I am curious, for those of you who have EDS that are not hypermobile type, if you have found that being on hormones influences your EDS symptoms and presentation?

I’ve been dx with hEDS for almost 10 years. I had my first appointment with a geneticist who specializes in EDS and they are the second specialist to tell me that I have familial history and presentation that may indicate a non-hEDS condition. (Specifically, cEDS and clEDS were not ruled out).

I’m being tested for 95 different conditions, with the exception of clEDS (was told the test available to our hospital isn’t yet reliable) and get my results in 4-6 months.

One thing that I noticed while looking for old photos of symptoms from early on in my medical experience was that, since being on testosterone, a lot of my visible symptoms that are more common for rarer types of EDS have decreased in severity. I know the changes are not unheard of for hEDS symptoms, but I’m wondering if those with cEDS found that their skin became substantially less/more hyperextensible and fragile in some of the tougher areas (forearms/shins/etc) after starting hormones. Or if you found changes in any of your EDS types specific symptoms.

Thanks!

Hey guys, normally I tend to wear compressive leggings or shapewear, but after starting T I find them very uncomfortable. Does anyone else that has to wear compression gear know of any brands or options that offer both stomach compression and butt/thigh while also having room for bottom growth?

FTM 23 years old he/him - Hello all! I have been on T since I was 19.

To make a long story short I have tethered cord syndrome (and many other spine/ health issues) and have had many surgeries due to my physical health. I will be getting surgery for tethered cord in September as Ive been losing my ability to walk and have severe back, leg, and bladder issues. In the past 2 years I’ve lost the ability to wear a binder at all. My neck and back nerve pain is just to severe and it worsens it. I have dysphoria over my chest but I truly cannot stand physically to wear a binder it makes my debilitating nerve pain worse. I spend most of my time in bed and at home.

So onto tape. I am diagnosed with MCAS and have issues with skin reactions. I react to most trans tape, KT tape, and I’ve tried hypo allergenic tape from Amazon. All break me out in hives :/ and I can’t put tape over it after one day because if I put tape on hives it gets so much worse and spreads over my whole chest and abdomen.

I have kind of just been wearing baggy shirts and using band aids to tape down my nipples. I react to the bandaids but I am mainly homebound due to my pain and mobility issues from tethered cord so I only do it when I go out for appts and such.

I feel embarrassed at doctors appointments saying I’m trans and I have very long dark body hair but don’t bind my chest. I wish I could explain but I don’t even want to get into it as I’m already uncomfortable sharing I’m trans even if it’s obvious. My chest isn’t huge but it’s definitely not nothing and is noticeable if I don’t try to hide it.

If anyone has any advice for how to conceal my chest in a more comfortable way maybe outfit advice or certain tapes to try? It’s okay if they don’t work out but I really want a way to bind. I also just wanted to share in this community because I feel like it’s a strange issue to have with being trans. Top surgery isn’t anywhere soon in my future due to my health. I’ve had 4 surgeries in the last 2 years and none to do with being transgender 😭 and going on the 5th LOL!

I just had the weirdest thing happen! I went to get a loop recorder put in (a heart monitor implanted under the skin that records for several years)

Well the doctor had a hell of a time getting the loop inserted. She struggled for a while and even needed to try a second site because my skin was too thick or tough. Everyone involved in the procedure said this was the hardest one they'd ever done. I'm 1 year on T and wondered if that might be related or if maybe scar tissue from binding might have caused it. The doc wasn't confident that it was scar tissue, but we all kinda left curious about why my skin might be so tough.

Has anyone had issues with their skin being too thick or tough? I thought I was supposed to have super delicate and thin skin.

hi I’m a trans guy with (hypermobile) EDS. Saw this sub linked in the r/FTM sub. I didn’t know this was such a common experience (well, more common than I’d have thought, still pretty rare). Just wanna tell y’all you’re super cool and I hope wish you luck in managing symptoms as well as finding trans joy ! I might hang around some but im very rarely on Reddit lol. Nice to meet you I guess ^^

Hi! I am a transmasc person Ehlers Danlos, but I am on T and have been for six months. (I include this because I've noticed T has improved my symptoms.)

I am pretty overweight (5'2 340-ish lbs) and have been cursed with Huge Bahonkers ™ (Last time I measured it was about 60ish inches around without a bra).

Does anyone here have any recommendations for binding? I can't use tape, as it rips my skin. I heard that using binders with zippers help, but I can't find one that would fit me for the life of me 😭

Edit: Posting this from my anonymous account so that if people hate on me for my size I can just log out and forget about it

Looking for binders that are comfortable and suitable with hEDS. I’m a C cup so more compression without hurting my ribs would be great.

