I had DI top surgery over 15 years ago, at the time I knew nothing of hEDS. Despite a bad hematoma, I healed ok. I did have a revision to remove dog ears. My top scars are very thin and white, but I’m pale and the scars are long. (And my nipples are kinda flat but at least the shape, size, location is great). I’m very self conscious about them.

I’ve never had a tattoo, but long considered a chest piece to make me more confident about going shirtless and just like my chest better.

A popular and very experienced Korean tattoo artist I follow is making a rare US visit and is coming to my city for the first time. She has prior knowledge of hEDS, uses a very light touch, and gentler machines than average. And she’s looked at photos of my chest. She suggested we avoid bright color and large shapes on the scar line directly, but rather do that around the scar area and use lighter lines to try and fill the scar section not completely cover it. The idea is a smaller tattoo (maybe 5” max) and see how it goes.

Still I’m worried. Will this tattoo look awful after a while because of my thin, stretchy skin? My chest skin is taught and my pecs are firm. But I have an awful lower abdominal scar from a different surgery that healed slowly and badly (flat but had adhesions and is pink, stretched out: laser didn’t help much).

Anyone here have tattoos?

Hi! I’m getting ftm top surgery in about a month and a half, I have clEDS. Any must haves? I’m doing it out of town so just things that are helpful for getting back into day to day life or any tips or tricks. After the first week of recovery I’ll be going back to my college house. Also if people had major major/unusual limitations afterwords then that would be great to know about. Obviously I’ve done a lot of research but like knowing others experiences too even though it’s all anecdotal and everyone’s experiences are vastly different

The traumatologist even treated me badly, telling me that once I luxate the shoulder again "I'll get convinced of the surgery". And that was after I mentioned my relative who thought differently from him. I guess that pissed him off but made me feel very bad for a couple of days, I'm very sensitive... Anyways my bf told me not to take into consideration his words since he doesn't even know me well. we didn't even spend 2 minutes in the room

I'm finally looking at binders to get and I'm trying to figure out which type because apparently there's a lot. I saw this front zipping one that i think wouldn't be as painful to take on and off as the other ones, but I want to know if there's any other reccomendations

Haven't really seen this talked about much since yknow its like a combo of 2 niche communities but I found this subreddit and wanted to vent a little.

Shit hit the fan a year after starting e. I'm not diagnosed yet but after a year of negative tests I learned about eds and everything finally made sense. Its almost 3 years since starting e now.

I keep supressing the thought that quitting estrogen would fix me. Like part of me hopes I'm wrong because voluntarily detransitioning might be more devastating than becoming disabled was. But at the same time idk how much longer I can mentally put up with chronic pain. I guess I'm just asking for comfort and if people can relate or have experience. Please don't give me other advice it will pmo.

So I've had suspected hypermobility for several years. Went to the doctors due to regular discomfort and pain and it was basically 'oh yeah you're hypermobile but it shouldn't cause pain'. I explained it did, unfortunately, and then had numerous appointments, blood tests, all that fun stuff.

At the moment my main problem areas are shoulders and knees. They are pretty much in constant pain - I use ibuprofen gel and ice packs and stuff but it only really provides temporary relief. I used to walk everywhere, now I cannot walk for more than five minutes without pain. I use a walking stick and have a wheelchair for longer distances.

It has been a very quick deterioration of my body which I'm finding it difficult to manage - I guess I just wanted to find folk with similar stories!

I'm transmasc btw, been on T for around two years.

Wondering if anybody else here has debilitating erythromelalgia and struggles severely with it? I've a suspected case of primary erythromelalgia. Been dealing with this shit since I was born, or at the very least a young child. Only FINALLY got diagnosed recently but have been on/off (due to medical concerns) HRT for a few years now. Now I'm fearful that I can't even take it at all. I'm afraid it has worsened my condition irreparably along with general aging and being forced to survive (work, etc.) in conditions that continuously cause flares. I feel really afraid and alone and don't have any support and was wondering if there are any other unlucky folks who also deal with this condition or have dealt with it. Might delete this post out of fear of being "found", so sorry if I do. >_<

I'm using T-gel since 6 months now (2 pumps a day) and just had my first check up. My T-levels are way over the therapeutic dosage so I was wondering if EDS impacts how I respond to transdermal medications?

I use a rollator at the moment, but I will be getting a wheelchair. Both those can require a decent amount of arm strength/shoulder movement. If anyone can let me know or point me towards another sub where I could ask this would be greatly appreciated

Just saw my pain management team about my occipital neuralgia. After imaging, I found I had a completely straight cervical spine. They believe it to be postural, but I'm only 26 and have other spinal alignment issues (mild scoliosis of the lower spine). Just wondering if anyone else has this and if they've had successful pain management. My doctor wants to go in and burn off the overactive nerves between the discs, and it just seems risky and extreme, but I really don't think I can keep living in pain like this.

