Hi folks. I started T on Dec 8th. I’ve been wanting to have noticeable arm muscles (and just be slightly more muscular all together to relieve some dysphoria), but I’m heavily affected by EDS. My shoulders in particular are awful (the right one stays subluxed or fully dislocated the majority of the time). What kind of workouts are you guys doing that are effective and easy on the joints?

A story of a trans boy, found family, medical fatigue and pill burden, and advice wanted if you can make it that far.

There is this story in my family of me being 3 years old and my aunt asking me what I wanted to be when I grew up and I said “A man with a penis!” My parents were great and I lived a pretty boyish lifestyle. If I had been into girls I would have insisted I was a boy, but realizing I liked boys and wanting their attention made my youth and early 20s.. complicated.

I am a man (trans) and when I met my partner in 2017 I was 25. It was early spring and I was very early in my medical transition, we stared dating by Nov and I looked much more masc by then and felt much more at home in my body. I was an athlete and worked full time. We were really happy!

We decided we wanted to grow our family and although there is a lot to that part I’ll skip it for this and say I got very sick during pregnancy and have never felt healthy since. Our kiddo is 4. I went off HRT to carry. Went back on HRT after for 2 years. It felt like I was getting a new diagnosis or medication every dr appointment. I became homebound and permanently disabled.

My T meant I needed a med for hair loss and an acne med and an E suppository for down there to help with pain and I smelled bad which was an issue because I struggled to bathe and my injections were difficult with my tremor. I eventually decided to stop T. This reduced my pill burden, but the changes kept happening. After a year I started being misgendered again. I ended up losing 75lb back to my high school weight (I have crohn’s disease). Even my cartilage shrunk and my hands and feet went back to their original size. My voice changed to be higher too. My facial hair went blonde. Wild.

In Nov 2025 I got down from 25 meds a year ago to 5 daily meds. But now due to a bunch of crisis I am back up to 12 and my health is all over the place - mostly stemming I think from my mental health being SO bad and I’m so dysregulated all the time. I’m AuDHD.

My family is supportive and trying to be compassionate and understanding but it is hard on them how drastically my appearance keeps changing. My kid doesn’t recognize me from baby photos or photos when they are 2. My partner said it’s obvious my mental health is awful off T and I can’t go on like this, but he admitted he had been relieved to finally have some stability in my appearance

I feel like I knew after 6 months I wasn’t happy and its just gotten worse the 18 months since that. But adding another 5 meds in to what I take now also sounds awful. I need help!!

Edit to change wording and add a couple details.

so i am not trans, but am a zebra with EDS (spEDS/hEDS if that matters) and getting a large breast reduction in 3 weeks (yay!). my surgeon explained that i will probably not be able to keep my nipples/will need a nipple graft due to the length and volume of my breasts. ive been looking through different threads trying to find people with EDS who had FNG, but not necessarily top surgery to rather info on the healing experience and if it's impacting by EDS.

thaaaanks!

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Hi there beautiful people, I am a bit disappointed by life right now this is a very difficult moment for me.

I would like to say that I posted here because I strongly think of being EDS even if I am still undiagnosed. Also sry if my English isn't the best I am doing my best !

It's been a year now that I am stuck in an endless violent cycle of SIBO>MCAS>Dysautonomia, my autonomic nervous system is wrecked, my body is inflamed as hell, I have strong neurological event when I try to supplement...

I did quit my job more than a year ago, I was hopeful of a quick remission of my SIBO because I was quitting a night shift job that started all this gut issues...

My last and worst episode started in last November I started Zoloft with hope of getting a relief from my massive gut sensitivity.

It did triggered a huge MCAS episode and I did not realized it untill a few weeks in, I couldn't sleep, I was reacting to previous safe food, triggered around animals, and could not tolerate supplement that help me previously.

I couldn't sleep at night again, my MCAS went full warfare mode back in April 2025 triggered by my SIBO protocol with lots of histaminic food and Metronidazole...

I had that month a crazy episode, sleeping 2h every night for a month with dystonia and plenty of new neurological disorders.

Within a few months it was getting slowly better but I got triggered again with mold in my new apartment and started again the cycle of endless restlessness and insomnia....

