{"paper_id":"4be63f0a-55a3-4f21-93e2-8c02ec8ef1f3","body_text":"Women & Health\nISSN: 0363-0242 (Print) 1541-0331 (Online) Journal homepage: www.tandfonline.com/journals/wwah20\nVoices of women with endometriosis in Latin\nAmerica: tales of invalidation, high costs, and\ndiagnostic delays\nIdhaliz Flores-Caldera, Ana C. Lou-Mercadé, Yeidelin Nieves, Maria F.\nMartinez & Jennifer Mier-Cabrera\nTo cite this article: Idhaliz Flores-Caldera, Ana C. Lou-Mercadé, Yeidelin Nieves, Maria F.\nMartinez & Jennifer Mier-Cabrera (2025) Voices of women with endometriosis in Latin America:\ntales of invalidation, high costs, and diagnostic delays, Women & Health, 65:3, 224-226, DOI:\n10.1080/03630242.2025.2469939\nTo link to this article:  https://doi.org/10.1080/03630242.2025.2469939\nPublished online: 10 Mar 2025.\nSubmit your article to this journal \nArticle views: 1695\nView related articles \nView Crossmark data\nFull Terms & Conditions of access and use can be found at\nhttps://www.tandfonline.com/action/journalInformation?journalCode=wwah20\n\nEDITORIAL\nVoices of women with endometriosis in Latin America: tales of \ninvalidation, high costs, and diagnostic delays\nEndometriosis is a chronic inflammatory condition that significantly affects the quality of life for \nmillions of women worldwide (Missmer et al. 2021 ). Despite its high prevalence, there is a concerning \nlack of information regarding the experiences of patients with endometriosis from low- and middle- \nincome countries (LMIC) around the globe, including those in Spanish-speaking countries of Latin \nAmerica (LATAM) (Deng et al. 2023 ; Giudice, Horne, and Missmer 2023 ). This gap in data hinders \nour understanding of the universality of endometriosis symptoms and whether women in this region \nface challenges in accessing quality care (Flores-Caldera et al. 2021 ). This knowledge is important to \ninform public health initiatives in the region to ensure equity in endometriosis care and overall \nwomen’s health.\nTo help fill this gap and address disparities in endometriosis research and care, we have recently \nconducted a cross-sectional study to determine the clinical profile of endometriosis in Spanish- \nspeaking countries in LATAM and Spain (Flores-Caldera et al. 2021 ). After translating and validating \nthe Endometriosis Phenome Project Clinical Minimal Questionnaire (Vitonis et al. 2014 ) into Spanish, \nwe collaborated with regional patient support organizations to reach out to their members using social \nmedia. An online questionnaire completed by 1,378 participants from twenty-three countries (95 per -\ncent of whom self-reported endometriosis) revealed a mean diagnostic delay of 7 years. Common \nsymptoms included back/leg pain (85 percent) and fatigue (81 percent). Additionally, 97 percent of \nparticipants reported dysmenorrhea, 79 percent experienced severe pain, and 86 percent reported \ndyspareunia. They also reported migraines, polycystic ovarian syndrome, and irritable bowel syn -\ndrome as common comorbidities. The most used treatment was oral contraceptives (47 percent). This \nstudy provided the first clinical and demographic profile of patients with endometriosis in LATAM, \nhighlighting high rates of severe symptomatology and substantial diagnostic delays. Understanding \nthe state of endometriosis care in LATAM is essential to identify the factors contributing to poor \nhealth outcomes for women in the region.\nThis lack of data led our team to conduct a follow-up assessment of health services, support, and \neducational resources available for the medical care of endometriosis patients in LATAM/Spain (Lou- \nMercadé et al., under review). We carried out an online anonymous survey in collaboration with \npatient support organizations to evaluate the status of available treatments, specialized care, costs, \nmedical plan coverage, diagnostic delays, and access to multi-disciplinary clinics and patient associa -\ntions. The survey, completed by 1,260 patients from twenty countries, revealed significant deficiencies \nin the quality of care. Notably, 70 percent of respondents reported that there were no multi- \ndisciplinary care centers available in their regions.