"My body…tends to betray me sometimes": a Qualitative Analysis of Affective and Perceptual Body Image in Individuals Living with Endometriosis

Katherine Sayer-Jones, Sherman, Kerry
International journal of behavioral medicine · 2022 · vol. 30(4) , pp. 543–554 · doi:10.1007/s12529-022-10118-1 · PMID:36074337 · PMC9454389 · W4294992750
article OA: gold CC0 ⤵ 20 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study explored how endometriosis affects body image in 40 women, identifying themes of the body as a barrier, the need to hide, and the body as a healer and teacher.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study investigated how living with endometriosis affects the affective and perceptual domains of body image, using an online survey with written narratives from 40 Australian adults (women and one non-binary participant) recruited via endometriosis organizations and clinical/student sources. Thematic analysis identified three themes—“My Body is a Barrier,” “Needing to Hide Myself,” and “Body as Healer and Teacher”—capturing participants’ experiences of unpredictably burdensome symptoms that reduced bodily appreciation, prompted concealment behaviors, and also sometimes framed the body as teaching or adapting over time. A key limitation is that participants were recruited through consumer organizations/clinic-related and student channels, and the paper relies on self-reported endometriosis and narrative accounts rather than objective clinical measures. This paper is centrally about endometriosis — it directly analyzes how endometriosis shapes affective and perceptual body image through qualitative thematic findings.

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Abstract

BACKGROUND: Endometriosis is a chronic reproductive disease manifesting in physical symptoms including pain, abdominal swelling, altered bowel and bladder function, and fatigue. These symptoms potentially threaten body image regarding subjective perceptions of functional, appearance, and sensory aspects of one's body. The aim of this study was to qualitatively understand how endometriosis impacts on affective and perceptual aspects of body image. METHOD: Participants (N = 40) were recruited through endometriosis consumer organizations. In an online survey, participants completed demographic and health history questions, then provided written narratives about body image-related impacts of their endometriosis in response to open-ended questions. These data were thematically analyzed using the template approach. FINDINGS: The majority of participants (Mage = 28.3 years) were employed part-time, diagnosed on average for 4.2 years, and reported pelvic pain and bloating, fatigue, and nausea symptoms. Thematic analysis yielded three themes including My Body is a Barrier, Needing to Hide Myself, and Body as Healer and Teacher, all of which reflected affective and perceptual aspects of body image. CONCLUSION: These findings highlight wide-ranging body image-related impacts of endometriosis, suggesting the need for targeted interventions to address these concerns.

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Condition tags

endometriosischronic_pelvic_pain

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

Citation neighborhood

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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Cited by (20)

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