Missing Out: A Qualitative Study Exploring Adolescents’ and Young Women’s Experiences of Endometriosis

Amie Randhawa, Hewett FG, Georgina Jones, Annalise Weckesser
In: Women's Reproductive Health · 2026 · pp. 1–18 · doi:10.1080/23293691.2026.2697785 · W7170168764
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Abstract

Limited evidence explores the adolescent/young person’s experience of endometriosis. In this study, qualitative interviews were undertaken with 24 participants aged 18–24 with endometriosis. Analysis identified seven themes characterizing their experiences: ambiguity at symptom onset, symptoms of concern, complexity of medical experiences, missing out on teenage life, the emotional burden, unmet support and information needs, and feeling uncertain about the future. Their experiences were significantly shaped by their life-stage and were further contextualized by the contested and stigmatized nature of endometriosis. Findings highlight the need to reconsider how endometriosis in young people is perceived and managed, to prioritize their concerns.

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