Susan's Place Transgender Resources

Hi guys,
So I've been going back and forth lately about whether or not I want to transition in the future (currently not out and also living with my parents so I'm hoping I'll be able to move out someday) and one of the things that keeps holding me back is that I have several chronic illnesses that I worry would make transition even more complicated than it already is.

1. I have chronic migraines and I've heard that testosterone can cause/exacerbate migraines.

2. I have an autoimmune disease called spondyloarthropathy that causes inflammation in my joints and tendons, especially in my spine which makes binding really difficult (and I have a pretty large chest).

3. Because of the spondyloarthropathy I'm on immune suppressants which means that I can't have surgery unless I go off my medication. I'm not sure how long that would be for but my guess is at least several months. So the only way I could get top surgery would be to stop my medication, which would mean even more pain.

I'm just wondering if anyone else here has transitioned with chronic illnesses and if anyone has any advice. I get really depressed thinking I may not be able to transition (which does make me feel more certain about wanting to. I mean, I wouldn't feel this depressed or anxious about it otherwise, right?).

Hi Jonathan,

I have fibromyalgia and transition has actually helped me in a lot of ways. My doctor and I talked at length about my condition and how I was doing prior to starting HRT. She almost always starts people on a low dose, and I think that definitely helped me ease into things. I'd encourage you to try to find a doctor who is comfortable handling all of your health concerns, including your transition. I think this was instrumental in helping me be successful.

(1) In general: I was diagnosed with fibro when I was 21. I had at least one flare per month, sometimes more if I was stressed. I started T at 25, promptly lost 20lbs and dropped my body fat by 10%, and didn't have any flares that weren't seasonally affected. I've been on T for over a year now, and the only flares I've had were weather related. I still have some very mild aches and pains when I'm overexerted, but I'm no longer at the mercy of my condition.

(2) Migraines: I had migraines with my flares, so in my experience, these have gone down.  Like I alluded to above, if I get any, it is mostly related to the weather/barometric pressure. I can't control the weather, but it's a huge improvement over what it was, so I'll take it.

(3) Binding: I was binding for almost a decade by the time I got top surgery. It was miserable, but I had awful insurance and no money until very recently. I'd be very gentle with binding. I have some numbness to my sides/back from doing it so long term. Top surgery was actually a huge relief for me. I'm not sure how long they would have you go off your meds for surgery. For most things, I had to stop them 2 weeks in advance, but could immediately restart the day after surgery. Personally, I'd rather take a more intense bout of pain at once than have to deal with binding in the long term. It would be a question for a surgeon though. I'm not 100% on what medications need to be stalled.

If you have any other questions or if I can clarify anything for you, feel free to ask.

Thanks so much for your response! This is really encouraging. Did you eventually go on a higher dose of T or did you stay on the low dose? That's awesome that you were able to lose weight on T. I've been scared of gaining weight on it because I'm already heavier than I'd like to be and excess weight really doesn't help with the joint pain. You make a really good point about top surgery, too. If I'm going to be in pain better to have more pain for a short time and get surgery than have the pain and possible complications of binding.

Yes! I stayed on a low dose for a month, and then switched to a regular dose. She always starts people on a low dose because of the fatigue that people often get when they start HRT, but in my case, she wanted to make sure that it wouldn't exacerbate any of my existing symptoms. I started on gel, which may be easier to manage than injections if you have any kind of tissue inflammation or pain near injection sites (just a thought - I switched to shots and had no issues despite a lot of leg pain).

I'm actually in the best shape and health of my life right now, so don't lose hope! I had to make a bunch of other lifestyle changes, but ultimately they've all helped me be much more pain free.

I definitely wouldn't see your condition as a roadblock to HRT and transition - a speedbump, maybe. Just get used to advocating for yourself if you aren't already.

