Authored by Rhea Manohar MS2, Meghan Etsey MS3, and Ariela Marshall MD on behalf of AMWA Gender Equity Task Force
Endometriosis is a chronic and often debilitating condition that affects approximately 10-15% of women of reproductive age in the United States (Parasar et al., 2017). It occurs when endometrial-like tissue grows outside the uterus, commonly affecting the fallopian tubes, ovaries, bladder, and intestines. Endometriosis is associated with severe pelvic pain, dysmenorrhea, pain during intercourse, and in some cases infertility and other reproductive complications (Bulun et al., 2019). Despite its widespread prevalence, endometriosis remains underdiagnosed and undertreated, particularly in underserved and underrepresented communities, such as rural women and Black and Hispanic women, where systemic healthcare disparities contribute to delayed diagnosis and limited treatment options (Bougie et al., 2022; Orlando et al., 2022).
The exact etiology of endometriosis remains uncertain, though researchers have suggested potential mechanisms such as retrograde menstruation, genetic predisposition, and hormonal dysregulation (Smolarz et al., 2021). One hypothesis suggests that up to 50% of endometriosis cases have a genetic basis, while environmental factors and epigenetic modifications for the remaining cases (Montgomery et al., 2022). While genetic linkage and analysis studies are ongoing, research indicates potential dysregulation of genes coding for estrogen receptors and those related to urogenital development (Dun et al., 2010). The absence of a definitive diagnostic biomarker makes diagnosing endometriosis difficult, often leading to misdiagnosis as pelvic inflammatory disease, irritable bowel syndrome, or ovarian cysts (Tian et al., 2020). Initial misdiagnosis may also contribute to diagnostic delays.
Racial and ethnic disparities in endometriosis diagnosis and treatment remain a significant concern. Since the late 1970s, there has been limited research on how endometriosis persists non-White women. For example, Black women have been underdiagnosed due to the longstanding misconception that endometriosis is rare in this population (Bougie et al., 2022). Additionally, recent research indicates that Asian and Pacific Islander women may experience higher rates of endometriosis than previously recognized (Bougie et al., 2022). Both of these examples indicate key gaps in knowledge related to how subsets of the population may experience the disease and the impact that it has on these communities.
Beyond diagnosis, several factors contribute to the disparities in treatment of women with endometriosis even after diagnosis:
- Healthcare Inequities: Women from marginalized communities often face barriers in accessing specialized gynecological care, leading to delays in diagnosis and treatment. Additionally, research indicates that complication risks are greater in surgical care related to endometriosis for Hispanic, Black or African American, Native Hawaiian or Pacific Islander, and American Indian or Alaska Native women (Orlando et al., 2022).
- Surgical Disparities: Women from racial and ethnic minority groups are more likely to undergo invasive procedures such as hysterectomy or oophorectomy at younger ages compared to their White counterparts, raising concerns about overtreatment and loss of reproductive options (Orlando et al., 2022).
- Economic Barriers: The cost of endometriosis treatment, including hormone therapy, fertility treatments, and surgical procedures, places a disproportionate burden on lower-income individuals, who are often from historically underserved populations (Cox et al., 2022; Ellis et al., 2022).
Addressing these disparities requires a multifaceted approach that includes improving awareness, ensuring diverse representation in clinical research, and expanding access to care. Public health initiatives should work to dismantle myths surrounding endometriosis, ensuring that healthcare providers are trained to recognize symptoms across all racial and ethnic groups (Bougie et al., 2022; Center for Community Health Partnership & Research, 2022). Additionally, healthcare providers should undergo training to recognize and address implicit biases that contribute to disparities in endometriosis diagnosis and treatment (Orlando et al., 2022). In parallel, research should prioritize the development of non-invasive diagnostic methods to reduce reliance on laparoscopic surgery for confirmation (Tian et al., 2020). Equally important, trials must also strive for greater inclusivity, ensuring that treatments and diagnostic criteria reflect the experiences of diverse populations (Bougie et al., 2019). To support these efforts, policymakers should advocate for expanded healthcare coverage that includes endometriosis-related treatments, such as fertility treatments and specialized pain management, to alleviate financial burdens (Cox et al., 2022). By integrating these strategies—enhancing cultural competency, advancing research, and removing financial barriers—the healthcare system can take meaningful steps toward ensuring equitable access to endometriosis care.
Equity in endometriosis care requires more than policy change– it also demands a fundamental shift toward patient-centered, culturally competent healthcare. Healthcare systems must integrate community-based outreach programs that educate women about endometriosis symptoms and available treatment options. These initiatives should prioritize underserved communities, ensuring that educational materials are accessible and tailored to diverse linguistic and cultural backgrounds. Additionally, ensuring that our system provides for the education/training of healthcare providers from diverse racial and ethnic backgrounds may help foster trust and improve patient-provider communication. Creating safe spaces for women to discuss their symptoms without fear of dismissal or bias is essential for improving health outcomes and ensuring all women receive the care they need.
Despite affecting millions of women, endometriosis remains underfunded in medical research and overlooked in healthcare policy. This systemic neglect exacerbates health disparities, delaying advancements in diagnostic tools and effective treatments. Addressing these inequities will not only improve patient outcomes but also reduce the long-term burden of this condition on marginalized communities. Through systemic changes in healthcare education, policy, and clinical practice, we can move toward a more inclusive and effective approach to diagnosing and treating endometriosis, ensuring that endometriosis care is no longer a privilege but a fundamental right for all.
