LGBTQIA+ and Endo
Endometriosis is often discussed in the community and media as a disease affecting women. While a large proportion of our community are women who identify as their gender assigned at birth, we know there is an increasingly recognised number of transgender men, non-binary people, and even cisgender men who live with endometriosis. There are multiple scientific studies supporting this, with evidence suggesting that the rates of endometriosis in transgender men with severe period pain are higher than in cisgender women with severe period pain1,2.
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.
TransFolk of WA is a not-for-profit that offers a word-of-mouth recommendation list for a range of healthcare providers and services that community members that have found to be trans friendly. Try not to let negative interactions with health care providers in the past or the fear of negative reactions prevent you from getting the care you need. You deserve to receive health care from a provider who is inclusive and competent.
Freedom Centre provides a range of support services for LGBTIQA+ young people in Western Australia, including a drop-in space in West Leederville, youth counselling, community development and consultation.
“I am a transgender man (AFAB) and it took a long time for my endometriosis to be taken seriously. I am 57 and have suffered with it since beginning menstruation. My yearly checkup with my endocrinologist was where it was finally addressed and she organised a pelvic exam, a referral for a pelvic ultrasound and a referral to a gynaecologist. I had previously had the endometriosis lasered off prior to menopause, but started having pelvic pain symptoms in the past 6 months. My advice to trans men would be to not ignore pelvic discomfort and to find a practitioner that takes it seriously and isn’t afraid to ‘go there’. It is a complex area for us because we don’t like that anatomy, so there is a psychological element, I believe. I clench in that area and that probably adds to the pain load. Being on testosterone usually renders endometrium inactive, but then there is vaginal atrophy that occurs, so pain in that area is probably due to more than one factor.”
There is no cure for endometriosis and treatments are aimed at stopping progression of the disease and reducing symptoms. A personalised approach with a multi-disciplinary team of health professionals is the current gold standard of care. Treatments may involve surgery to remove lesions, hormone therapy to suppress menses and medicines and allied health services to reduce pain and other associated symptoms. For many, a combination of these methods is used.
Trans men who choose to transition may be prescribed long-term regimens of testosterone therapy which will stop ovulation and menses. Analysis of tissue taken from trans men on testosterone and undergoing hysterectomy shows some participants had inactive endometrial tissue while others had active tissue. [3,4] Thus, it is possible that testosterone may not suppress endometrial activity in all individuals which is an important consideration for those with endometriosis.
Hysterectomies can be offered as part of gender-affirming care and will cure adenomyosis, a condition similar to endometriosis where endometrium-like tissue grows into the muscular wall of the uterus. However, it is important to know that a hysterectomy will not cure endometriosis and surgical removal of tissue via laparoscopy is considered to be the gold standard for diagnosis and treatment of endometriotic lesions. Not every surgeon who performs gender-affirming hysterectomy has training and experience to treat endometriosis, especially with extensive disease and lesions involving the bowel and bladder. It is important you discuss all options available to you with your treating doctor, understand the risks and benefits of each treatment avenue and make decisions together with your treating team and loved-ones. Your care should be tailored to your values, goals and needs as an individual, there is no one size fits all approach.
Physical therapy can help to regain function and improve participation in daily activities, reduce pain and help with additional symptoms of endometriosis. Pelvic floor physical therapists can help address common gastrointestinal symptoms that often accompany endometriosis such as bloating and abdominal pain by working on visceral (abdominal fascial and organ) mobility and with common urinary symptoms such as urinary urgency, bladder pain, frequency or incomplete emptying. Pelvic floor physical therapy can also address sexual dysfunction and pain.
Many of the responders in our survey found that psychology or counselling services delivered by an inclusive and competent professional, helped them navigate gender dysphoria and chronic pain.
NEWS STORIES FROM THE COMMUNITY
He Is 1 in 10: A Trans Man Shares What Life is Like With Endometriosis.
https://www.endofound.org/he-is-1-in-10-a-trans-man-shares-what-life-is-like-with-endometriosis
Managing endometriosis when you’re trans.
https://helloclue.com/articles/cycle-a-z/managing-endometriosis-when-you’re-trans
Trans, gender-diverse people with endometriosis fight ‘double battle’ against pain and lack of recognition.
ONLINE SUPPORT GROUPS FOR GENDER DIVERSE INDIVIDUALS
Endo Knows No Gend-O endoQueer Endo Siblings
- Okita F, Abrao M, Lara LAS, Andres MP, Cunha C & Oliviera Brito LG. Endometriosis in Transgender Men – a Systematic Review with Metanalysis. 2021;28(11):S103-S104.
- Shim JY, Laufer MR & Grimstad FW. Dysmenorrhea and Endometriosis in Transgender Adolescents. Journal of Pediatric and Adolescent Gynecology. 2020;33(5):524-528.
- Khalifa MA, Toyama A, Klein ME, Santiago V. Histologic features of hysterectomy specimens from female-male transgender individuals. Int J Gynecol Pathol. (2019) 38:520–7. doi: 10.1097/PGP.0000000000000548,
- Grimstad FW, Fowler KG, New EP, Ferrando CA, Pollard RR, Chapman G, et al.. Uterine pathology in transmasculine persons on testosterone: a retrospective multicenter case series. Am J Obstet Gynecol. (2019) 220:257.e1–7. doi: 10.1016/j.ajog.2018.12.021,