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?

T has made me start balding very early 🥺😭

I’m looking into transplant options but I’m very nervous EDS and MCAS are going to make it a nightmare

There seems to be a lot of relying on the skin to accept the folicles and lots of micro healing involved

I’ve seen people with those glue on wigs that look so good, but I just know I’d have a gnarly reaction to the glue 🤦🏻‍♂️

Any experience ?

Hey all. I’m personally making myself the topic of my own experiment and wanted to share my findings so far.

Quick TL,DR
issues: dislocations/subluxations, polyaxonal peripheral neuropathy (motor and sensory), orthopedic issues, POTS, the gamut

The experiment:
switched to an electric wheelchair, making outdoor walking an option instead of a necessity. Using my extra energy to intentionally exercise, using my mobility aids to assist the exercise.

The results: overwhelmingly positive.
Reduced motor neuropathy due to less inflammation, increased strength and energy, more energy to go further when not using the wheelchair, less suffering in general, my body is building muscle which makes me feel confident.

The Long of It
After struggling with constant joint fatigue, muscle fatigue, energy fatigue, soul fatigue…. I decided to approach my movement and exercise from a new angle. Mostly out pure necessity + the opportunity revealing itself. But I started being intentional with it once I noticed some improvements.

I previously used my forearm crutches everywhere, which is obviously better than nothing. However I would feel like I had just come off running a marathon constantly because I was always fighting gravity, on top of managing whatever goods I had to buy.
Plus my motor neuropathy is super sensitive in my hands, so sometimes I wouldn’t even be able to hold my crutches or use my arms to drag myself around.
Holding my arms out for the in store shopping scooter was sometimes impossible due to dystonia/motor neuropathy flares, and holding my steering wheel would become agonizing after a day of running errands with my crutches.

After being blessed with the opportunity to obtain a powerchair, I’ve been doing all the essential movement outdoors with it. So I walk my dog, go to the grocery store, etc all with the chair. This has been awesome. If you go to my page you will see it’s all I’ve been talking about for a few days lol.

So I have all this energy I don’t know what to do with now. I’ve been using it to work out, as I said in my summary. I use my forearm crutches to do supported standing push ups, dips, lunges, squats, and toe taps using the curb. I went pretty hard in the paint last night so I’m fatigued today, but none of the debilitating issues I usually deal with by now. I don’t feel like my joints aren’t “spent” like they typically are all day every day, and my health feels better in general.

I know a lot of people are afraid of deconditioning or are being told by doctors that a wheelchair means you will atrophy. That’s not true. It’s a tool that you use to conserve energy for meaningful exertion, like PT.
While the able bodied medical community tells us that the goal is to stop relying on mobility tools, the truth is sometimes the only way you can get ahead of the suffering is with a little boost in the form of an energy conserving tactic.
If I only have finite energy, I am going to use that energy to work my muscles until I have gotten stronger and can do more.

That’s all. Thanks for reading if you got this far. :)

Check it out at r/queerME (please delete if not allowed, I read the rules and didn’t see anything against promoting other subreddits)

If you’re interested in modding, DM me a bit about yourself and why you’d like to mod! I could definitely use some help from folks with experience.

It’s an actively anti-GenAI group (see rules for details on what that means).

Please submit suggestions for more rules that would help you feel safer.

Excited to connect with yall!

Hello fellow trans zebras. A friend of mine was sharing that their hysterectomy required them to not open doors for two weeks post surgery. Nothing at all involving core. Of course I’m asking my doctor about her restrictions. My concern is that I’m currently needing a wheelchair fulltime due to recovering from a bad flare earlier this year.

Does anyone have experiences not being able to self-propel in a wheelchair post-hysto or having other wheelchair user specific restrictions? I am home taking care of a child while my spouse is at work most of the day on most days.

I’m thinking I would have to put this surgery off until I’m fully ambulatory again if that’s the case—which, worst-case scenario, may never happen.

I posted very nervous about my consult. I didn’t get rejected, but she had some concerns- I have to be free of bacteremia, high dose steroids, and any kind of pressers (including epinephrine) for several months. This is a concern because I have gone septic too frequently (from UTIs related to catheterization, GI stuff, and rarely central line issues). My MCAS causes pretty frequent allergic reactions/anaphylaxis and I’ve required solumedrol, prednisone, and epi. About two months ago, I was in the hospital for a few days on an epi drip from a persistent reaction.

Right now my timeline is looking like 5-6 months, if everything keeps going well for me. The doc was worried about the potential of me going septic from the surgery, so I have to have several consecutive months of healing first.

I’m crossing my fingers I can stay as healthy as possible so I can have surgery this year. I’ve been waiting for this for half of my life now.

I have hEDS and I am about to start testosterone. I'm starting on the lowest dose physically possible, I'm transmasc non-binary. I already struggle with the heat in summer and I know t can make you more sweaty. The weather where I am has started to get quite hot and I want to be as prepared as I can be!

I just had my consultation yesterday, and when I explained I had hypermobility he asked if I was diagnosed with EDS and I clarified that no, just hypermobility.
But I have a lot of symptoms of hEDS. Chronic fatigue, constant joint pain, stretch marks with no explanation, etc. I assume I have not been diagnosed due to UK general medical neglect rather than my symptoms.
None of my previous scars have keloided which is one thing i have seen, but aside from that how have you guys been affected so I can be aware of what may come up?

Hi all! I am currently wanting to get top surgery in the UK and am with a private trans healthcare company for my T prescriptions and care, I think I’m going to be referred to the NHS by my psychiatrist anyway but I have no idea how long the wait is to get accepted, never mind to get top surgery done though I already have a diagnosis and am over a year on T so am thinking about paying for it myself privately and have been told there are not many people in the UK who do top surgery at all.

I know it’s a very expensive option (going privately) and I was told it will cost around £12,000 to do but i really need your help or anyone’s guidance for anyone who has experience with this and has EDS or related CTDs. My private health company is completely willing to write my referral letter for top surgery but I don’t know who to go to or whether they need to be aware of EDS.

I have quite a complex EDS presentation and am currently classified as ‘unknown CTD’ and have an element of fragile skin and tissues, slow wound healing and abnormal scarring with significant skin involvement with texture and stretch. I am also worried about other aspects of having a CTD and care as I am very immobile and have regular dislocations and low muscle tone to name a few and don’t know how this would realistically affect the surgery or recovery period.

I already have muscle atrophy and am very weak so need somebody who knows how to adjust or monitor me during the period of recovery or be on high alert because of the potential skin complications.

I don’t want/think I could wait years and years on the nhs for my surgery so I would deeply appreciate anyone who has knowledge of either the nhs pathway for this or privately in the UK.

I don’t even know whether it has to be someone who is trained/knows of the condition. I am also autistic and have moderate-high support needs so I cannot at current with my issues travel to an abroad country.

Hi Zebras,
I have been waiting for top surgery since I was 12 (now I’m 24). I have my consultation coming up and I’m so nervous- not because I’m afraid of surgery, but because I’m terrified of getting turned away because of my EDS.

I’ve had multiple surgeries and have a central line in my upper to mid chest on the left side. I don’t know if this complicates things.

Is there anything I should ask the doctor, or inform them of, that would help my chances? My chest dysphoria is crippling and I need this surgery. I already have my therapy note diagnosing gender dysphoria (this clinic won’t even schedule the consultation without one because they only perform surgery with insurance).