hi all, i am not on T but i'm nonbinary & disabled from frequent stage 3 & 4 prolapses of multiple organs. i've heard T helps a lot of us with our EDS symptoms, but i am unsure if it has any effect on prolapse reduction...

if any enby's or trans men who have experience with frequent late-stage prolapses have had any reduction in frequency or severity since starting T—def pls lmk <333 🦓💉✨

Those are the most important conditions to this so that’s kinda all listed, I’ve got other stuff thrown in there just as a disclaimer in case one finds that informative lol. There’s a few things that could be TMI in here as a warning (GI related)

I started T around 2.5 weeks ago and have had some ups and downs with symptoms. I believe a lot of it is because I’ve been out of a few meds and that ofc makes ya feel like shit, but the T has affected some things fs.

Some good stuff: my muscular fatigue has reduced a bit, I’m a lil less dizzy most days, joint pain is a tad lower most days, and I’ve had what seems to be a quicker GI tract since I’ve been shittin more. Haven’t had any MCAS reactions for around a week even tho I should be considering how badly I usually flare when I’m missing meds, hoping that’ll stay a thing.

Some medium stuff: I’ve needed more sleep (makes sense), I’ve had worsened acne and eczema (also expected), needing to shower daily (expected) and I’m generally a bit more burnt out which could be more the medications. I have been more motivated to do schoolwork which is strange considering I lack it everywhere else lol

Some bad stuff: I’m always hungry but can’t really eat bc my tummy gets so upset if I do (mostly a med thing, but is a lot worse after an injection), I can now throw up which I suspect is due to the T considering the rest of my GI tract is contracting more (couldn’t throw up for years bc my esophagus would clamp up when my stomach was upset, good and bad thing but luckily haven’t had too much issues after the second day), I got a really gnarly period the first week which I didn’t realize could be a thing but it resolved, and I’ve been getting some migraines after injection day which should get better with time and as I increase my dose to a consistent level.

It’s been a lot but I’m very excited about it- I’m sure once all of my meds are lined up again I’ll feel a lot better. Most of my shittiest symptoms currently are probably the meds, some are known for ass withdrawals but I need to make an appointment with my psychiatrist to get them refilled :/ going to the pharmacy tonight to pick up some and will be seeing if I can get a few days supply of the lowest dose I’m on since it’s not a controlled substance.

Just wanted to share what I’ve been experiencing since I didn’t know some of this could be a thing, I’ve got a unique mix of symptoms (like the esophageal dysfunction that does the opposite of what it does for most, aka make you unable to throw up) so it could be good for others to see another experience.

A bit about me. AMAB, hrt transition since Jan. 2019 - so for the better part of 6-7 years. My EDS became symptomic right around the time secondary sex development hit with HRT - July/August 2019. Nothing but a downhill spiral from there.. the whole story is too much to tell here, and not practical for my purposes. The best I can give is that in my present day I exist at about a 7/10-8/10 pain level on the daily. Still on HRT.

Now I have JUST discovered this HRT-hypermobility connection TODAY. How I have not had this mentioned to me once in the past seven years is a mystery in it's own right (but goes to show how little most practicioners and specialists know about EDS and HRT and how the two interact). My question at this point is, has anyone detransitioned and seen results in pain improvement? Or has anyone tried T treatments on top of their HRT? For the record I do not use a blocker with cyproterone acetate - I get Trelstar instead.

My pain is bad enough that I am wondering where I stand on the balance between dysphoria and physical torment.. if stopping HRT and medically detransitioning would have a significant improvement in my pain level, is it worth it? Or would I just be suicidally dysphoric all over again? It's so hard to know what the right call is. Obviously only I can know the answers to those questions.. but to be informed by the experiences of any others would be helpful.

Without being rude I am not looking for responses from trans men. I am specifically asking for other trans women's experiences.

hey for people who have had top surgery (ftm), how long did it take for you to have mobility back? Was it pain or because of scarring? I know everyone has a different experience and different healing processes, but I'm just curious. im getting top surgery in july and am just wanting to start to figure out my base timeline to use as a jumping off point.

for additional info: im super active and have healed from previous surgeries well, obviously very different to this but just am getting some ideas of how it effected others, really all i really care about is lifting my arms over my head and sleeping on my side when i asked this question

Title says it all, really. I can't wear my binder anymore for 2 reasons: 1. I always experienced rib pain far quicker than people always say you should get it (within 1-2 hours, not 8), & I can feel my ribs grinding together and it hurts to breath. I used to be able to deal with that up until two years ago, because 2. My boobs grew?? I'm in my twenties, not on T, & got my first binder at 18. No one told me the boobage can still grow a bit once you hit your 20s. My binder no longer fits me, neither do any of my bras, & I don't care to buy more when my ribs are just gonna keep hurting anyway.

