I have been on testosterone since March 9th of this year.
Up until sort of recently, the changes have been great. I've had no complaints.
About a month and a half ago now, I started getting severe cramping— it reminds me strongly of the cramps I got when I was on my period, only ten to twenty times worse. I also bloat and feel generally unwell almost constantly. Eating is a struggle, as it's difficult to maintain an appetite with the pain.
Some days, it's bearable. Other times, it's so bad that all I can do is lay in bed, occasionally turn my head to vomit into a bucket or trash can, and pray for the sweet release of death. It's made working my job nearly impossible, as I work a very physical warehouse job, and I've had to take medical leave.
I was suspicious for a time that perhaps my body wasn't processing the testosterone well enough and the estrogen was winning over, and I was in for a sea of red, but it never came. My period stopped after the first month of T and it hasn't reappeared, thankfully. Blood tests at the doctor showed that my hormone levels were fine.
I went to my gynecologist, (who is very trans friendly, bless him) to get all of my reproductive goods checked. I've been warned by my doctor to get a hysterectomy within the first two years, and my therapist also stressed it to me and reminded me of Buck Angel's experience after putting it off for so long, but I didn't really expect to feel like this after only a few months.
They did ultrasounds, and the only thing they could really see was that the testosterone has made my ovaries shrink.
My gynecologist suggested that maybe interstitial cystitis could be the culprit and referred me to a urologist.. but I've never really had any symptoms like this up until now. I don't pee more than I'd consider average and I don't experience pain when I do, but he said he'd rather have me checked for other possibilities before going in surgically to find out what's wrong. He feels his hands are tied, as not only am I transgender, meaning he can't try to treat things the way he'd prefer to with hormones, but I also have Crohn's, making prescribing anything for the pain an option that isn't really on the table, lest he put me at risk for gastrointestinal bleeding and ulcers.

My questions are: Has anyone who is on testosterone had symptoms like this? What was your situation?
Does anyone on this forum have interstitial cystitis, and if so, what are your symptoms and how do you go about treating it?

Thank you very much to anyone who takes the time to read this and contribute to the discussion.

I had a very similar situation but mine included excessive blood. The pain was definitely what I would rate ten to twenty times worse, in fact I'm pretty sure that's how I described it. However I didn't go to a gynecologist or anything to have anything looked at. My primary doctor was made aware of this though and put me on the depo-provera shot. This helped with pain, mostly.., instead of experiencing it all the time, I would only experience pain when very aroused and/or after I orgasmed. which isn't fun but was better than just all day all the time. it helped with bleeding too and turned it into very light spitting. I'm no longer on depo now but was on it for two years and i think it helped calm my reproductive system down and to shut it down a big more

even though you don't have the bleeding issue maybe ask your doctor about it if this is an option you want to try, it definitely helped me

I wonder what it is that causes spontaneous cramps with or without blood after long term T. I've heard the idea that it's like the last "spasms" of the reproductive system as it is shutting down, but something must still be triggering it.

What are your T and E levels at? Just because your period has stopped doesn't mean that your E levels aren't higher than they should be. Atrophy and shrinkage of the reproductive organs is normal on testosterone, and could cause cramping as a result. But I don't think these kind of cramps are typically debilitating. Plus this would be the shortest amount of time I'd ever heard of someone being on T before claiming to need a hysterectomy for medical reasons other than dysphoria.

Has your gynecologist ruled out endometriosis? Just because there's not a period occurring doesn't mean everything else doesn't fit the bill.

While I can't answer your questions regarding interstitial cystitis or the cramps you're experiencing, I did want to say that there is no data that says one way or another that there is a need for FTMs on testosterone to get a hysterectomy in any set amount of time. I've heard people told by their doctors that by 2 years or 5 years, they should have one. There's no science behind that. It's a completely arbitrary recommendation. I'm in several bottom surgery groups online and there are guys there that have been on T for over a decade without a hysto, and have no issues. These recommendations should really only be made when patients start presenting with issues OR when they are preparing for other bottom surgery procedures.

I had major cramps starting about a year after I got on T. I had them usually around the end of the my shot cycle and just before my next one came up.  They were about as bad as my period cramps, which were horrific. But, I have a relatively high pain tolerance.  If you're in so much pain that you can't function then it may be something your doctors want to research further. I had the cramps pretty regularly up until my hysterectomy in July, which was around 5 years on HRT. My doctor and I agreed that it was the best move and I wanted it done anyway.  It just ended up happening a year earlier than I had planned. It turned out I had some pretty large cysts and my doctor thinks that was part of the problem. I was also undiagnosed PCOS so she thinks that it was why my cramps were so bad as a teen.