I never had any serious illnesses, but I had chronic eczema and do not suffer from it anymore AT ALL. Eczema can be stress-related, so a couple of people have suggested that my remarkable recovery was related to the whole transition and not the T. I've thought about this myself, but my skin was in the process of clearing while I was still stressed out of my gourd--living alone for the first time in my life, separated from my partner of twenty years, unemployed, filling out divorce paperwork, even suicidal...I'm pretty sure that it was the T.

I don't know much about migraines, but I do know that many more women than men get them and that many women have flare-ups related to hormones/periods. It seems to me that you would have much better prospects on T than on E. Who told you that T can aggravate migraines?

I have ulcerative colitis. This is also an autoimmune disease, though it is currently managed on lialda which is not immunosuppressive. My flares of ulcerative colitis were dependent on a lot of factors. One of those factors for me was hormonal fluctuations.  Since starting on T, that has been much much better for me. My medication for UC is pretty pricy, even with insurance, so there have been a few times I've been off my meds for a while. Before T, those periods would be horrible with flaring up. Since going on T and stabilizing, when I have been off my medication, it is still inconvenient but it is probably only 10% the severity level of before.

I am lucky in that my disease has not progressed so far that I have to be on immunosuppressive medication. So my surgeries have not required me to be off my medication. However, I'm sure that that is something you can discuss with your surgeon and the provider you see for your condition to determine what options you might have.

I have an autoimmune disease and have been on heavy immunosuppressants (currently theyre messing with my meds and dosage as I'm getting over a bad flare, hospitalized for two weeks). Definitely talk with your doctors and make sure, but I've had no problem with taking testosterone and ive had a laproscopy (for endometriosis) and breast reduction done while on my immunosuppressants and had no issues. I did talk with my doctors and we took precautions. Testosterone has helped with a few small things like my anemia.

You could easily be fine.

Sorry for the delayed response. Was out of town all weekend. It's really intriguing how many of you have noticed some health stuff improving on testosterone and comforting to hear that none of you feel worse.

Quote from: Arch on January 29, 2016, 12:40:21 AM
I don't know much about migraines, but I do know that many more women than men get them and that many women have flare-ups related to hormones/periods. It seems to me that you would have much better prospects on T than on E. Who told you that T can aggravate migraines?

That's a really good point about migraines and hormones/periods. I'm not sure where I heard that T can aggravate migraines. I think I was just looking online and came across a few transguys talking about how T made their migraines worse at first. But maybe their bodies just had to adjust?

Quote from: Lorlor on January 30, 2016, 12:28:20 PM
I have an autoimmune disease and have been on heavy immunosuppressants (currently theyre messing with my meds and dosage as I'm getting over a bad flare, hospitalized for two weeks). Definitely talk with your doctors and make sure, but I've had no problem with taking testosterone and ive had a laproscopy (for endometriosis) and breast reduction done while on my immunosuppressants and had no issues. I did talk with my doctors and we took precautions. Testosterone has helped with a few small things like my anemia.

It's really encouraging to hear you were able do some small surgeries even with the immunosuppressants. My doctor just made such a big deal about going off meds before any surgeries. I'm definitely going to ask her to be more specific about how long I'd need to be off my meds before and after so hopefully that will ease my mind.

Thanks, everyone!

I have either fibromyalgia or lupus (rheumatologist hasn't determined which yet since it's not my only chronic condition), type 1 cataplectic narcolepsy, mild spinal deformity causing my ribs to be asymmetrical, am on thyroid replacement hormones for the rest of my life after needing it removed from cancer, and get migraines as well.

Estrogen is associated with a lot of autoimmune and chronic pain conditions so it doesn't surprise me T improved things for others but it does give me a lot of hope that if my endocrinologist gives a green light for T I'll physically improve enough before I would be able to have surgery making it less difficult to go through. I don't want to lose all my hair right away since it's thin from thyroid issues already.

I'm on a long list of medications I'd like to shorten, especially things like opioid pain killers I'm already physically dependent on since going off those alone will be a nasty withdrawal period even after tapering to the lowest dose. Going off of a medication is a scary thought though when you compare it to how your condition was unmedicated.

