Mediating Pain: Navigating Endometriosis on Social Media

Eileen Mary Holowka
Frontiers in pain research (Lausanne, Switzerland) · 2022 · vol. 3 , pp. 889990 · doi:10.3389/fpain.2022.889990 · PMID:35707051 · W4281730371
article OA: gold CC0 ⤵ 25 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This qualitative study found that individuals with endometriosis use social media for information, support, representation, and advocacy, navigating their symptoms and experiences in ways that researchers and practitioners should recognize and integrate.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-09 ⓘ

This qualitative study investigated why and how people living with endometriosis use Facebook and Instagram, using mixed qualitative “small data” approaches that included a survey (287 responses) and semi-structured Zoom interviews (22 participants) with participants recruited from private endometriosis Facebook groups and Instagram page administrators, complemented by snowball sampling. The key findings were that participants used social media for information sharing, social support, representation, and advocacy, including ways they “understand, experiment with, and navigate” their symptoms, despite risks of misinformation and online conflict. The paper’s main caveat is that it did not use big-data hashtag analyses and collected limited demographic information in the survey, which constrains generalizability beyond the recruited English-speaking participants. This paper is centrally about endometriosis — it analyzes how people with endometriosis use social media to manage symptoms, gain support, and advocate amid gaps and delays in care.

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Abstract

With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.

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Condition tags

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.

References (56)

Cited by (25)

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