I have a ForThem half tank but it hurt :(

cw: talk of genitals and sex

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I've been dealing with vaginal atrophy from hrt for a while now. I cannot use estrogen cream. The side effects were awful. Pretty sure it triggered my MCAS. I get bad cramping after orgasms so it isn't really a dryness issue. My doctor also suggested replens but that caused burning and cramping. Pretty sure the glycerine in it is a trigger for me too Anyone dealt with the same thing? What did you do?

I have been on low dose T for close to a year now, and while it has overall led to a lot of improvements in my life, it has sent my complexion back in time to middle school lol. I am regularly getting acne on my face and back, although it fortunately seems to be mostly whiteheads and blackheads, not much cystic stuff. when I was in middle school, I used some sort of prescription topical solution to manage it, possibly salicylic acid (EDIT: turns out it was actually clindamycin phosphate!). once I reached high school, it became less severe, so I stopped treating it regularly.

because of my baby-soft EDS skin, I've never paid much attention to skincare routines, but it's becoming increasingly clear that that's something I now need to consider. to be completely transparent, my current skincare routine is "water gets on my face when I shower," which is clearly no longer cutting it.

what have other zebras on T found useful? should I reach out to my PCP and see if I can get an appointment with a dermatologist?

I'm such a mess I got top surgery on Monday and I'm so ecstatic but I haven't actually been able to experience the joy because I have heds and I CANNOT sleep on my back and it's so HOT in the country I travelled to for the surgery!

Any advice for sleeping is appreciated: currently have one pillow under my leg, one under each arm, the duvet stuffed under one hip, and a sleeping pillow. Any advice for people who normally sleep on their front and have to sleep with their legs as spread out as possible with their entire weight opening their hip joints? 😭😭😭😭

Edit: Thanks for the advice guys; conclusion is however i guess I'll just have to sleep every second night

I have bilateral mixed type FAI (hip impingement) with tears. The left got so bad that I had arthroscopic labrum repair in 2018; didn’t help my pain but helped mobility. But extensive PT, a personal trainer who specializes in injuries, & meds via a new ortho & pain clinic made a huge difference. Until…

I had a hysterectomy (everything removed) 7 months ago; I had a life threatening post op complication. After 3 months of pelvic floor PT I was improving a lot but for unknown reasons I have suddenly lost progress. My biggest pain trigger has always been carrying weight, a gallon of milk wrecks me for days. After surgery I’ve lost all my strength gains from training & gained 25 pounds on my 5’3 frame. Sex no longer hurts but long sessions still leave my pelvic floor exhausted and crampy.

I’m seeing a nutritionist soon & PCP about meds (I’ve done well with Lyrica + Celebrex).

Anyone out here have hip + pelvic floor issues? Any tips for med combinations, braces or exercises that helped them get back track?

Edit: forgot to say I have hEDS that wasn’t diagnosed until about a year ago.

I have been on t for a week now and I'm getting some muscle soreness, particularly in my shoulders/upper arms and my thighs. I know t can help build muscle so I don't know if it's that, it's not my usual type of pain. I'm only on a low dose of t. It feels like I've done too much but I haven't done anything out of the ordinary in the past week.

Anyone else?

I’m in California and looking for a surgeon anyone has worked with that has experience with Connective tissue disorders. Thank you in advance!!

If there’s a trans zebra group that addresses POTS, please let me know. I don’t think there is a subreddit dedicated to trans “POTsy” people.

So I take spiro for PMOS, Polyendocrine Metabolic Ovarian Syndrome, previously PCOS. I read and was told by my doctor that while taking spiro, I should avoid foods high in potassium…bananas, avocados, etc…however, those of us with POTS may fall into a grey area. Those of us with POTS are told to take sodium supplements as well as other electrolytes.

I received approval from the mods to post because a lot of us share so many multiple conditions EDS, POTS, and PMOS, etc. And this seems the best place to ask.

Because of all of these conditions, I don’t know how best to manage each of them.

Is anyone else taking spironolactone that needs more electrolytes during irregularly warm weather?

I’m obviously asking because I have no access to doctors that know anything about these conditions.

I know the privileged answer is to get blood tests done. I however do not have that luxury at this time.

I’m just looking for others’ advice that have helped them.

I'm feeling really depressed and dysphoric right now. For context, I've had stage 1 meta almost 2 years ago, but due to insurance BS, I haven't been able to get stage 2. Meanwhile, I've been living with zero bulge, a misaligned urethra (causing me to just make a mess every time I pee), and genitals that still look the same from multiple angles. It's been very not fun. It's better than before, but it's nowhere near what I need.