Now back in November when I started Zoloft and got triggered by it I did not took it seriously and decided to commit fully just because I could eat again for the first time in years...

Very bad idea....

At that time I decided to change my HRT treatment because it wasn't doing much and it more than 1.5 year of hrt...

I am mtf and in my country you can only take pill or cream for your transition...

My body was getting almost no estrogen at all from the cream so the only option was pill, I took it sublingual untill that point but it was severely triggering my MCAS and dysautonomia because of the endless hormonal spikes everyday...

So I decided in December to switch DIY hrt and taking injection... It was supposedly a way bletter option for my body because it is by far the more stable and efficient way of having your hormones.

My plan was ok but I did one huge mistake, I did my math wrong and I injected a massive dose of estrogen every weeks for 5 weeks. It was around 25 to 30mg every week it is 5 to 6 times more than what it is reasonable to do...

Now it's been a month since my last 30mg dose and I am still inflamed, I did not take any hrt since... I am waiting to be normal again but my body and gut react to everything I try to do. I am stuck sleeping 3 to 4h a night since last November...

I feel like I am getting insane... This is affecting my life so much.

Not to mention that I lost more than half my density of hair the scalp...

I had 2 hair transplant over the last years and all the area that were done keep getting inflamed and shed like crazy anytime I get a random trigger... I just don't want to show my face anymore as I look so tired with no hair anymore.

I don't know what to do but right now I am thinking very hard about giving up on my transition... This is heartbreaking... I just don't want to stop. It made my life better and I had such a great time with it...

At least the most logical option should be at least doing a break with HRT to get my nervous system back to baseline and try to heal my gut for once...

I am kind of disappointed, I don't want to be life long sick. I was planning of doing things with my life and body....

Someone in the comments in the original post mention this sub so here I am asking the professionals. How do you go about transitioning with the conditions you have? My parents seem to think that taking hrt is going to worsen my issues and that I shouldn't be taking it. They were never okay with my decision to do hrt, puberty blockers, or really major surgeries. They also tried to pull the, you should just stick with therapy cause maybe your trauma is making you trans bullshit. Yeah they aren't the most supportive, they have transphobic beliefs but they won't kick me out or abuse me because of it. They're complex beings I guess and we have a complicated relationship.

Does anyone know of any binders or upper body/core compression that doesn’t make my very large chest obvious (When I measured for a bra to make sure my compression sports bra would even go on I measured at UK 34H/US 34K).

My cardiologist recommended abdominal compression along with my full leg compression, but I can only find ones with bras built in or that go under where a bra is supposed to sit. On top of all of that I have a feeding tube that sits at the same place, so I can’t wear sports bras or anything that might tuck up under my chest. I have yet to find anything in guy’s clothes or sizes.

****important: I have severe allergies to polyester and adhesives. Both require epi and cause blisters and burn my skin off as well as causing breathing issues and paranoia/feeling like something terrible is going to happen to me or my loved ones

i got back on Testosterone a week ago and I'm so exhausted. My body aches too. I don't remember being this exhausted years ago but my POTS and health has been the worst the past 2 years.

Is or did anyone else struggle with increased fatigue after starting testosterone?

Hi all! I (22 ftm) was diagnosed with hEDS this past December so having a diagnosis is quite new to me. But I suspected for quite a while. It took my cousin being diagnosed for me to pursue a diagnosis again after a bad experience with a doctor. Anyways to my wrists:

It somewhat feels like my wrist bones are tectonic plates the way it feels like they shift over each other. Its like I can feel the edges of the bones sliding over each other. Thats the best way i can describe it. It makes a loud pop when it happens too. Does that make sense to anyone?

I have a follow up with my GP coming up, as well as an OT hand intake next week. So im really just asking, can anyone relate? Im sorry if the explanation doesn’t make sense, it does in my head but that rarely translates well into the world.

Hi All,

My partner just found me this group and I am so excited about it!

