Medical Mistrust and the Future Prevention of Endometriosis

Barnes, S. B. (2024). Closing the Women’s Health Gap Report: Much Needed Recognition for Endometriosis and Menopause. New Security Beat, www.newsecuritybeat.org/2024/02/closing-the-womens-health-gap-report-much-needed-recognition-for-endometriosis-and-menopause/ Boakye PN, Prendergast N, Bailey A, et al. Anti-Black Medical Gaslighting in Healthcare: Experiences of Black Women in Canada. Canadian Journal of Nursing Research. 2025;57(1):59-68. doi:10.1177/08445621241247865 Bontempo, A. C., & Schiff, G. D. (2025). Diagnosing diagnostic error of endometriosis: a secondary analysis of patient experiences from a mixed-

survey. BMJ open quality, 14(1), e003121. https://doi.org/10.1136/bmjoq-2024-003121 Cleary, M. (2025). Insurance 101: A Guide on How to Get Your Surgery Covered. Endometriosis : Causes - Symptoms - Diagnosis - and Treatment. www.endofound.org/insurance-101-a-guide-on-how-to-get-your-surgery- covered#:~:text=Endometriosis%20patients%20get%20caught%20in,Standard%20of%20care%E2%80%9D%20protects%20doctors Distribution of People Ages 0-64 with Medicaid by Race/Ethnicity: KFF State Health Facts. (2025). KFF. www.kff.org/medicaid/state- indicator/medicaid-distribution-people-0-64-by- raceethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22%3A%22Location%22%2C%22sort%22%3A%22asc%22%7D eClinicalMedicine (2024). Gendered pain: a call for recognition and health equity.EClinicalMedicine, 69, 102558. https://doi.org/10.1016/j.eclinm.2024.102558 Endometriosis Foundation of America. (2026). Why January 25th Matters: Women’s Health Research Day and the Fight for Endometriosis Funding. Endometriosis: Causes - Symptoms - Diagnosis - and Treatment. www.endofound.org/why-january-25th-matters-womens-health-research-day-and- the-fight-for-endometriosis- funding#:~:text=Crohn’s%20disease%2C%20which%20affects%20about,that%20endometriosis%20is%20severely%20underfunded. Endometriosis Specialists Map. (n.d) Endometriosis Specialists Map | TheYellowHub.Org. www.theyellowhub.org/map. Fourquet, J., Zavala, D. E., Missmer, S., Bracero, N., Romaguera, J., & Flores, I. (2019). Disparities in healthcare services in women with endometriosis with public vs private health insurance.American journal of obstetrics and gynecology, 221(6), 623.e1–623.e11. https://doi.org/10.1016/j.ajog.2019.06.020 Fricker, Miranda, Epistemic Injustice: Power and the Ethics of Knowing (Oxford, 2007; online edn, Oxford Academic, 1 Sept. 2007), https://doi.org/10.1093/acprof:oso/9780198237907.001.0001 Frincu, F., Carp-Veliscu, A., Petca, A., Badiu, D. C., Bratila, E., Cirstoiu, M., & Mehedintu, C. (2021). Maternal-Fetal Outcomes in Women with Endometriosis and Shared Pathogenic Mechanisms. Medicina (Kaunas, Lithuania), 57(11), 1258. https://doi.org/10.3390/medicina57111258 History of Women’s Participation in Clinical Research. (2024). National Institutes of Health. https://orwh.od.nih.gov/toolkit/recruitment/history 12 Iglesia, C. B. (2025). When Insurance Policies Harm Women. SHE+. https://www.sheplusfoundation.com/post/when-insurance-policies-harm- women#:~:text=According%20to%20the%20Endometriosis%20Foundation%20of%20America%2C,operate%20out%2Dof%2Dnetwork%20due%20to%20poor%20re imbursement%20rates Jones, G. L., Budds, K., Taylor, F., Musson, D., Raymer, J., Churchman, D., Kennedy, S. H., & Jenkinson, C. (2024). A systematic review to determine use of the Endometriosis Health Profiles to measure