{"paper_id":"5302f3eb-506f-43fb-95f2-674bf4d5f894","body_text":"THE INVISIBLE BURDEN OF ENDOMETRIOSIS: A REVIEW OF DIAGNOSTIC, TREATMENT, AND HEALTH POLICY CHALLENGES\nDOI:\nhttps://doi.org/10.31435/ijitss.2(50).2026.5494Keywords:\nEndometriosis, Dysmenorrhea, Quality of Life, Diagnostic Delay, Healthcare DisparitiesAbstract\nBackground: Endometriosis is a chronic, estrogen-dependent inflammatory disease affecting approximately 6-13% of women worldwide, with estimates exceeding 100 million individuals. It presents with heterogeneous symptoms, including chronic pelvic pain, dysmenorrhea, dyspareunia, and infertility, significantly impairing quality of life. Despite its prevalence, endometriosis remains under-recognized and often inadequately addressed at clinical and policy levels.\nObjective: This review aims to examine the multifaceted burden of endometriosis, including its epidemiology, impact on quality of life and productivity, diagnostic delays, treatment limitations, and health system and policy barriers.\nMethods: A narrative review of the literature was conducted using major databases, including PubMed, Scopus, and Web of Science. Recent systematic reviews, meta-analyses, observational studies, and policy reports were analyzed to identify key themes and evidence gaps.\nResults: Endometriosis is associated with substantial physical, psychological, and economic burden, including reduced work productivity and high healthcare costs. Diagnostic delay remains a major challenge due to factors at the patient, provider, and system levels. Current treatments are often limited in effectiveness and accessibility, with high recurrence rates. Fragmented healthcare systems, insufficient specialist training, and a lack of national policies further exacerbate inequalities in care.\nConclusions: Endometriosis represents a significant yet often invisible public health issue. Addressing its burden requires integrated care models, improved diagnostic strategies, increased research funding, and comprehensive policy action.\nReferences\nAdamson, G. D., Kennedy, S., & Hummelshoj, L. (2010). Creating solutions in endometriosis: Global collaboration through the World Endometriosis Research Foundation. Journal of Endometriosis, 2(1), 3–6. https://doi.org/10.1177/228402651000200102\nAs-Sanie, S., Mackenzie, S. C., Morrison, L., Schrepf, A., Zondervan, K. T., Horne, A. W., & Missmer, S. A. (2025). Endometriosis: A review. JAMA, 334(1), 64. https://doi.org/10.1001/jama.2025.2975\nBallweg, M. L. (2004). Impact of endometriosis on women’s health: Comparative historical data show that the earlier the onset, the more severe the disease. Best Practice & Research Clinical Obstetrics & Gynaecology, 18(2), 201–218. https://doi.org/10.1016/j.bpobgyn.2004.01.003\nEllis, K., Munro, D., & Wood, R. (2022). The experiences of endometriosis patients with diagnosis and treatment in New Zealand. Frontiers in Global Women’s Health, 3, Article 991045. https://doi.org/10.3389/fgwh.2022.991045\nEllis, K., Munro, D., & Wood, R. (2023). Dismissal informs the priorities of endometriosis patients in New Zealand. Frontiers in Medicine, 10, Article 1185769. https://doi.org/10.3389/fmed.2023.1185769\nEvans, D., Gibbons, T., Skidmore, B., Zondervan, K. T., Adamson, G. D., Giudice, L. C., Missmer, S. A., Abbott, J., Abrao, M., Becker, C., Bush, D., Canis, M., Cox, E., Dyer, S., Farquhar, C., Flores, I., Gajbhiye, R., Guo, S., Gupta, J., … Zhang, J. (2025). Availability of region-specific endometriosis care guidance: A global scoping review. The Lancet Obstetrics, Gynaecology, & Women’s Health, 1(3), e219–e231. https://doi.org/10.1016/j.lanogw.2025.100004\nGibbons, T., Evans, D., Skidmore, B., Becker, C. M., Missmer, S. A., Giudice, L. C., Adamson, G. D., Zondervan, K. T., Abbott, J., Abrao, M., Bush, D., Canis, M., Cox, E., Dyer, S., Farquhar, C., Flores, I., Gajbhiye, R., Guo, S., Gupta, J., … Zhang, J. (2025). Endometriosis policy and delivery systems: A comprehensive global scoping review. The Lancet Obstetrics, Gynaecology, & Women’s Health, 1(3), e232–e244. https://doi.org/10.1016/j.lanogw.2025.100027\nHudson, Q. J., Perricos, A., Wenzl, R., & Yotova, I. (2020). Challenges in uncovering non-invasive biomarkers of endometriosis. Experimental Biology and Medicine, 245(5), 437–447. https://doi.org/10.1177/1535370220903270\nKaravadra, B., Thorpe, G., Morris, E., & Semlyen, J. (2025). Exploring delay to diagnosis of endometriosis, a healthcare professional perspective. BMC Health Services Research, 25(1), Article 1483. https://doi.org/10.1186/s12913-025-13536-5\nKirk, U. B., Bank-Mikkelsen, A. S., Rytter, D., Hartwell, D., Marschall, H., Nyegaard, M., Seyer-Hansen, M., & Hansen, K. E. (2024). Understanding endometriosis underfunding and its detrimental impact on awareness and research. NPJ Women’s Health, 2(1), Article 45. https://doi.org/10.1038/s44294-024-00048-6\nMartínez-Zamora, M. A., Feixas, G., Palou, E., Flo, E., Mallorquí, A., Gracia, M., Gresle, A.