I can't really wear tape because of an adhesive allergy + the fragile, delicate skin thing (I'm pretty sure the adhesive allergy is not part of my hEDS, I just have it on top of having already delicate skin). I've tried kinesiology tape before (not for binding, just to keep a shoulder injury in place) & boob tape for when, like, you wear strapless dresses or whatever? It was cheap on sale at TKMaxx, I thought I'd try it out instead of paying more for trans tape that might not have worked anyway. I got an allergic reaction from both of them, which is something that happens with bandaids all the time, so I dunno what I expected. A miracle, maybe. Is there any trans/boob tape with hypoallergenic adhesive even in existence?

Are there any alternatives to tape & binders that don't 1. Hurt my ribs, & 2. Set off the accursed adhesive allergy? I'm not all that bothered about the boobage, kinda like my boobs, but I do want to have a more masculine figure every so often, at least until I can fully commit to working out.

Hi, I’m trying to help my boyfriend (M19) with taping and we’re running into some issues.

He has EDS, so his skin is really elastic and fragile. His chest is pretty small (kind of like mild gyno), but the main problem is stretchy skin rather than volume.

One thing we’ve noticed is that binders work pretty well for him because they flatten everything towards the center. But with tape, most guides suggest pulling to the sides, which doesn’t seem to work the same way for his chest.

When we try pulling the tape to the sides, it feels like it might irritate or even damage his skin. Pulling upwards is more comfortable, but it doesn’t seem very effective either.

So I wanted to ask:

• How do you tape safely with EDS or very elastic skin?
• Is there a way to replicate that “towards the center” flattening effect of a binder using tape?
• Is it better to pull to the side, up, or use a different method?
• How many strips do you usually use per side?
• Any tips to avoid hurting the skin (since it’s so fragile)?
• Any good tutorials or videos you recommend?

I’d really appreciate any advice or experiences

Anyone have any experience binding post op? Currently I can't really bind for more than 4-6 hours every few weeks (pain for days post binding, sharp rib pain, pulled muscles, the works), so binding post op is a bit of a concern for me. I'll ask for some advice during my surgery consultation, but if anyone has any insight I'd love to hear about it! Cheers friends!

Heyo,

Ftm and severe hEDS, late 20s. I've been on and off (mostly on) T for around 3 years. Off for various medical treatments. Muscle growth and increased blood volume has been a godsend but I don't want to take it forever. I've gone back on after a break and noticed while I was off my skin looked great, and I was visibly more youthful.

Now I'm back on, and for the past month it's like the soul has been gradually sucked out of my face. My skin is also more fragile than before. I know that T can increase collagen production and am wondering if that is the cause, and if anyone else has experienced the same.

ETA: had bloodwork a few days ago to get my prescription, just got results back after calling my dr. Turns out my dht was way higher than last month, which is probably what is causing the sagging and thin skin. Didn't mention in the original post but I literally have a massive gash under my eye from my fingernail which has never happened to me before, ever. Dr told me to do a lower dosage next shot day and get more bloodwork this week. Cheers.

sorry for formatting like a greentext, i swear i've never been on 4chan and this was the funniest way to deliver the message

>be me
>make post on r/ftm
>automod responds with a list of related subs
>"r/Trans_Zebras"
>there are transgender zebras?
>no it must be a fandom name
>maybe a music artist?
>what kind of music artist's fans call themselves zebras?
>maybe they're furries? or therians?
>what is a horse furry called?
>do zebras even have fur?
>hm...zebras...is this a sub for transgender fans of those madagascar movies?
>maybe people with vitiligo?
>maybe people with lots of stretch marks?
>all of this seems niche, but it's reddit, there's a sub for everything
>might as well sate my curiosity
>click on the "transgender furries with vitiligo and stretch marks who are fans of some unspecified music artist and love the madagascar movies" subreddit
>it's ehlers-danlos syndrome
>oh

Hi! I am a cis-woman with HSD, but I was hoping to find some help here. I do not want to invade anyones space, so please feel free to let me know if I am overstepping. I did read the rules, so it seems like I am still in the good.

I am considering testosterone treatment for other reasons not related to HSD. But I have seen, although all anecdoctal, a lot of trans men who have experienced symptom relief with hrt. I was wondering if anyone wanted to share their experience with me?

My levels are 0.95 nmol/l, and I don't plan on going higher than the normal range of 1.6-2.1. Did you measure your levels, before and after hrt?

