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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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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Abstract

Introduction Without even a voice to live, how can we then have a voice in other spaces, especially ones that are so gendered. So, I think since we are already having struggles with our voice just to begin to live with life, it would really have to improve before we could be like, ‘Oh we can live a life and with endo and be heard’.

Methods

Positionality Participants Instruments Procedure Ethical considerations Data analysis Findings Feeling isolated due to a lack of inclusive endometriosis support groups Yes I found nothing . . . when I surfed last year, I found nothing, absolutely nothing. . . It’s scary because it makes me feel alone. I think quite isolated again, because I think there its even though endometriosis feels pretty invisible anyway, you then kind of feel invisible to your own community too, who are supposed to just understand and relate to you, which they still do but it’s difficult when you are not included in that way [gender identity]. Exclusion because of gendered language in endometriosis support groups The language [gendered language] that was being used and I just kind of felt like, I just didn’t belong. That was the feeling I had, I felt isolated and just that I didn’t fit in properly. Uncomfortable and yeh just like anxious and triggered and stuff by it because it’s like you have to read through all of it, like you still want to read all the information, you still want to learn all the stuff and talk to people but there’s a lot of gendering stuff that is hard to sift through and constantly bombard yourself with. It’s been nice when I go online and I see people like, you know Endogram and stuff, and she is putting up posts you know that it is not a female disease, and she uses such inclusive language and that’s just comforting. Experiences of transphobic hate from endometriosis communities You get down voted to hell and you get hate brigaded, like you get brigaded on Reddit and you will have people go through your post history and just down vote everything they possibly can in droves. So I would just hope that if a person like me came out and said I have endo, hopefully we’re not quote and unquote shot down for it automatically because we’re not the majority and what is assumed to be the only way. Otherwise we’ll never be able to be heard. A cisgender woman with endo commented, ‘Well trans people can’t have infertility from endo, trans doesn’t count’. And that was really hurtful because firstly, trans people can still get pregnant and they were incredibly misinformed. So although I haven’t tried to get pregnant, I could still have infertility problems, and probably trans and non-binary people suffer with similar issues. Secondly just saying that trans people with endo don’t count because they don’t have infertility problems is frustrating. Two other people who followed them came into my comments and commented that I was disgusting, that I was not worthy of being a man, that I’m spreading misinformation about trans people having endo. Which was horrible . . . and traumatic. We don’t exist. That’s basically it, we don’t exist and then we are like, We exist! It’s like, no you fucking don’t. Shut up shut up, you are invalidating my woman hood by existing and having the same fucking disease as me. Get back in the box. We don’t want you here. So, it’s either worse cause like, you had to, but no I need help!

Discussion

Conclusion Ethics statement Declaration of conflicting interests Funding ORCID iDs Data availability statement

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endometriosis

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