The double-edged sword of PCOS and gender: exploring gender-diverse experiences of polycystic ovary syndrome

Abstract

Background: Past research on polycystic ovary syndrome (PCOS), a chronic endocrine condition, has focused on the experiences of cisgender women. Aims: The purpose of the present study was to address the knowledge gap about gender-diverse individuals by exploring their lived experiences with PCOS and to better understand if and how their gender identity affected their experience of PCOS. Methods: To explore this, we recruited nine non-binary people and one transgender man with a PCOS diagnosis for qualitative interviews. Results: Three overarching themes emerged: PCOS as a burden, PCOS as an occasion, and PCOS as a benefit. While some aspects of PCOS created an additional burden for our participants, other symptoms such as excess body and facial hair could be empowering and affirming, revealing a positive aspect of this chronic condition. Conclusion: This study is the first to describe the lived experiences of gender-diverse individuals with PCOS, uncovering burdens as well as some benefits. Future research in this population may reveal not only the particulars of what PCOS is like for them but also more generalizable insights into the highly gendered perception and treatment of PCOS.

Keywords:

• Gender identity
• non-binary
• polycystic ovary syndrome
• qualitative research
• transgender

Acknowledgments

We thank the participants for their contributions to this project. We acknowledge the work of our volunteer, Julia Mallen, in transcribing interviews.

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments of comparable ethical standards.

Conflict of interest

The authors declare that they have no conflicts of interest.

Declaration of interest statement

The authors declare that they have no conflicts of interest.

Additional information

Funding

This work was supported by the Jacqueline Ford Gender and Health Fund (to G. Einstein); and Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging from the Poslun Family Foundation, Canadian Institutes of Health Research, Alzheimer’s Society of Canada, and Ontario Brain Institute under Grant WJP-150643 (to G. Einstein).