quality of life outcomes in women with endometriosis.Human reproduction update, 30(2), 186–214. https://doi.org/10.1093/humupd/dmad029 Kemble, E., Pérez, L., Sartori, V. (2022). The Dawn of the Femtech Revolution. McKinsey & Company, www.mckinsey.com/industries/healthcare/our-insights/the- dawn-of-the-femtech-revolution Kirk, U.B., Bank-Mikkelsen, A.S., Rytter, D. et al. Understanding endometriosis underfunding and its detrimental impact on awareness and research. npj Womens Health 2, 45 (2024). https://doi.org/10.1038/s44294-024-00048-6 Kiser, A. C., Hemmert, R., Myrer, R., Bucher, B. T., Eilbeck, K., Varner, M., Stanford, J. B., Peterson, C. M., Pollack, A. Z., Farland, L. V., & Schliep, K. C. (2025). Validation of administrative health data for the identification of endometriosis diagnosis.Human reproduction (Oxford, England), 40(2), 289–295. https://doi.org/10.1093/humrep/deae281 Li, W., Feng, H., & Ye, Q. (2025). Factors contributing to the delayed diagnosis of endometriosis-a systematic review and meta-analysis. Frontiers in medicine, 12, 1576490. https://doi.org/10.3389/fmed.2025.1576490 Manu, A., Poenaru, E., Duica, F., Bausic, A. I. G., Coroleuca, B. C., Coroleuca, C. A., Iacob, C., Rosca, I., & Bratila, E. (2025). Quality of Life Assessment and Clinical Implications for Women with Endometriosis Through Validated Tools: A Narrative Review.Medicina (Kaunas, Lithuania), 61(10), 1729. https://doi.org/10.3390/medicina61101729 Mirin A. A. (2021). Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Journal of women's health (2002), 30(7), 956–963. https://doi.org/10.1089/jwh.2020.8682 Mosbrucker, C. (2022) Out-of Network Rationale - Pacific Endometriosis & Pelvic Surgery. Pacific Endometriosis & Pelvic Surgery. https://pacificendometriosis.com/out-of-network-rationale- 2/#:~:text=Every%20procedure%20done%20%E2%80%9Copen%E2%80%9D%20through,for%20our%20patients%20with%20endometriosis Nash, A. (2025). Women’s Pain Management across Their Lifespan. Stanford Pain News. https://painnews.stanford.edu/news/womens-pain-management-across-their- lifespan#:~:text=How%20Culture%20and%20Medicine%20Shape,providing%20appropriate%20and%20compassionate%20care Piriyev, E., Schiermeier, S., & Römer, T. (2025). Hormonal Treatment of Endometriosis: A Narrative Review.Pharmaceuticals (Basel, Switzerland), 18(4), 588. https://doi.org/10.3390/ph18040588 Shukla, M., Schilt-Solberg, M., & Gibson-Scipio, W. (2025). Medical Mistrust: A Concept Analysis. Nursing reports (Pavia, Italy), 15(3), 103. https://doi.org/10.3390/nursrep15030103 Sirohi, D., Freedman, S., Freedman, L., Carrigan, G., Hey-Cunningham, A. J., Hull, M. L., & O'Hara, R. (2023). Patient experiences of being advised by a healthcare professional to get pregnant to manage or treat endometriosis: a cross-sectional study. BMC women's health, 23(1), 638. https://doi.org/10.1186/s12905-023-02794-2 Su-Yen Khong, Alan Lam, Georgina Luscombe, Is the 30-item Endometriosis Health Profile (EHP-30) suitable as a self-report health status instrument for clinical trials?, Fertility and Sterility, Volume 94, Issue 5, 2010, Pages 1928-1932, ISSN 0015-0282, https://doi.org/10.1016/j.fertnstert.2010.01.047. Tasca, C., Rapetti, M., Carta, M. G., & Fadda, B. (2012). Women and hysteria in the history of mental health. Clinical practice and epidemiology in mental health : CP & EMH, 8, 110–119. https://doi.org/10.2174/1745017901208010110 SHIFT THE BURDEN OF PROOF FROM THE PATIENT TO THE SYSTEM THANK YOU 13