I waited patiently for my partner to come out of the doctors room. It had been a rough few months of him suffering with unexplained pelvic pain, rendering him completely immobile on a sometimes daily basis. When I asked him what it felt like, he described it as a phantom menstrual pain (or 'pain pain', as we nicknamed it). Naturally, we were both concerned with the cause of this as he has been taking testosterone for over five years and his pain was gradually getting worse. Furthermore, this pain only deepened his feelings of dysphoria that, ideally, do not need to be provoked.
He finally was released from the room and I immediately asked what the doctor thought was wrong. My partner had been correct. The doctor told him that he is experiencing these phantom pains as a result of his body being on testosterone for so long. In other words, his reproductive organs were saying, 'Hello up there. Don't know if you've forgotten about us, but we would like out now please.'
So what was the solution? He needed to have a full hysterectomy as soon as possible.
I thought for a moment what it must be like to be a transman and experience extreme dysphoria and agony as a result of this type of pain. As a person with a uterus, I know the unnecessary shame and great discomfort this type of pain can cause others; the purchasing of sanitary tissues in front of store clerks, the various vulgar slurs thrown at people during 'that time of the month', disguising cramping as a stomach ache around friends and family, and so on. Now what if you were a transman? It's already evident that most of these men go through double the shame of others during initial puberty; the 'out of body' experience must be excruciating. Now imagine that you've been transitioning for years and gone through all the happiness of having a 'second puberty'-your voice changing, body hair growing, shoulders broadening-and then suddenly you wake up with a pain you never thought you would have to face again.
Immediately after hearing my partner's diagnoses, we both took to the internet to find other transmen who have experienced this type of pain and what they did to ease it. After hours of looking, we couldn't find anything. Literally, there was nothing. No information on others like my partner with pain, what we could do for it before surgery, not even what transmen experienced during hysterectomies. Nothing. We were left feeling isolated and lost. Was he the only one having this? Is it life threatening? Does it go away eventually?
Fortunately, about three months after his appointment, we bumped into a friend of ours who is FTM. We mustered up the courage to ask him if he had ever experienced this. To our shock, he reported having the same type of pain after being on testosterone for years. What?! Really? We were relieved but still questioning. Why isn't there any information about it? The answer came to us when this friend mentioned how uncomfortable it made him feel to talk about it and how he would take time off of work just to avoid feeling that way around cisgender men; he didn't want to be reminded of who he once was or what was still inside of him. He further told us that he has met other transmen who also have this pain. Clearly, shame and embarrassment plays a major role in transmen not wanting to share their experiences.
So what can you do if this is happening to you? We have learned of the higher risks of cancer if a hysterectomy is not completed after five years of being on testosterone. However, we have also learned how difficult it is to get a hysterectomy for transmen. We have been battling for eight months so far with doctors to perform the surgery and have encountered many excuses as to why they won't. Discrimination is the largest reason to date.
Our advice? Never stop fighting for your surgery, if it's a fight you have to have that is. Pay attention to your body while on testosterone and report any pains that may arise. Reporting this pain gives you a record of your efforts to get help if you are being denied a surgery. Seek out support from friends and family, if possible, and ensure that someone is aware of what you are going through. Most importantly, share these experiences with other transmen. The more support and help that is gained from the FTM community, the greater amount of awareness can be made for others like my partner.
We thank our friend for his permission to speak of his experience in this article and hope that other transmen feel less in the dark about this silent struggle.