“I don’t feel like me anymore”: A large-scale qualitative study exploring body image disruption in endometriosis and adenomyosis

Abstract

This study explored the lived experiences of body image among individuals with a diagnosis or suspected diagnosis of endometriosis and/or adenomyosis. Using an online qualitative survey (n = 287) and semi-structured interviews (n = 17), data were collected from 304 participants and analysed using reflexive thematic analysis. Findings revealed that these conditions significantly disrupted body image, with participants describing shame, disconnection, and a diminished sense of identity. Three overarching themes were identified: (1) Under Scrutiny: Concealment and the Emotional Toll of the Conditions, (2) A Disrupted Sense of Self, and (3) Avoidance: The Psychosocial Impact of Symptom Visibility. Body image concerns emerged as a central aspect of living with these gynaecological conditions, influencing self-esteem, mental health, and interpersonal relationships. The results underscore the need for more integrated and psychologically informed healthcare approaches that recognise body image as a key element of patient well-being.