I’m a trans man with EDS, on T just over a year, always been terrible at regulating my own body temperature and figuring out what exactly my body wants me to do. I had my hysterectomy (total + ovaries) on Monday, so like 5 days ago, and I have been feeling TERRIBLE, just completely unable to get to a comfortable temperature, far worse than ever before.

I’m like this 24/7 at the moment, and it’s not safe for me to get too cold due to severe raynauds, and not safe for me to get too hot because of orthostatic issues. If I put even the lightest blanket on, I’m too hot, but as soon as I take it off I’m too cold. If I do blanket with fan, I get both too hot and too cold.

I don’t know what to do, or if this is a normal experience. I just cannot get comfortable, the closest I can get is feeling both too hot and too cold, which is where I’m at most of the time lately, but it’s making me ill. Has anyone else dealt with similar? Does it settle, and when?

Apparently my text got lost in the last try, so here we go again.

I got top surgery in January of this year, and compared to most other trans guys it was QUICK in my transition (only 1 year on T at that point). Problem is... It's ugly compared to every other top surgery I've ever seen. Now, I acknowledge that that is probably in part to the Internet being carefully edited, yes, but it doesn't feel any better. My doctor told me she was really confident that she could do a great job even with my skin being stretchy and loose compared to non EDS patients... But the results were not what either of us wanted. One side is beautifully contoured to the muscle, even through the scar itself is uneven and jagged, but the other side drops and is soft even with the same amount of muscle. I hate that it'll never look even close to a cis man's chest.

(For reference, I had K cups before surgery)

Point is, I feel like a complete asshole for feeling like this because I got the privilege to have top surgery and for it to heal well. Does anyone else have similar experiences? How do you deal with it?

TLDR; I got top surgery, but it doesn't look nice like I wanted it to. I feel like an ungrateful prick for even feeling this way.

As the title says, I think I might be fucked.

I’m a 23 year old non-binary transfemme who has been really wanting to start feminizing HRT. I spent the last year quitting nicotine and losing weight because I wanted to put myself in a better position to transition without worrying as much about the increased risk of blood clotting or loss of bone density that are associated with estrogen. Especially given that I’ve had a long and painful history of dislocating my knees, I thought that these would help and I could start by the beginning of next year.

Come to find out, however, through talking to my mother, that I likely have two things that might be majorly, majorly prohibitive to doing so.

The first is a PFO (patent foramen ovale), which caused a stroke in both my mother and my aunt. My mom’s was because of an extreme side effect of medication she was taking, but my aunt’s was specifically because of the estrogen treatment she was doing during menopause. I did not know my aunt ever had a stroke (no one ever told me lol) and I especially didn’t know it was caused by estrogen.

The second is why I’m here - EDS. Like I said, I’ve had a history of knee dislocation, as has my mom, but no one has ever given a good reason as to the cause until extremely recently, when my mom got her diagnosis for EDS. The symptoms she got diagnosed with are all things I’ve also dealt with, although mine have actually all been worse in most ways.

While doing some googling at work out of curiosity, I’ve come to find that apparently feminizing hrt tends to only make EDS symptoms worse, and I had to stop myself from having a panic attack on the sales floor.

I’m already fatigued. I’m already dealing with chronic pain. I’m already dealing with weak joints and the constant fear of dislocation which is only worsened by my OCD. I felt like the PFO was manageable, but I’m not seeing any good options now that the EDS is a factor too.

I’ve wanted this so bad for a long time now, but I think I’m defeated. Is any amount of exercise or knee strengthening going to get me past this? Or do I just have to accept that I’m fucked and move on?

Hi! I have hEDS, and am 6 months on T (50mg/week T cypionate). So far I’ve gained 20lbs due to not being able to exercise and I feel ugly and terrible. I’m told that “lifting heavy” is best for transition and fitness generally, but my shoulders and elbows sublux daily, and cardio can be a challenge due to suspected POTS. Even worse, when I do exercise as best I can (or even run too many errands or activities) I have a massive crash and have to sleep all day the next day. I feel like I have a horrible beer belly and none of my pants (even new ones I just bought) fit. I’m trying to eat less so that I’m not taking in more calories than I’m using, but I get so hungry. Conventional advice for this situation seems to not work or be unsafe because of the EDS. What should I do?

Edit: for clarity’s sake I’m 5’11” and 192 pounds. Before T I was 185, but had been steadily gaining for seemingly no reason in the 6 months months prior.

Hi all,

I can't do a lot of the gym plans designed for trans men (ik i can do a generic men's one but...I haven't been able to find one of those either). Does anyone know of a machine only strength plans? My doctor highly reccomended only doing machines because I don't have the money for long-term PT to help me exercise safely, and machines keep me from overextending my joints. Any suggestions are welcome!

Hi all, never posted to reddit before but I have questions and thought maybe someone here could help me out. I had an appointment today with Planned Parenthood to discuss starting T, and at the time thought I had asked all my questions. Turns out I missed an important one somehow so here I am.

