Being an outsider: transgender and non-binary experiences within online endometriosis communities

Cheryl Eder, Rizwana Roomaney
In: South African Journal of Psychology · 2025 · vol. 55(4) , pp. 537–548 · doi:10.1177/00812463251357406 · W4412142061
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⚙ AI-generated summary by claude@2026-06, 2026-06-10 ⓘ

This study explored transgender and non-binary people with endometriosis' experiences in online communities, finding they faced isolation, exclusion due to gendered language, and transphobic hate.

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Abstract

Endometriosis is a chronic and painful disease that has a detrimental effect on people’s quality of life. Endometriosis is known as a lonely disease. Assigned female at birth transgender and non-binary people with endometriosis’ narratives are rare in literature. Cisgender women have reported experiencing support from online endometriosis community platforms. The aim of our international study was to explore transgender and non-binary people with endometriosis experience of support and integration from online endometriosis communities. With the use of Hermeneutic Analysis, we developed the following three themes to describe 11 transgender and non-binary people with endometriosis experience of support and integration from online endometriosis communities: (1) feeling isolated due to a lack of inclusive endometriosis support groups, (2) exclusion because of gendered language in endometriosis support groups, and (3) experiences of transphobic hate from endometriosis communities. We used Phenomenology of Embodiment as our theoretical point of departure as this theory interlinks the relationship we have with our bodies and the social world. Findings revealed that participants were isolated and left with a lack of support from online endometriosis communities. In addition, they were often left to deal with difficult feelings as a result of the transphobic hate they experienced from endometriosis communities. We recommend that endometriosis support platforms and endometriosis organisations that have online support platforms utilise both gender-inclusive language and gender diversity inclusion practices to support inclusion in these online spaces for all who have endometriosis.

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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 (34)

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