u/oleander1913

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Not a full trigger, but I am talking about my body shape.

Ok I don't know if this is a normal human thing or if it's a hyper mobile problem but I don't know how to lay down? I have a slight hourglass body shape (that might be my problem!?) maybe not?

Why laying on either side. my middle like sags and it hurts on the side where I am laying and on the other side /top part where it is overly indented.

Is that a thing?

And how do I sleep?

I have tried laying on blankets, a hoodie, pillows and so many pillows. Including pregnancy ones. Nothing has helped.

I've tried with and without a knee pillow.

I feel like I have been trying science experiments to try to figure out how to sleep.

Hello, I (21, F) had a lap yesterday too Dignosise endometriosis. None was found.

I had a good surgeon, he is a specialist. Did All the right things, I got pictures and everything.

I have follow ups with pretty much my entire care team in the next month.

I was diagnosed with hEDS a few weeks ago. I also have PCOS and fibromyalgia

With that being said I am desperate here. And thoughts, advice similar experience. And I'm one day out of surgery here so please be nice.

Ovulation-the second day of my period. My bladder is EXTREMELY painful. The slightest amount of pee and I am rushing for a bathroom. It is tight burning feels like it is both being inflated and carved apart. I can't sit or lay in some positions. It keeps me up at night.

I have as an adult always thrown off urine tests (any point of my cycle) Trace White and red blood cells. I've been treated for like 6 utis in the past 2 years, that don't change with antibiotics or anything. The blood is always still there...

As a child I never wet the bed... Ever

I never have to get up to use the bathroom in the middle of the night now unless I'm in pain. If it's not flaring I can go from 10pm to noon+ without felling like I need to peeing or trying and both comes out, I've never been a morning pee-er

. Again unless there is this pain.

I've had 16 different doctors tell me it is endometriosis but none was found. I am really scared that nobody will know what to do now. It's making my quality of life in the toilet (no pun intended).

And honestly it's worse than surgery recovery right now.

If you are able to give advice or not Thank you for reading,

I don't know if this is the right place to post this. I'm desperate and I don't really know what to do now. From the Dignosises I do currently have Ehlers Danlos seems to be the closest to the problem

I ( 21, F) had my first rheumatologist appointment today.

And I'm a zebra

I was NOT expecting it. Like out of the BLUE.

I had a "friend" (later learned she wasn't a great person or friend) with hEDS that said there was no way I could have it because I can't do the thumb thingy.

And I never really questioned it. (Sure I can do weird things, but that's normal RIGHTTTTTT 😂)

I've been in full body pain for years.

I've seen seven+ specialists and every test has come back "normal". With suspected fibromyalgia.

Lately my fingers have had pain and swelling in my knuckles.

I was expecting blood work and more waiting and possibly some type of arthritis Dignosis from what my PCP was talking about.

The doctor went over everything and was like

"Not autoimmune, but you Definitely have hEDS. I don't treat it but I can and have Diagnosed you from what we have been over today"

YAY, an answer!

He recommend PT..... and a therapist.

This sweet man even said

"NOT because you don't have it, you do, it is real. It's not just in your head. It's to help understand and come to terms with this. You were born with it and you will always have it. It will help you come to terms" 🥹 like y'all 🥹

suggested body braces for when I really need them. And very roughly explained hEDS. said having specialists for specific symptoms will be helpful. And sent me the link to the Ehlers Danlos society website.

Which is all HUGE. I'm just kinda blown away (I was loosing hope I'd ever have an answer) . Don't really know what to do from here but at least I have a direction.

I know it's weird to be happy about this, but I am so happy to finally have an answer.

Although when he was testing(?) me. He was checking my knees and omg it hurt. I let him know so he lightened up. but is still feels off 11 hours later 🫠

So I just finished my pre surgery appointment. It felt useless. Every question I had

I was told to talk to my primary, the surgeon or "I don't know about that"

But she did know how I should take meralax and ensure and not to use a tampon...