There isn't really a set timeline and plenty of guys get hysterectomies after the 5 year mark and plenty do it before.

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I know very little about all of this but if cramps happen/intensify at the end of a shot cycle, I'm assuming it's the reproductive system attempting to kick back in since the T level has dropped?

I want to use gel, not just because it's something I can control the application of and adjust the dosage of more easily, but also it would avoid the T drop at the end of a shot cycle. Seems less ideal to have a big peak and drop off of T rather than a constant steady influx which is closer to what biological males experience? Does anyone report the same amount of cramping issues on gel? Or a different pattern of it on gel/shots if they have tried both?

Quote from: FTMax on September 03, 2016, 01:41:50 PM
What are your T and E levels at? Just because your period has stopped doesn't mean that your E levels aren't higher than they should be. Atrophy and shrinkage of the reproductive organs is normal on testosterone, and could cause cramping as a result. But I don't think these kind of cramps are typically debilitating. Plus this would be the shortest amount of time I'd ever heard of someone being on T before claiming to need a hysterectomy for medical reasons other than dysphoria.

Has your gynecologist ruled out endometriosis? Just because there's not a period occurring doesn't mean everything else doesn't fit the bill.

While I can't answer your questions regarding interstitial cystitis or the cramps you're experiencing, I did want to say that there is no data that says one way or another that there is a need for FTMs on testosterone to get a hysterectomy in any set amount of time. I've heard people told by their doctors that by 2 years or 5 years, they should have one. There's no science behind that. It's a completely arbitrary recommendation. I'm in several bottom surgery groups online and there are guys there that have been on T for over a decade without a hysto, and have no issues. These recommendations should really only be made when patients start presenting with issues OR when they are preparing for other bottom surgery procedures.

I don't really know the exact numbers of the levels, but I was told by the nurse who had my blood work results that everything was normal and it was nothing to worry about.
My gynecologist did mention that my ovaries were smaller, but everything else seemed fine on the ultrasounds. There were no signs of cysts or the like.

I had amenorrhea for years before I was ever on testosterone, but I was also anorexic. That's the only thing I could think of contributing to my reproductive health being so awful already, but there's probably really no correlation, as my gynecologist has been seeing me for years and knew when I was suffering from that and has made no mention of it.

My gynecologist hasn't brought up endometriosis yet. He prescribed me Voltaren, and then when that didn't help, he put me on Elmiron, which hasn't helped yet. He's basically trying to make life bearable until the urologist can see me, but I just don't think that's the issue. Maybe I'm wrong, though. I'm hoping so.

My doctor suggested that I get a hysterectomy within 2 years the first time I ever saw him (and I have reason to believe he does for all of his FtM patients, as he told my friend this as well when I went with him as moral support when he got his first shot), and now he's really pushing for it. He probably feels it's better safe than sorry. Honestly though, I think it's all just grasping at straws because of how much I'm being affected by whatever is going wrong.

Quote from: Ayden on September 03, 2016, 02:15:51 PM
I had major cramps starting about a year after I got on T. I had them usually around the end of the my shot cycle and just before my next one came up.  They were about as bad as my period cramps, which were horrific. But, I have a relatively high pain tolerance.  If you're in so much pain that you can't function then it may be something your doctors want to research further. I had the cramps pretty regularly up until my hysterectomy in July, which was around 5 years on HRT. My doctor and I agreed that it was the best move and I wanted it done anyway.  It just ended up happening a year earlier than I had planned. It turned out I had some pretty large cysts and my doctor thinks that was part of the problem. I was also undiagnosed PCOS so she thinks that it was why my cramps were so bad as a teen.

There isn't really a set timeline and plenty of guys get hysterectomies after the 5 year mark and plenty do it before.

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I wish that were the issue, but I haven't really seen a pattern like that. I initially tried to attribute it to that, but the pain doesn't really stop, it's every day as soon as I open my eyes, to the moment I fall asleep at night. I have an extremely high pain tolerance as well, but this is enough that I soak my bed with sweat at night just because of the pain. My gynecologist was very up front with me when he told me he had no idea what's wrong with me exactly, but he's super caring and I know he's trying to find out. His best friend that he went to school with is apparently one of the top doctors for treating trans patients in my state, and he told me he was going to contact her and try to find out what he can about my symptoms. All I can really do now is bide time and hope for the best until I see the urologist or he has a "Eureka!" moment.

