ArticleDigital health
Social media activism and women's health: Endometriosis awareness and support.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Educators, Not Influencers: Health Content Creator Perspectives on Research Recruitment Collaboration.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content.International journal of environmental research and public health · 2025Article
- Endometriosis-The scapegoat for pelvic pain?Acta obstetricia et gynecologica Scandinavica · 2025Review
- How Women Discuss Heavy Menstrual Bleeding in Online Forums ("It's Like Revenge of the Uterus"): Template Approach to Thematic Analysis.Journal of medical Internet research · 2025Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objective: While endometriosis is estimated to affect 1 in 10 women globally, awareness of the disease as well as research and funding to fight the disease remains lacking as compared with other chronic diseases. This study examines how social media users utilized Instagram to raise awareness of and mobilize activism around endometriosis by analyzing prominent topics, word associations, and feminism themes in endometriosis-tagged posts on Instagram. Methods: We used a mixed-method approach of combining computational analyses (topic modeling and word association) and human coding (qualitative thematic analysis) of Instagram posts on endometriosis. Results: Our results show that while Instagram users discussed a variety of issues related to the disease on the social media platform, these issues tend to focus on four topic areas: (i) living with endometriosis, (ii) pregnancy and endometriosis, (iii) awareness and empowerment, and (iv) women's health and wellbeing. In addition, social media users widely incorporated three feminism themes: (i) bringing attention to invisible disability, (ii) solidarity and support among women, and (iii) advocacy and activism around women's health. Conclusion: People with endometriosis use Instagram to create an online public sphere for raising awareness of the disease, offering networking and support to other endometriosis patients, and creating a movement for enhancing women's health and wellness. In doing so, they are also addressing sexism and misconceptions about endometriosis that have traditionally contributed to normalizing women's experience of pain associated with endometriosis and consequently delaying endometriosis diagnoses.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.