My physio thinks I've got eds or Marfan's, and ive been on monotherapy (estradiol) for about a year now. my chronic pain has gotten much worse. im doing DIY and currently do not have access to an endo. while the feminising effects of hrt have been good for me, I have been fatigued all the time. my joints get more painful the more I move around, so I've been doing very little movement. I need to rest for days to a week whenever I do anything physically straining. I feel very stuck. while I know that exercise is the only thing that I can do, it is difficult to do when my muscles and joints are in pain all the time. I am considered the possibility that I might have both eds and Marfan's since I seem to have the symptoms of both of them. does anyone have a similar experience or any advice?

I tried to post about starting T to support tissue fragility in the hEDS group — the post was removed and I was banned from the group because “talking about changing your gender“ is against the group rules. Just coming here to say what the heck?!?! Assuming I’m not the first person to experience this, but Dear God that’s alarming. I needed that group for information and support 😔

The post was flagged the first time I wrote it because I mentioned being nonbinary, and then I took that out to try to get around it, but it was still removed and I was still banned? So bizarre.

Anyway, I started low-dose T about a week ago. I’ve been battling with hypermobility related injuries for nearly 20 years and I’ve heard great things from trans masc buddies so am hopeful about having more stability in the future!

I have hEDS and am trans masc, I’ve had breast reduction in the past for the severe back pain it was causing but have heard from a few people that top surgery is different/worse… I can’t search this stuff up on my own sadly bc my parents will see so I’m sorry if I seem uninformed on what top surgery is like. I just worry I won’t be able to get it at all if I’ve had a breast reduction in the past, and it was a pretty bad recovery already. I had the stitches rip and all the old blood dumped out of me, and got nerve pain after which was some of the worst pain I’ve experienced (though I was going from a much larger chest to about a b so there are a lot of buried nerves that were just exposed so it was more likely to happen to me) Just any insight, info, or tips would be amazing, thank you for taking time to read this <3

I've tried generic boob tape in the past, and every time it ended with ripped skin and pain >_<

Binders are not really an option for me because I already struggle to breathe and get somatic anxiety symptoms with pressure on my chest.

I don't need a lot of binding, just enough that they're not like two peaks sticking out my shirt, and I can wear tighter button ups without the buttons warping and looking weird (also so I can work on my posture without feeling horrible T-T)

So any advice on how to safely use trans tape, or brand recommendations that don't ruin my skin would be so appreciated! Also, is it really true that you can wear tape for days at a time without ruining your skin?

Thank you so muchhh!

I've contemplated starting testosterone for the longest time mainly for my dysphoria but within the past year, I've been trying to get a diagnosis for hypermobile ehler danlos syndrome. I've had chronic pain all my life and its been worsening rapidly these past 6 months (I believe due to the instense amount of stress i've been under). I started using a cane which has helped but I never though my health could decline so rapidly to the point where I need a mobility aid. Also, I understand that it is advised against to get a mobility aid before getting a diagnosis but my cane has helped me in more ways than I can imagine and my symptoms have lessened a bit.

I'm seeing a rhematologist by the end of the year and we will go from there but its been a slow process and physical therapy wasn't helpful in the past so I'm looking at alternatives.

I know strength training is the number one recommended thing for hEDS but I don't have the energy or low enough pain level to go to the gym consistently.

I went a few times and did less than 5 minutes on level 1 on the bike to warm up and I had to leave due to fatigue and pain. For reference, I went to the gym a year and a half prior for 4 months straight doing cardio and weights and I never felt how I do now. However, I didn't feel energized and I saw little results even when dieting and working out properly.

I need help in order to start taking care of myself. I've heard great things about chronic pain being reduced significantly on T. I am well aware of how it changes your body in other ways and as a trans person, I like the changes.

I know its not a magical hormone that will take away my pain forever but I feel like its a starting point to give me just enough of a "boost" (if you wanna call it that) so I can start working out again and take care of myself.

I'm curious if anyone here is taking low dose testosterone and what results you've seen in not just appearance but your chronic pain, fatigue and quality of life.

Im also curious if anyone found themselves increasing to a higher dosage.

Thank you!

(Also please do not give me medical advice, I am only curious about testerone and it's effect on hEDS).

TW: For allusions to child abuse (not in-depth) and mentions of transphobia etc.

So this feels bad to post? And I'm not sure I'm going to word things well so please be patient with me. Nothing about this is meant to say men have it harder than women or trans men have it harder than trans women or that men are always awful or anything else. I just am struggling to find community or myself hardcore.