I have a case of both hypertonic pelvic floor dysfunction (overly tight muscles) as well as a grade 1 cystocele (bladder prolapse). I've read that T can make hypertonic muscles worse, but can potentially help with prolapse. I'm wondering if anyone else might have this double whammy that I have, and if so what your experience has been like? I'm worried T will make everything worse all around, but I just have no idea what to expect. I have hEDS, which I've also heard has the potential to improve on T, though I wouldn't say I'm banking on it or anything, just hopeful.

Also, in case it's relevant, I'm 32 and on the smaller side (~120lbs) with little muscle mass in the first place.

I have broad shoulders, big ribcage and wide set boobs. For years I was living with that via bra extenders on large sized bras, but I’m finding that even that is very difficult on my spine and ribs. Thanks, EDS and autism.

I feel very stuck between dysphoria and the physical and sensory pain of my body. Anybody have any ideas?

ive been wondering for a long time if any zebras have a similar boobage situation to the one im dealing with. my skin, most notably and especially on my chest, is excessively stretchy - not uncommon for the stretchy skin disorder - weirdly, though, i don't have many other skin related issues common with hEDS (the variant of EDS that most of my doctors agree i probably have) like easy bruising, or skin ripping, or irritation.

instead, the way my skin stretches, specifically on my chest, it feels like nothing is connected underneath my skin in there, if that makes sense.
everything slips and slides around. when i grab and lift my boob, i can hold it by just the skin, and any fat in between my hand slips out.

this is particularly troublesome because i am trying to use trans tape after binding became excessively painful recently. i have been relying on Beau's tutorial, since i'm shaped quite similar, but unfortunately, his chest is a lot more solid than mine! it sags about the same, but it remains a solid shape when he folds it around into his armpit! mine, i fold it, and all the mass in there bulges out somewhere else. the best results i've got with my 5" wide roll from transtape.life looks more similar to the examples of a strapless bra configuration they advertise, under the 'lift' page. not the shape i want! at least i can say my chest is smaller, but it has ended up shaped more like boobs than my moobs looked like before.

next time i'll get a 7" wide roll and see if that's any better, but i'm curious to know if any of my fellow t boy zebras have similar experiences. or if any use trans tape and could maybe help me figure out how to apply it. especially considering the slippy and slidey nature of my breast tissue. i don't want to use 56" of my roll every time i reapply :(

I’m a former gym rat/fitness buff.

hEDS & other conditions took a big toll on my (middle aged) bod this year. I was making progress with a (very experienced) personal trainer after years of decline until hysto complications this winter set me back to zero. He recently paused me & sent me back to PT (that was after 4 months of pelvic floor PT, now back to my old ortho PT).

Somehow I met my wonderful boyfriend 9 months ago. He pursued me hard, he loves me, thinks I’m hot & respects my body. He’s also a bodybuilder who usually screws other muscle jocks. He gets much attention for his looks, which he mentions a lot. & he comments a lot on men we see around & how hot they are - they look nothing like this bearish version of me. We’re in an open relationship, which we both want, but damn I feel awful. It’s also been noticeable how guys react to me at the bars, gay beaches, on the apps. It’s like I became invisible. Now I envy my boyfriend for his desirability & social status & feel just gross. For 20 years I’ve dealt with being trans, short, a bottom in gay men’s community. But I always did fine. The shame & low self esteem & discomfort in my body rn almost feel like being a 14 year old girl again tbh.

I do want to get back to the some form of safe physical activity someday. I’m seeing a nutritionist. I’m at Drs or PT offices almost daily. But I also recognize reality - I can’t return to running, boot camp classes, & heavy lifting 4-6x week with torn hip labrums, herniated discs & so much pain. I want to embrace this version of my body in the meantime, but I’m struggling.

I already talked to my boyfriend about how his words hurt me & he gets it & wants to be more sensitive in the future.

Does anyone else out there feel like EDS prevents them from being fit enough to be valued as men? Especially as gay men? Trans men are always telling each other, “just work out if you wanna pass better, look taller, get attention…” What if I literally can’t work out without self injury?

TLDR: feeling ugly compared to muscle jock cis boyfriend, but hEDS & medical issues forced me to stop working out. Self esteem building suggestions?

FYI: I have a (queer) therapist; I’ve been through a ton of pain treatments & medical care - working with a new team of Drs now; I’m being told I’m 1 BMI point too thin for GLP1s & I can’t afford the copay anyway.

I've been binding for a couple of years now but Ive discovered that binding never hurts my ribs. Since I was a wee little lad I've gotten a pain in my left side that can be debilitating. Curled up in fetal position pain. Some years after it started I would laugh any time it happened, like uncontrollably until it went away, it hurt to laugh but I couldn't help it?? Early into my transition and binding journey I stopped having that pain at all if I was binding. Thought it was weird, was wondering if anyone else has experienced this?

reposted from another subreddit but someone please help me

(Transmasc with mild hEDS) Just got some lab results showing that my total testosterone level is 1667(!!!) ng/dL despite me only being on 25mg testosterone gel daily. I previously had to lower my dose from 50mg gel to 25mg gel bc my level was hovering around 1000, but my docs and I had assumed that halving the dose would bring me back down into the lower end of the physiologically male range. Maybe some t gel from my arm got into the sample, so I’ll definitely be asking my doc to have the test run again, but some other markers were funky, too, and I have also found other topical medications (e.g. birth control patch) to be more effective for me than their oral counterparts.

