{"paper_id":"ef9b9999-b958-4483-a9c9-b7a814887105","body_text":"MEDICAL MISTRUST \nAND THE FUTURE \nPREVENTION OF \nENDOMETRIOSIS\n1\nKyra Madson\n\nWHAT IS \nENDOMETRIOSIS? \nDEBILITATING PELVIC PAIN\nCHRONIC FATIGUE\nINFERTILITY\nDYSMENORRHEA\nDYSPAREUNIA\n2\n\n\nWHAT CAUSES  THE 7-10 YEAR DELAY?\n• Normalization of menstrual pain\n• Fiscal neglect\n• Medical gaslighting\n3\n\nWHAT IS MEDICAL \nGASLIGHTING?\nWHEN PROVIDERS DISMISS, MINIMIZE, \nOR DOUBT A PATIENT'S SYMPTOMS, \nCAUSING THE PATIENT TO QUESTION \nTHEIR OWN REALITY\n4\n\n\nINTERSECTIONALITY: \nRACE & GENDER BIAS\n5\n\n\nHISTORICAL\nCONTEXT\n6\n\n\nMEDICAL MISTRUST & \nCLINICAL AVOIDANCE\n7\n\n\nGENDER FUNDING GAP 8\n\n\nTREATMENT LANDSCAPE\nTreatment type Mechanism Long term implication\nHormonal therapy Induces \nhypoestrogenism \nHigh recurrence; impacts \nquality of life\nAblation surgery Surface destruction \nof lesions\nLeaves disease roots \nintact; higher recurrence\nExcision surgery Meticulous removal Gold standard; requires \nrare specialist expertise\nPregnancy advice Temporary \nsuppression\nReproductive gaslighting; \nhigh obstetric risk\n9\n\nMETHODOLOGY\nMandatory implementation of the \nEndometriosis Health Profile-30 at the \nfirst mention of pelvic pain\nBenefits include \n• restored agency \n• faster specialist referrals\n• validation in 56 languages\n10\nEHP-30 Example Questions\n\nFUTURE INITIATIVES\n• Non-invasive diagnostic markers \n• Curricula updates and increased endometriosis education\n• Equitable implementation of EHP-30\nhttps://innovation.ox.ac.uk/wp-\ncontent/uploads/2014/09/Final_EHP-\n30_English_UK_SAMPLE.pdf\n11\n\nREFERENCES\nBarnes, S. B. (2024). Closing the Women’s Health Gap Report: Much Needed Recognition for Endometriosis and Menopause. New Security Beat, \nwww.newsecuritybeat.org/2024/02/closing-the-womens-health-gap-report-much-needed-recognition-for-endometriosis-and-menopause/\nBoakye PN, Prendergast N, Bailey A, et al. Anti-Black Medical Gaslighting in Healthcare: Experiences of Black Women in Canada. Canadian Journal \nof Nursing Research. 2025;57(1):59-68. doi:10.1177/08445621241247865\nBontempo, A. C., & Schiff, G. D. (2025). Diagnosing diagnostic error of endometriosis: a secondary analysis of patient experiences from a mixed-\nmethods survey. BMJ open quality, 14(1), e003121. https://doi.org/10.1136/bmjoq-2024-003121\nCleary, M. (2025). Insurance 101: A Guide on How to Get Your Surgery Covered. Endometriosis : Causes - Symptoms - Diagnosis - and Treatment. \nwww.endofound.org/insurance-101-a-guide-on-how-to-get-your-surgery-\ncovered#:~:text=Endometriosis%20patients%20get%20caught%20in,Standard%20of%20care%E2%80%9D%20protects%20doctors\nDistribution of People Ages 0-64 with Medicaid by Race/Ethnicity: KFF State Health Facts. (2025). KFF. www.kff.org/medicaid/state-\nindicator/medicaid-distribution-people-0-64-by-\nraceethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22%3A%22Location%22%2C%22sort%22%3A%22asc%22%7D\neClinicalMedicine (2024). Gendered pain: a call for recognition and health equity.EClinicalMedicine, 69, 102558. \nhttps://doi.org/10.1016/j.eclinm.2024.102558\nEndometriosis Foundation of America. (2026). Why January 25th Matters: Women’s Health Research Day and the Fight for Endometriosis Funding. \nEndometriosis: Causes - Symptoms - Diagnosis - and Treatment. www.endofound.org/why-january-25th-matters-womens-health-research-day-and-\nthe-fight-for-endometriosis-\nfunding#:~:text=Crohn’s%20disease%2C%20which%20affects%20about,that%20endometriosis%20is%20severely%20underfunded.\nEndometriosis Specialists Map. (n.d) Endometriosis Specialists Map | TheYellowHub.Org. www.theyellowhub.org/map.