What are your endometriosis symptoms like?
The symptoms are only elevated 100 fold for me because I’m a transgender man. The mental pain and dysphoria I endure on top of my body feeling like it wants to destroy itself is brutal (while on extra strength Advil, Tylenol, and CBD oil). My pelvis will hurt so much that I sometimes drop to the floor, my chronic back and muscle pain is increased, and my body loses a lot more blood than the average person so I get very weak and faint but also risk leaking. I fill an extra large cup every 3-5 hours and going to work for 5 hours puts me on edge because I can’t change a cup in the men’s washroom, if someone saw I would panic. I’ve had lots of negative thoughts during these times, I wouldn’t say it’s exactly suicidal but I do wish and visualize that a huge sword would slam through my abdomen and slash it off. My chest also tends to get sore and hurt a lot, and since I wear a binder (basically a super tight tank top that flattens everything). It hurts quite a lot.
What was your journey to diagnosis like?
My family were the first to figure out I had it because I was bedridden so often during those times. Eventually I researched it more myself and spoke with my doctor about it. She basically told me that I probably do have endo but to suck it up because diagnosing it wont help anything change. That was a year or two ago. Recently as I’ve been working with phycologists and endocrinologists, I spoke up about it again to them as well as my doctor’s assistant (she’s nicer). Using the power of the excuse that I’m quite literally a man, I’ve finally been hooked up with a doctor who will aid my journey in getting a hysterectomy. Hopefully I don’t run into too much transphobia as I move forward in a very gendered medical world.
What has your experience with treatment for endometriosis been?
I have yet to be treated. It’s been a few years since I told my doctor about it and only now have people started to take me seriously. It will likely take years from now before anything even happens.
How does endometriosis affect your day-to-day life?
This disease has caused my life to become a living hell. I get dysphoria so I feel uncomfortable in my body more so than usual, leaving the house has become even more difficult for me, especially since the estrogen increase also heightens my voice. I risk leaking so I have to only leave home for a few hours at a time, and I risk fainting due to my chest binder on top of excessive medications, anxiety, and a lack of blood.
Going to work is scary during those times and I just pump myself up on meds and pretend I am ok but suffer silently, I can’t call off work because of it because of how gendered the disease is. If I told them I had endometriosis they’d be either confused or think I was insane. I also can’t exercise during those times because I am in too much pain and too weak, and again, risk leaking with one wrong move.
Thankfully this does not hinder my social life because I don’t have one. As a trans person it’s hard to meet people who will accept you, it’s hard to trust people. So most of my friends are online and I hang out with them when I am stuck in bed. Another problem I face is that I cannot wear a pad to help prevent that leaking from causing more issues. Pads give me dysphoria but also cannot fit in a pair of boxers, trust me I’ve tried. So I need to just rely on the suction of the cup and cross my fingers I don’t make a fool of myself. That fear of being outed as trans with blood is horrific to me.
How does endometriosis affect your emotional well-being?
Oh god the mental anguish I endure. Again, being trans does NOT help. I get dysphoric about my body, my voice gets higher, my chest hurts so I think about it more. My anxiety goes through the roof I am constantly on edge about whether I am gonna leak, if I am going to faint, if I am going to run out of pain meds/they wear off before I get home. I get mood swings around my girlfriend and I feel so bad afterwards I am glad she deals with me though. I can’t sleep and if I do, I wake up in a pool of blood with barely any shuteye sometimes which makes me feel horrible. I get depressed, I can’t move or work on my art for clients. And I cry a lot. I often wish I could chop out my abdomen with a knife and imagine it in quite some detail.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Endo has caused my life to basically just become hell on top of being trans. I feel that being trans was a bigger hinderance than the pain and it just felt like another anomaly in my body to set me back that came with being different. I have not yet decided to go to college/university due to a worry over my body not being about to handle the pain of endometriosis as well as wearing a binder for hours on end. I’ve made a job work for me that I can do from home, I am an artist and it makes pretty good money and makes me really happy, but also work part time retail just to get out of the house a little because if I wasn’t forced to, I’d stay home 24/7. Being trans has made me weary of meeting new people and having endo, again, doesn’t help. I currently only have one friend in real life, who I hang out with from high-school. When new people ask to meet up I can’t bring myself to. It drains the little energy I have left. I have a girlfriend but she’s also trans and will never quite understand what I am going through but she tries her best to sympathize. I haven’t yet gotten to meet up in person due to my dysphoria and fear of random periods starting up when I am there. When I get my surgery and more hormone treatment I will be going to visit, and hopefully my testosterone will cause the endo to alleviate a little bit or take it away completely.
How have you found hope and support in your endometriosis journey?
No one has really supported me in my endo journey except for my doctor’s assistant, my girlfriend, and my parents. Because I am trans I can’t go around telling people about it because it would out me, so like I’ve said, I just suffer in silence unless I am at home.
What do you think healthcare for endometriosis in Canada should look like?
The healthcare system needs fixing. We need more studies on women’s health AND trans health. Too many women and trans individuals are discriminated against or just not listened to by healthcare providers. I was denied service from my doctor when it came to changing my gender legally, I was denied service to being given a phycologist and had to find one on my own by calling countless government agencies, I managed to find the only phycologist in town that was qualified to even begin to help me and even then I had to help educate her on my situation and she had to go out of her way for me and work with people outside of the province. My doctor took too long finding me an endocrinologist (I waited over 7 months) so I had to find one on my own by calling around and booking my own appointments, my doctor denied me help with my endometriosis and played it down telling me to deal with it, my doctor openly misgendered me multiple times and asked invasive questions about my validity as a trans person and (for no medical reason) asked about the size of my chest under my binder. I was told that I likely won’t be allowed to get a hysterectomy for years and I’ve heard countless stories of people being flat out denied one, such as my aunt. A lot of it is to do with sexism over « womanhood » and having kids, but as a blessing and a curse I have the excuse of being a man who has a phobia of children which has moved things along farther than most people my age would get. But it has been a real struggle getting myself the help I need and things really need to change.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
As bad as it feels sometimes, we are lucky to have the free healthcare we get. I couldn’t even begin to imagine the struggle of paying someone thousands only to have them deny you help or treat you like you’re making things up. In a perfect world things would be better for us but for now instead of paying money for our help we have to just work a little harder to find the people we need.