What are your endometriosis symptoms like? Stabbing and twisting pain — it feels like all the organs in my stomach are being pulled out of position.
What was your journey to diagnosis like? I never had easy periods, but thought it was just normal menstrual cramps. In my early 20s I had sudden abdominal pain so severe that it knocked me off my bicycle. I went to hospital thinking it might be appendicitis. Exploratory surgery revealed endometriosis.
What was your experience with treatment for endometriosis been? When I was first diagnosed through surgery nearly 30 years ago, I wasn’t told about any treatments, just that this would be lifelong and the only thing I could do was have a baby — something I was completely uninterested in. I had another surgery a year later to remove an ovarian cyst and more adhesions. Five years after that I started taking testosterone as part of gender transition, and that stopped my menstrual cycle. After a few years on testosterone I decided to stop taking it due to side effects, and the pain came back as my menstrual cycle resumed. After discussing with my doctor I started taking Danazol but it didn’t work well for me. After more years with pain, I was diagnosed with another ovarian cyst and at that point decided to have my uterus and the damaged ovary removed. It was amazing to live life without pain for the first time in 20 years. Since then I obviously no longer have periods, but I still have one ovary and a few years ago started to have monthly pain again, which I assume is from tissue that had already implanted in my abdomen before the hysterectomy (when I had the hysterectomy I was told I might still have endometriosis after). I’m nearly 50 and am having hot flashes and other symptoms of menopause, so hopefully this will be over soon. My GP is amazing and I am very fortunate to have a doctor who has taken my symptoms seriously and thought about how to make this work for me as a transmasculine person. The gynecologist who I saw tried his best but the reality is that all of these services are set up for cis women, there are a lot of assumptions about who is affected and it was painful for me to sit in the gynecologist office with cis women staring at me, or having to negotiate having my own recovery room in the hospital so when they discussed my surgery I didn’t have to deal with ignorant comments. Having a clinic located at a Women’s Hospital isn’t helpful to me or other trans men, transmasculine people, and non-binary people who have endometriosis. I am sharing my story so other people in the same situation know they’re not alone.
How does endometriosis affect your day-to-day life? Some days all I can do is lay flat and deal with pain management. I try not to take painkillers and manage in other ways, as I don’t like feeling groggy. Sitting up makes the pain worse. It also sometimes affects my intestinal functioning so I need to be near a toilet.
How does endometriosis affect your emotional well-being? The pain can definitely wear me down, but after so many years I’ve learned to cope okay enough. I’m not ashamed of my life experience or of having endometriosis, but it really wears me down that I have to deal with other people’s ignorance, assumptions, and discomfort with talking about this because of societal assumptions about sex and gender. Yeah my name is Joshua, I have facial hair, and I have endometriosis… get over it already!
How has endometriosis shaped turning points in your life up until now and looking toward the future? My decision to go through gender transition when I was 25 — which for me included temporarily taking testosterone, changing my name and ID, and having chest surgery — has nothing to do with having endometriosis. I did that to be who I am. But when I was deciding about having my uterus, cervix, and one ovary removed, a lot of health professionals assumed this was part of gender transition not because of endometriosis. I find it ironic that as a trans person I had to work so hard to prove who I was and qualify for approval for a surgery that at the time I didn’t want, but then when I wanted it years later for a different reason, I had to fight for it again because this is assumed to be a problem that only affects women.
How have you found hope and support in your endometriosis journey? I’ve had three surgeries for endometriosis and each time there were people who cared for me, looked after me, and helped me recover. I am grateful for their support and care. But it also brings up all the times I wasn’t treated well, and all the support I’ve provided to other transmasculine people. Ever since going through gender transition 25 years ago I’ve been completely open about who I am, because my family, GP, and other people in my life have been accepting. That support is amazing and definitely helped me deal with the discrimination and ignorance I’ve faced along the way. But other people can’t be open like that, it’s not safe. I worry about trans guys and non-binary people who avoid seeking medical care because they’re tired of being treated badly, aren’t safe if they out themselves as having endometriosis, or don’t have an option to get decent quality care. When I get treated well by hospital staff I often cry because so many times I haven’t been. It’s too low a bar, someone treating me like a human being shouldn’t be applauded for doing their job. especially for people who are marginalized in multiple ways and facing not only trans-antagonism but also racism, ableism, fear of people who are visibly poor or assumed to be using illegal drugs, and a colonial health system that doesn’t value Indigenous ways of being. I feel frustrated that so many support groups and other resources make assumptions that this is only an issue for cis women, with names like « Hyster Sisters » or other gendered terms. It doesn’t have to be like this, cis women can get their needs met without excluding other people who also share the same condition.