References:
- Bougie, O., Nwosu, I., & Warshafsky, C. (2022, March 17). Revisiting the impact of Race/ethnicity in endometriosis. Reproduction & fertility. Retrieved April 25, 2023, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066945/
- Bougie, O., Yap, M. I., Sikora, L., Flaxman, T., & Singh, S. (2019, April 29). Influence of race/ethnicity on prevalence and presentation of endometriosis: A systematic review and meta-analysis. BJOG: an international journal of obstetrics and gynecology. https://pubmed.ncbi.nlm.nih.gov/30908874/
- Bulun, S. E., Yilmaz, B. D., Sison, C., Miyazaki, K., Bernardi, L., Liu, S., Kohlmeier, A., Yin, P., Milad, M., & Wei, J. (2019). Endometriosis. Endocrine reviews, 40(4), 1048–1079. https://doi.org/10.1210/er.2018-00242
- Center for Community Health Partnership & Research. (2022, December 12). Health inequities in endometriosis care. Institute for Public Health: Center for Community Health Partnership & Research. https://publichealth.wustl.edu/health-inequities-in-endometriosis-care/
- Cox, C., Dingel, H., & Rae, M. (2022, July 13). Health costs associated with pregnancy, childbirth, and postpartum care. Peterson-KFF Health System Tracker. https://www.healthsystemtracker.org/brief/health-costs-associated-with-pregnancy-childbirth-and-postpartumcare/#Average%20additional%20health%20spending%20associated%20with%20pregnancy,%20relative%20to%20women%20of%20the%20same%20age%20who%20do%20not%20gi
- Dun, E. C., Taylor, R. N., & Wieser, F. (2010, October 14). Advances in the genetics of endometriosis – genome medicine. BioMed Central. https://doi.org/10.1186/gm196
- Ellis, K., Munro, D., & Clarke, J. (2022, April 19). Endometriosis is undervalued: A call to action. Frontiers. https://www.frontiersin.org/articles/10.3389/fgwh.2022.902371/full#:~:text=Compared%20to%20short%20delays%20of,than%20control%20populations%20(25).
- Montgomery, G. W., Mortlock, S., & Giudice, L. C. (2020, February). Should genetics now be considered the pre-eminent etiologic factor in endometriosis?. Journal of minimally invasive gynecology. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7863762/
- Orlando, M. S., Luna Russo, M. A., Richards, E. G., King, C. R., Park, A. J., Bradley, L. D., & Chapman, G. C. (2022, June). Racial and ethnic disparities in surgical care for endometriosis across the United States. American Journal of Obstetrics and Gynecology. https://pubmed.ncbi.nlm.nih.gov/35101410/
- Parasar, P., Ozcan, P., & Terry, K. L. (2017, March). Endometriosis: Epidemiology, diagnosis, and clinical management. Current obstetrics and gynecology reports. Retrieved April 25, 2023, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737931/
- Smolarz, B., Szyłło, K., & Romanowicz, H. (2021, September 29). Endometriosis: Epidemiology, classification, pathogenesis, treatment and Genetics (Review of Literature). International journal of molecular sciences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8508982/
- Tian, Z., Chang, X.-H., Zhao, Y., & Zhu, H.-L. (2020, October 5). Current biomarkers for the detection of endometriosis. Chinese medical journal. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7546884/
About the Authors
Rhea Manohar, MS2
Rhea Manohar is a second year medical student from St. George’s University. She has a Masters in Public Health with a concentration in Maternal and Child Health from George Washington University Milken Institute of Public Health and a Bachelors of Science in Microbiology, Immunology, and Public Health from the University of Miami. She served as Co-VP of OB/GYN Education for St. George’s University’s Women in Medicine chapter in St. George, Grenada where she developed and implemented hands-on workshops to further reproductive health issues and bolstered medical students’ abilities to navigate physician-patient communication. Prior to medical school, she was a research associate for Fors Marsh Group, where she led qualitative and quantitative public health research and campaign development for federal agencies (e.g., CDC, NIH, DHHS, CPSC). She is also a member of the Gender Equity Task Force and Reproductive Health Coalition within the American Medical Women’s Association. When she is not pursuing medicine, you can find her reading, exploring artistic passions, and spending time connecting with friends and family.
Meghan Etsey, MS3
Meghan is a third year medical student from St. George’s University. She has a Bachelors of Arts in Biology and a Bachelors of Arts in Nutrition and Dietetics from Bluffton University in Bluffton, Ohio. She served as the President of the St. George’s University’s Women in Medicine chapter in St. George, Grenada where she expanded relationships with the community and worked towards educating women and helping the youth. She is also a member of the Gender Equity Task Force and Sex and Gender Health Collaborative Committees within the American Medical Women’s Association. When she is not pursuing medicine, you can find her with her friends and family on different road trips and adventures exploring the world.
Ariela Marshall, MD
Dr. Ariela Marshall is a Harvard-trained physician and an internationally renowned advocate, career development advisor, and mentor. Dr. Marshall specializes in bleeding and clotting disorders, especially as they relate to women’s health. She has worked at Mayo Clinic and the University of Pennsylvania and currently practices part-time as a consultative hematologist at the University of Minnesota. In addition to her clinical work, Dr. Marshall is a highly respected leader, mentor, and speaker. She is an active leader with the American Society of Hematology (where she led efforts to found the Women in Hematology Working Group and currently holds seats on the Women in Heme Working Group, Committee on Communications and Media Experts Subcommittee) and American Medical Women’s Association (leading the Infertility Working Group and holding seats on the Gender Equity Task Force). She is the Chief Innovation Officer at Women in Medicine and the Curriculum Chair at IGNITEMed, which are both 501(c)(3) nonprofit organizations dedicated to promoting career development for women in medicine. She speaks regularly on a national and international scope to discuss her efforts to advance career development and mentorship for physicians, gender equity, fertility/infertility awareness, parental health and wellbeing, reproductive health and rights, and work-life integration.