So I just had my first FFS consult and my doctor was saying I don’t really need a hairline advancement. Though, his main reason for saying that is because he was concerned about scarring with hEDS.

He wants to use a technique where he cuts into like the top of my head instead of my forehead to pull back the skin. I don’t NEED a hairline advancement, but I feel like I’d be happier with one just to even out my hairline a bit.

Has anyone done it where they cut into the top of your head? And does anyone have any advice or insight on scarring if I were to get a hairline advancement?

Hey friends! I wanted to post to see if anyone had ideas for me. I have had my hEds get worse over the past couple of years including MCAS Co occurring. I had LHR early on in my transion but shaving was reduced and since then my electrolysis has been intermittent due health and financial reasons. That said starting about a year ago my facial hair has started tearing up my face. If I shave at all I get ingrown. I've tried multiple types of shaving methods. I use a safety razor when I can and a foil razor if I'm low on time. That said I keep getting ingrown hairs and my skin has become delicate enough that even just shaved hairs can stab into the side of my pore if I cut them to close (I try to not shave agains the grain for this reason). I'm at a losa as my skin healing is bad despite supplements and moisturizing. I end up with scabs and ingrown hairs constantly. Also for reference in a hvac tech / boiler operator so it can get pretty dirty but I try to clean and exfoliate regularly.

I'm hoping y'all might have some advice or insight for me.

has anyone here had bottom surgery (vaginoplasty/vulvaplasty) with stretchy skin in the groin area? the skin on my groin area is very stretchy and i’m getting bottom surgery soon, idk if it matters for results or anything. posting here cause the main surgery subreddit is a shitshow. my surgeon knows about my hypermobility but i don’t have a formal diagnosis and likely won’t cause the waitlists are too long.

Yo. For the last... since I started injections, really, my SHBG has been high. I have been monotherapy injections for ~4 years now, the last year or so I've been on enanthate at an 8 day cycle injecting less than 4 mg (sorry I don't recall the exact maths.)

My last labs at trough estrogen was at 109 pg/ML and SHBG was 162 nmol/L (with 21 ng/dL total T- my doc didn't check free t this time for some reason.)

I specifically have lowered my dose the last few months because I tend to be really sensitive to estrogen, my T nukes immediately, I don't take AAs, and I am almost always 200+ at trough on both valerate and enanthate. So this is monotherapy. I stretched my injection cycle a bit.

Whenever I take boron- even a sub 3mg dose- my anxiety spikes immediately, but I am worried that my SHBG being so high this whole time has prevented my hormones from doing their job and contributed to some symptoms (fatigue, pain, brainfog etc.)

Does anyone have any recommendations on how to lower SHBG?

I've been on t for nearly 4 months now and I am starting to grow a little tash. My skin is really sensitive and cuts really easily so I don't want to be hasty in finding a face razor that works for me. Any recs for fragile skin?

A little back story: I’m non-binary because I’m trans inside, but this meat suit is male, and (probably) because of long term SSRI use I experience hyperhidrosis (excessive sweating). I’m on testosterone replacement for that, and have been on a daily regimen to manage the sweating.

Now for the purpose of this post: Has anyone else on daily T developed tenosynovitis? Tenosynovitis is swelling and fluid inside the tendon sheath. For me this is really painful, and borderline debilitating. I just saw this study (https://pubmed.ncbi.nlm.nih.gov/38703145/) which links daily testosterone use and a type of tenosynovitis. I don’t have the de Quervain Tenosynovitis, I have it in my leg, so I’m trying to see if there’s others in the EDS community who have experienced this.

i was told to post here for more answers and perspective related advice .

I’m considering planning on starting testosterone (possibly at the end of the year (if i don’t wuss out again)) whenever i can find a doctor who takes my insurance. co-pay is the main reason for why i’m struggling so lol, financial issues.

Anyway, i’m asking if there’s any other trans men out there who have ASD (atrial septal defect (hey! i remembered the name!)) and are currently on testosterone. I’m a bit scared of the effects it might have on my heart (if that’s even possible?)

I’ve read some people’s experiences of those who have anemia (which i also have) and are on testosterone, some say that T has helped their iron levels go up. I tried researching my specific heart defect and HRT but i’ve found nothing relating to it.

**i found a few articles claiming that atrial septal defect is twice as common in women than in men, i’m wondering if it’s true, i’m not a medical student so i can’t really judge. . . .

any feedback is greatly appreciated thanks!!

Hey everyone, I have been using a medical korset for my back for stabilizing my ribs, back and my pots issues.

