How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content

Alaina Loughran, Kirstie Daken (), Carol du Plessis and Amy B. Mullens
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Alaina Loughran: School of Psychology and Wellbeing, Centre for Health Research, University of Southern Queensland, 11 Salisbury Road, Ipswich, QLD 4305, Australia
Kirstie Daken: School of Psychology and Wellbeing, Centre for Health Research, University of Southern Queensland, 11 Salisbury Road, Ipswich, QLD 4305, Australia
Carol du Plessis: School of Psychology and Wellbeing, Centre for Health Research, University of Southern Queensland, 11 Salisbury Road, Ipswich, QLD 4305, Australia
Amy B. Mullens: School of Psychology and Wellbeing, Centre for Health Research, University of Southern Queensland, 11 Salisbury Road, Ipswich, QLD 4305, Australia

IJERPH, 2025, vol. 22, issue 11, 1-21

Abstract: Women with endometriosis often experience insufficient knowledge and support regarding their condition within the healthcare system. Women use social media to obtain information, share personal experiences, and establish connections with others. This study examined how women with endometriosis-like symptoms use Reddit to seek support and acquire knowledge for self-management, with three research questions guided by the Information–Motivation–Behavioural skills model. A total of 194 threads were analysed from the r/endo subreddit, and a reflexive thematic analysis was conducted. Three overarching themes were identified (information, motivation, and behavioural skills) and six subthemes emerged from the data (endometriosis experience, endometriosis medical care, personal life impacts, social existence impacts, management strategies negative, and management strategies positive). Findings highlight that Reddit functions as a source of shared knowledge, symptom validation, emotional support, supplementing gaps in traditional healthcare services. This study provides insights into how healthcare systems and professionals can support women with endometriosis, including timely diagnosis and management strategies, in addition to a framework for an endometriosis Information–Motivation–Behavioural skills model. Future research could expand on study findings by implementing this conceptualised model in a mixed-methods context to gain insight into women’s endometriosis experiences within healthcare systems to understand how they can be empowered and supported.

Keywords: endometriosis; Information–Motivation–Behavioural (IMB) skills model; Reddit; self-management; women (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2025
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