should be referred to mental health professionals who specialize in chronic illness psychology and are equipped to address the complexities of chronic pain.
“I just want to underscore [that] quality of life is so critical because now when I go out with [my son], he’s always surprised – he’s always like ‘oh, you’re coming too mommy,’ because most of his life, I’ve just been in bed.” (Black woman with endometriosis)
“I want to speak to barriers that patients face to accessing mental health care. Some patients, especially Black women, still have stigma surrounding mental health care and not knowing how to navigate that space.” (Black woman with endometriosis)
“And one of the things that’s been really powerful in one of the models in the particular department that I’m in is that they have a mental health provider that’s based in the OB/GYN department, specifically based in the pain department. That has really resonated for me because it’s someone who has a lens and understands the disease as opposed to just a general mental health practitioner who may not have the same context and it’s been really powerful in the sense that one of the things for me that was unexpected was a lot of grief came up after surgeries and I felt that even though I was starting a new relationship, the person already had that context, which made the therapy even more powerful.” (Black woman with endometriosis)
Impact of Endometriosis on Fertility
Participants underscored the profound impact of endometriosis on fertility and the challenges individuals face in conceiving and maintaining pregnancies amidst the disease’s symptoms. The quotes from Black women with endometriosis revealed a pattern of delayed diagnosis and limited treatment options, leading to fertility challenges.
“At this point in my life I have some regrets. I do think if I had been diagnosed earlier, I probably could have preserved my fertility or at least made some other plans.” (Black woman with endometriosis)
“I believe that is one of the reasons that I am dealing with fertility issues to this day. I got on birth control at the age of 17 [and] I didn’t get off [it] until I was 32.” (Black woman with endometriosis)
“It was not my choice, but it really came down to a life-or-death situation for me. My doctor was like ‘even if you did manage to get pregnant, as the baby grew this hole in your uterus will grow and that could be detrimental to both of you.’ In 2018, I finally made the decision to have the hysterectomy.” (Black woman with endometriosis)
Potential Areas for Patient-Centered Research
With these impactful narratives as a foundation, the group then discussed potential areas for future research and organized these ideas into six categories:
- Improving training for medical providers
- Implementing standardized protocols
- Implementing multidisciplinary and individualized treatment plans
- Enhancing quality of life and behavioral health
- Fostering patient education and self-advocacy
- Elevating patient narratives
What’s Next?
Acknowledging the persistent challenges and deeply entrenched inequities in endometriosis care, the Roadmap provides a foundation for future research and collaboration. The MHQP and EA teams encourage researchers to continue to collaborate with the endometriosis community to create and test targeted interventions – including programs, policies, and treatments – designed to reduce disparities in care. Assessing the efficacy of these interventions will help identify meaningful practices and interventions that improve endometriosis care and coverage.
If you’d like to learn more about the research directions the group identified to improve endometriosis care for Black women, please download the Roadmap HERE.
The statements presented in this article are solely the responsibility of the authors and do not necessarily represent the views of PCORI.