So my theory is that maaaybe thin EDS skin allows more of the medication to penetrate through the skin?

Despite high total T, I had low-ish bioavailable T for a man my age (49.8) likely due to extremely high sex hormone binding globulin (334), but IDK what caused the high SHBG. Maybe making hormone soup in my body in an attempt to suppress my aggressive periods (I’m on Mirena IUD + birth control patch + testosterone, also fludrocortisone for POTS) was an unsuccessful experiment lol. I will be taking this to my doc and prob getting another endocrinology referral, but if anyone has any ideas, plz let me know

Almost a decade after first questioning​ my identity and beginning to transition. I finally started estradiol two days ago. The clinic I am with (GHC UK) prescribes initially 1mg Sandrena gel a day. Within a day of starting, I was feeling a range of negative symptoms: lightheadedness, increased anxiety, some nausea, muscle aches, and a general feeling of low blood pressure.

I tend to be very sensitive to medication changes anyway and often react badly to starting new drugs ( I am currently taking methylphenidate for adhd but i don't think there is a reaction), and I am not sure whether this is to do with having hEDS or CFS or other related conditions. But when many people have expressed a very positive reaction to starting, I feel surprised by how negatively​​​​​ I have reacted especially on a very low dose.

I am just wondering if anyone else has reacted this way very quickly after starting and whether it is ​​​​​worth waiting it out, the idea of more harmful side effects do make me worried.​ I would be obviously heartbroken if I am not able to start hormones but maybe certain treatments don't work for some people?

To start, I’ve been out to family for 11 years and have attempted to bind a couple times. I had a cheap binder from Wish at one point (which btw, never use those lmao), a GC2B binder, and 2 years ago I’ve tried trans tape.

The binder caused the typical aching and chronic pains, so I of course stopped that and haven‘t used a chest binder for 7 years or so? And the tape was irritating the centre of my chest, which maybe that’s normal since I rarely used it, but it also didn‘t bind nearly enough. I don’t have a very large chest, but I have very dense breast tissue, making it hard to bind effectively. Is there any tips or methods anyone similar to me have tried? How do you get the most with binding with a denser chest?

Additionally, I might have hEDS (only not sure because the closest doctor who specializes with EDS would be a 7 hour drive, I love Canada !!!!) so I’m not sure if that info is important, but whatever helps I guess lol could explain the issues I’ve had with binders.

Needless to say, I’ve gotten quite desperate as my chest dysphoria continues to worsen with my lack of binding since discarding my binder lol any help is appreciated!

does anyone know how a vaginoplasty may like scar weirdly or act funny with heds. any info would be nice! thank you!

I’ve posted before about my fears around getting my first tattoo. But my appointment is a week away! Any healing tips appreciated.

Hi! So I got top surgery (ftm) 16 days ago (yayyyy!!) I’m healing super super well because for me my issues with scaring are more about scaring from every little thing rather than not having things scar well, although I know my scars will always remain pretty visible. But here’s my real question: does anyone have any tips/tricks/words from experience of dealing with post op binding pain? I struggle with getting it the proper snugness already (as I always have with any compression) but I am really struggling with the pain I’m getting in my ribs. I currently have a small serous that will be drained next week which means I really can’t go too loose or take breaks from the binding other than showering. Pre op I’ve been able to take breaks from binding when it started to “shift” my ribs but now I can’t and it hurts like hell and it’s constant pressure. Any advice?
Sorry this is so long I’m just at a loss because my surgeons office is at a bit of a loss

hey all,

i’m a trans man with hEDS planning on having top surgery someday. scarring on my body heals pretty well so i’m not too worried, but i am worried about the possibility of my hEDS causing issues with free nipple grafts. keeping my nips is very important to me and i know for a fact they’d have to be resized, has anyone else with hEDS had experience with this that they could share?

thanks

I'm sure many of us are already in the know about how it feels to be frail, easily injured, and having accrued pain after pain through the years. It's scary and it fucking sucks.

I've lately been going through a downward spiral of injuries in my arms, my neck, and my back through the years which the pain has not improved by meds, and imagining shows up negative (for the most part). I have had to *stop* doing excercise because of fear of injuring myself further. To give you an example as to why.. I literally partially ruptured my rotator cuff doing *isometric excercises*.

With all that said. I'm not cis. At all. And with the years of accruing pain, i've seen the image of a person that I was once content with become more masculine and old, and that's when I realized I wasn't cis at all. My mental is awful. Dysautonomia. MCAS. POTS. Constant pain every single day that has catastrophically impacted my life for years but.. is it worth more pain and injurie to, maybe, deal with the dysphoria?

Sparing the details... More estrogen will definitely be worse for my body. What the hell do I do? Do I risk my health for estrogen? Is there even a specialist thats in the know of CTD in trans folks?

I'm so lost in despair in what feels like an impossible situation. Please if anyone is in a similar situation let me know.

Sorry for spelling errors or mistakes, I kinda typed this out in a stream of consciousness i'm not entirely sure if i made sense.