\nThree open questions in the survey were included to assess the patients’ experiences regarding their \ndiagnostic and therapeutic journey unbiasedly. A qualitative analysis of the responses from 167 \nparticipants (13 percent) was conducted using the NVivo Software. Two team members conducted \nthe initial thematic analysis using a descriptive and interpretative approach to the data, and three \nothers reviewed thematic categories and sub-themes to ensure consistency and validity.\nThe first question asked about participants’ experiences researching endometriosis on the Internet. \nThe most-searched topics included general information about endometriosis and its treatments \n(medications and surgeries). Many were concerned about misinformation regarding endometriosis \ncauses and treatments. Some others follow gynecologists on social media as a source of information \nabout medical treatments. There was no consensus on whether there is sufficient and complete \ninformation available in Spanish:\nWOMEN & HEALTH                                         \n2025, VOL. 65, NO. 3, 224–226 \nhttps://doi.org/10.1080/03630242.2025.2469939\n© 2025 Taylor & Francis Group, LLC \n\n“[There is] a lot of information, it is necessary to know how to filter it.;” “Information is superficial and \nrepetitive.;” “Thanks to the internet I knew how to diagnose myself.”\nThe second question focused on their experiences with endometriosis treatments. Many commented \non the impact of pain, treatment failures, side effects, and surgical procedures they underwent (one \npatient reported nineteen surgeries). The patient journey was described as both costly and \ninvalidating:\n“We need to talk about the costs of surgeries . . . it has been a true sacrifice, over and over again;” ”[The \ntreatments] leave us in a bad financial situation.;” “Doctors take it as if this is normal.;” “We are without an \nanswer, lost in nothingness.”\nFinally, we asked if they had any questions or expectations regarding the study. Many \nexpressed concerns about delayed diagnosis, feelings of invalidation, and gratitude for the \nresearch:\nHopefully with this [study] there is help for women with few economic resources to get treatment and stop \nsuffering every month.\nSeveral urged more research on new treatments and a cure, and for more doctors to specialize in \nendometriosis care. They had high expectations about the study, including the need for improved \neducation for doctors and the necessity to disseminate findings to Departments of Health, policy -\nmakers, and employers. They proposed several recommendations, including:\n“It must be negotiated with the local deputies (legislators) to approve a law that protects us.;” “It is time for all of \nus to stand up in the different countries and make this disease much more visible so that the diagnosis does not \ntake so long and so that gynecologists know about the disease”\nThis qualitative study revealed that endometriosis patients in LATAM face significant barriers to \naccessing quality medical services, resulting in alarmingly long delays in diagnosis and treatment. The \nvoices of patients in the study portray a challenging diagnostic and therapeutic journey, causing \nsubstantial emotional distress and economic burden. One patient expressed:\nI just want to be heard and that more women know about the disease and be treated to reduce the severe pain \ncaused by endometriosis.\nSome studies have suggested that endometriosis is less prevalent in minoritized groups. This raises the \nquestion of whether this discrepancy is due to gaps in access to health care including the availability \nand high costs of laparoscopic diagnosis. Our study supports the idea that the prevalence of endome -\ntriosis may be underestimated in these groups, likely because of limited access to specialized care. It \nalso highlights the importance of creating a more equitable care plan for patients with endometriosis \nin LATAM. Key areas for prioritization include:\n(1) Reducing diagnostic delays by raising awareness of symptoms.