| Issue/Objective |
Persistent delays in the diagnosis of endometriosis and the systematic dismissal of women's pain represent a critical yet neglected driver of health inequities, particularly in low- and middle-income settings such as Peru. Despite its high prevalence, endometriosis remains under-recognized within public health agendas, frequently misdiagnosed, or normalized as "ordinary" menstrual pain, leading to prolonged suffering and fragmented care trajectories. This neglect is not only clinical but is rooted in broader social, cultural, and epistemic structures that shape whose pain is believed, whose knowledge is legitimized, and how health systems respond to chronic conditions affecting women.
Drawing on medical anthropology and qualitative research in Peru, this presentation examines the social processes through which endometriosis is rendered invisible, delayed, or misdiagnosed, and how these processes reproduce gendered inequities in access to care. The objective is to conceptualize diagnostic delay as a form of structural neglect and to explore how women navigate health systems under conditions of uncertainty, stigma, and invalidation. By centering women's lived experiences and analyzing the intersections between gender, knowledge, and care, this presentation contributes to ongoing debates on health equity and rights-based approaches. It directly engages with the conference theme by addressing upstream determinants of inequity, foregrounding neglected conditions and marginalized voices, and offering critical insights to improve accountability and responsiveness in health service delivery. |
| Methodology/Approach |
This is an ongoing research project situated in Peru, focusing on women navigating diagnostic pathways for endometriosis within public and private health systems. The study adopts a qualitative, medical anthropological design, combining in-depth semi-structured interviews and ethnographic engagement with women experiencing diagnostic delay, as well as key healthcare providers. The data collection phase has been completed, generating rich empirical material on women's experiences of pain, dismissal, and prolonged uncertainty across fragmented care trajectories.
The project is currently entering a second phase centered on collaborative knowledge translation. Drawing on the findings from the qualitative analysis, this phase will involve working in partnership with patient associations to co-produce knowledge and develop strategies to communicate lived experiences of diagnostic delay to healthcare providers and stakeholders. Importantly, this approach inverts conventional models of knowledge translation, which typically flow from providers to patients. Instead, it prioritizes the voices and experiential knowledge of patients as a critical source of insight for improving care.
This approach is particularly relevant in contexts where women's pain is systematically undervalued, as it creates opportunities to challenge dominant clinical assumptions and foster more responsive, person-centered care. |
| Results |
Preliminary findings from the interview phase reveal that diagnostic delay is not experienced as a single event but as a prolonged and fragmented process marked by repeated dismissal, normalization of pain, and misattribution of symptoms. Women describe navigating multiple providers and health systems, often encountering disbelief and a lack of recognition of their pain as legitimate. These experiences not only shape access to care but also have profound effects on women's self-esteem and everyday lives. Participants report disruptions to their educational trajectories and work stability, difficulties sustaining intimate relationships, and a gradual erosion of their social lives, as pain and uncertainty make it challenging to participate fully in daily activities and social environments.
Importantly, women actively develop strategies to manage their symptoms and seek validation, drawing on peer networks, online communities, and patient associations. These findings suggest that endometriosis and its delayed diagnosis do not only result from broader social inequalities but also actively reshape social participation and belonging. In this sense, the study points toward a need to rethink conventional frameworks of the "social determinants of health" by considering how chronic and neglected conditions can themselves become determinants of the social-reconfiguring sociability, agency, and everyday life. This highlights diagnostic delay as a form of structural neglect shaped not only by gaps in clinical knowledge but also by gendered assumptions embedded in health systems. |
| Discussion/Conclusion |
This research has important implications for both health systems and policy by reframing diagnostic delay as a form of structural neglect rather than an isolated clinical issue. The findings demonstrate that delayed diagnosis in conditions such as endometriosis not only limits access to timely care but also produces cascading effects across women's lives, including impacts on education, employment, intimate relationships, and broader social participation.
In terms of policy impact, the project underscores the urgency of integrating gender-sensitive approaches into diagnostic pathways, improving provider training on chronic pain conditions, and strengthening accountability mechanisms within health systems to address dismissal and misrecognition of patients' experiences. The second phase of the project, centered on collaborative knowledge translation, offers a scalable and adaptable model for bridging gaps between patients and providers. By prioritizing patient-led knowledge and facilitating its communication to healthcare professionals, this approach challenges traditional top-down models and creates opportunities for more responsive, person-centered care.
This model can be scaled through partnerships with patient organizations, incorporation into provider training programs, and integration into national strategies addressing women's health and chronic conditions. More broadly, the project aligns with the conference theme by addressing upstream determinants of inequity, centering marginalized voices, and contributing to the development of more equitable and accountable health systems. It also directly engages with sub-themes related to health equity and rights-based approaches, protecting women's health, and strengthening health service delivery through more inclusive and context-sensitive practices. |
| Presenters and Affiliations |
Silvana Matassini McGill University |