-S., Escarrabill, J., & Carmona, F. (2025). Unmet needs of endometriosis patients with respect to health care services: A qualitative study using a patient training workshop. Journal of Clinical Medicine, 14(10), Article 3504. https://doi.org/10.3390/jcm14103504\nMburu, G., Kiarie, J., & Allotey, P. (2025). Advancing policies, guidelines, and service delivery for endometriosis: Call to action. The Lancet Obstetrics, Gynaecology, & Women’s Health, 1(3), e153–e155. https://doi.org/10.1016/j.lanogw.2025.09.010\nMick, I., Freger, S. M., Van Keizerswaard, J., Gholiof, M., & Leonardi, M. (2024). Comprehensive endometriosis care: A modern multimodal approach for the treatment of pelvic pain and endometriosis. Therapeutic Advances in Reproductive Health, 18, Article 26334941241277759. https://doi.org/10.1177/26334941241277759\nMoradi, Y., Shams-Beyranvand, M., Khateri, S., Gharahjeh, S., Tehrani, S., Varse, F., Tiyuri, A., & Najmi, Z. (2021). A systematic review on the prevalence of endometriosis in women. Indian Journal of Medical Research, 154(3), 446–454. https://doi.org/10.4103/ijmr.IJMR_817_18\nNnoaham, K. E., Hummelshoj, L., Webster, P., d’Hooghe, T., De Cicco Nardone, F., De Cicco Nardone, C., Jenkinson, C., Kennedy, S. H., & Zondervan, K. T. (2011). Impact of endometriosis on quality of life and work productivity: A multicenter study across ten countries. Fertility and Sterility, 96(2), 366–373.e8. https://doi.org/10.1016/j.fertnstert.2011.05.090\nRahmioglu, N., & Zondervan, K. (2024). Endometriosis: Disease mechanisms and health disparities. Bulletin of the World Health Organization, 102(12), 919–921. https://doi.org/10.2471/BLT.24.292660\nRogers, P. A. W., D’Hooghe, T. M., Fazleabas, A., Gargett, C. E., Giudice, L. C., Montgomery, G. W., Rombauts, L., Salamonsen, L. A., & Zondervan, K. T. (2009). Priorities for endometriosis research: Recommendations from an international consensus workshop. Reproductive Sciences, 16(4), 335–346. https://doi.org/10.1177/1933719108330568\nSarria-Santamera, A., Orazumbekova, B., Terzic, M., Issanov, A., Chaowen, C., & Asúnsolo-del-Barco, A. (2020). Systematic review and meta-analysis of incidence and prevalence of endometriosis. Healthcare, 9(1), Article 29. https://doi.org/10.3390/healthcare9010029\nSoliman, A. M., Surrey, E., Bonafede, M., Nelson, J. K., & Castelli-Haley, J. (2018). Real-world evaluation of direct and indirect economic burden among endometriosis patients in the United States. Advances in Therapy, 35(3), 408–423. https://doi.org/10.1007/s12325-018-0667-3\nSoliman, A. M., Yang, H., Du, E. X., Kelley, C., & Winkel, C. (2016). The direct and indirect costs associated with endometriosis: A systematic literature review. Human Reproduction, 31(4), 712–722. https://doi.org/10.1093/humrep/dev335\nSzymańska, J., & Dąbrowska-Galas, M. (2021). An assessment of Polish women’s level of knowledge about endometriosis: A pilot study. BMC Women’s Health, 21(1), Article 404. https://doi.org/10.1186/s12905-021-01556-2\nSzypłowska, M., Tarkowski, R., & Kułak, K. (2023). The impact of endometriosis on depressive and anxiety symptoms and quality of life: A systematic review. Frontiers in Public Health, 11, Article 1230303. https://doi.org/10.3389/fpubh.2023.1230303\nWang, M.-H., Chen, J.-H., Qi, X.-Y., Li, Z.-X., & Huang, Y. (2025). Global prevalence of adenomyosis and endometriosis: A systematic review and meta-analysis. Reproductive Biology and Endocrinology, 23(1), Article 148. https://doi.org/10.1186/s12958-025-01483-z\nWorld Health Organization. (2025). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis\nDownloads\nPublished\nIssue\nSection\nLicense\nCopyright (c) 2026 Bartosz Janik, Kornelia Domagała, Małgorzata Ziółek, Magdalena Maroszek, Kamil Szymczak, Ariadna Bakier, Albert Wiatr, Agata Olecka, Filip Gałązka, Jakub Cegielski, Nikodem Mozgała, Jakub Ślęzak\nThis work is licensed under a Creative Commons Attribution 4.0 International License.\nAll articles are published in open-access and licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). Hence, authors retain copyright to the content of the articles.\nCC BY 4.0 License allows content to be copied, adapted, displayed, distributed, re-published or otherwise re-used for any purpose including for adaptation and commercial use provided the content is attributed.","source_license":"CC0","license_restricted":false}