\n(2) Educating patients and society to minimize the normalization of pain during menses.\n(3) Developing public policies to enhance access to advanced diagnostics and treatments.\nIn a recent editorial published by The Lancet ( Endometriosis: Addressing the roots of slow progress ), it \nwas emphasized that governments need to develop national action plans to raise awareness and ensure \nthat patients with chronic conditions like endometriosis have timely access to quality care, regardless \nof their socioeconomic status (Lancet 2024 ). More research is necessary to understand the specific \nchallenges faced by patients globally, ensuring that these action plans are tailored to the unique \ncircumstances of each country/region. We advocate for initiatives aimed at increasing the inclusion \nof women of color, of low socioeconomic status, and from LMIC in endometriosis research, including \ngenomic, proteomic, multi-omics, translational, clinical, and behavioral studies, so they can also \nbenefit from advancements in endometriosis diagnosis and treatment.\nWOMEN & HEALTH\n 225\n\nAcknowledgments\nWe are grateful for the contributions of UNIENDO: Ibero-American Endometriosis Association presidents in the \ndissemination of the study surveys: Eva Alva – Mexico; Luz Marina Araque – Colombia; Marcela Arraya – Chile; Jessica \nCalvo-Costa Rica; Gabriela Gutierrez – Venezuela; Yuriko Huarcaya – Peru; Paola Paniagua – Dominican Republic; \nMaria Angeles Poveda – Spain; Viviana Setton – Argentina; Mercedes Valdés – Panama\nReferences\nDeng, S., D. Yang, Q. Li, H. Dai, W. Tang, L. Lu, J. Liu, et al. 2023 . “Bibliometric Analysis of Global Endometriosis \nResearch, 2002 to 2021: A Review.” Medicine 102 (47): e35723. https://doi.org/10.1097/MD.0000000000035723  .\nFlores-Caldera, I., P. M. Ramos-Echevarria, J. A. Oliveras-Torres, N. Santos-Pinero, E. D. Rivera-Mudafort, D. M. Soto- \nSoto, B. Hernández-Colón, et al. 2021 . “Ibero-American Endometriosis Patient Phenome: Demographics, \nObstetric-Gynecologic Traits, and Symptomatology.” Frontiers in Reproductive Health 3:667345. https://doi.org/10. \n3389/frph.2021.667345  .\nGiudice, L. C., A. W. Horne, and S. A. Missmer. 2023 . “Time for Global Health Policy and Research Leaders to Prioritize \nEndometriosis.” Nature Communications 14 (1): 8028. https://doi.org/10.1038/s41467-023-43913-9  .\nLancet, T. 2024 . “Endometriosis: Addressing the Roots of Slow Progress.” Lancet 404 (10460): 1279. https://doi.org/10. \n1016/S0140-6736(24)02179-2  .\nMissmer, S. A., F. F. Tu, S. K. Agarwal, C. Chapron, A. M. Soliman, S. Chiuve, S. Eichner, et al. 2021 . “Impact of \nEndometriosis on Life-Course Potential: A Narrative Review.” International Journal of General Medicine 14:9–25.  \nhttps://doi.org/10.2147/IJGM.S261139  .\nVitonis, A. F., K. Vincent, N. Rahmioglu, A. Fassbender, G. M. Buck Louis, L. Hummelshoj, L. C. Giudice, et al. 2014 . \n“World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project: II. \nClinical and Covariate Phenotype Data Collection in Endometriosis Research.” Fertility and Sterility 102 (5): 1223–32.  \nhttps://doi.org/10.1016/j.fertnstert.2014.07.1244 .\nIdhaliz Flores-Caldera \nDepartment of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico \nEndometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre \nEndometriosis de Hispanoamérica y España- AIEHE) \niflores@psm.edu  \nAna C. Lou-Mercadé \nEndometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre \nEndometriosis de Hispanoamérica y España- AIEHE) \nAragon Health Research Institute (IIS Aragon), Obstetrics and Gynaecology Department, Hospital \nClínico Universitario Lozano Blesa, Zaragoza, Spain\nhttp://orcid.org/0000-0001-9058-1037\nYeidelin Nieves \nDepartment of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico\nMaria F. Martinez \nSchool of Behavioral and Brain Sciences, Ponce Health Sciences University, Ponce, Puerto Rico\nJennifer Mier-Cabrera \nEndometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre \nEndometriosis de Hispanoamérica y España- AIEHE) \nAsociación Iberoamericana de Endometriosis para una Vida Plena, A.C\n226\n EDITORIAL","source_license":"CC0","license_restricted":false}