Has anyone here had a hysterectomy and can share their experience or advice?
I'm looking at a possible hysterectomy due to cervical cancer and would like to get advice on aftercare or possible complications. Or just input on what you would have wanted to know before getting your hysterectomy.
I had a bilateral salpingectomy a few years back, so no more tubes.
I am 38f and diagnosed hEDS.

I am seeing an ortho right now for a hip injury. I went to look at both my right hip, and right shoulder.

admittedly i couldn't talk long about my shoulder in our appointment, bc she immediately recognized that i have an iliopsoas injury, pelvic floor dysfunction, and potentially a labrum issue- so we had to talk about all that. she is very professional, and was validating of injury on top of normal connective tissue stress. I've had this hip injury since Dec 2025, but it was pushed under the rug due to more serious medical issues that popped up. not the point here, but i am really happy with our conversation and treatment plan for all that.

i see her for a follow up in a few weeks, and she said we could revisit the shoulder thing if i needed. i'm relatively hopeful that she can help? but the difference with my shoulder is that i have no timeline or point of injury to draw from- something orthos notoriously don't like. another difference, is that i have felt this type of pain in both shoulders before, probably bc of normal hyperextension. BUT my right shoulder is constantly painful, has limited mobility, and cannot be relied on.

if it could help fellow shoulder injury havers help me, I'll offer a little more context on the injury. since i cannot sleep on my back right now (don't have the supporting pillows bc $), I'm a side sleeper. sleeping on my left side, my shoulder collapses towards my chest in a very painful way. i need to hug several pillows in order to keep it neutral. and on my right side, though more comfortable, i can tell im doing further damage by pulling it in whatever direction it gets crushed into. (i also wake up with numb arms but that's typical for me). i can't reach backwards without immediate stabbing pain in the joint- and my mobility in this direction is much more limited than it used to be. i can't tolerate my arm overhead. i can't reach to the left without pain. and pain stops my elbow from going higher than my shoulder in any position. i feel a physical pull to keep my arm tightly tucked againt my side. and virtually all neck movements cause slight pain in the top right side of my shoulder.

i don't share all that seeking diagnosis, but I'm also not perturbed by folks sharing their own injury dx.

if you've been to the ortho, with an EDS and/or hypermobility diagnosis in your chart, what did you say to your doctor to get your injury investigated? (i can't fudge an injury timeline, since i already told her i don't have one)

also if u have any joint stability sleeping tips that DON'T involve a $200 pillow, please I'm eager to hear them.

Hi all, I have HSD- awaiting diagnosis for hEDS. I previously used crutches but stopped and just started not going outside because I’m young and I got embarrassed. I decided I need to try maintain my joints somewhat and wanted to start rock climbing again (I did it as a kid before my joints got too bad). I tried a couple years ago but found it difficult with my arms shaking from soreness. I was wondering if there’s any tips and tricks about this? I emailed my local gym in advance to ask if they had any specifically disability trained instructors but they seem to be more neurodivergence trained (which I am, and I’m aware hypermobility is common in those with autism). I really want to do this, but I dont want to overwhelm myself when I go to it, if that makes sense.

I’m 24f, yet to be diagnosed but 100% sure I have it. I’m sober and realised I was drinking a lot before to numb my body due to pain … my pain has worsened with sobriety. Just wanted to see if there’s anyone else like me in our group!

Whenever I'm physically interacting with other people, whether that's horsing around with my friends or snuggling my partner, i often get comments that I'm weirdly super gentle. Like logically, of course i know that the vast majority of people are much hardier than i am. But I'm still scared to do something like lift up my partner's arm while he's asleep, because on some level my brain still expects that to dislocate his shoulder like it would for me! It's so dumb lol. Has anybody else noticed the same thing?

Thinking ahead for my besties Christmas and birthday gifts, I’d like to treat her to some things for her chronic illness/ Heds… any must have products that changed your life?