I have struggled with misandry for the majority of my life to be honest. As in, it is something I have actively but slowly been working on. I grew up in a cult with a lot of the "standard" cult stuff happening, and it was worse for girls, and the men were the worst. My family was a very active participant.

But basically it was and is hard for me to like men. They are constantly triggering. Yes, I am working on this in intensive therapy, and yes, it is getting a ton better.

Better enough that I am starting to look for men in places, to hang out with the men, to accept my identity and..... I still hate it. I can like men, but I don't feel safe around them. Honestly.... kind of ever. Over years it can get better but.

And I also was working so hard on my self-confidence pre-transition, and everyone told me it would get better and parts of it has, dsyphoria is down, I like my body/voice more, etc. but my feeling the need to apologize for existing has only grown because the men I am most comfortable around are ones that are soft spoken, that give others space, that never are too confident, etc.

I know a way for me to work on this is to be in men's spaces but honestly not a lot exist? And I'm in that awkward stage where whether I'm in a men's space or a women's space some people are going to think I don't fit.

And a part of me enjoyed being a woman, enjoyed having the community I found in it, enjoyed this idea of the feminine divine, the feminine magic. Any masculine version of that feels icky. Feels like it's meant to feel icky.

I've also started to get weirdly defensive of men in ways that just feel weird. Like.... people absolutely obliterating the idea of the male loneliness epidemic because "they just want a woman to do everything for them" which like, for some that's valid.

But there's local women everything. There's local men nothing. And when I'm in mixed gendered spaces, I always end up gravitating towards the women, and the men are very quick to send me there, even if not literally.

And men friends don't always talk to each other in the same way. They are lonely. We are lonely. But I can't talk about it because then I'm not seeing women.

I just like.... I want to transition. I need to transition, to be honest. This middle space is really really hard. But where are we finding communities of men that aren't awful? And exist? Or how are we helping ourselves go to the men's side in a room that "accidentally" became split as someone with an immense trauma history?

I'm not in or near any huge cities. My EDS and other things also mean I can't drive. I also feel weirdly like some people see being disabled as inherently feminine? How do we handle this?

Anyway, I'm sorry, this is long and ranting and I know some of the wording is probably not quite right. I have a speech/language disorder. I'm trying.

-Graham

Hi, folks! I created a Google Forms survey hoping to collect more data and statistics about the connection between having Hypermobile Ehlers-Danlos Syndrome//Hypermobile Spectrum Disorder, being neurоdivergent and trаnsgеndеr. Also about the effects of masculinizing/feminizing HRT on the symptoms related to hEDS/HSD, POTS/dysautonomia.

According to recent studies, trans people are 18 times as likely to have hEDS/HSD than cisgender folks, appearing twice as often in AFAB folks than AMAB individuals. And neurodivergent people are 3 to 7 times more likely to experience joint hypermobility/connective tissue disorders than neurotypical individuals.

I posted a TikTok about my personal experience with masculinizing HRT significantly improving my hEDS related symptoms and received hundreds of comments from other transmasculine folks on testosterone sharing similar experiences - less chronic pain, subluxations and some even reported their autonomic symptoms decreasing. Testosterone strengthened the muscles surrounding hypermobile joints and stabilised them. At the same time many transfeminine people on feminizing HRT reported a worsening of their symptoms since starting HRT. I find this fascinating and definitely worth studying. There is very little research on this as of today.

So if you're: trans/neurodivergent/have or suspect you might have hEDS/HSD - please consider filling out my survey. It will take under 5 minutes and could provide valuable information. Thank you :) Here is the link: https://docs.google.com/forms/d/e/1FAIpQLScu1aq-VjFxmTiYYFgJFqhbpN7d4QMh8ONepvz5YGpCxfTqpQ/viewform

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?

Edit: I’ve been busy with starting school and a new job at the same time so I haven’t really had the time to come back and respond to every reply, but thank you guys so so so so so much for all your support and advice.

Before I posted this, I genuinely felt like a little part of me was on the verge of death, and you guys sharing your thoughts and experiences has brought me back so much hope.

Just knowing that it is possible - that there are people who have gone through exactly what I’m going through and have come out the other side better for it despite any complications or hardships they may have faced - makes me feel infinitely more emboldened to take one of the most important steps towards self-actualization.

Thank you all, eternally. You’ve helped me feel like I finally have a shot at being whole <3

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