Genderqueer 2 genderqueer's Blog

testosterone and Interstitial cystitis in trans men, we need case studies

Posted in Uncategorized by genderqueer2genderqueer on December 2, 2012

I am back on testosterone, on a low dose, because I have a mood disorder and nothing else I have found works half as well as it.

I have Interstitial cystitis, I was first developed symptoms when I started HRT the first time around, and the pain of it, and the four or so doctors who couldn’t give me any answers, was one of the reasons I stopped taking T, now I am back on it, and have had a major IC flare up, I worry that this connected and I will have to choose between the body I want and becoming best friends with the toilet door.

As far as evidence goes, I found nothing. I found the oh so helpful Donna commenting here.
Part of me just wants to join the forum to tell her

1) Find me a gender doc who knows fuck all about IC, or a urologist who knows fuck all about trans issues and I will go see them.

2) The forum shares medical advice all the time, hell even about testosterone therapy and I didn’t see you telling cis people they need to talk to their doctors.

Breath man, breath.

Ok look, I am a trans guy and I have IC and testosterone seems to make it worse. For all the limits of case studies, I couldn’t find anything in the literature about trans guys getting bladder problems, but if I missed something or if I find something later I will post it.

For now I don’t know if my situation is rare? I talked to another trans guy who had what sounded exactly like IC but he had been fobbed off by doctors and never got diagnosed. Maybe a lot of trans guys get better on T but what I do know is that there is one more case study out there now then they was before I wrote this post, if you have come hear seeking answers, I wish I had them, for myself more than anything, I am sick of the pain, and the urgency, and the rest of it.

If you have experience of this, please comment, let me know what you tried, and what worked and what didn’t. In a data free world every data point is important, shorter cycles? longer cycles? Creams over shots? What helped you? Are you a trans women or maab trans person whose IC symptoms have changed after HRT? With two rare conditions* there is very little medical evidence about us, but there is an internet full of people, just some of them might be trans people in pain, on the toilet right now.

*if you see your trans status as a medical condition of course.

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3 Responses

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  1. anon said, on July 15, 2015 at 4:05 pm

    Hi, I’m well aware that this is old and I really hope you found a solution. I have had problems with cystitis since I was 16, so now over 20 years but I do think testosterone (I had gel) made it a lot worse. I tried everything from antibiotics every night, oestrogen cream in the area, various teas and homeopathic remedies, washing everytime after using the loo and it didn’t help much. The washing obviously is good practice and I think using a fragrance free wash for that area has helped but regretfully I have stopped hormones.

  2. Kris said, on March 12, 2016 at 6:40 am

    Hi, I know this post is old, but I am a trans man who has IC. I am thinking about starting testosterone soon, and was wondering if you had ever found out any more information?

  3. skernblog said, on July 11, 2016 at 6:33 am

    This is crazy. I am also FTM experiencing the same symptoms. I’ve been on testosterone for nearly five years but I’ve just recently started getting similar symptoms these past six months. My doctor said it sounds like interstitial cystitis and has referred me to a Urologist. I won’t have any more to add until after my appointment, but I just wanted you to know that you’re not alone.


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