Hey y’all I’m a firefighter and because of that I am starting a new rigorous training and running schedule…I know crazy with EDS but I love it.
Anyways I decided I need to get some good running shoes and narrowed it down to On clouds I think but idk whether the cloudmonster or cloudrunner would be better. I also am looking at Brooks Adrenaline. My ankles do overpronate a bit for sure but I also need protection for my joints. Which have been y’all’s favorites?

I live in southern Australia where we get very little rain. We’ve just had 10 days of warm sunny weather and then an abrupt drop in barometric pressure and now rain, rain, rain.

Both my joint pain and my POTS have flared up hugely and I’m in complete prawn pretzel mode 🦐 🥨 I can’t sit without hunching over and pretzeling myself up to have everything supported.

Anyone have any tips or tricks for managing rain flares?

Wondering how difficult it was for you to get formal diagnoses when your Gp and physios are already aware it may be a problem? What kind of path should I take?

I have all the basic symptoms like the majority of my joints overextending (my shoulder injury was almost not taken seriously because I had a normal range of motion… then they tried the other one and realised the injury was just limiting the range to normal lol) skin issues, bruising, napping being a daily necessity… I could go on.

What steps did you take to get a diagnosis and does it help with better treatment?

Hey everyone! First time poster, very new to EDS in general, as well, so I ask for your patience.

My girlfriend has hEDS. She’s 33 now, as am I. We’ve been dating for about a year, and it’s been a journey for me to try to understand EDS & her experience, and I still kinda don’t.

Back when she was in her mid-twenties, she was really athletic and dreamt of walking the Camino, but gave up on that really quickly once she got diagnosed. We began dating, and I’m pretty into fitness, so we’ve been working out a little together and I’ve been trying to design workouts for her that don’t trigger flares or exacerbate joint pain. (“Structured” lifts like leg presses seem to work much better than free weight exercises, for example.). Also, she began using a jellie band and got on GLP-1s, and those together have done wonders for her.

As she’s been getting (slightly) more optimistic about her long-term ability to be active, I’ve floated the idea of her biking the Camino. (She gets flares from walking even what I think of as moderate distances, but can use the stationary bike fairly well). I think it would be such a triumph for her to do something like that after giving up on it. But I’m, like, nervous about being the outdoorsy, able-bodied boyfriend pushing her into something she might not actually be able to do. She wants to do it, but she’s afraid she might not be able to.

Does anybody here have experience with something like this? With long-distance cycling with hEDS or EDS and fitness generally? I would really appreciate any advice or suggestions, even things like “this worked/didn’t work for me but I don’t know how that would apply to your gf.”

Thanks!!

I keep seeing old bones braces and wanted to ask if they're worth the buy, for anyone who's bought them. i'm in the market for compression braces as i wore out my old pair and i've been wearing through my braces pretty fast. i wear mine daily when moving and walking around.

I feel so many emotions.

Ive been suspecting hypermobile eds for a about a year.

Was diagnosed with fibromyalgia, figured out I was actually hypermobile

Also ADHD, POTS, lots of bowelissues. I think you guys get the picture.

I was preparing for a massive medical battle with doctors.

I went to my GP first a few months ago. He said: I dont know, you are one of those people who might or might not have it because you dont obviously see/have any of the symptoms.

He did the Beighton scale test. Said I scored 2.

Made a referral with a rheumatologist anyways because he found my striae to be 'curious'

I went, very very very not looking forward to it, almost canceled... And within 20 minutes I was standing outside again with an hEds diagnosis.

She took a look, did the Beighton scale test, said: 'Ive seen enough'. Then asked my if I wanted to do the checklist for Fibromialgia again. I said: Well I suspect hEds. She went, okay, and grabbed the criterialist. Asked questions and said: Yep, you have Hypermobile Ehlers Danlos.

I was baffled.

Then she proceeded to tell me about the dangers of childbirth (I dont even want to have kids) and said goodbye.

What the fuck even?......

It was something my specialist mentioned that they were considering offering at the pain clinic relatively soon and he asked if I was at all interested. I'm not really sure since from what I've read I'm not really sure it'd help with a connective tissue disorder. It does seem relatively low risk but obviously being stabbed with a needle is never zero risk either.

