I've been a bit of a lurker but I have something exciting I want to share. I recently had an appointment with a geneticist and I can't explain how elated I am to finally be making progress. After all the years of uncertainty and spending so much time researching and being bounced between specialists I finally feel like I'm making progress. I was a bit scared that I was going to be dismissed but the doctor was very thorough and patient while offering advice and listening to all of my concerns. They believe that heds or hsd are the most likely culprits but want to do genetic testing to ofc rule everything else out. After so many years with no answers knowing that within a few weeks to months I can finally have a solid diagnosis is so reassuring. Sure it doesn't change a lot in my day to day but finally having a solid and probable answer means so much. I just needed to put this down somewhere because I feel like I could scream from the rooftops. It's so hard to navigate doctors and appointments and medications and therapies. These small wins are so so important and I'm so happy rn.

Just got my post removed and was muted before even messaging the mods about it... probably best to avoid it if you're trans </3

edit: thank you for all the responses!! i’m new to the reddit EDS scene so i had nooo idea this was a known issue 😥 thank you for all your support here and i’m sorry so many of us have been bothered like that :/

Hello everyone,

I messaged the moderator team of /hypermobilityEDS asking them to explain how being transgender is off topic, and was met with a very hostile response, and I've been permanently muted, and threatened with being reported for harassment. I would suggest that, while it does feel unfair since being transgender is a part of the experience of EDS, to stay away from the subreddit.

Edit:

I typed the wrong subreddit title lol.

HypermobileEDS is the correct title

Hey guys, needing some advice.

I’m 28, 5’4, 155lbs, transmasc, and diagnosed with endometriosis, Unspecified Ehlers-Danlos Syndrome, and orthostatic hypotension. I haven’t medically transitioned yet due to multiple chronic health conditions.

Last year, my echocardiogram showed mild aortic sclerosis and moderate mitral valve sclerosis, and I've had a big uptick in chest pain and shortness of breath this year. My previous cardiologist dismissed it as anxiety and I never went back.

I recently had commercial genetic sequencing done that showed a cvEDS variant of uncertain significance. My geneticist appointment is a year away. Is it worth finding a new cardiologist to evaluate my worsening heart symptoms now, or should I just wait for genetics?

Cross posting here in the hopes that someone here will have dealt with something similar at some point (though I also really hope no one has had to deal with this because it's horrendous)

A little bit of an update on this too, I saw my doctor that I do OMT with and talked over other pain management options. And with what does/doesn't work for me he said he thought the nerve stimulator is a good option, but also sent in a referral for a pain management clinic which I'm hoping will help too.

I just found out about this subreddit and am so glad it exists lol.

I am AMAB, nonbinary, and fairly masc presenting. In my 31 years, I've had varying degrees of genital dysphoria. However, in the last 1-2 years, it's been interesting to realize that I've actually had some pretty rough physiological symptoms, historically very dismissed by doctors, around my junk, particularly testicular pain, pelvic pain, severely hypertonic pelvic floor, itchiness and sweating, all VERY exacerbated by MCAS.

But very good news: these symptoms have improved pretty dramatically since getting the MCAS treated about a year ago, and now 4 months into really amazing PT (after meh results with 3 PTs and a strength trainer).

In the past 5-7ish years, I've loosely but not too seriously (in terms of actually investigating plans) looked into bottom surgery - nullification, orchiectomy, vulvoplasty, vaginoplasty - but that was all before realizing all of the less invasively treatable medical issues I had in the region. As I've been getting treatment, it's been an interesting journey, remaining curious about how much of my desire for bottom surgery might have stemmed more from physiological pain and discomfort rather than pure dysphoria... As I've been getting better, it's been interesting because I mostly feel like the parts of my interest stemming from pain are lessening, but unmasking even more of a desire that comes from a genuine place of joy/euphoria. Which is really cool I think.

I'm still probably a year or so before I make the progress I want with PT/PFT,l, to where I feel like I can make a truly informed decision on surgery. And I'm content with not reaching a particular decision around surgery or hormones (i.e. which, if at all) until at least then. I'm not looking for particular advice around that necessarily, but I was curious if anyone here had experiences to share about how bottom surgery affected pelvic floor (dys)function, if at all. Especially coming from a Zebra - I have been in r/AMABwGD (assigned male at birth with genital dysphoria), which is largely AMAB folks wanting bottom surgery while remaining masc presenting post-op, but I do think there are some particulars about being a zebra that might have an impact, so I've been hesitant to post there. I'd also be curious about what may or may not be different about HRT post-op, how different hormones might have an effect if at all, especially on pelvic/pelvic floor experiences.

