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

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 (M(age) = 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.