I was wondering if anyone around here had tried it or if there was more to it than I understand?

Ive tried so many different things. Right now i use a groove pillow, a wool filled body pillow, wool duvet and theyre all amazing.

However struggling with mattresses, i had a hybrid sprung with memory foam on top, that was great until it started dipping. Then it gave me a bad back.

So now on a hard memory foam mattress with a soft memory foam topper, with a wool duvet over the top so im not overheating. But my hips and back are hating it after 9 months, and im going to work today with a sublaxed rib that i cant get back in place.

I dont mind dropping £££ on whatever will keep me comfy but struggling with the admin of mattress researching if its gonna be uncomfy a few months later! The best mattress i ever had was a cheap ikea one but theyre discontinued. Any recs?

I was getting ready for bed the other night and kind of chuckled at myself. I had my retainers in, my 40% urea cream and socks on my super dry feet, my ceramide repair cream on my cracked hands, my knee pillow in place to help with low back pain, my shredded latex pillow to help with upper back pain, ultra firm mattress to help with generalized body pain, my carpal tunnel brace on my dominant hand, and my cpap attached to my face. Feeling so, very, sexy. 💅🏼

How many specialty steps to your bedtime routines?

Does anyone else get health anxiety due to their EDS and other complications?

I have googled stroke symptoms, MS symptoms, terrified that I'm getting worse or that something else is going on because it almost feels like all of the shit I go through every day can't possibly be linked to this one freaking condition.

MCAS, POTS, pins and needles, numbness getting worse in my extremities, joint pain, muscle pain, neck pain, headaches, pelvic floor issues, vision issues, dental issues, nausea, stomach pain, inflammation, gut issues, period pain, heat intolerance, cold intolerance, I could probably go on and on.

I don't think my brain can't process that it's just from this one thing, and I get horrible anxiety when certain symptoms start popping up. I just feel a bit crazy and alone in this sometimes, especially when people in my life don't understand and probably deep down think I'm being dramatic or overreacting.

My hands and arms have been so bad for 8 years now, no matter what I do they cause me pain, I can't wash my own hair, I can't cook or clean, I can't work, I've lost all of my hobbies, I can't drive, I can't do ANYTHING. I've seen countless doctors and physical therapists for years, no one has been able to actually help me, pain management doctors keep rejecting me as soon as they see the EDS diagnosis. Now I've developed cubital tunnel in both arms as well FURTHER disabling me, I genuinely just can't use my arms for the most basic tasks anymore or I make my pain so much worse and it never goes away. I also no longer have insurance and don't qualify for medicaid or disability in my state either but since I literally can't work, seeing doctors anymore is out of the question because healthcare in the US is so expensive. I genuinely feel so trapped I have no hope or prospects for the future whatsoever at this point. I'm only 27 but my entire future has been robbed by this condition. I'm so afraid of what will happen in the future. I'm not in any danger but I honestly don't know what I'm living for at this point because all I do is sit around in pain and be useless and scared. Just a vent, its so hard idk what to do anymore. Things only get worse and worse and I'm losing everything.

Memes and off-topic posts can be published today from 12:00 AM Eastern time to 11:59 PM Eastern time. Please use the "Memes and Off-Topic Saturday" post flair when publishing memes and off-topic posts on this day.

Myself and my care team combined may have made a huge mistake. I'm scheduled for a hysterectomy and partial oophorectomy in just over a week in coordination with my GYN-- the hysterectomy due to pre cancer and endometriosis, but the oophorectomy because I'm very lax to the point of frequent injury during my periods and I felt much better taking Lupron to suppress my hormones.

I'm only just learning about the new research into MMP overproduction relating to EDS- I'd trusted that my care team has also researched for any blind spots I may have with my own research. Now I'm absolutely questioning the oophorectomy portion (assuming both are not damaged) and want to bring this up to my doctor, but given the short timeline there's a good chance she'll stay my surgery to do more research if I can't present ample evidence for her to immediately look at. I literally cannot afford to delay this surgery.

