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Gender diverse people with PCOS: A conversation

Posted By Majella Jones (APD)  

 

Majella Jones ( he/ they) + Christie Bennett ( she/her)

 

PCOS impacts up to 18% of people with ovaries. Those with PCOS often have higher levels of androgens (hormones like testosterone). The symptoms of PCOS can include increased hair growth (especially on the face and chest), acne, painful oligomenorrhea or amenorrhea and anxiety/depression. 

 

Max generously shared their lived experience of PCOS as a trans and gender diverse person. Like many trans-people, amenorrhea and increased body hair was a gender affirming experience for Max. However, Max was on the contraceptive pill which can mask symptoms of PCOS and medical professionals failed to ask about menstruation. After some time Max self identified PCOS and needed to advocate for himself. 

How could Max’s experience have been more gender affirming?

 

In Max's experience many doctors had a binary approach to gender and sexuality rather than acknowledging the spectrum that they can sit on. At the time of diagnosis Max was exploring their identity. But, medical professionals didn't ask inquiring or clarifying questions that may have been helpful to identify Max’s symptoms. Max experienced very focused questions based on assumptions of Cis gendered women which was triggering. Consent was not sought, nor was he asked about his preference in language used, to have discussions about reproductive organs, functions, or possible future pregnancies which triggered gender dysphoria for Max. Max felt disappointed that more exploratory questions were not asked especially as there is a correlation of increased PCOS in the gender diverse communities. 



Recommendations 

  • Always ask consent to discuss reproductive health, and about the language preferred by the individual you’re working with. 

 

  • De-gender conversations, resources and printed material about PCOS. It is important to acknowledge that it is not just women who experience PCOS but can be a diverse range of individuals. FOr example, use neutral pronouns instead such as “people with PCOS”.

 

  • Ask preferred terminology (pronouns) rather than making assumptions. If you're not sure - ask and clarify. For example: “What are your pronouns?”, “what is your chosen/prefered name?”, “ Do you identify as trans, gender diverse or other?”

 

  • In people with PCOS medical professionals should be aware there may be a history of eating disorders. Therefore, recommendations to lose weight or restrict food may be harmful. It is important to take a wider lens and focus on all of the specific interventions people have control of and can change to improve symptoms. Further, research continually shows that there is no intervention that leads to long term weight loss and that the implied weight stigma and behaviors in an attempt to lose weight are inherently harmful.

 

  • When discussing reproductive health with people who are trans or gender diverse, be aware not to make assumptions about gender, sexuality or the individual's plans moving forward. 

 

  • Ask questions and don’t assume gender, sexual orientation, and if they are or intend to be sexually active. Make sure questions are open ended and you are not making leading questions with expected answers. This ensures that society expectations of people to act in a particular way sexually or with their reporductive health are not perpetuated in a harmful way.

 

  • Ensure your personal or workplace client information forms are inclusive of trans and gender diverse people. This can include options for pronouns, chosen/preferred name and legal name (medicare, if not changed), gender and sex (as distinctly different options, refer to Vic Gov’s Data collection standards - Lesbian, gay, bisexual, transgender and intersex communities (https://www.vic.gov.au/victorian-family-violence-data-collection-framework/data-collection-standards-lesbian-gay-bisexual)

 

  • Seek education and listen to the voices of people with lived experience to understand gender dysphoria and to appreciate the different experiences of gender dysphoria and health conditions and how they can intersect. 

 

  • Often people with PCOS are not recommended testosterone altering medication as there may be an increased risk of metabolic complications. Research indicates that for the Trans community with PCOS it is safe to prescribe gender affirming testosterone therapy and there is not an increased risk of metabolic complications. (Chan KJ, Liang JJ, Jolly D, Weinand JD, Safer JD. Exogenous testosterone does not induce or exacerbate the metabolic features associated with PCOS among transgender men. Endocrine Practice. 2018 Jun 1;24(6):565-72.)