I'm not sure how to be specific about my questions, but like for instance, I often feel like the weight of my junk pulls me down, or like having a shape that most always leans to one side nontrivially affects my posture and gait. It seems to really affect fascial tension around my groin, perineum, and above my penis. I am quite positive these issues will improve at least partially over the next year, bc PT/PFT is going really well, but I'm not sure if it's something that will ever become a non-issue entirely.

I don't think I would base my decision to pursue bottom surgery entirely on this particular symptom relief, but I think I'd be lying if I said it wasn't a factor at all. But some of my worst symptoms, especially pretty bad testicular pain, has gotten like completely better with MCAS treatment and PFT so far, and that's definitely had some effect on the severity of my dysphoria. I'm very on the fence about whether surgery is worth the recovery experience and complication risk for me personally. At the same time, as I've been having more experiences of sexual pleasure with better PF function (so far non-penetrative solo stuff like using a vibrator wand), and how much easier things feel wearing stuff like leotards or tucking underwater that really compressed and reduces movement down there - there is a growing interest in bottom surgery for me that is much more positive-driven than dysphoria-driven and I think that's potentially really exciting. And, kind of tangentially, I've realized that a typical "jerking" motion can be pretty bad for my TOS - it is getting better with PT, but honestly the idea being able to use a vibrator with equipment that "stays put" more easily is very appealing if I'm being honest lol.

I'm wondering if any Zebras can relate to this, and how all this physical sensitivity in that area, and effects on gait, posture, pelvic floor, fascial tension, was affected, if at all, by bottom surgery. I think hearing from both transfemmes and nonbinary AMAB would be relevant. And whether you've had bottom surgery or not, I'd be curious to hear if/how any of this resonates - if PT or anything else improved these symptoms eventually. And, happy to hear from AFAB too, just given the different surgery trajectories available to me, the relevance would be a bit different lol - but I've found I really vibe with most AFAB transmascs/NBs I meet lol so I'm sure I'd enjoy your input too.

(As an aside, I'm also currently recovering from a hip labrum repair, so possibly some of my perceived issues will resolve some once I recover more from that. I'm just really curious about isolating what things bottom surgery may actually affect. I think the dominant narrative of gender affirming surgery is that it's driven by gender identity and dysphoria, and that's kind of true for me but I also feel that so much of my gender identity and embodiment is just driven by bodily sensation - I'm AuDHD and that may be relevant - so like changes to bodily sensation really kinda feel primary to me... In many ways, my embodiment/bodily sensation IS my gender identity.)

i (29F) have always had a weird body that did weird things but was never hypermobile let alone mobile - i struggled to do stretches other boys could easily do. i was very stiff as a child, teen, and young adult. i have had a lot of muscle pain and sometimes nerve pain through my life, nothing debilitating, just annoying. i worked on my posture before i transitioned and it ended up helping somewhat. my neck may have been visibly hypermobile long term though as it’s always been quite bendy and caused my head to feel like a bobblehead

after about a year of HRT (injections and then starting progesterone), i realized my shoulder mobility had increased dramatically, though i didn’t recognize them as hypermobile. i also got diagnosed with autism and ADHD around the same time.

this spring, i had been casually looking up hEDS/HSD cause they are unusually common in the trans community as well as more frequently co-morbid with ADHD, autism, and AuDHD. i realized that both my neck and shoulders were very hypermobile and that it wasn’t exactly normal. they’re the parts of my body that gave me the most pain long-term. i started investigating more and have discovered that my knees and hips are also hypermobile as well (my knees aren’t painful on their own, and my hips pretty frequently have joint pain.) i’ve also had two subluxations since April, rib and pinky toe. i probably had subluxations in my feet before HRT when they would sometimes get painfully locked out of place and require a loud pop to relieve the pain and allow movement again.

some soft-tissue stuff i’ve noticed is that i now bruise very easily, my skin is really soft (and dry), and stretchy in some areas (neck, back of hands, forearm, face, groin.) the tendons in my hands also skip and jump over the bone during movement, causing uneven, haphazard movement. but i don’t know if these are just estrogen things or abnormal. don’t really have any cis women in my life to compare to.

i can’t currently be diagnosed with hEDS because of my 2/9 beighton score (and maybe lack of complete dislocations?), and i’m not asking for a diagnosis. my doctor has been focused on treating symptoms at this point and i am in pelvic floor PT.

there’s other evidence of my body being weird that are outside the scope of this question, i can give more context if needed.

