Endometriosis Is an Equity Issue: Why Access to Care Matters
Updated: Aug 25
Having endometriosis is one experience. Being able to access appropriate care for it is another.
For people living with endometriosis, the path from symptoms to diagnosis and appropriate treatment can be shaped by more than the disease itself. Race and ethnicity, income, insurance coverage, geographic location, transportation, provider availability, health literacy, disability, and other social and structural factors can influence whether someone is heard, diagnosed, referred, treated, and supported.
Endometriosis affects an estimated 10% of reproductive-age women and girls globally, yet the burden of the disease, and access to appropriate care, is not experienced equally.
Health equity means that appropriate endometriosis care should not depend on who you are, where you live, how much money you have, or how easily you can navigate the healthcare system.
The Need for Equity in Endometriosis Care
Disparities in Diagnosis and Treatment
Access to endometriosis diagnosis and treatment is not experienced equally. The path to care can be shaped by overlapping social, economic, geographic, and healthcare-system barriers that affect whether symptoms are recognized, whether a patient is believed, how quickly appropriate referrals are made, and what treatment options are realistically accessible.
These barriers can include:
Financial and Insurance Barriers: Copays, deductibles, insurance restrictions, out-of-network specialists, medication costs, unpaid time away from work, and other expenses can make appropriate care difficult to obtain, even when that care technically exists.
Race and Bias in Healthcare: Racial bias and longstanding inequities within healthcare can influence how pain and symptoms are perceived, evaluated, and treated. For Black women and other historically underserved populations, these inequities may compound the already difficult path to an endometriosis diagnosis and appropriate care.
Geographic and Provider Barriers: Endometriosis expertise is not evenly distributed. Some patients must travel significant distances or leave their communities to reach clinicians with appropriate experience, creating additional barriers involving transportation, lodging, time, finances, and continuity of care.
Knowledge and Referral Gaps: Not every healthcare professional receives the same education or training in recognizing and managing endometriosis. When symptoms are normalized, dismissed, or attributed to other causes without adequate investigation, the path to appropriate diagnosis and specialty care can become longer and more complicated.
A healthcare service can exist and still be inaccessible to the person who needs it.
What Equity in Endometriosis Care Requires
Equity in endometriosis care will require more than asking patients to advocate harder for themselves. Meaningful change requires healthcare systems, medical professionals, researchers, policymakers, employers, educators, community organizations, and patients to recognize the barriers that shape endometriosis care—and work to remove them.
Creating more equitable endometriosis care can include:
Improving Healthcare Professional Education: Strengthening education about endometriosis can help healthcare professionals recognize symptoms earlier, respond appropriately to patient concerns, and make timely referrals when specialized care is needed.
Expanding Access to Appropriate Care: Improving care means looking beyond whether services exist and examining whether patients can realistically reach and use them. Insurance coverage, affordability, transportation, geographic location, provider availability, disability access, and referral pathways all matter.
Addressing Bias and Inequity: Efforts to improve endometriosis care must acknowledge how bias and structural inequities can affect whose pain is believed, whose symptoms are investigated, and who gains access to appropriate treatment.
Strengthening Research and Representation: Endometriosis research should continue to examine not only the disease itself, but also differences in diagnosis, treatment, outcomes, and access to care across diverse populations and communities.
Centering Lived Experience: People living with endometriosis should have meaningful opportunities to inform the research, healthcare practices, programs, policies, and resources intended to serve them.
Patients can advocate for themselves, but patients should not have to overcome an inequitable system simply to receive appropriate care.
The Role of Healthcare Providers
Improving Patient Care
Healthcare providers can significantly influence a person’s path through endometriosis, from whether symptoms are taken seriously to how quickly appropriate evaluation, treatment, and referrals occur.
Improving care begins with recognizing that patients are not simply reporting symptoms; they are providing essential information about what is happening in their bodies and how those symptoms are affecting their lives.
Listen and Investigate: Reports of persistent or severe pain, abnormal bleeding, gastrointestinal or urinary symptoms, painful intercourse, infertility, and other possible symptoms of endometriosis deserve thoughtful evaluation rather than normalization or dismissal.
Recognize the Limits of Your Expertise: Not every healthcare professional will have specialized expertise in endometriosis. When a patient’s needs exceed a provider’s training or experience, an appropriate referral can be an important part of quality care.
Practice Informed, Shared Decision-Making: Patients should receive clear information about potential benefits, risks, limitations, and alternatives when discussing treatment so they can meaningfully participate in decisions about their care.
Consider the Whole Person: Endometriosis can affect employment, education, relationships, finances, mobility, emotional well-being, fertility, and everyday functioning. Quality care should consider the broader impact of the disease, not only individual symptoms.
Examine Bias in Care: Providers and healthcare systems should recognize how implicit bias, stereotypes, and structural inequities can influence whose symptoms are believed, investigated, referred, and treated.
Being heard should not depend on finding the “right” doctor. Respectful, informed, patient-centered care should be the standard.
The Role of Community and Support Systems
Building a Supportive Community
Living with endometriosis does not happen in isolation. The effects of the disease can extend into families, relationships, friendships, workplaces, schools, and communities. Support should therefore extend beyond the healthcare system.
A supportive community begins with believing people when they describe their experiences. It means recognizing that chronic pain and other symptoms may affect someone's ability to work, attend school, maintain relationships, participate in activities, or complete everyday responsibilities.
Support can take many forms, from listening without judgment and helping with practical needs to providing workplace or educational accommodations, connecting people with resources, and creating spaces where lived experiences are respected.
Peer and online communities can also provide valuable connection, particularly for people who may not have access to endometriosis-informed resources where they live. These spaces can reduce isolation, encourage self-advocacy, and remind people that their experiences are not theirs to carry alone.
No one should have to prove the severity of their disease before receiving compassion, accommodation, or support.
Equity Must Be Part of the Conversation
Endometriosis awareness matters. But awareness without access, education, accountability, and equitable care leaves too many people exactly where they started—living with symptoms, searching for answers, navigating barriers, and trying to be heard.
Improving endometriosis care requires more than knowing the disease exists. It requires examining who receives timely diagnosis, who can reach knowledgeable providers, who can afford treatment, whose pain is believed, whose circumstances create additional barriers to care, and whose experiences have historically been overlooked.
Equity does not mean that everyone receives the same thing. It means recognizing the barriers that prevent people from receiving the care, information, resources, and support they need, and working to remove them.
Endometriosis may not affect every person in the same way, but everyone living with it deserves the opportunity to receive appropriate care.
Awareness tells the world endometriosis exists. Equity asks what we are going to do about it.
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