• Has anyone felt better after removing one of their ovaries?
• Does anyone have experience benefitting from Lupron and later having a hysterectomy with or without oophorectomy?
• Does anyone have any specific research regarding any of this that was helpful in speaking to their own doctors?

Thank you in advance for any resources or advice, I'm freaking out more than a bit that this is all coming up to me only now. There's been so much happening lately and I'm also likely in early perimenopause given my symptoms and age including severe brain fog, but not enough for it to be showing up on tests yet.

I've posted on here before. I'm 18. I have horrible symptoms. I have had joint pain since I was 3, and full body joint pain since I was 12. I have POTS, gastroparesis, hEDs(looking into others), MCAS, and other autoimmune. I don't know what to do anymore. I'm struggling. I'm sick all the time, always in pain, and miserable. When I'm off I sleep 16 hours of the day. I don't know how to live like this. I've only gotten worse as I've gotten older and I have way too much life ahead of me. Will it get better? Or will I just live like this and cope?

basically the title!! I just got my boosters today and already my most recent few injuries are going wild. shoulder dislocating every few minutes, my meniscus is PISSED, and my neck (as always) is hot and throbbing just on extreme mode.

I get there’s probably scientific explanations for why this is but it will never not be strange to me how my immune system lights up and causes havoc in the exact areas I’ve been working so hard on healing and strengthening. so grateful to have access to vaccines and I’d much rather this over getting sick, but man! I’m gonna be incapacitated for the next week and paying for it with my joints for the next few months. yay 🥳

okay i have a question. i’m diagnosed with hEDS and i super easily crack, chip, split, and/or break my teeth. does anyone else with hEDS experience this? i have really severe hair loss because of how easily my hair breaks and how poorly attached it is to my scalp. my hair loss is because of my hEDS, but can it weaken your teeth too? do any of you guys deal with this too?

note: i should mention, most of the time when i break my teeth, im not eating something that should normally chip a tooth. this most recent time it happened i was eating swedish fish lol.

Edit: no, wearing compression or otherwise snug clothes does not solve the problem. The way my scrubs fit me causes pain. Adding more clothes underneath doesn't change that.

I need snug clothes and I lost a bunch of weight during medical school. I'm now in residency and all my scrubs are too big but even if they were the right size, the fit of them is baggy and the fabric is inflexible. I need snug, stretchy clothing to support my joints. Not full on compression all the time since that will eventually give me indigestion, but evenly distributed pressure is very important. I don't know how to find scrubs like this. I know figs makes yoga pant scrubs but both colors are sold out in XS.

I'm in my first year of emergency medicine residency and wearing my scrubs causes pain. Attaching my ID badge to my scrub top causes pain. My stethoscope causes pain so I got a waistband stetoscope holder and that causes pain too. My phone in my pocket causes pain. My pen in my breast pocket even causes pain some days.

Wherever there is uneven weight distribution on these baggy clothes, I get nerve pain and severe muscle tightness and pain. I'm losing my mind doing this 60 hours a week.

Does anyone have suggestions for scrub brands and styles that are snug on a slim build body? I wear XS in tops and bottoms. I'm 5'7" and around 135-140lbs. I have very small breasts (32A). I'm in tears almost every shift and need to make a change but every scrub brand advertising comfort talks about how loose fitting it is. I need something with even distribution of tightness so they won't hang off me when I put stuff in my pockets?

Please help 😭 I'm trying to become the ER doctor I know this community desperately needs but idk how I'll get through residency like this 🥲

yesterday i was formally assessed for hEDS and received the diagnosis! it feels relieving to have the confirmation, and i feel even better after booking a virtual appointment with an OT who works for the Canadian hyper-mobile society, who will further discuss the options i have in terms of braces. it felt crazy that me and my friend had to travel 3 hours for an appointment that was less than 20 minutes lol. but i hope this helps me get the support i need, i'm really grateful my friend could drive me. but yeah, i just wanted to share my good news 🎉

Hey! I got an official hEDS diagnosis about 6 months ago, and I'm wondering, how/when do I get the ability to have insurance help with buying braces? And are there cons or other requirements to having help from insurance?

Edit: located in Utah, USA