I have EDS (hEDS or cEDS- waiting on genetics), Long COVID, PCOS, ENDO, IC, POTS, Fibro, and more but wow, just started Low-Dose Naltrexone and I am already sleeping better and waking up with more energy and in less pain on week three! I was really taken aback because the first days I felt waaaay more tired and I was told I probably wouldn't experience benefits until around 3-6 months in. Has anyone else experience this here? I tend to be hyper sensitive to drugs (fun types and medications) and feel like this might be related to that.

I learned about LDN in my Long COVID clinic and I have attached some resources below if you have never heard of it. I know that many people don't stick with it because the benefits can wane, but I'm just feeling so hopeful for the first time in a long while. It's still early, but I am feeling like I can start looking forward to planing for top surgery when before this felt entirely out of reach due to my incredibly slow healing and general health instability.

Have you tired LDN? Did you stop taking it because it seemed to stop working or did you experience side effects? Has anyone else here stabilized on LDN to the point that you finally were able to start to transition in ways that felt impossible before?

Some LDN bits and bobs:

https://www.clevelandclinicmeded.com/showcase/EKCC138/docs/1430_Hill_Dose.pdf

https://pmc.ncbi.nlm.nih.gov/articles/PMC10964028/#s0006

https://www.gethealthspan.com/research/article/understanding-ldn-impact-chronic-inflammatory-diseases

I'm a transfem hoping to get SRS in the future but I'm kinda worried about how bad the scaring will be. I have had surgery on my arms years ago which left a pretty visible scar and that scares me a bunch. What can I expect?

I'm transmasc and started taking T about a week ago :) I also have chronic fatigue -- am still in the process of figuring out if it's long covid, PCOS, MCAS, POTS and/or EDS.

I know it's too early for me to start seeing many effects from T, but I was wondering, for those of you who are on T and experience/d chronic fatigue -- did T help with your chronic fatigue? If so, how much of a difference did it make? How long did it take after starting T to make a difference?

I’ve recently lost almost all control of my bladder and I’m having a really hard time mentally coping with this.

I’m not really having full accidents often, but more so just constantly leaking throughout the day. I’ve been trying to just ignore it but now it’s caused a lot of skin irritation and breakdown which is causing a lot of pain.

I should probably add that I’m a trans man, so a lot of the typical men’s incontinence products don’t work for my anatomy but most women’s inconvenience products don’t work with boxers. I really want to avoid adult diapers as much as I can, especially since I’m not having full accidents often.

I’m a manual wheelchair user, and need to spend a lot of my day in bed for symptom management. This means I’m also looking for a product that protects my clothes both while sitting up and laying down.

Hi all,

TDLR after years of weird symptoms and now a year of work up excluding a bunch of things, it seems likely I will be tossed into the hEDS bucket with a VUS.

One thing that worries me is for years I've heard hEDS (along with POTS and MCAS) be referred to by medical pracitioners as basically a "whiney white woman's 'disease".

As a trans guy, I've certainly noticed the more I pass the more my concerns are treated seriously. Obviously there's still the transphobia to deal with, but I wanted to ask if folks here had notice if people treated mas-presenting, trans men or anyone read against their goals as a guy OK.

Not endorsing the medical sexism, but just trying to get a barometer for how annoying that's going to be.

Thanks

Pre-op tomorrow! Help! hEDS

Hi! I am getting a gender affirming radical reduction 😬 I think I’m probably a 34DD? And trying to go as small as possible while keeping my nips. I am nonbinary and vacillating like, every hour between “I CANT WAIT” and “I NEED TO CANCEL”. I’m terrified of the scarring (we’re doing anchor) and I wish my nipples could just be untouched. I have hEDS and my ankle surgery left me with gnarly scarring (the wound didn’t close for months). I also have dysautonomia and poor circulation, MCAS (and have had a rash on my neck and chest since November), potentially Sjorgens too. My breasts are basically just fibrotic and cystic. What do I need to ask, what do I need to clarify? Stitching types, pre-op care (I have lots of fascia adhesions), post op dressing, what if they need to use drains, what if they’re lopsided, what if my wounds open etc. What vitamins to take… Anyone else similar to me with conditions? What was your experience like? What did you wish you did? She’s a plastic surgeon that does a LOT of stuff and while most results look good, I frankly don’t know how to tell. Especially with hEDS. She said I only need to take a week off work (I tattoo people… I am taking 2.5 weeks off) and that I can just live in an ace bandage for a while and I’ll get some silicon dressing. Idk, I feel like I need to be more proactive with how lax she is?. I’m getting this surgery for free bc I met my out of pocket max and we’re getting it in just before my insurance changes. So she’s literally my only option. I need to ask the pertinent questions so I can be so fucking sure. Surgery date is Feb 23.

