Anonymous #1 1d

My legs hurt, but mostly it’s like my pelvis feels like it’s digging into the chair

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Anonymous OP 1d

that kinda sounds like some hyper mobility or connective tissue stuff? im not a doctor but ive seen many ppl with connective tissue disorders describe sitting down for long periods of time as their pelvis “slipping out” kinda thats not the pain i feel even tho i do have pelvic area pain when sitting down

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Anonymous #1 1d

I think I check some boxes of hypermobile but not all. I’m glad someone else struggles with sitting though I feel ridiculous sometimes because I have to sit in the back of a theater so I can stand for a couple minutes without missing or bothering people

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Anonymous OP 1d

def go see if you can get an assessment done esp bc hyper mobility isnt just abt flexibility, and yeah honestly its sometimes embarrassing having to explain to abled ppl how i physically cant sit for over 2 hrs and long drives or planes are so terrible for me like im considering getting accommodations atp bc it just gets worse 😔

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Anonymous #1 1d

I have a couple friends with HEDS so I somewhat know the tests that’s why I said I check off some. I think it also MAY be apart of possibly fibromyalgia or my endometriosis, who knows. ALSO LITERALLY!! I HATE SITTING FOR THAT LONG ITS SO PAINFUL I didnt know that standing in line was just boring and wasn’t painful for some people, that was a crazy discovery.

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Anonymous OP 1d

it’s fibromyalgia that im diagnosed with + nerve damage and honestly i think i might have endo too 😭 what i hate abt fibromyalgia tho is that its rlly a diagnosis of ruling stuff out and it overlaps with so many things so i do hope your doctors can find smth before landing on fibro 🙏 and dont get me started on standing, i cant stand for any longer than 15-20 minutes but i cant sit for long times too so its just an awkward debate of which will hurt me the least

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Anonymous #1 1d

My doctor genuinely can’t figure it out yet, I deal with Allodyina(?), joint, sleep, and other things so they just lean fibro but they don’t want it put down yet. They also are very worried due to my physiology diagnoisis of PTSD and OCD they think that some of my issues are linked ((which I don’t think so but they are the doctors.)) I HATE standing I get called lazy but 1. My hr is too high for all that 2. I feel like my whole body will explode in .5 seconds

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Anonymous OP 1d

wait why do we lowkey twin i have all of those things too 😭 ive been suffering with sleep issues since 8 and then pain stuff + allodynia came around 13 but it took me until 17 to get diagnosed with fibro but tbh i do agree with your doctors that its very likely that a good chunk of your issues are linked especially bc autoimmune disease, connective tissue, and/or neurological disorders all impact multiple body systems which all seem very likely to be one of the things you might have 💔

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Anonymous OP 1d

and your doctors actually working together is a dream i have like 15 specialists and all i want is to get them in a big oval meeting so they can discuss everything health related abt me, like i also have a high heart rate and stage 2 hypertension and only 1 of my specialists even talks abt it to me

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Anonymous #1 1d

Is this the end for me 🫩💔 My twin in medically chronic pain, I hate that everything is literally connected. I JUST figured out me getting sick every period was just endo flaring up.

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Anonymous #1 1d

Oh girl.. my doctors don’t work together. I have an IUD tell me why I just went to my other doctor and she thought it would be funny to ask when my last period was.. she thought I was pregnant after I told her 3 months ago. Btw I told her at the beginning I had an IUD and she’s been my doctor for 3 years. I have been to so many specialist no one knows. I have spoken about my high hr and bp drops and it’s never of concern I guess??

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Anonymous OP 1d

wait if you havent seen a physiatrist yet try to ask one of your doctors to refer you to one bc i didnt get diagnosed or any help with pretty much anything actually impacting my day to day until i went to see a physiatrist and hes considering disorders like fnd and sfn and he just genuinely cares unlike any other doctor ive seen

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Anonymous OP 1d

i rlly wish i could get diagnosed with endo but i feel like i would need to get off birth control for that so my gyn can see what actually happens during my period and birth control has truly saved my life bc every period i had before birth control i literally couldnt walk or shower for the first three days and i was consistently missing like a week of school minimum every month just bc of my period 💔

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Anonymous #1 1d

I have a psychiatrist she’s the one who referred me to get my ADHD, OCD, and PTSD diagnoisis. I think I may get a new one though because it seems as though she’s not doing the best

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Anonymous OP 1d

oh im so sorry that i assumed 💔 i rlly wish there was just a way to get doctors in one meeting to just talk or have a doctor that specialises in multiple things even tho ik that would be rlly difficult in terms of education like i hope in the future i have enough money to pay for a concierge doctor bc im tired of the healthcare system