Pain wise, it will be up to you whether the pain of stopping your medication is going to be greater or less than the pain of binding long term. Binding actually helps my back, I wore corsets in another life for the same purpose but long term restriction of bloodflow flares my joints and makes the Raynaud's in my hands/fingers worse the longer I've had the binder on. I'm not small chested either but I can get reasonably flat for a few hours out of the day before I have to put on something looser. Luckily winter means more clothing layers so I can get away with binding less tight during the colder months. I sew a lot so I've been working on drafting a pattern for a comfortable binder that works around my conditions. The fabric I decided on is a very strong spandex/lycra blend much softer than the Underworks 997 model's mesh which was one thing I couldn't handle, it gave me terrible rashes and cut into my underarm area.

Being trans is a scary detour when you already deal with a lot medically every day but for a lot of us the detour ends up the easier route. You're already a lot stronger than you realize getting up every day to live through what you do. It usually sounds like a bunch of feel good crap when I hear it said to me until I start talking to others with chronic illnesses and realize it's true.

Quote from: Ciaran on February 04, 2016, 09:02:58 PM
Estrogen is associated with a lot of autoimmune and chronic pain conditions so it doesn't surprise me T improved things for others but it does give me a lot of hope that if my endocrinologist gives a green light for T I'll physically improve enough before I would be able to have surgery making it less difficult to go through. I don't want to lose all my hair right away since it's thin from thyroid issues already.

I am really curious about this, too, Ciaran. I hope they do give you the green light and you can report back to us! Do you think you'll be able to get on T soon or do you have to wait?

Quote from: Ciaran on February 04, 2016, 09:02:58 PM
Being trans is a scary detour when you already deal with a lot medically every day but for a lot of us the detour ends up the easier route. You're already a lot stronger than you realize getting up every day to live through what you do. It usually sounds like a bunch of feel good crap when I hear it said to me until I start talking to others with chronic illnesses and realize it's true.

I agree. Part of me doesn't want to have to deal with even more complications, but at the same time I am so used to having to navigate complication in general that it doesn't feel overwhelmingly impossible, if that makes sense. I've certainly had to do a lot of self-advocating already as a chronically ill person.

Quote from: Jonathan L on February 06, 2016, 05:17:27 PM
I am really curious about this, too, Ciaran. I hope they do give you the green light and you can report back to us! Do you think you'll be able to get on T soon or do you have to wait?

I agree. Part of me doesn't want to have to deal with even more complications, but at the same time I am so used to having to navigate complication in general that it doesn't feel overwhelmingly impossible, if that makes sense. I've certainly had to do a lot of self-advocating already as a chronically ill person.

I'm not sure when I'll be able to start T until I see my endocrinologist in another two months. I've hesitated because I'm so scared my hair will start thinning right away, I was hoping it would thicken up before I started since thyroid related hair loss is supposed to be reversible once everything is under control. My levels have been normal for a while but my hair hasn't improved so she's looking into hypopituitarism or any other endocrine deficiency that causes hair loss. If it's lupus hair loss then I'm crap out of luck but I don't have to hesitate anymore about T. I'll update when I know more though if you do the same :) Please feel free to message me anytime too, it's nice to meet another guy here dealing with chronic illness as well as transitioning.

It absolutely makes sense. You get used to dealing with things every day as part of a routine some healthy people are terrified at the thought of. I was relieved to get my last diagnosis because it's less scary to me to know why a certain symptom is happening. I can't count how many times I've sat in a waiting room wondering "is this forever now?". I've self advocated a lot but have been lucky to have my mother on my side as well there. I'm planning to go to school for pharmacological chemistry if my health allows next fall so it's frustrating when I know more about my medications and treatments than some of my doctors in the past ::) It makes me feel better knowing exactly how a medication works and what it does to my body/brain if I have to take it everyday too.