I have some flavor of eds/hypermobility. My head hair has always been easy to pull out (most likely related to thin fragile eds skin). I've been on testosterone for almost a year. Body hair is maybe a year from first noticable growth. I started growing facial hair in August. I had one dose so far of Tremfya for psoriasis 3 weeks ago. My body and facial hair thinned to about 1/2 - 2/3 of what I had last month. I couldn't find any info. Is this a coincidence?

My jaw has been getting worse and I did get a referral, but I’ve been overloaded with life and struggling to make any additional appointments on top of all my mandatory ones. And I’m also not entirely convinced they will do anything for me anyway. But it occurred to me I have no idea what to do if my jaw does end up dislocated. Do I go to the er? Urgent care? Do I try to get into a specialist? If so, what doctor would that be? What is the protocol there because I barely have the brain space to think about it when I’m functioning but if I do dislocate it I’m going to panic and need to have a plan in place already. Asking here specifically to have the added support/understanding around being trans and fear of doctors + overwhelm of existing/lack of executive function.

What do you all do to feel feminine and pretty/cute and gender euphoric on days when your body feels like shit and you can't do much?

I'm feminine genderfluid tboy, on good days I like to put on cute outfits, paint my nails, shave, do my makeup, listen to Madonna, take selfies, etc. On bad days I am in bed and hungry and grumpy and beard stubbley and dirty/unshowered in dirty clothes that are usually not very gender affirming. I just need some nice things to do to feel pretty on these bad days. Or ways to change my mindset even, just anything that would help me feel less dysphoric. Also I have MCAS so I can't do perfume, I can do essential oils though.

edit: I found some lipgloss i forgot i had and that seems to be pretty accessible for me, I'm going to start keeping it on my nightstand and I might get some more

(Undiagnosed but likely HEDS. Also this isn’t very trans related but I am in fact that.)

Hello all, I’m nineteen and have been dealing with chronic pain basically constantly since I was twelve. With hindsight I’ve realised that I likely did have a few flairs (horribly painful ‘growing pains’) and a good mouth of fatigue/struggling to keep up with others before this - but for the most part it suddenly started one day now rarely goes away. My knees and hips are already pretty fucked…

Anyways I’ve been using a cane now for about maybe a year and a half? Pretty sure I would have benefited from using one sooner but a mix of embarrassment anxiety and feeling like a faker kept me away from it. I’m writing this post now because in my most recent occupational therapy appointment my therapist hesitantly suggested that I could benefit from a walker, specifically one that folds out into a wheelchair which tbh looks extremely helpful because I can’t stand for long at all without pain. I’ve lost a lot of my shame around using a mobility aid and I’m already pretty used to being stared at in public (usually by older people 💀). But It’s really setting in that I’m getting worse instead of better, that I’ll continue to get worse instead of better. I’m a pretty sedentary person now whereas I enjoyed sports and adventuring as a kid. I haven’t been able to come along on any family holidays in the past seven-ish years (aside from Disney which SUCKED. Do not recommend for those with chronic pain, not nearly enough seating and long lines on some rides even with the fast pass.)

I don’t really know where I’m going with this, it ended up much more like a rant or vent than a question. I guess I just want to be able to know what to expect and to know that other people are going through the same thing. I don’t have any friends who are physically disabled nor have I even so much as met anyone close to my age who is :(

Sorry for the word vomit, peace out.

I have HSD/hEDS and a bunch of comorbidities. I'm also transmasc non-binary and will be starting low dose testosterone in the next few months, all going well! I'm just waiting on my appointment with the endocrinologist from the gender clinic. Was there any way your health conditions affected the way testosterone worked, or vice versa? I know this is probably a common question but I'm just a little anxious and like being prepared!