Recommend otcs I can't take because of my current medication. When I asked what I could do because of my meds, she didn't have an answer, but don't take the OTCs.

I have fibromyalgia and some other autoimmune we are trying to figure out.

She said "this recovery wouldn't mess with anything like those from what I know, everything should be back to normal in two weeks, sometimes sooner"

which I hope is true, but from previous procedures I don't think will be the case.

I'm sitting here now wondering what that apartment was, why it couldn't have been an email. Why when I have simple questions she doesn't know, but says if I have any others I should reach out.

I haven't been overly scared by this process yet but now I feel so fucking alone because what was that. I still have my list of questions and no other appointments before surgery.

Sorry. I just need to let that out

Ok, hi, please help, I turn 21 next week.

I hate clothes unless it is sweats and hoodies and men's clothes (they are so much more comfortable)

What do we wear to bars.

Keep in mind, I am going in thinking I'm gonna hate it. So I want to be comfortable.

My Meds won't allow for drinking. They aren't taking me to party bars, It will be mild.

But not just bars, I'm gonna be 21. I wanna like woman properly. I know there are different ways but I look like a child (I know I do).

I want to look AND feel good

On TV it is all little dresses and that is not sensory friendly for me. On social media it's all jeans and black tops. jeans are the devil.

I'm looking online and EVERYTHING looks like it's wrong.

But I KNOW that I will stick out in sweats, so now I'm spiraling. Please help

Hi, please be nice. I'm at my wits end here and typing is pain

About 6 weeks ago my finger joints and knuckles started hurting. Never had finger pain before.

and waking up in the middle of the night from finger pain and swelling. Not emergency swelling, but struggling to get my loose fitting rings off.

Both hands, all fingers, every day but fluctuating.

Almost like all my fingers need to pop but they can't, or if they can it makes them feels a lot worse.( Learned that the hard way)

At first I was thinking it was a summer heat thing but it's not going away.

my labs came back normal 5 months ago.

I keep thinking about mychart-ing my neuro or PCP but always end up talking myself out of it for one reason or another.

I know that joint pain goes with fibro, but is slight swelling common with it? Or Do I need to suck it up and message my Dr ?

Weird question. Just wanna know if y'all think this could be done/has been done or if this is to much to ask.

Getting my lap in September, and I will turn 21 in late August.

My surgeon offered iud and I'm still thinking/researching it

but I know 21 = first pap smear (yay being a woman 💀) but would it be weird to ask if they can do it when I'm knocked out? I know my insurance would cover it.

I haven't been able to tolerate anything up there (down there?) without hella pain and I know I would probably pass out from the pain of a pap.

Is it done/can it be done or is that crazy to even think about with all the other lap stuff being done to my body?

This seems really dumb but in lap prep research I've noticed that a lot of the people I'm seeing are... well skinny. Not like tiny but like flat stomach skinny? Not like the influencers Only. but all the non aesthetic blogs and in some of the pictures on here as well.

I've always kinda dealt with body dysmorphia but I recently lost and re gained weight plus some. Currently 180-190

I naturally Carry fat in my stomach. Straight out like a bump. Even without the endo bloating

My question for all the midsized/plus size Endo girls. How did healing go?

This mostly comes to post lap underwear? I don't know what will work well with tummy and incisions. my body is something I haven't seen in pictures of recovery

I know it seems like something you wouldn't think matters but my tummy hangs Right around were the incisions are on a lot of pictures I see of the skinny girls.

Sorry if this is worded bad. Seems like a weird thing and it might be my brain coming up with issues but I am worried about it

Hi!

So I have a weird is question. this spring I was diagnosed after a lot of pain for years.

