More than painful periods: South Asian women’s experiences of endometriosis in the UK

Background: Endometriosis is an inflammatory condition that affects 5-10% of women and those assigned female at birth. Symptoms can be chronic, yet diagnosis takes on average between 4 to 7 years. Whilst qualitative literature has begun to explore the lived experiences of women with endometriosis, there remains limited empirical explorations of the experiences of women from racialised backgrounds. Methodology: This study adopted a narrative analysis approach, specifically using thematic narrative analysis to explore how 14 women from South Asian backgrounds within the UK made sense of their experiences of receiving a diagnosis and living with endometriosis. The study was grounded in critical realism, whilst also adopting a Post-Colonial Feminist approach. Findings: Six narrative themes emerged: (1) Early pain, confusion, and the normalisation of suffering; (2) Limited clinician knowledge, self-advocacy, and navigating the healthcare system; (3) Diagnosis as validation, and “now what?” (4) Endometriosis as a whole-life condition and an “invisible disease”; (5) Cultural silence, shame, ignorance, and learned restraint in speaking; and (6) Resilience, growth, and strength. Overall, the findings illustrate how multiple aspects of participants’ lives intersected to shape their experiences of endometriosis. Implications: This study provides a novel perspective on the experiences of South Asian women, illuminating not only what they encounter but also the underlying factors shaping these experiences. The findings underscore the importance of increased investment in women’s health and highlight the need to strengthen cultural competence within the NHS.