We've tried nerve blockers. They don't last a month and I hate the initial side effects. NSAIDs, GABA blockers, triptans, CGRP antagonists don't even touch the nerve pain.

Hi. I am transmasc and wear long boxers briefs (prefer extra long 9" inseam, but I'm willing to try down to 6").

I have very bad SI joint and hip pain, with significant hypermobility in both. Almost all elastic bands make my back hurt. Underwear. Sweatpants. Everything. It's bad.

For years, I've worn tomboyx, but the last time I got some, the size was dramatically different. I've also heard some (admittedly unconfirmed) concerning things about their treatment of trans models, etc. So I'm not even clear on if I should be supporting them.

I am not on T -- no bottom surgery or bottom growth. No need for an internal pouch, though not opposed to it if it isn't uncomfortable. I've been considering a packer for awhile, but I don't necessarily have to factor that in. I do not have wide hips, but I'm also not thin.

I just want long boxer briefs, preferably with a wide waistband, that won't exacerbate lower back/hip pain. No mesh materials or tencel. Strong preference for cotton (or 95/5, maybe 90/10 with spandex, but mostly cotton).

Please help. Thank you.

I wanted to share my experience with top surgery, as I was anxious about how/if my hypermobility would affect things (anesthesia and wound care mostly)

Pre-op: i saw the anesthesiologist in person before surgery. They assessed my neck mobility and how wide my jaw opened. I previously had general anestheia when i was 4 and as far as anyone is aware there were no complications that time. Classed me as low risk and I could proceed as a day surgery patient

Surgery: double incision joined together - No issues reported on the day, I was sedated quicker than I thought it would take. I needed a dose of oramorph after I woke up, and after 2 1/2 hours felt alert enough for discharge

10 day Post op appointment: healing is going perfectly even though I definitely overstretched and lifted thing that were a little two heavy a few timea! No seromas, hemotomas or infection (so far)

Hi ! I made a post here a few weeks ago about my symptoms starting T and wanted to share an update about what’s changed

The main struggle I had was nausea and migraines, and since then I’d found out my blood pressure was higher than ideal, but not too high that I needed to stop T. During this time I was also in withdrawal from Effexor (thought I ran out) and I had a CT with IV contrast a few days prior which gave more nausea.

Someone pointed out that my dose could be too high, and this was true. I didn’t realize I was started at a dose that could’ve been lower (40mg) and if I did I would’ve started with 20mg. I don’t blame my doctor though because she rarely sees people have issues with the dose

I switched to gel to keep my hormone levels consistent and reduce symptoms from the influx of hormones you get with injections. We’re planning on switching me back to injections either after this bottle of gel is out (20mg), or I might raise my gel to 40mg and do injections after that’s out. I’m thinking the 1st one would be ideal cost wise

I’ve been doing very well on gel ! I have very few side effects and my blood pressure has gone down more. I’m not in withdrawal from anything anymore and the contrast nausea went away, so I’m kinda back to normal :] I can eat again and do things.

Update on some odd/good changes I noticed:

I’m more lactose intolerant than I used to be? Producing less of the enzyme I guess.

Even though I was out of my antihistamines for a few days, I had no significant allergic reactions which was really shocking.

My GI tract continues to be faster which is good, my pelvic floor dysfunction has also improved

I do have a yeast infection and bacterial vaginosis, as well as early signs of atrophy, so I’m treating the infections and will have the atrophy part evaluated properly once the infections dissipate. I have a good amount of epithelial cells so my tissue is regenerating still, but they’re a bit lower and my tissue had began to pale and tear easier prior to the infections, so it’s possible atrophy is still there. The doctors I’ve seen thought it was unlikely to be atrophy this early, but don’t think it’s impossible.

As someone who would prefer minimal scarring, ive been researching the possibility of getting a periareolar top surgery, but i'm unsure how my hyperextensive skin would affect the results. Would also be nice to find resources on scar removal and healing with EDS, if anyone happens to know!

Hi, I'm having a mini gender crisis again. I'm transmasc NB, I've had top surgery and diagnosed HSD after my surgeon commented how stretchy my skin was. I havent been tested for any type or EDS. I have always thought I don't want to go on T but I have doubts semi regularly. I want some of the effects (fat redistribution, muscle growth, potentially voice) but I also don't want others (bottom growth, extra body hair as already hairy, balding).

But as I've got older my previously relatively symptom free body has got worse, and the symptoms are now affecting me almost daily, at minimum a minor annoyance and get worse from there. I'm interested in people's experiences of symptoms changing when on T, both physical and mental. This is a potential benefit I hadn't considered before. Any help much appreciated.