Oh man, I can definitely understand wanting your hair to grow back before you start T. I hope it does just end up being from the thyroid issue. I'll try to update! Unfortunately, because of my health problems I'm currently living with my parents and they don't know I'm trans so...yeah...I'm trying to get my act together so I can move out at some point and transition. I'm just wary about coming out to my parents when I'm financially dependent on them. Sigh. Trying to stay optimistic about the future though.

I can't really say a whole ton on this particular topic, but I do co-mod a queers with disabilities tumblr page. A decent chunk of the followers are trans and are having issues with transitioning physically that are related to their disability. You might want to check it out, and feel free to post there.

That sounds awesome! What's the link?

Quote from: Jonathan L on February 12, 2016, 10:41:25 PM
That sounds awesome! What's the link?

http://queerswithdisabilities.tumblr.com

Thanks!

I have M.E quite severely, am mostly housebound. I too had heard how T was gonna do magical things for this part of my life and every endo and doctor I spoke to wholeheartedly agreed and put me on a full dose of testosterone (the gel). They really shouldn't have done this. I was so ill, the fatigue was awful and i felt i was going crazy, my thoughts raced and i was having severe anxiety attacks from it, muscle cramps, muscle pain etc. I had to go off it for 6 months to bring me back down to a baseline and then start again slowly. Thankfully I am ok now,i gradually went up with my T as i could handle it. i notice no health improvements M.E wise but at least its not making me iller, its just doing its job helping the dysphoria! It did just set me back a long way. I'm mostly concerned about Top Surgery now, as they dont seem to consider M.E a real thing half the time, i just get told I will be fine as its "just fatigue" but i have a lot of concerns about recovery after surgery so if anyones got any advice on that too!

Quote from: j612 on February 17, 2016, 07:45:32 PM
I have M.E quite severely, am mostly housebound. I too had heard how T was gonna do magical things for this part of my life and every endo and doctor I spoke to wholeheartedly agreed and put me on a full dose of testosterone (the gel). They really shouldn't have done this. I was so ill, the fatigue was awful and i felt i was going crazy, my thoughts raced and i was having severe anxiety attacks from it, muscle cramps, muscle pain etc. I had to go off it for 6 months to bring me back down to a baseline and then start again slowly. Thankfully I am ok now,i gradually went up with my T as i could handle it. i notice no health improvements M.E wise but at least its not making me iller, its just doing its job helping the dysphoria! It did just set me back a long way. I'm mostly concerned about Top Surgery now, as they dont seem to consider M.E a real thing half the time, i just get told I will be fine as its "just fatigue" but i have a lot of concerns about recovery after surgery so if anyones got any advice on that too!

Check the top surgery recovery thread. Guys post their results, surgery details, and recovery stories there. My recovery was uncharacteristically easy, so I'm probably not the advice giver you want :)

Quote from: j612 on February 17, 2016, 07:45:32 PM
I have M.E quite severely, am mostly housebound. I too had heard how T was gonna do magical things for this part of my life and every endo and doctor I spoke to wholeheartedly agreed and put me on a full dose of testosterone (the gel). They really shouldn't have done this. I was so ill, the fatigue was awful and i felt i was going crazy, my thoughts raced and i was having severe anxiety attacks from it, muscle cramps, muscle pain etc. I had to go off it for 6 months to bring me back down to a baseline and then start again slowly. Thankfully I am ok now,i gradually went up with my T as i could handle it. i notice no health improvements M.E wise but at least its not making me iller, its just doing its job helping the dysphoria! It did just set me back a long way. I'm mostly concerned about Top Surgery now, as they dont seem to consider M.E a real thing half the time, i just get told I will be fine as its "just fatigue" but i have a lot of concerns about recovery after surgery so if anyones got any advice on that too!

