Missing Out: A qualitative study exploring adolescents’ and young women’s experiences of endometriosis

The evidence base exploring the experience of adolescents/young women with endometriosis is limited. In this study, qualitative interviews were undertaken with 24 participants aged 18-24 with endometriosis. Analysis identified seven themes characterising 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. Adolescents’ and young women’s experiences are significantly shaped by their age/life-stage, and are further contextualised by the gendered, contested, and stigmatised nature of endometriosis. Findings highlight the need for a shift in how endometriosis in young people is perceived and managed, ensuring their particular concerns are prioritised.