Welcome to the EndoHood: A Scoping Review of Social Media Spaces for those with Endometriosis

Chloë Gamlin, Ealish Swift
In: Current Women s Health Reviews · 2025 · vol. 22(3) · doi:10.2174/0115734048376005250630124032 · W4413067909
article OA: closed CC0
Full text JSON View on OpenAlex View at publisher
⚙ AI-generated summary by claude@2026-06, 2026-06-06 ⓘ

This scoping review of 26 articles found that endometriosis social media groups provide psychosocial support and kinship, but raise concerns about information reliability and call for clinician engagement.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

⚙ AI-generated deep summary by claude@2026-07, 2026-07-09 · read from full text ⓘ

This scoping review examined how social media is used by people with endometriosis, identifying and synthesizing 26 English-language (or translated) articles published from 2004–2024 using the Arksey & O’Malley framework and searches of MEDLINE and EMBASE. The review found that while some literature evaluated the accuracy of endometriosis-related posts, nine articles raised concerns about the reliability of information shared and highlighted the need for expert engagement in disseminating educational content online. The analysis identified themes that online groups may address unmet needs through problem-solving and psychosocial support, foster kinship and peer validation of symptoms, and enable discussion of sensitive issues via anonymity. This paper is centrally about endometriosis — it reviews endometriosis-related social media spaces and the themes and concerns emerging from them.

Read from the paper's body, not the abstract. Not a substitute for reading the paper. No clinical advice. How this works

Abstract

Introduction: Social media has a significant capacity to influence healthcare delivery. The development of online communities is well documented for conditions including asthma and stroke. Less is known about social media use amongst those with endometriosis. This review explores internet groups as an under-recognised supplement to healthcare, prompting greater clinician engagement online. Methods: This scoping review was conducted according to the methodology developed by Arksey & O’Malley. It is the first piece of work bringing together commentary on endometriosis-related social media use and existing frameworks used to analyse other online communities. Relevant studies were identified through searches of MEDLINE and EMBASE. As an exploratory piece, there were no predetermined exclusion criteria, provided articles were in English or translated into English. A total of 26 articles from 2004-2024 were included. Results: The literature on social media posts about chronic conditions typically explores the accuracy of medical content or offers sociological commentary. Nine articles assessed the evidence base of endometriosis posts across various platforms. All raised concerns about the reliability of information shared and called for expert engagement in the dissemination of educational materials online. Discussion: Three key themes emerged from the analysis of online communities. First, online groups are perceived as an antidote to unmet needs in endometriosis patients accessing traditional healthcare, including problem-solving and psychosocial support. Further, such groups cultivate a sense of kinship amongst affected individuals. The exchange of experiences and peer validation of symptoms contributes to a collective narrative. Finally, social media can facilitate open conversation around sensitive topics through anonymity within these communities. Conclusion: Endometriosis is a condition with the potential for profound psychological and psychosexual impact. Social media communities create a space in which private suffering can become public and taboo subjects explored. Clinicians have a responsibility to engage both with factual content curation and in addressing unmet care needs expressed by patients online.
Full text 4,155 characters · extracted from oa-doi-fallback · 6 sections · click to expand

Abstract

Introduction: Social media has a significant capacity to influence healthcare delivery. The development of online communities is well documented for conditions including asthma and stroke. Less is known about social media use amongst those with endometriosis. This review explores internet groups as an under-recognised supplement to healthcare, prompting greater clinician engagement online.

Methods

This scoping review was conducted according to the methodology developed by Arksey & O’Malley. It is the first piece of work bringing together commentary on endometriosis-related social media use and existing frameworks used to analyse other online communities. Relevant studies were identified through searches of MEDLINE and EMBASE. As an exploratory piece, there were no predetermined exclusion criteria, provided articles were in English or translated into English. A total of 26 articles from 2004-2024 were included.