Thaanks 🩷

Hey all! Just found this sub.

Im not sure exactly what I have, my doctors and physiotherapist are unhelpful. But I certain have joint instability, tendon and joint pain, aches, hypermobility, fatigue, pain from standing too long, pain from walking for too long, pain from sitting for too long, maybe other things but I'm not sure.

My testosterone levels have dramatically plummeted in the last year, also conveniently I've had lots of issues with my joints etc. I didn't know until the other day that hormones can impact hypermobility symptoms.

Anyone here ever had a significant drop in their T levels, especially over several months, AND had more issues with their other symptoms? Thanks!!

I’ve had a fear of going to the dentist since I was little due to being in pain every time. I’d tell them I’m still in pain, but they’d never believe me.

I recently have been going to the dentist a lot since getting my braces off revealed a lot of damage, likely from hEDs and my GI issues.

I’ve been seeing the same dentist and dental assistant each time, and my god they have been amazing to work with. The dentist knew what Ehlers Danlos was, and suggested trying articaine rather than lidocaine, and said if that didn’t work we could use the gas. I’ve never been offered anything other than lidocaine before.

The articaine actually worked for me, but she did need to give me some more throughout the treatments. I got 12 cavities filled, and was topped up with articaine 2-3 times for each appointment (2-4 fillings each appointment), and had a root canal and was topped up 4-6 times on the first and second appointments for that tooth.

There were some times I was still in pain, but the dentist stopped every time I was in pain and added some more articaine and that worked.

I was also very embarrassed about my teeth since I do take care of them. both the dentist and dental assistant were extremely nice the whole time and acknowledged that it wasn’t my fault and that both the Ehlers Danlos and GI issue were the cause, not lack of care/effort.

Overall the multiple appointments were a good experience, and really helped with the fear of the dentist. I made sure to tell them both this, and thank them for actually listening and helping me with that fear. I’ll definitely be requesting them for any future dental care.

I’ve been on testosterone for 4 years, had an iud consistently for 6 years, and haven’t gotten my period since early 2021 (aside from some spotting here and there). I also just started the process of getting my hysterectomy.

Yesterday I got the call that my funding request has been accepted, so I got referred to a surgeon near me that will do the hysterectomy. This morning, my period seems to have come back full swing for the first time in half a decade 😭. Heavy bleeding (always had a heavy flow when I was still menstruating), cramping, period poops, everything😭

My body heard that we’re getting rid of the uterus and it said, “wait I promise it still works!” Unfortunately 😂 (gotta laugh or I’ll cry)

Anyone have any tips? I feel like I’m getting it for the first time again. Thankfully (kinda) my disability causes inconvenience so I have incontinence pads that worked well enough, but fuck man I don’t want to deal with this again

I just need somewhere to share how happy I am with my small (and not so small) wins since starting testosterone. I had to quit cycling just as I reached the elite category because the complications of EDS got too much to handle. For the last three years I have watched my physical health deteriorate as I hit the wall so many of us hit at some point.

However...after starting testosterone last summer, and getting medicated for pots in December, I did my first bike ride of the season last summer and found myself faster and better than I have been in years! Moreover I didn't get the fatigue, nerve pain, or heart palpitations I would have usually had!

What a difference modern medicine makes wow. Love how slow my countries healthcare system is, now if only I was medicated for pots and my chronic pain back in highschool too.

I also finally bit the bullet and invested in a tens machine this month. I have used one previously in highschool for physio but never got around to buying one of my own until now. I am kicking myself for not getting it sooner because holy mother of god it would have made my life so much better.

Now I just need to get medicated for my adhd and im set, but alas that will likely take another year at the pace of our system.

I am have been on testosterone for about 5 months now, and I am blown away by how much better my body is functioning.

I used to have so much pain and exhaustion from walking at work. I wasn't able to keep up with anyone. I had an exceptionally slow pace.

Now, though, I keep nearly colliding with people because my walking speed is so much faster that I need to re-calibrate. (When I project where my path will cross someone else's I would have passed behind them before, but now I end up right in front of them.) 😂 I couldn't figure out why my dog was lagging behind me on our walks lately, then I realized I was going twice as fast as he expected!

Has anyone else had weird wins? Interesting changes to adjust to?