Yikes! I'm so sorry you had to go through that. I have a few friends who have M.E. and it definitely makes everything much more difficult for them. I think this is a good reminder that starting on a low dose of T for people with health problems is really good idea. Have you been able to work up to a full dose or are you still on a low dose? I imagine as far as top surgery goes it would probably take your body longer to recover from. So it may just be something you have to do and then plan for a much longer recovery from. Do you know any doctors that specialize in M.E.? Maybe they could give general advice on recovery from surgery?

I would probably say i'm on the lower side but thats ok with me going gradual, as long as i never feel that ill again, going slow is absolutely fine! Its just like being a few months behind, so i'm 8 months but probably look/sound 5-6 months still. Its still happening, just slower :) i guess i will take a long time to recover from surgery, its just scary cos ive never had anaesthetic either so i'm goin totally into the unknown in all ways! Unfortunately i've rarely met a doctor that can fully help or give advice. I dunno if we can mention doctors names specifically? If i do anything please delete but if anyone with a chronic illness in the UK can see Dr Lorimer, he was by far the most understanding and the best person ive seen through the whole process, shame they all arent like that on the more medical side as i think he mostly deals with the psychological aspect of transitioning :)

Quote from: j612 on February 18, 2016, 10:29:37 AM
i guess i will take a long time to recover from surgery, its just scary cos ive never had anaesthetic either so i'm goin totally into the unknown in all ways! Unfortunately i've rarely met a doctor that can fully help or give advice.

I definitely know what you mean about going into the unknown and about how hard it is to find doctors who understand your medical condition. It took me 9 years to get a diagnosis even though this form of arthritis isn't rare. It's just no one seems to know anything about it. Anyway, I'm sorry you have to go through all this uncertainty too. But glad the lower dose of T is helping.

Thank you for making this thread!
I have a few undiagnosed chronic illnesses myself, which has made it very hard to get the ball rolling in my transition. After awhile of people telling me it might get worse on T I just decided that, eh, well at least my mental state will be better. I'm glad to hear that there are people out there who have successfully transitioned while having chronic pain or illnesses. Gives me a bit of hope for the future.


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Quote from: Mitternacht on February 23, 2016, 05:22:13 PM
After awhile of people telling me it might get worse on T I just decided that, eh, well at least my mental state will be better.

I'm starting to feel the same way myself, especially since I'm going to have these illnesses no matter what I do. Might as well try to improve my mental health. And I'm sure the anxiety and misery of struggling with dysphoria and hiding in the closet isn't helping my physical health. I certainly haven't been sleeping well.

I'm glad you made this post!  I have lupus so it's good to see that others with chronic illnesses have gotten a lot better. I'm also a science major so seeing this drastic change is very intriguing. A lot of autoimmune diseases affect women more so seeing a lot of you guys get better once on T is interesting. I know for things like lupus they don't know what causes it but maybe it's just low levels of T so once you introduce more into your system it functions normally. Or it could be a genetic mutation in the autoimmune system that misfires because it thinks that you should have male levels of T but have normal female levels of T. I'm really interested in this now!

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I know what you mean, haeden. I wish there was more info and research about everything regarding HRT but it would be especially interesting for me to know how it affects those with chronic illnesses. It's ironic because the arthritis I have is more often diagnosed in cis men, but because I'm AFAB it took ten years to get a diagnosis. So that's sad, but also kind of validating. Like, see? Even my joints think that I'm a man, lol.

Quote from: Jonathan L on February 28, 2016, 07:16:56 PM
I know what you mean, haeden. I wish there was more info and research about everything regarding HRT but it would be especially interesting for me to know how it affects those with chronic illnesses. It's ironic because the arthritis I have is more often diagnosed in cis men, but because I'm AFAB it took ten years to get a diagnosis. So that's sad, but also kind of validating. Like, see? Even my joints think that I'm a man, lol.

Haha yeah it's like your body just confirming your manliness! I wish your body could prove it in a different way but hey it's just one more thing to keep ya going. I know I do that for things all the time like when my female friends say I'm a guy when it comes to relationships even though I haven't been in one lol

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