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Anonymous #1 1d

I got my IUD placed due to my period, I would miss school and work, I couldn’t shower, stand, I would throw up and pass out, it was BAD. I haven’t got the sugery but Endo is HIGHLY suspected in my case. I struggle with pain weeks leading up to my period and after, ovulation pain on the ovulating side, I can feel where the cramps are like if they went to check for endo I could tell them where. I also struggle with others but those were my main issues

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Anonymous OP 1d

noo a physiatrist is a physical medicine/rehab doctor not psychiatrist i used to get the two confused too and i always have to check my spelling and ik it might sound redundant to go to a physical rehab doctor but him saying that my issues werent a physical issue actually made all my other doctors start to consider other things + i still go to him for parts that might be neurological issues especially for the allodynia and the leg and muscle pain and he prescribed me some meds that help too

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Anonymous #1 1d

My iud hasn’t been as helpful as I hoped, it took 20 minutes and 3 doctors to place it. I couldn’t walk without a limp, and I passed out multiple times after it was HORRIFIC

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Anonymous #1 1d

he was the one who diagnosed me with fibro too and still looking into other conditions that connects my all my issues

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Anonymous #1 1d

Oh girl I’m so sorry I’m battling the beginning of a migrane I promise I’m focused 😭😭 i definitely will look into that. I do have a question are they physical therapy? I’m going soon to them due to my hand having nerve issues

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Anonymous #1 1d

I literally don’t know why they all work in separate buildings is my issue. WHY IS MY GI DOCTOR 40 MINUTES AWAY FROM MY GYNO

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Anonymous OP 1d

ugh we are so similar its insane 😭 i never threw up or passed out bc of my periods, but the year before i got on birth control i went to the er 5 times (it honestly couldve been 10+ times had i told my parents abt all the times i was in such bad pain) just for my period alone, and i kinda wish i pushed more to actually get the issue solved rather than immediately jumping on birth control but it genuinely saved my life i remember that my pcp wanted to take me off it and i bawled my eyes out

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Anonymous #1 1d

bc it was the one medicine that has actually helped me so much like ppl don’t understand how embarrassing it is to not be able to shower or do anything hygienic bc of the amount of pain youre in

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Anonymous OP 1d

im honestly scared of iuds bc of the amount of horror stories ive heard and the fact i have nerve damage, was the iud the first choice or have you tried the pill before and it didnt work? im on slynd which is progesterone only pill so its safe for high bpm and blood pressure and i never even spot anymore like ive forgotten how bad my periods were

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Anonymous #1 1d

Please remember all cases of ENDO differ. So reading mine don’t think of yours any different 🙌🏻 had to warn that. I genuinely think periods are evil idk

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Anonymous OP 1d

no its okay like i said theyre rlly easy to mix up, and they are technically physical therapy and my physical therapist did have me do 6 weeks of physical therapy to rule out that it was a physical thing and truthfully i dont think the physical therapy part will help with a nerve issue but they can help with insurance issues too for testing purposes once they rule out your symptoms are caused by a physical problem

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Anonymous #1 1d

So IUD was not my first I really wanted the nexplon arm implant. I wanted it due to it helping periods AND it wouldn’t disrupt anything in the uterus and send me into a flare up. IUD was recommended due to the ENDO actually because they believed that the localized hormones would help with the cramps and period

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Anonymous OP 1d

no genuinely, even worse ive been under the same healthcare system my entire life like they did my childhood surgeries at 7 but for some reason my cardiologist is like 1-2 hrs away while everything else is nicely spaced in one area? like wtf how does that even work 😭 and im aging out of them too since im 18 now 💔 like 3 more years left till i gotta find a new one

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Anonymous #1 1d

They don’t help with nerves? I had a family member recently go for nerve damage due to a fused spinal bone c4(?) Maybe they were just helping strengthen the muscles around it

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Anonymous #1 1d

🫩 like it is so annoying please just make a cute little house together to treat ppl please

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Anonymous OP 1d

i hope soon they listen and let you try nexplon bc iud insertion is wayy too painful for it to not be doing what it should be doing for your endo 💔 and hopefully you can get the surgery soon too i wish there was a better way to check for endo bc so many women have it

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Anonymous OP 1d

at least that was what my physiatrist told me, since most of my issues are connected due to nerve damage, physical therapy wouldnt help me at all with 90% of the pain and my dad has back pain due to a spinal injury also went to physical therapy which didnt help with anything since it was a nerve issue primarily and not caused by anything physical. when i was in therapy they strengthened my legs and some discomfort was gone but things like sitting/standing still hurt bc its a nerve issue

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