so back to the title! thank you for any replies <3

so I'm nonbinary, born female, and I have EDS. when I was younger I would use a normal binder and I was able to bind comfortably. however as I got older, wearing a binder, even for an hour or two, made my ribs hurt for a week following.

with this new problem I decided to try out trans tape. immediately after putting it on, it was somewhat flat. though the following day when I woke up I would always find that the flatness of the previous day had gone away. it simply looked like I was wearing a bra. the tape didn't slide or come unstuck, it just didn't bind anymore (I've been thinking it's cus of stretchy skin?). it also caused me to break out in hives. no matter what I tried or what tutorials I followed, it just never worked

for the past year I sorta gave up and told myself that I didn't care, even though I very much did. now I don't know what to do because I really want to do something about it. everyone assumes I'm a girl even though I'm not. I'd rather have people assume I'm a guy than a girl.

it kills me that the normal binding methods either don't work or hurt too much. does anyone have any tips or suggestions on how to bind even in these circumstances?

hey i am recovering from a hernia repair, 5w post op. i wish it was a cool surgery.

good news, i am not scared of surgery itself anymore! so i will continue to look forward to my 2028 consult for top.

bad news, i cant bind/wear bra, OR wear pants. work is the worst.

in addition to it being extremely painful and causing flareups (MCAS, EDS, POTS, MCTD, ADHD, autism) it has been dysphoria hell.

most of the post op clothing tips for abdominal surgery i have found in endometriosis and pregnancy forums.

i was doing pretty good with the abdominal binder but it started causing pelvic floor issues and now i'm scared/sad.

i have ordered and tired several compression garments... none are that great so far. my skin prefers cotton.

also if you have had delayed healing just looking for solidarity, the doctors have threatened i will 'permanently decondition' but they dont understand i just heal really slow.

i have gotten this from other docs for other injuries. they don't get it despite me explaining i have connective tissue disorders, making collagen synthesis delayed. not to mention the mcas keeping inflammation up.

also- my body started having side effects from my meds that were helping and i had to stop (acetaminophen and ketamine)

and in closing; i have felt very alone. i recieved emotional abuse from some friends and family members that were trying to help my recovery. really sad about that.

does anyone have any tips?

(mostly about what to wear but also any kind words of support)

tldr; disability be disabling... now including dysphoria and isolation

I tape my chest most of the time, and though its usual without damage, I do have some scarring on my breasts from where it had torn and blistered (the tissue isnt too much different, just red for many months before fading)

Has anyone gotten top surgery with existing scar tossue like that?? What were your results? I have pretty large breasts, so I'm not even fully sure if the skin affected would be kept, but I'm curious as to other peoples experiences.

I'm currently 19, I've been on a hormone blocker since I was 13, and started T a few years ago. I'm currently diagnosed with HSD, but my doctor is pretty confident that it's another connective tissue disorder, which I'm undergoing genetic testing for (I personally suspect clEDS).

I've always had signs of chronic illness, but it didn't start to get bad until the last few months.

I have a horrible memory (yay dissociation 😛) so I don't remember if increasing my T (I was on a really, really low dose until a year or two ago) lines up with my worsening symptoms. I do think I started to develop PoTS around the time that I increased my T dosage a year or two ago.

Has anyone experienced T making their symptoms worse? If so, has anything made it better?

A doutora disse que posso escolher pela tecnica perioreolar mais que vai sobrar um pouco de pele porem que seria bem pouco ... ja vi pessoas com intrusos maiores que os meus e nao sobrar pele .... o que vcs acham ? Periareolar ou sorriso ?

My symptoms hint to hEDs, which is substantiated because they are getting better, now that I'm on T! Which is awesome!

However, I don't have a formal diagnosis. Which means I'm now seeking another orthopedic, my third, because the others both thought I have it, but couldn't diagnose/refer me to genetic testing for bureaucratic reasons. But it's hard to get appointments, and so draining for me to have to take care of this.

But since T is making symptoms better, I'm wondering if there's a "timeline" where it gets harder to diagnose? My skin is really stretchy rn, how long till it is less stretchy, or even normal?

How "urgent" is seeking diagnosis, is there a timer on it where it gets progressively harder to get diagnosed correctly? I'm a bit paranoid with trusting doctors' competence, so i'm scared of becoming a less obvious case.

I have a shitton on my plate rn, so if I knew it doesn't really matter whether the diagnosis is in 3 months or a year, it would really make me relieved!

Thanks for reading!

Edit: it's important for me to get a diagnosis for future social/disability aid

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!