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Transgender and non-binary people’s experience of living with endometriosis
Thesis (PhD)--Stellenbosch University, 2025.
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| Format: | Thesis |
| Language: | English |
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Stellenbosch : Stellenbosch University
2025
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| _version_ | 1867613790382587904 |
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| access_status_str | Open Access |
| author | Eder, Cheryl Joy |
| author2 | Roomaney, Rizwana |
| author_browse | Eder, Cheryl Joy Roomaney, Rizwana |
| author_facet | Roomaney, Rizwana Eder, Cheryl Joy |
| author_sort | Eder, Cheryl Joy |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (PhD)--Stellenbosch University, 2025. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/134220 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:41:44.687Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/134220 Transgender and non-binary people’s experience of living with endometriosis Eder, Cheryl Joy Roomaney, Rizwana Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Thesis (PhD)--Stellenbosch University, 2025. Eder, C. J. 2025. Transgender and non-binary people’s experience of living with endometriosis. Unpublished doctoral thesis. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/27a7f5a5-a51e-44ee-ae8c-9e9a88d55026 Endometriosis is a disease that is known to have a devastating impact on people’s lives. Most of the literature describes endometriosis as a woman’s disease, thereby excluding other gender identities. There are rare reports of cisgender men having a diagnosis of endometriosis and limited discourse on transgender, non-binary and gender diverse people living with this disease. Gender diverse people’s voices are absent from research, with few academic articles describing their experience. Little is known about how endometriosis affects gender diverse people or their lived experience of this disease. The aim of my PhD was to explore the lived experience of transgender and/or non-binary people with endometriosis. I set to explore this aim with the use of four objectives: (1) To explore transgender and/or non-binary people with endometriosis perception of their healthcare in relation to their endometriosis, (2) to discover transgender and/or non-binary people’s experience of living with endometriosis, (3) to explore transgender and/or non-binary people with endometriosis experience of psychosocial support in relation to living with endometriosis, and (4) to learn about transgender and/or non-binary people’s experience of integration with the endometriosis community. Eleven transgender and non-binary individuals with endometriosis volunteered to take part in the study. I collected data from three individual semi-structured interviews with each participant and a three-month diary on their experiences of living with endometriosis and identifying as gender diverse. I used Hermeneutic analysis and followed the seven steps set out by Patterson and Williams to analyse the interviews and the diaries. I used Phenomenology of Embodiment, with a primary focus on Merleau-Ponty and Svenaues’ theories as my theoretical point of departure. Findings revealed that participants had additional barriers in comparison with cisgender women in their healthcare for endometriosis, as they not only had to manage difficulties in accessing healthcare for their endometriosis (which research reveals cisgender women struggle with too); but they also needed to mitigate experiences where their gender identity was negated, they were misgendered and experienced discrimination. Participants needed to manage endometriosis symptoms as well as gender dysphoria that was triggered by endometriosis symptoms. Participants reported diagnostic delays were lengthier than what is reported for cisgender women, and treatment for endometriosis did not align with participants’ gender identity. Participants had experiences of rejection of their gender identity as well as being isolated due to living with endometriosis, which is known to be an isolating disease from cisgender women’s reports. Findings further revealed that there were minimal gender inclusive online endometriosis support spaces, and they experienced discrimination online. It seemed participants experienced a layering of alienation from their self, their body and being-in-the-world while they managed living with endometriosis and identifying as gender diverse. Health care providers may benefit from further awareness and training regarding endometriosis and gender diversity. Gender diverse people with endometriosis may benefit from additional supports. Researchers and endometriosis organisations should use gender inclusive language as this disease affects all people. This study has made an important contribution to the field of endometriosis, by highlighting the experiences of a marginalised group. Doctoral 2025-10-23T13:59:09Z 2025-10-23T13:59:09Z 2025-03 Thesis https://scholar.sun.ac.za/handle/10019.1/134220 en Stellenbosch University 260 pages : ill. application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Eder, Cheryl Joy Transgender and non-binary people’s experience of living with endometriosis |
| title | Transgender and non-binary people’s experience of living with endometriosis |
| title_full | Transgender and non-binary people’s experience of living with endometriosis |
| title_fullStr | Transgender and non-binary people’s experience of living with endometriosis |
| title_full_unstemmed | Transgender and non-binary people’s experience of living with endometriosis |
| title_short | Transgender and non-binary people’s experience of living with endometriosis |
| title_sort | transgender and non binary people s experience of living with endometriosis |
| url | https://scholar.sun.ac.za/handle/10019.1/134220 |
| work_keys_str_mv | AT edercheryljoy transgenderandnonbinarypeoplesexperienceoflivingwithendometriosis |