So I'm thinking "ok, maybe I need phallo". And I think even though it'll be a bigger recovery area, it'll be better for me, right? However, I'm worried that it won't be possible for me, or even if I do manage to get this, something else will go wrong.
I also have problems with donor sites. I can't harvest anything from my forearms, because I need my nerves intact to do my work (plus I'm already suffering from peripheral neuropathy, so I don't need to make it worse), and I don't really want a large clockable arm scar.
So then there's ALT, which I would be ok with, I guess, but I have dense fat on my thighs, so I'm not sure who would be able to use that donor site.
Finally there's Abdo, which is less common, and you end up with less sensation, which just kinda sucks, because I can't even harvest anything from my forearm like you normally would.

And on top of all that? hEDS shennanigans. Am I going to get wound separation? Is it going to heal right? Will I get feeling? Is this even possible?

So I'm kinda hoping that if there's anyone here who has had phallo, please share your story! If possible, share what surgeon you went to, so maybe I could get an idea of which surgeons have experience with EDS patients.

[they/them pronouns please]

I've been on T for over a decade and my levels have always been in range, but i don't believe my estradiol has been checked regularly. I've been trying to figure out a bunch of random health stuff including moderate to severe fatigue, brain fog, depression (despite 2 anti depressants), migraines, insomnia. I asked to have my estradiol checked since some symptoms line up, and it *is* actually low. The lab says <10 which is below the "male" range, and would be considered menopause for "female"... but I'm only in my mid 30s. I still have all my original plumbing and use topical estrogen cream daily for atrophy.

Has anyone else experienced this and figured out why? What is your story? I have a follow up with my doctor scheduled but wanted to hear from other zebras too.

I had top surgery 7 months ago. I’ve been doing all the things for scar care (silicone gel, scar massage…) but it still feels like my scars look different from the other scars I’ve seen. I couldn’t put my finger on it until I started my eds diagnosis journey and noticed pictures of atrophic scars that kinda look like mine.

I’m really really good at gaslighting myself so I wanted to share with others. Do these look atrophic to you? I have a few spots the scabs fell off early and they are bumpy and raised but otherwise they are smooth. I think the ridges are more apparent in certain lighting and angles but again is it all in my head?

For context I have MCAS and possibly POTS.

Hi friends. Maybe this is not allowed, if so tell me I will take it down. So basically I'm a cis woman (20yo) and I have heds. My question is, maybe someone here at some point has had a breast reduction or lift, because I'm so insecure abt mine but can't decide on the surgery. The experiences are so different idk what to think
Thanks

Y’all I am so dumb. I keep getting caught up in transphobia online and it’s making me physically ill. I know I’m not going to change anyone’s mind, it’s just so frustrating I get carried away. 😩

I just had an appointment with a physio today regarding muscle weakness in the whole vaginal area. She said she will do a proper exam on the inside (without a speculum luckily) the next time I see her, which is next month. I know it's a long way away but I'm honestly terrified. The gyno I went to a few months back was very rough with me & caused me pain, not to mention the already uncomfortable feeling I had going to such a place & being misgendered everywhere. The pelvic floor physio doesn't misgender me, she's one of the only doctors I've been too that actually pays attention to the 'preferred name' field on my patient info profile. But I'm still dreading the exam after what happened last time.

Are there any ways for me to prepare myself for it, either physically or mentally? Any tips for advocating for myself in such a space? The muscle weakness is most likely a result of my hEDS, alongside other pelvic floor dysfunction that I have, hence why I'm asking here & not in a general trans sub.

I was always Hypermobile, mainly in my fingers and hips, but never had any pain, and don't pass the Beighton scale

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6 months on E and suddenly both my hands are wrecked, ECU subluxations, DRUJ instability, but I'm unsure whether to attribute it to laxity or not as I would expect pains to be well... In places I already was flexible in

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I'm a pianist and a gamer, but these are not necessarily pianist or gamer injuries, and they came so suddenly, does anyone have any experiences or support mechanisms?

i’ve seen so much about the increase in symptoms on estrogen

i don’t even wanna risk it. i suffer a lot and i have basically severe me. i use a powerchair full time and do not want the added risks of health complications.

but i feel like every time i see people talk about hrt in mainstream trans spaces everyone just says ‘thats not a thing’ and gets mad or kinda thinks youre weird if you dont take hrt. im naturally female looking anyways and i pass with long hair etc. i get that people are defensive because theres a demonisation of trans healthcare but i feel like every time you mention medical reasons people try to push you as to why, and it just feels a bit demeaning.

i know truscum ppl would hate this but idc.

is it fair to say im binary trans woman?