\nFourquet, J., Zavala, D. E., Missmer, S., Bracero, N., Romaguera, J., & Flores, I. (2019). Disparities in healthcare services in women with \nendometriosis with public vs private health insurance.American journal of obstetrics and gynecology, 221(6), 623.e1–623.e11. \nhttps://doi.org/10.1016/j.ajog.2019.06.020\nFricker, Miranda, Epistemic Injustice: Power and the Ethics of Knowing (Oxford, 2007; online edn, Oxford Academic, 1 Sept. \n2007), https://doi.org/10.1093/acprof:oso/9780198237907.001.0001\nFrincu, F., Carp-Veliscu, A., Petca, A., Badiu, D. C., Bratila, E., Cirstoiu, M., & Mehedintu, C. (2021). Maternal-Fetal Outcomes in Women with \nEndometriosis and Shared Pathogenic Mechanisms. Medicina (Kaunas, Lithuania), 57(11), 1258. https://doi.org/10.3390/medicina57111258\nHistory of Women’s Participation in Clinical Research. (2024). National Institutes of Health. https://orwh.od.nih.gov/toolkit/recruitment/history\n12\nIglesia, C. B. (2025). When Insurance Policies Harm Women. SHE+. https://www.sheplusfoundation.com/post/when-insurance-policies-harm-\nwomen#:~:text=According%20to%20the%20Endometriosis%20Foundation%20of%20America%2C,operate%20out%2Dof%2Dnetwork%20due%20to%20poor%20re\nimbursement%20rates\nJones, 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 \nEndometriosis Health Profiles to measure quality of life outcomes in women with endometriosis.Human reproduction update, 30(2), 186–214. \nhttps://doi.org/10.1093/humupd/dmad029\nKemble, E., Pérez, L., Sartori, V. (2022). The Dawn of the Femtech Revolution. McKinsey & Company, www.mckinsey.com/industries/healthcare/our-insights/the-\ndawn-of-the-femtech-revolution\nKirk, U.B., Bank-Mikkelsen, A.S., Rytter, D. et al. Understanding endometriosis underfunding and its detrimental impact on awareness and research. npj Womens \nHealth 2, 45 (2024). https://doi.org/10.1038/s44294-024-00048-6\nKiser, 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). \nValidation of administrative health data for the identification of endometriosis diagnosis.Human reproduction (Oxford, England), 40(2), 289–295. \nhttps://doi.org/10.1093/humrep/deae281\nLi, W., Feng, H., & Ye, Q. (2025). Factors contributing to the delayed diagnosis of endometriosis-a systematic review and meta-analysis. Frontiers in medicine, 12, \n1576490. https://doi.org/10.3389/fmed.2025.1576490\nManu, 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 \nClinical Implications for Women with Endometriosis Through Validated Tools: A Narrative Review.Medicina (Kaunas, Lithuania), 61(10), 1729. \nhttps://doi.org/10.3390/medicina61101729\nMirin 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. \nhttps://doi.org/10.1089/jwh.2020.8682\nMosbrucker, C. (2022) Out-of Network Rationale - Pacific Endometriosis & Pelvic Surgery. Pacific Endometriosis & Pelvic Surgery. \nhttps://pacificendometriosis.com/out-of-network-rationale-\n2/#:~:text=Every%20procedure%20done%20%E2%80%9Copen%E2%80%9D%20through,for%20our%20patients%20with%20endometriosis\nNash, A. (2025). Women’s Pain Management across Their Lifespan. Stanford Pain News. https://painnews.stanford.edu/news/womens-pain-management-across-their-\nlifespan#:~:text=How%20Culture%20and%20Medicine%20Shape,providing%20appropriate%20and%20compassionate%20care\nPiriyev, E., Schiermeier, S., & Römer, T. (2025). Hormonal Treatment of Endometriosis: A Narrative Review.Pharmaceuticals (Basel, Switzerland), 18(4), 588. \nhttps://doi.org/10.3390/ph18040588\nShukla, M., Schilt-Solberg, M., & Gibson-Scipio, W. (2025). Medical Mistrust: A Concept Analysis. Nursing reports (Pavia, Italy), 15(3), 103. \nhttps://doi.org/10.3390/nursrep15030103\nSirohi, 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 \nprofessional 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\nSu-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 \ntrials?, Fertility and Sterility, Volume 94, Issue 5, 2010, Pages 1928-1932, ISSN 0015-0282, https://doi.org/10.1016/j.fertnstert.2010.01.047.\nTasca, 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 \n& EMH, 8, 110–119. https://doi.org/10.2174/1745017901208010110\n\nSHIFT THE BURDEN \nOF PROOF FROM \nTHE PATIENT TO \nTHE SYSTEM\nTHANK YOU\n13","source_license":"CC0","license_restricted":false}