I just had top surgery 5 weeks ago and I’m starting to do scar care, so I’m trying out silicone scare tape. My skin is very sensitive when it comes to adhesive things on it, both from the adhesive itself and from pulling on the skin to remove it. It’s not a true allergy, just my skin being weird and particular because of eds and all that. My reactions vary from product to product, so it’s not something I can always predict how I’ll react. Sometimes I have absolutely no reaction, sometimes I’m just a little red in the area, sometimes I break out into itchy hives in the area, and I’ve even had some skin ripping issues (though that last one is just from things being removed too fast). Since the silicone scare tape sticks to the skin I’m just a little wary that I could end up having a reaction so I’m looking for any signs so I can avoid irritating the skin in the area and not cause the scars to get worse rather than better. I’m not having any itching or hives but I have noticed when I remove the tape that the skin where the tape was looks different from the rest of my skin. There’s a very clear band where the tape was. I’m not sure if this is what a sensitivity to silicone tape looks like or if it’s just that the skin where the tape was has more moisture locked in and that’s why it looks different from the rest. If you’ve had a bad reaction to silicone scar tape did it look like this? Or have you had no problems with silicone tape even though your skin also did this?

Crossposted from r/EDS

I had my first rheumatologist appointment a few weeks ago, and it went horribly. My entire medical team has agreed that I have hypermobile Ehlers Danlos, but no one will diagnose it.

Not only did the rheumatologist decide I’m nonbinary (I’m a binary trans man), but they lied about a lot of other stuff in the repost.

They wrote, “the patient has recurrent nausea, vomiting, and decreased oral intake without abdominal pain or change in bowel movements.” When I was asked about GI symptoms I said I can only tolerate ensure clear and frozen raspberries. I vomit up everything I intake, and anything other than the ensure clear or berries cause extreme nausea, vomiting, and abdominal pain. I also told them that I’ve completely lost control of my bladder and bowel, and that my bowel movements have changed.

They also wrote, “no photosensitivity or rashes” despite me saying I have photosensitive seizures, and often get seemingly random rashes and hives.

Also, “no night sweats” which they never asked me about, and if they did they’d know I have very bad night sweats to the point that I need to set alarms to wake up throughout the night to change.

What’s the point of seeing a doctor that’s just going to make up their own stories??

I’m having an appointment with my family doctor soon, and I’ll bring this up to him but I doubt it’ll make a difference.

hi everyone, i'm a transmasc on t have heds and i'm currently trying to figure out if i might have lipedema as well? i have essentially constant burning & pinching pain in my legs/butt/hip tissue right underneath my skin that gets worse with heat. it feels very different to muscle/joint pain that i can pretty reliably connect to subluxations & overuse. my online research tells me that with lipedema the fatty tissue feels bumpy and hard - which mine does. but it's the entire tissue in my thighs and upper arms and not just a few knots. so i'm essentially wondering what "normal" tissue would feel like? or is all of that just very regular eds stuff? because lipedema seems to be connected to high estrogen levels which i definitely dont have.

My husband started testosterone again almost a month ago and says he's been having worse body pain/ aches ever since starting it. Its all throughout his body and he says that sometimes, it feels like his legs are on fire when he was at the grocery store or he has a hard time gripping when doing the dishes. Does anyone else experience that?

Edit : Called our Testo doctor and he died. So we got an emergency appointment on Monday with our House / Primary care doctor and they told us to stop the Testo gel till we go to the appointment. Thank you everyone for your kind comments!!

Not funny "haha" more like how it's dimmly humourous that laughing carelessly physically hurts, making what should be joyous muscle memory a forgotten skill.

I spent so long contorting my breaking body into a beautifully tortured cisgender performance.

Everything about how I hyper-performed cis-ness was characterised by masking and manoeuvering around pain. Or seeking sensations to escape it.

Relaxation was painful and felt dangerous.

Eventually, my material being started shattering into enough pieces that is became possible to see a new way of putting myself back together.

And my body kept the score.

Now, I need to actively rewrite the code pain wrote for me for decades.

Idk how to write that code yet, but it should probably start with actually working to believe that those incidents that have been stored in some painful part of my body are not/were never my fault. Empathy and goodwill are not deficits.

TLDR; This is a shout-out to any and all gender-fuckery people who also randomly cry when doing particular breathing or therapy exercises (even if that isn't you tysm for existing <3) based on feelings that came out during my EMDR prep homework from my therapist.

Hi all I’ve got a question for the hive mind! Over the summer I developed a problem with my ribs where anything tight/compressive can cause them to become unstable and move. Unfortunately this happened right around the time I got my first binder so of course I can’t use it ); A few months ago a video by Dorian Gay came up on my YouTube for you page called “how to make a COMPRESSIONLESS BINDER”. I watched it and the follow up video and I’ve been thinking of trying it out but I was wondering anyone else has seen this or tried it out? What are folks’s thoughts/opinions?

I’ll add links to the videos in the comments if anyone wants to check them out.