Study into transgender and non-binary people’s experience of living with endometriosis

Researchers at Stellenbosch University are launching a study into transgender and non-binary people’s experience of living with endometriosis – a hermeneutic phenomenological study.

Currently, there is little research on transgender and non-binary people’s experience of living with endometriosis, as most studies focus on the disease affecting women.

However, transgender and non-binary individuals are diagnosed with endometriosis and their stories and presence are missing from mainstream societal narratives.

This highlights the need for marginalised groups, such as transgender and non-binary people who have endometriosis, to be able to share their experiences and the need for further research in this area.

Research aim and objectives

The aim of this study is to explore the experience of transgender and non-binary people living with endometriosis. This research may fill a gap in understanding this disease’s impact on transgender and non-binary people.

The study will explore the following four objectives:

  • the effect the transgender and non-binary person with endometriosis experiences in living with a disease that is primarily associated as a woman’s disease.
  • gaining an understanding of the experience of psychosocial support received and gaps in support of transgender and non-binary people with endometriosis.
  • exploring how transgender and non-binary people with endometriosis perceive their healthcare in relation to endometriosis.
  • how transgender and non-binary people with endometriosis experience their integration and reception into the endometriosis community.

Who can participate in the study?

To participate in this study you have to:

  • identify as transgender and / or as non-binary
  • have been diagnosed with or have suspected endometriosis
  • over the age of 18 years
  • be able to speak English.

Participants can come from anywhere in the world.

What does participation in the study involve?

Participants will be requested to take part in a series of three interviews of between 40-60  minutes each in duration, which will be audio-recorded.

Interviews will take place online via a platform such as Skype, Zoom, or WhatsApp video or audio call.

The three interviews need to be completed within a 3 month timeframe, however the timing of interviews will be arranged to a suitable time for the participant and are flexible.

In addition to interviews, participants will be requested to keep a diary where they will record their day-to-day symptoms and feelings with regards to endometriosis for the duration of the data collection.

How to participate / contact for further information

If you are interested in being a participant, or you have any further questions, please email Cheryl Eder by 30 April 2022.


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