Inclusive Care: Addressing Disparities in Endometriosis Treatment Across Diverse Communities

Disclaimer: This blog is intended for informational purposes only and is not a substitute for professional medical advice. Always consult with a qualified healthcare provider regarding your personal health needs.

Written By Nicole Notar, Endo Excision for All 

Endometriosis affects approximately 190 million people worldwide¹ —but access to diagnosis and treatment varies dramatically based on race, ethnicity, socioeconomic status, and geographic location. This inequality creates a significant healthcare disparity that must be addressed. This article examines the research-backed evidence of disparities in endometriosis care and explores potential solutions to create more inclusive healthcare systems for all communities.

Understanding Disparities 

Racial and Ethnic Differences in Diagnosis

Extensive research demonstrates significant disparities in endometriosis diagnosis across racial and ethnic groups. According to a systematic review and meta-analysis published in BJOG: An International Journal of Obstetrics and Gynaecology, compared to white women:

• Black women are approximately half as likely to be diagnosed with endometriosis

• Hispanic women show similar underdiagnosis,  though not statistically significant due to smaller sample sizes²

• Asian women are more than 50% more likely to be diagnosed²

These disparities persist even after controlling for healthcare access factors. While the average diagnostic delay is 7–10 years, it can be twice as long for Black and Hispanic women³.

In self-reported diagnoses, Black women showed significantly decreased odds and for surgical diagnoses, the disparity worsened. 

Historical Context and Medical Bias

These disparities have deep historical roots. Early 20th-century theories claimed endometriosis was a "white woman’s disease" and nearly nonexistent among Black women⁴. Medical textbooks reinforced these stereotypes through the late 1900s, describing patients as “well-dressed with trim figures”⁵.

These myths still affect patient care. Black, Indigenous, and people of color face significant barriers to diagnosis and treatment⁴.

Additionally, racial stereotypes about pain tolerance have long been embedded in medical training. Minorities routinely receive lower-quality pain care across all conditions⁵.

Socioeconomic and Geographic Barriers

In many countries, laparoscopic investigation is primarily offered for fertility—not pain—and may be restricted to married women. In the United Arab Emirates, average diagnostic delay is 11.6 years, and for unmarried women, it’s 20 years⁶.

In the U.S., the average cost of care per patient per year is $12,118 in direct costs and $15,737 in indirect costs⁷. Rural and low-income communities face greater barriers in accessing specialists.

Consequences of Disparities 

Delayed Diagnosis and Advanced Disease

Later diagnosis means more extensive disease and damage. As Dr. Soyini Hawkins explains:

“This translates into diagnosis at a later stage of disease. Endometriosis can be extremely invasive… I’m doing it laparoscopically, which might jeopardize things… such as their fertility”³.

Late-stage diagnosis leads to permanent scarring, chronic pain, and complex surgeries⁵.

Surgical Complications and Outcomes

Black women are significantly more likely to experience complications from surgery:

• 64% higher odds of major complications from hysterectomy

• 71% higher odds of any complications in the 30 days post-op⁸

These differences remained after adjusting for surgical technique and other factors.

Disparities in Medication Prescriptions and Management

A study of Medicaid claims data revealed Black patients were prescribed 17 of 28 drug classes significantly less often⁹. Antidepressants and anxiolytics were among the most under prescribed—suggesting a lack of attention to the mental health aspect of endometriosis.

This may be due to poor patient-provider rapport, cultural misunderstanding, or implicit bias⁹.

Addressing the Disparities: A Multi-Faceted Solution

1. Education and Awareness

For Healthcare Providers Curricula must avoid using race as a genetic proxy and instead emphasize:

• Recognizing symptoms in diverse populations

• Cultural competency in care delivery

• Addressing bias in pain assessment

• Understanding how SES affects treatment⁵

For Patients and CommunitiesCampaigns by groups like the Endometriosis Foundation of America can help raise culturally sensitive awareness and reduce stigma⁴.

Community outreach should help people:

• Recognize symptoms

• Communicate with providers

• Navigate healthcare systems

• Find advocacy support

2. Research and Data Collection

Most studies use data from high-income countries and homogenous populations⁶. Research must:

• Include diverse populations

• Examine symptom variation

• Investigate social determinants

• Develop culturally competent tools

• Track disparities via standardized metrics

Failure to improve inclusivity in research risks deepening global disparities⁶.

3. Improving Access to Care

Solutions include:

• Expanding insurance coverage for laparoscopy

• Incentivizing specialists to work in underserved areas

• Offering telehealth with digital access support

• Using community health workers as care navigators

• Providing translation services and financial aid

• Ensuring respectful, culturally competent care

4. Addressing Social Determinants of Health

Researchers at the University of Michigan emphasize that racism, stress, food insecurity, and environmental toxins all affect gynecological health¹¹.

Comprehensive responses include:

• Environmental justice policies

• Nutrition access programs

• Chronic pain workplace accommodations

• Mental health services

• Transportation and childcare aid

5. Developing Partnerships and Coalitions

Groups like the Endometriosis Foundation of America are working to reform care for LGBTQIA and BIPOC communities⁴.

Coalitions can:

• Drive policy change

• Secure equity-focused research funding

• Develop inclusive clinical guidelines

• Increase provider diversity

• Provide patient navigation

• Track outcomes and improvements

Moving Forward Together

Endometriosis care must center equity. Racism is a public health issue—and a women’s health crisis⁴.

Meaningful progress requires:

• Institutional DEI commitments

• Structural accountability

• Patient-centered, trauma-informed approaches

• Long-term funding

• Engagement with marginalized communities

• Inclusive medical education

When we prioritize equity in endometriosis care, we create a system that works for everyone—no matter their race, zip code, gender identity, or income level.

References

1. World Health Organization. (2023, March 24). Endometriosis.

2. Bougie, O., Yap, J., Sikora, L., Flaxman, T., & Singh, S. (2019). Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta-analysis. BJOG.

3. AJMC. (2023, May 19). Racial Disparities Associated With Endometriosis Diagnosis.

4. Endometriosis Foundation of America. (2020, June 25). Research Articles on the Racial and Ethnic Disparities in Endo Treatment.

5. Bougie, O., & Healey, J. (2022). Revisiting the impact of race/ethnicity in endometriosis.

6. World Health Organization. (2023). Endometriosis: disease mechanisms and health disparities.

7. Li, R., Yang, W., & Li, J. (2021). Prevalence and Time of Diagnosis of Endometriosis across Racial and Ethnic Groups in the US. medRxiv.

8. Marsh, E.E., et al. (2023). Racial Disparities in Uterine Fibroids and Endometriosis.

9. McKillop, M., et al. (2025). Investigating racial disparities in drug prescriptions for patients with endometriosis. npj Women’s Health.

10. Li, R., Yang, W., & Li, J. (2021). Prevalence and Time of Diagnosis of Endometriosis across Racial and Ethnic Groups in the US.

11. University of Michigan Institute for Healthcare Policy & Innovation. (n.d.). Uncovering drivers of racial disparities in uterine fibroids and endometriosis.

12. Contemporary OB/GYN. (2020, November 13). How race/ethnicity influences endometriosis.

13. ScienceDirect. (2023). Racial disparities in uterine fibroids and endometriosis: a systematic review and application of social, structural, and political context.