LGBTQIA+ and Endo

LIVED EXPERIENCE FROM THE LGBQTIA+ COMMUNITY

EndometriosisWA collaborated with Freedom Centre to survey Western Australians with lived experiences to provide insight and advice on navigating living with endometriosis and pelvic pain as someone who identifies with the LGBQTIA+ community. Please be aware that sensitive themes will be discussed which some readers may find upsetting.

If you have felt it is difficult to access services for endometriosis, you are not alone. 80% of responders have experienced a negative interaction with a healthcare provider due to the provider’s personal views on sexuality. Another 75% found their gender negatively affected their ability to access healthcare to manage their endometriosis. Responders encouraged those in similar situations to seek another provider, however, for those using the public system, this is not always a feasible option with 75% of responders not finding health services that were understanding of their individuality. Further, 50% of responders who decided not to be a birthing parent, encountered problems accessing long-term or permanent contraception. Of these responders, some were working with a specialist to seek hysterectomy whilst others were still looking for help. Many responders experienced harmful assumptions and stereotyping leading to misdiagnosis, unnecessary testing and delay in appropriate treatment.

“I had sought support from a GP regarding an increase in endo symptoms, they suggested likelihood for Chlamydia (pelvic pain symptoms) despite knowing I was diagnosed with endo. I had recently broken up with a partner and they assumed it was a straight relationship and suggested that he may have cheated on me. When I corrected their gender, they essentially encouraged me to practice abstinence despite my initial concerns not relating to sexual activity at all and being directly related to increased pelvic pain. I completed the tests and tested negative to all tests. Eventually, I was able to find a GP that did not respond like this.”

Other responders reported distress and dysphoria when accessing services labelled for women, being constantly misgendered, and having no tailored information made available for them. Those that had found supportive providers, still faced some barriers most likely due to a lack of education and training or fear of a negative experience for the person.

“My GP is very sympathetic and is supportive of my gender transition. However, when I talked to her about pelvic pain she didn’t really engage. I was offered Ovestin Cream to help with vaginal atrophy, but no examination occurred. I think my doctor was sensitive to my body dysphoria and avoided putting me in situations that would have been distressing for me.”

If you are struggling to discuss endometriosis and pelvic pain with your current healthcare provider, please direct them to our website, or encourage them to contact info@endometriosiswa.org.au so we may refer them to appropriate training and education resources. Your healthcare provider will not reveal any identifying information to us and all discussion remains private and confidential.

Click the button below to download a form that you can fill out and give to your healthcare provider to update your patient medical file on how you prefer to be spoken to and addressed.