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

Alison Owen, Rebecca Machin, Jennifer Taylor
Journal of health psychology · 2026 · vol. 31(11) , pp. 13591053251399066 · doi:10.1177/13591053251399066 · PMID:41531258 · W7123753848
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This qualitative study of 304 participants found that endometriosis and adenomyosis significantly disrupt body image, leading to shame, disconnection, and a diminished sense of identity.

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This qualitative study investigates the psychological impact of chronic pelvic pain disorders by exploring how endometriosis and adenomyosis disrupt patients' body image. The researchers conducted a large-scale analysis to understand the specific ways in which these conditions alter self-perception and identity, capturing the sentiment that individuals no longer feel like themselves due to their symptoms. The findings highlight significant emotional distress and a profound sense of loss regarding one's physical self among those affected by these gynecological diagnoses. This paper is centrally about endometriosis and adenomyosis, focusing specifically on the qualitative experience of body image disruption associated with these conditions.

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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.
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Condition tags

endometriosisadenomyosis

MeSH descriptors

Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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