Voices of women with endometriosis in Latin America: tales of invalidation, high costs, and diagnostic delays

Women & Health ISSN: 0363-0242 (Print) 1541-0331 (Online) Journal homepage: www.tandfonline.com/journals/wwah20 Voices of women with endometriosis in Latin America: tales of invalidation, high costs, and diagnostic delays Idhaliz Flores-Caldera, Ana C. Lou-Mercadé, Yeidelin Nieves, Maria F. Martinez & Jennifer Mier-Cabrera To cite this article: Idhaliz Flores-Caldera, Ana C. Lou-Mercadé, Yeidelin Nieves, Maria F. Martinez & Jennifer Mier-Cabrera (2025) Voices of women with endometriosis in Latin America: tales of invalidation, high costs, and diagnostic delays, Women & Health, 65:3, 224-226, DOI: 10.1080/03630242.2025.2469939 To link to this article: https://doi.org/10.1080/03630242.2025.2469939 Published online: 10 Mar 2025. Submit your article to this journal Article views: 1695 View related articles View Crossmark data Full Terms & Conditions of access and use can be found at https://www.tandfonline.com/action/journalInformation?journalCode=wwah20 EDITORIAL Voices of women with endometriosis in Latin America: tales of invalidation, high costs, and diagnostic delays Endometriosis is a chronic inflammatory condition that significantly affects the quality of life for millions of women worldwide (Missmer et al. 2021 ). Despite its high prevalence, there is a concerning lack of information regarding the experiences of patients with endometriosis from low- and middle- income countries (LMIC) around the globe, including those in Spanish-speaking countries of Latin America (LATAM) (Deng et al. 2023 ; Giudice, Horne, and Missmer 2023 ). This gap in data hinders our understanding of the universality of endometriosis symptoms and whether women in this region face challenges in accessing quality care (Flores-Caldera et al. 2021 ). This knowledge is important to inform public health initiatives in the region to ensure equity in endometriosis care and overall women’s health. To help fill this gap and address disparities in endometriosis research and care, we have recently conducted a cross-sectional study to determine the clinical profile of endometriosis in Spanish- speaking countries in LATAM and Spain (Flores-Caldera et al. 2021 ). After translating and validating the Endometriosis Phenome Project Clinical Minimal Questionnaire (Vitonis et al. 2014 ) into Spanish, we collaborated with regional patient support organizations to reach out to their members using social media. An online questionnaire completed by 1,378 participants from twenty-three countries (95 per - cent of whom self-reported endometriosis) revealed a mean diagnostic delay of 7 years. Common symptoms included back/leg pain (85 percent) and fatigue (81 percent). Additionally, 97 percent of participants reported dysmenorrhea, 79 percent experienced severe pain, and 86 percent reported dyspareunia. They also reported migraines, polycystic ovarian syndrome, and irritable bowel syn - drome as common comorbidities. The most used treatment was oral contraceptives (47 percent). This study provided the first clinical and demographic profile of patients with endometriosis in LATAM, highlighting high rates of severe symptomatology and substantial diagnostic delays. Understanding the state of endometriosis care in LATAM is essential to identify the factors contributing to poor health outcomes for women in the region. This lack of data led our team to conduct a follow-up assessment of health services, support, and educational resources available for the medical care of endometriosis patients in LATAM/Spain (Lou- Mercadé et al., under review). We carried out an online anonymous survey in collaboration with patient support organizations to evaluate the status of available treatments, specialized care, costs, medical plan coverage, diagnostic delays, and access to multi-disciplinary clinics and patient associa - tions. The survey, completed by 1,260 patients from twenty countries, revealed significant deficiencies in the quality of care. Notably, 70 percent of respondents reported that there were no multi- disciplinary care centers available in their regions. Three open questions in the survey were included to assess the patients’ experiences regarding their diagnostic and therapeutic journey unbiasedly. A qualitative analysis of the responses from 167 participants (13 percent) was conducted using the NVivo Software. Two team members conducted the initial thematic analysis using a descriptive and interpretative approach to the data, and three others reviewed thematic categories and sub-themes to ensure consistency and validity. The first question asked about participants’ experiences researching endometriosis on the Internet. The most-searched topics included general information about endometriosis and its treatments (medications and surgeries). Many were concerned about misinformation regarding endometriosis causes and treatments. Some others follow gynecologists on social media as a source of information about medical treatments. There was no consensus on whether there is sufficient and complete information available in Spanish: WOMEN & HEALTH 2025, VOL. 65, NO. 3, 224–226 https://doi.org/10.1080/03630242.2025.2469939 © 2025 Taylor & Francis Group, LLC “[There is] a lot of information, it is necessary to know how to filter it.;” “Information is superficial and repetitive.;” “Thanks to the internet I knew how to diagnose myself.” The second question focused on their experiences with endometriosis treatments. Many commented on the impact of pain, treatment failures, side effects, and surgical procedures they underwent (one patient reported nineteen surgeries). The patient journey was described as both costly and invalidating: “We need to talk about the costs of surgeries . . . it has been a true sacrifice, over and over again;” ”[The treatments] leave us in a bad financial situation.;” “Doctors take it as if this is normal.;” “We are without an answer, lost in nothingness.” Finally, we asked if they had any questions or expectations regarding