I'm glad to hear you have such a good doctor!  Hopefully they can figure it out. My doctor asked me if I wanted her to try alternative treatments or if I'd rather they do hysterectomy. I live in Alaska so our population is really small and turns out, there's really very few transguys in the interior, which meant that my doctor wasn't quite sure what else she could have done.

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I've heard a lot of contradictory stuff about cramping and what causes it from doctors which indicates to me that it hasn't properly been studied and isn't properly understood.

I was on another blog (I think it was ftm sex health, don't recall the exact name) and they said that testosterone can make your ab muscles a lot stronger and hence cause really painful cramps. For some folks it's painful cramps after orgasm.

Sometimes muscles just cramp because of electrolytes and stuff. Have you tried anything for muscle relaxation like eating foods high in magnesium and potassium and soaking in epsom salts or applying magnesium oil to your skin? Also, have you tried therapeutic massage? I did that for muscle spasm. The therapist kind of pulled my muscles in the opposite direction--it sort of hurt--and it resolved the spasm. If the drugs you were given haven't helped at all, I'd call around rehab places and see if there's someone skilled in massage for cramps and spasm. Also, have you tried icing the cramp? I know it's uncomfortable, but it's the standard advice next to ibuprofen, which I'm assuming you can't take.

Can you do pain killer patches, btw? I know they sell tylenol patches (which you put on your skin) in Canada, maybe this would be okay for Crohn's patients? (I don't know, but it does avoid intestinal tract.)

Quote from: AnxietyDisord3r on September 05, 2016, 08:04:17 AM
I've heard a lot of contradictory stuff about cramping and what causes it from doctors which indicates to me that it hasn't properly been studied and isn't properly understood.

I was on another blog (I think it was ftm sex health, don't recall the exact name) and they said that testosterone can make your ab muscles a lot stronger and hence cause really painful cramps. For some folks it's painful cramps after orgasm.

Sometimes muscles just cramp because of electrolytes and stuff. Have you tried anything for muscle relaxation like eating foods high in magnesium and potassium and soaking in epsom salts or applying magnesium oil to your skin? Also, have you tried therapeutic massage? I did that for muscle spasm. The therapist kind of pulled my muscles in the opposite direction--it sort of hurt--and it resolved the spasm. If the drugs you were given haven't helped at all, I'd call around rehab places and see if there's someone skilled in massage for cramps and spasm. Also, have you tried icing the cramp? I know it's uncomfortable, but it's the standard advice next to ibuprofen, which I'm assuming you can't take.

Can you do pain killer patches, btw? I know they sell tylenol patches (which you put on your skin) in Canada, maybe this would be okay for Crohn's patients? (I don't know, but it does avoid intestinal tract.)

I'm not sexually active, so I don't see that being the issue in my case. I kind of like to pretend I'm just blank from the waist down.

I drink a lot of coconut water and I have a relatively balanced diet, so I shouldn't be lacking in electrolytes. Crohn's makes it a bit difficult to manage them perfectly, but I can usually tell when I'm lacking in them because I get heart palpitations and leg cramps. This cramping just feels like the worst abdominal cramping ever, like something I would expect when I used to get periods, but way, way worse. I don't have a bath tub to soak in for the epsom salts, but I will try the magnesium oil. It certainly can't hurt, right?

I haven't tried massages yet, but if that's what it takes, it'll be my next step. I researched the Tylenol patches, but all I see are Tylenol brand precise heating patches. Is that what you're meaning? I have an electric heating pad I use on my abdomen and cuddle up with if so, but it only helps to a certain degree.

By the way, thank you for being so informative and giving me different causes and approaches to consider. It means a lot to me.

reviving this topic since i am getting this, too.
I am nearly 8 months on T and 6 days ago i started having this bad and severe cramping in my lower abdomen. Reminds me of menstrual cycle. I am not loosing blood. I did not have my periodi since last year. It's like having BAD menses (i never had this kind of pain, luckily) without bleeding. But since it did not get away, i am starting to worry. I am not 100% sure it's uterus, too, since it's a mixed thing between menses pain and intestinal pain.