What is endometriosis? Patients turn to social media for information and support
Patients with endometriosis, facing historical mistreatment and diagnostic delays, increasingly turn to social media for information and support, often finding valuable resources despite potential misinformation.
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This paper discusses how people living with endometriosis seek information and support via social media, motivated by longstanding underfunding, misrepresentation, and perceived mistreatment in care. Drawing on a survey of 287 people with endometriosis, the author reports that 61.6% did not learn about the condition from health-care practitioners, while 81.6% said social media played a role in diagnosis or learning, and 92% learned something new online that they had not heard elsewhere. A key caveat is that the paper relies on survey-reported experiences and does not provide verification of information accuracy on platforms, while also noting that misinformation competes with accurate advocate content. This paper is centrally about endometriosis—specifically, patient use of social media for information and support in the context of delayed diagnosis and perceived dismissal.
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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.
References (7)
- Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research via openalex
- Googling endometriosis: a systematic review of information available on the Internet via openalex
- Living with Endometriosis: The Role of the Internet in Supporting the Diagnosis and Treatment Process via openalex
- The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation via openalex
- Women's experience of endometriosis via openalex
- W2576167606 via openalex
- W2206304062 via openalex
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- last seen: 2026-06-10T17:14:06.276822+00:00