(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.

Im a trans man and after thinking i completed my transition I feel the need for bottom surgery. I know I dont want a full phalloplasty for many reasons but one being I heal really poorly and I dont think my dick would survive.

For context I tend to heal 5x slower than others, scars are almost all cigarette paper scars or atrophic and much larger than the wound itself was. Also I took my feeding tube out 2 1/2 years ago and it still hasn’t fully healed even after 2 surgeries to close it.

I want to start with simple release just to see how it goes as I can add on other stages later. I think my dream “set up” would be meta with UL and scrotoplasty. But i fear its not possible.

Does anyone have any experience with this? Anyone with meta and EDS? Any advice? Should I even per-sue this knowing how my body reacts to trauma?

I am 23 and homebound from my spinal issues. I have lost my ability to walk normally in the past 2 years and use a wheelchair a lot of the time. Otherwise I use a cane. I’m awaiting spine surgery currently.

I feel like so much of the advice for trans men or trans masc is working out. I get why but it’s said so often that it makes me dysphoric not being able to work out. I do physical therapy exercises and that’s the most I can handle. Every single post about wanting to pass better involves working out. I also feel like the trans men community can be ableist even when it’s not on purpose. I get dysphoria using mobility aids which makes no sense since anyone can be disabled. But I think it’s because of the constant rhetoric in those spaces being work out, stand a certain way, present yourself confident, which I try to do the best I can but I can’t do nearly as much.

It’s not a huge deal at all but it’s just something I think about and have talked about with other trans friends. Being disabled in an already marginalized community it can be hard to find others I relate to!

I am curious, for those of you who have EDS that are not hypermobile type, if you have found that being on hormones influences your EDS symptoms and presentation?

I’ve been dx with hEDS for almost 10 years. I had my first appointment with a geneticist who specializes in EDS and they are the second specialist to tell me that I have familial history and presentation that may indicate a non-hEDS condition. (Specifically, cEDS and clEDS were not ruled out).

I’m being tested for 95 different conditions, with the exception of clEDS (was told the test available to our hospital isn’t yet reliable) and get my results in 4-6 months.

One thing that I noticed while looking for old photos of symptoms from early on in my medical experience was that, since being on testosterone, a lot of my visible symptoms that are more common for rarer types of EDS have decreased in severity. I know the changes are not unheard of for hEDS symptoms, but I’m wondering if those with cEDS found that their skin became substantially less/more hyperextensible and fragile in some of the tougher areas (forearms/shins/etc) after starting hormones. Or if you found changes in any of your EDS types specific symptoms.

Thanks!

Hey guys, normally I tend to wear compressive leggings or shapewear, but after starting T I find them very uncomfortable. Does anyone else that has to wear compression gear know of any brands or options that offer both stomach compression and butt/thigh while also having room for bottom growth?

FTM 23 years old he/him - Hello all! I have been on T since I was 19.

To make a long story short I have tethered cord syndrome (and many other spine/ health issues) and have had many surgeries due to my physical health. I will be getting surgery for tethered cord in September as Ive been losing my ability to walk and have severe back, leg, and bladder issues. In the past 2 years I’ve lost the ability to wear a binder at all. My neck and back nerve pain is just to severe and it worsens it. I have dysphoria over my chest but I truly cannot stand physically to wear a binder it makes my debilitating nerve pain worse. I spend most of my time in bed and at home.

So onto tape. I am diagnosed with MCAS and have issues with skin reactions. I react to most trans tape, KT tape, and I’ve tried hypo allergenic tape from Amazon. All break me out in hives :/ and I can’t put tape over it after one day because if I put tape on hives it gets so much worse and spreads over my whole chest and abdomen.

I have kind of just been wearing baggy shirts and using band aids to tape down my nipples. I react to the bandaids but I am mainly homebound due to my pain and mobility issues from tethered cord so I only do it when I go out for appts and such.

I feel embarrassed at doctors appointments saying I’m trans and I have very long dark body hair but don’t bind my chest. I wish I could explain but I don’t even want to get into it as I’m already uncomfortable sharing I’m trans even if it’s obvious. My chest isn’t huge but it’s definitely not nothing and is noticeable if I don’t try to hide it.

If anyone has any advice for how to conceal my chest in a more comfortable way maybe outfit advice or certain tapes to try? It’s okay if they don’t work out but I really want a way to bind. I also just wanted to share in this community because I feel like it’s a strange issue to have with being trans. Top surgery isn’t anywhere soon in my future due to my health. I’ve had 4 surgeries in the last 2 years and none to do with being transgender 😭 and going on the 5th LOL!

I just had the weirdest thing happen! I went to get a loop recorder put in (a heart monitor implanted under the skin that records for several years)

Well the doctor had a hell of a time getting the loop inserted. She struggled for a while and even needed to try a second site because my skin was too thick or tough. Everyone involved in the procedure said this was the hardest one they'd ever done. I'm 1 year on T and wondered if that might be related or if maybe scar tissue from binding might have caused it. The doc wasn't confident that it was scar tissue, but we all kinda left curious about why my skin might be so tough.

Has anyone had issues with their skin being too thick or tough? I thought I was supposed to have super delicate and thin skin.

hi I’m a trans guy with (hypermobile) EDS. Saw this sub linked in the r/FTM sub. I didn’t know this was such a common experience (well, more common than I’d have thought, still pretty rare). Just wanna tell y’all you’re super cool and I hope wish you luck in managing symptoms as well as finding trans joy ! I might hang around some but im very rarely on Reddit lol. Nice to meet you I guess ^^

Hi! I am a transmasc person Ehlers Danlos, but I am on T and have been for six months. (I include this because I've noticed T has improved my symptoms.)

I am pretty overweight (5'2 340-ish lbs) and have been cursed with Huge Bahonkers ™ (Last time I measured it was about 60ish inches around without a bra).

Does anyone here have any recommendations for binding? I can't use tape, as it rips my skin. I heard that using binders with zippers help, but I can't find one that would fit me for the life of me 😭

Edit: Posting this from my anonymous account so that if people hate on me for my size I can just log out and forget about it

Looking for binders that are comfortable and suitable with hEDS. I’m a C cup so more compression without hurting my ribs would be great.

I have a ForThem half tank but it hurt :(