I've done reading on fibro and have stalked this page a bit. But I still don't feel like I have a solid answer. My PCP doesn't know what to do with me

I can't leave the house without crippling pain. I don't know how to live like this

"I think this new ___ will really help"

spoiler it doesn't. I break out, swell up, get it itchy or sleep for 16 hours straight

and my neurologist has tried different drugs on me but I reacted to all of them.

So my question are we supposed to have pain? Ok well duh that's the main thing. But listen

I am in my 20's I know my life won't look like other 20yos but I try to do one fun outing a week. Nothing crazy. Not parking. A local concert. Walk in the park, something low in pact. But by time I'm home I'm sobbing (literally) from the pain. Can't walk to my front door a from the car without help. Leg, back, knee, ribs. I've been tracking what causes it. And there is nothing I can pin point.

Is this fibro? Or should I be looking for a second opinion? Or physical therapy / mobility aids (like proscription kind. I'm afraid to make this worse with Amazon ones)

I know I need to advocate for myself but I don't know what to do here.

Thoughts? Input? Advice?

Thanks for reading. Signed a girl that wants to be able to leave the house

I'm at my end. I have no freaking clue what to do or say or anything or who to ask or anything like that to be honest I don't know why I'm here or if I belong or if I am doing this right but I just need to talk.

I don't know. I'm sorry if I'm doing this wrong. This is going to be long and rambling

I have a few chronic illness and was listening to some things about autism in woman with chronic illness. I took some of the suggested tests and I got

raads r 170, aq 31 and a cat q 155. (I don't really know what that means but this reddit came up when googling it)

I don't have a Dignosis (to be honest I don't know if I should pressure one as an adult?)

I was homeschooled rarely around people/children. I didn't really good at school work. But I don't do well with people. I self isolate and always have

I am stuck in this loop of breaking down and masking and waiting for people to leave so I can cry. (I was raised with "put your crying in your pocket" people.) Well My pockets are overflowing and I am breaking. Please help me

I broke down at work today because the things weren't in their boxes in my head. Like someone did part of my work and I wasn't sure what to do. so I just stared at the wall and cried silently.

My brain feels like it's full of white noise and I'm just so freaking lost.

I have brought up a similar Dignosis before. I get texture issues, meltdowns, and and other things but my family don't really believe in it? Like if I'm not fully reliant of people to live I can't have anything? My family has medical trauma. (When I said chronic illness, Yeah it took me 6 years of saying something is wrong get them to stop saying it's normal )

I just fell like I'm drowning and just want someone that understands. Or advice? I don't know what the heck to do and I just want to not feel like this anymore.

I don't know what I'm asking honestly. I don't know. Everything is so freaking much. I know it isn't right but I don't really know where to go

I'm sorry if it's wrong to be here, or anything. I just really need someone right now. It's right now that I wish I had a big sister or aunt that would give me a hug

Over the past few days I've noticed what when I shrug (or move in similar movements) My shoulder to elbow feels like a mix between little shocks (think a tens machine) and the pressure of shooting a spit ball through a straw. Like a lot of pressure going down to my elbow.

It feels so funky and it hurts when it happens.

When I ask dr Google. I'm just seeing cello players and ms being talked about. last testing came back negative... and I don't play the cello unfortunately

Is it another WONDERFUL symptom of fibro? It's not concerning me enough yet to get Dr involved yet. Just wanted to know if it's a common thing

So I have read in this group that clots are pretty common.

But my PCOS friends irl literally jaw dropped when I said this. so I wanna see if anyone else has this😂

So on my period I get clots, but like long clots not just "boogers"

it actually hurts so

I have to go to that restroom

and wrap two fingers around them and yank them out. It's like really long and thick strings.

(I have thought about taking a picture of one but figured no body wants to see them 🫣)

My friend with PCOS looked at me like

"👁️👄👁️.....WHAT!?!"

So I was wanting to know do I have any clot sisters?

*I have talked to an OB about this and this man Says. "Women have clots, it's because you go 50 days between periods, it hurts because you dilate more to pass them"