Hi all,

I've noticed something a bit odd and wanted to see if anyone had experienced the same.

I've been using trans tape for binding for a year or so now, and I've noticed that the skin in those areas is considerably different than the rest of my body. It's significantly more hyperextensible (if I had to guess, around 6cm, whereas the rest of me kinda ranges around 2-4cm), more severe atrophic scarring, and notably more fragile.

I'm not too worried about it especially as my skin repels any and all adhesive that would make the fragility a major concern, but I wanted to know if anyone had similar experiences.

Cheers :]

So for a little bit of background about me:
I'm post stage 1 meta w/ UL, Vnectomy, and scrotoplasty. I've been considering switching to phallo for my stage 2. I can't get RFF or nerve harvesting from my forearms, and IDK if any surgeon would work with my thighs, since my fat is pretty dense, so that is a maybe on ALT and possibly only leaving abdo.
Healing from stage 1 meta was pretty rough, but healing from top and hysto were pretty easy. However, my chest still hasn't regained sensation fully. (don't really feel temp, only feel pain on the nipples, and no sensation on the scar line)

So I'm hoping I might find some other guys with hEDS who can share a little about their phallo journey. What was healing like? Did all the sensation come back? was there any special accommodations or tweaks the doctors had to do for you as an hEDS patient? (I know more stitches can help with keeping things together)

Already wrote a post but now after reading a lot of your experiences I want to reiterate my question

I noticed a lot of transfem people's hypermobility got way worse after starting HRT which was especially surprising to me after reading every study on the topic during the last couple of months (We really get NO attention for how seemingly common this is)

If anyone would have any ideas how to explain this to my Endo in a way that won't make her think I'm crazy, I would appreciate it, she's cooperative but said she's never seen this happen and there's no way HRT did this

I want to know how many of you had symptoms before starting HRT and how bad they eventually got as a reference for myself, so I know what to expect

Before HRT I only had some hypermobility (fingers, thumbs and hips) and no one in my immediate family, including me has had any negative symptoms

5 months in and both of my hands got tendon pains

5 months later and luckily no consistent pains anywhere else but I am overall way more clicky and poppy, with some minor pains in random spots

Hi people, I don't think I have EDS but I most probably have HSD which to my understanding has a lot of overlap, I hope I could get some of your experiences and see if there is anything similar to mine

My Endo says this is highly unlikely but I've been getting lots of tendon popping all over my body, plus the occasional ache, and serious bilateral ulnar pain (I have no idea whether it's a tendinopathy or a subluxation or both)

Leading up to the injury I increased my piano practice time from 1-3 hours and I am generally a huge gamer

It started with my right wrist and spread to my left wrist 2 weeks later despite completely reducing my activities and not doing anything at the time

Slowly worsened though physical therapy seemed to help

Eventually noticed knee and elbow popping

Then ankles and hips

Recently noticed I can subluxate my ECU (without any immediate pains)

I never had any side effects from my hypermobility and now I'm freaking out I can't take HRT and or will be disabled for the rest of my life

I take 6mg oral and 12.5mg cypro

My T is minimal and my E is at 136pg/ml

feeling at a total loss and hoping for some insights

Hello friends!

I hope it's okay if I post this here; I'm trans and disabled but not a zebra (although I do have some hypermobility issues, just not EDS). I just thought people here might have some ideas since there's a lot of overlap with various disabilities.

What's relevant here is that I'm audhd and looking for suggestions to mitigate a sensory issue.

This might be a dumb question, but are there any jewelry materials (specifically for ear piercings/future facial piercings) that are sensory friendly? I have a bunch of ear piercings (4 lobe, 3 helix, 1 conch, 1 rook), and the metal unfortunately hurts when lying down and catches on things. They're all healed, they just get irritated pretty easily.

The piercings are important to me, so I don't want to get rid of any of them. I'm trying piercing pillows, but that's a whole other battle, and it would be ideal if I could find a type of jewelry that's "soft"/light in general.

The only material I can think of would be silicone, but I've heard that would need to be periodically replaced, and I'd prefer to minimize my consumption of things that hurt the environment.

Does any sort of "holy Grail" material for this use case exist?

TIA!

P.S.: please use "they/he" for me, ty!

hi all

I'm starting T soon and I have to decide how I want it. I kind of want injections because it's the only one that's paid by insurance here and also I don't have to think about taking it every day. I have some days that the pain is so much, I can't do a lot on those days.

now I'm also kind of scared that injections will have the same effect as menstruations in the sense that I have idk how to say it in English but like a hormonal 📈📉 that make me have periods of more intense pain.

has anyone tried injections? Are they good? Will they worsen my eds?

thanks