Results

The literature on social media posts about chronic conditions typically explores the accuracy of medical content or offers sociological commentary. Nine articles assessed the evidence base of endometriosis posts across various platforms. All raised concerns about the reliability of information shared and called for expert engagement in the dissemination of educational materials online.

Discussion

Three key themes emerged from the analysis of online communities. First, online groups are perceived as an antidote to unmet needs in endometriosis patients accessing traditional healthcare, including problem-solving and psychosocial support. Further, such groups cultivate a sense of kinship amongst affected individuals. The exchange of experiences and peer validation of symptoms contributes to a collective narrative. Finally, social media can facilitate open conversation around sensitive topics through anonymity within these communities.

Conclusion

Endometriosis is a condition with the potential for profound psychological and psychosexual impact. Social media communities create a space in which private suffering can become public and taboo subjects explored. Clinicians have a responsibility to engage both with factual content curation and in addressing unmet care needs expressed by patients online.

Keywords

Endometriosis, social media, online communities, pelvic pain, open conversation, psychosocial support. [http://dx.doi.org/10.1186/s12913-016-1691-0] [PMID: 27562728] [http://dx.doi.org/10.1016/j.anai.2021.09.014] [PMID: 34555532] [http://dx.doi.org/10.1136/bmj.g6946] [http://dx.doi.org/10.2196/jmir.9952] [PMID: 29997105] [http://dx.doi.org/10.1136/bmjopen-2019-028958] [PMID: 31289087] [PMID: 34511115] [PMID: 23884896] [http://dx.doi.org/10.1007/s43032-024-01515-w] [PMID: 38512699] [http://dx.doi.org/10.3109/0167482X.2015.1074173] [PMID: 26328618] [PMID: 36032462] [PMID: 33765376] [http://dx.doi.org/10.1530/RAF-21-0106] [PMID: 35514542] [http://dx.doi.org/10.2196/31135] [PMID: 35302501] [PMID: 36197187] [http://dx.doi.org/10.1016/j.ijmedinf.2018.04.010] [PMID: 29779724] [http://dx.doi.org/10.1055/a-1481-0037] [PMID: 33962479] [PMID: 35435253] [http://dx.doi.org/10.1111/1471-0528.17563] [PMID: 37271737] [http://dx.doi.org/10.1016/j.jmig.2021.02.005] [PMID: 33582381] [http://dx.doi.org/10.3389/fpain.2022.889990] [PMID: 35707051] [http://dx.doi.org/10.1111/ijn.12833] [PMID: 32189457] [http://dx.doi.org/10.1080/14639230600552601] [PMID: 16754366] [http://dx.doi.org/10.3390/healthcare12010121] [PMID: 38201027] [http://dx.doi.org/10.3390/women3010007] [http://dx.doi.org/10.1016/j.arthro.2019.07.033] [PMID: 31864582] [http://dx.doi.org/10.1016/j.ejogrb.2022.05.020] [PMID: 35640437] [http://dx.doi.org/10.2196/45381] [PMID: 37581905] [http://dx.doi.org/10.3163/1536-5050.99.2.004] [PMID: 21464850] [http://dx.doi.org/10.1111/j.1467-9566.2007.01024.x] [PMID: 18092978] [http://dx.doi.org/10.1016/j.socscimed.2023.115889] [PMID: 37121071] [http://dx.doi.org/10.5812/ijem.16130] [PMID: 38222376] [http://dx.doi.org/10.1111/joor.13264] [PMID: 34592005] [http://dx.doi.org/10.1007/s43390-021-00331-5] [PMID: 33826124] [http://dx.doi.org/10.1186/1471-2288-13-48] [PMID: 23522333]

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

⚙ Ask this paper AI returns verbatim quotes from the full text · source: oa-doi-fallback ⓘ

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

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 (34)

Source provenance

openalex
last seen: 2026-06-10T17:14:06.276822+00:00
unpaywall
last seen: 2026-06-13T06:42:57.164913+00:00
License: CC0 · commercial use OK