the study. Many expressed concerns about delayed diagnosis, feelings of invalidation, and gratitude for the research: Hopefully with this [study] there is help for women with few economic resources to get treatment and stop suffering every month. Several urged more research on new treatments and a cure, and for more doctors to specialize in endometriosis care. They had high expectations about the study, including the need for improved education for doctors and the necessity to disseminate findings to Departments of Health, policy - makers, and employers. They proposed several recommendations, including: “It must be negotiated with the local deputies (legislators) to approve a law that protects us.;” “It is time for all of us to stand up in the different countries and make this disease much more visible so that the diagnosis does not take so long and so that gynecologists know about the disease” This qualitative study revealed that endometriosis patients in LATAM face significant barriers to accessing quality medical services, resulting in alarmingly long delays in diagnosis and treatment. The voices of patients in the study portray a challenging diagnostic and therapeutic journey, causing substantial emotional distress and economic burden. One patient expressed: I just want to be heard and that more women know about the disease and be treated to reduce the severe pain caused by endometriosis. Some studies have suggested that endometriosis is less prevalent in minoritized groups. This raises the question of whether this discrepancy is due to gaps in access to health care including the availability and high costs of laparoscopic diagnosis. Our study supports the idea that the prevalence of endome - triosis may be underestimated in these groups, likely because of limited access to specialized care. It also highlights the importance of creating a more equitable care plan for patients with endometriosis in LATAM. Key areas for prioritization include: (1) Reducing diagnostic delays by raising awareness of symptoms. (2) Educating patients and society to minimize the normalization of pain during menses. (3) Developing public policies to enhance access to advanced diagnostics and treatments. In a recent editorial published by The Lancet ( Endometriosis: Addressing the roots of slow progress ), it was emphasized that governments need to develop national action plans to raise awareness and ensure that patients with chronic conditions like endometriosis have timely access to quality care, regardless of their socioeconomic status (Lancet 2024 ). More research is necessary to understand the specific challenges faced by patients globally, ensuring that these action plans are tailored to the unique circumstances of each country/region. We advocate for initiatives aimed at increasing the inclusion of women of color, of low socioeconomic status, and from LMIC in endometriosis research, including genomic, proteomic, multi-omics, translational, clinical, and behavioral studies, so they can also benefit from advancements in endometriosis diagnosis and treatment. WOMEN & HEALTH 225 Acknowledgments We are grateful for the contributions of UNIENDO: Ibero-American Endometriosis Association presidents in the dissemination of the study surveys: Eva Alva – Mexico; Luz Marina Araque – Colombia; Marcela Arraya – Chile; Jessica Calvo-Costa Rica; Gabriela Gutierrez – Venezuela; Yuriko Huarcaya – Peru; Paola Paniagua – Dominican Republic; Maria Angeles Poveda – Spain; Viviana Setton – Argentina; Mercedes Valdés – Panama References Deng, S., D. Yang, Q. Li, H. Dai, W. Tang, L. Lu, J. Liu, et al. 2023 . “Bibliometric Analysis of Global Endometriosis Research, 2002 to 2021: A Review.” Medicine 102 (47): e35723. https://doi.org/10.1097/MD.0000000000035723 . Flores-Caldera, I., P. M. Ramos-Echevarria, J. A. Oliveras-Torres, N. Santos-Pinero, E. D. Rivera-Mudafort, D. M. Soto- Soto, B. Hernández-Colón, et al. 2021 . “Ibero-American Endometriosis Patient Phenome: Demographics, Obstetric-Gynecologic Traits, and Symptomatology.” Frontiers in Reproductive Health 3:667345. https://doi.org/10. 3389/frph.2021.667345 . Giudice, L. C., A. W. Horne, and S. A. Missmer. 2023 . “Time for Global Health Policy and Research Leaders to Prioritize Endometriosis.” Nature Communications 14 (1): 8028. https://doi.org/10.1038/s41467-023-43913-9 . Lancet, T. 2024 . “Endometriosis: Addressing the Roots of Slow Progress.” Lancet 404 (10460): 1279. https://doi.org/10. 1016/S0140-6736(24)02179-2 . Missmer, S. A., F. F. Tu, S. K. Agarwal, C. Chapron, A. M. Soliman, S. Chiuve, S. Eichner, et al. 2021 . “Impact of Endometriosis on Life-Course Potential: A Narrative Review.” International Journal of General Medicine 14:9–25. https://doi.org/10.2147/IJGM.S261139 . Vitonis, A. F., K. Vincent, N. Rahmioglu, A. Fassbender, G. M. Buck Louis, L. Hummelshoj, L. C. Giudice, et al. 2014 . “World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project: II. Clinical and Covariate Phenotype Data Collection in Endometriosis Research.” Fertility and Sterility 102 (5): 1223–32. https://doi.org/10.1016/j.fertnstert.2014.07.1244 . Idhaliz Flores-Caldera Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico Endometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre Endometriosis de Hispanoamérica y España- AIEHE) [email protected] Ana C. Lou-Mercadé Endometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre Endometriosis de Hispanoamérica y España- AIEHE) Aragon Health Research Institute (IIS Aragon), Obstetrics and Gynaecology Department, Hospital Clínico Universitario Lozano Blesa, Zaragoza, Spain http://orcid.org/0000-0001-9058-1037 Yeidelin Nieves Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico Maria F. Martinez School of Behavioral and Brain Sciences, Ponce Health Sciences University, Ponce, Puerto Rico Jennifer Mier-Cabrera Endometriosis Research Alliance of Hispanic-America and Spain (Alianza de Investigación sobre Endometriosis de Hispanoamérica y España- AIEHE) Asociación Iberoamericana de Endometriosis para una Vida Plena, A.C 226 EDITORIAL