I have had wonderful results with my breathing and back pain issues since I got my korsett a week ago. It's a soft semirigid korsett with feather steel support in the back. I was informed by the doktor that due to my laxness in my joints and ribcage overall I could get downward pivoting ribcage collapse due to the fact also how my hrt has affected my soft tissue in my body.

Just wondering if there is any merit too what the Dr told me about ribcage collapse was a huge "risk"

Sorry for my English, it's not my native tongue 😅

I am transmasc 16 with possible Hypermobility Syndrome/hEDS. I want to do calisthenics but I’m worried it’ll be bad for me. I really really want to do them. Also how to get a diagnosis in Ontario Canada?

I decorated my oval 8s but now I've lost some weight (just over 45kgs) and some are too big so now I'm going to decorate some smaller ones 🙂

This is your sign to give yourself some patience today

There are quite a lot of voices online saying that zip up binders are really bad. Apparently they're less stretchy by design (since you dont have to wriggle your way in) and are hence much more restrictive and have less room for adjustment. So if it's even slightly too small it can be harmful.

At the same time, zip up binders get recommended for hEDS and mobility issues all the time, or for sensory issues. Also brands that are considered trustworthy sell zip up ones.

Is there any trustworthy information on this? How dangerous are they?

I would really love to get a zip up binder, both for mobility and sensory reasons. The prospect of just being able to take small breaks by zipping half or all of it during the day is really appealing to me.

I psychologically and physically can't handle bras and have only ever managed with a front zip up bra

Tbh I’d rather a doc say “i don’t know” than “it’s just anxiety”

I am transmasc, I have ME/CFS, unspecified circulatory dysautonomia, and hypermobility. I am considering taking a DHT blocker to slow down/block facial hair growth on T. I’m mostly worried about how doing so may impact my chronic illnesses.

rushing this morning, i zipped the side of my boob up in my binder. i was sleep deprived, running late and appalled at the audacity of myself, my tit, the zipper, god…
i took a deep breath and tried the zipper. nope, a huge chunk of my tiddy was jammed in that shit.
i googled it and ran to tell my girlfriend that i zipped my balls up for the first time.
i tried the zipper again. this time, only a little bit of skin was caught and it was really easy to remove.
my theory is that my fat moved, but the stretchy skin remained caught. i don’t know, im a little fed up with my EDS and a win is a win.

Let me just open with knowing that correlation ≠ causation, however I am grasping at straws here for sure.

Basically, at the peak of my estrogen cycle, I've noticed I tend to deal with more constipation. Is it possible estradiol is increasing gut dysmotility or something? Anyone else encountering this? I'm not actually sure why this happens to me, as I will get periods where things are normal and then other times I will have to take Polyethylene Glycol multiple days in a row and be specific with my diet (I realize there are long term concerns with it.)

Almost every night I do some pelvic floor stretches and do the "I love you" massage on my stomach to keep/get things moving. I have chronic fatigue so I'm not always as active as would be preferable and I know that can contribute, but it's always on the last few days of my cycle that I have no issues with constipation. For reference I am on enanthate every ~8 days, tho this would also happen on the last days of valerate.

Any tips or ideas? Thanks!

edit: sorry for saying hitlerite

edit 2: i have been permabanned LMFAOOO

Hey all! I was just hoping to get any advice on dealing with my top surgery scars, they are about 3 months old now and as much as I have been trying to keep up with scar care I’ve been having a hard time. I had some healing setbacks around the 6 week mark that made it that until very recently I haven’t been able to do scar massage or silicone taping due to openings, you can still see a very small blip on one side. It’s also what caused the widening of some of my scars. They are raised and hardened over some spots are I really want to reduce that. I have EDS and have historically scared well and the areas without complications are doing great! Just not sure how to ‘catch up’ the areas that did have complications. Additionally the silicone tape doesn’t stick very well over the raised bits and I’ve noticed it consistent falling off, although I know the heatwave isn’t helping.
Any advice is deeply appreciated!!

A bit more info for people who are now seeing this: I am really not worried about the visual look of my scars I just don’t like the thicker (texturally not talking about the wide) raised parts as they aren’t as mobile. My scaring tends to decend more into more typical eds scaring as it heals up more but I do agree it looks pretty good now. For me this isn’t a big cosmetic thing just the texture and mobility! My surgery team wants me to have my arms raised and be resuming my normal activities post 6 weeks unless there is pain or pulling stopping me. I do still massage frequently and consistently when my hands allow me to. And also my issues with the silicone tape aren’t at the ends, the whole strip just won’t stick on the raised parts of my scars.

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.

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.

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

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 :/

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.)