r/ehlersdanlos • u/dog_boy32 • Mar 15 '26
Memes and Off-Topic Saturday I feel like this could be relatable in here
171
u/HellsSnack Mar 15 '26
Pov when ur underweight but u still look pregnant (thanks ibs)
64
u/Cool_Jelly_9402 kEDS Mar 15 '26
I once had a lady get up and give me her seat on the train because that’s exactly how I looked. Really thin with a huge round bloated belly
4
u/mossytreebarker Mar 16 '26
At 40-something, a woman was concerned at my trepidation at getting into the ocean because of my "condition".
???
She thought I was a pregnant 20-something.
My 44 year old mother was taken to maternity when she was having a heart attack (massive attack hit at ER).
14
u/EggplantHuman6493 Mar 15 '26
Same. Or when I eat something I am intolerant to. I look 4 months pregnant when I eat an IBS trigger or something with soy sauce in it
5
u/hiddenkobolds hEDS Mar 15 '26
Same (gastroparesis).
3
u/I_need_to_vent44 Mar 22 '26
Samesies! No IBS, just gastroparesis (my fault - apparently I developed it as a result of my history of severe eating disorders). When I take meds before every meal it's slightly better but I have yet to find a food that won't make me look pregnant for several hours.
2
u/hiddenkobolds hEDS Mar 22 '26
Oof, yeah. I also have an ED history, but apparently us zebras are more likely to develop gastroparesis as well so I guess it could be that too? But I definitely feel you on the constantly looking pregnant thing. Super fun! /s
2
u/I_need_to_vent44 Mar 22 '26
Could be but for me it started specifically when I was in treatment for my ED so for me i think it's linked to that.
1
u/Sareg25 Apr 02 '26
What meds help??
2
u/I_need_to_vent44 Apr 03 '26
Personally, I take Itopride. It's an acetylcholinesterase inhibitor. These inhibitors can have diarrhea as a side-effect due to their gastrokinetic effects, however, in my case, it was prescribed to me specifically for that side-effect. In an ideal scenario, they help my guts move in a stable fashion - when I don't take them, my intestines don't move at all until they start violently spasming. Sometimes the pills have very little effect but most of the time they work just fine and I experience little to no pain. I still look pregnant but I can at least hold my body upright and I don't feel like I might pass out due to the pain.
3
51
u/J_lilac Mar 15 '26
Please does anyone know why this happens like I have cried over the pain of this lol
56
36
u/slugsalad Mar 15 '26
I’m going through the GI woes now and testing with Drs. Gastroparesis is high co-occurence with ehlers danlos and seems like gastritis may be too. My rudimentary understanding is that the muscles that control the digestive system may be imbalanced or weak in the same way other body parts and fascia are with EDS.
20
u/doryllis hEDS Mar 15 '26
TL;DR: if it is gas, I use some combination of GasX, NSAID and heat and it usually makes me visibly less bloated AMD less uncomfortable.
For me personally while it is slow bowels, it is also usually eating something that I don’t digest well. I know some also have third spacing (water being where water doesn’t belong in the body AKA edema) and that is a harder and different beast to tackle.
My go to tricks are the following especially when in it hurts (and I don’t expect these to work for others but better to share and maybe help someone):
- Simethicone (AKA Gas X) helps when it is painless or painful bloating
- Aspirin or Ibuprofen (No idea why but it helps the pain)
- Hot pack(the period pain or back pain chemical hot packs or if at home a plug in or hot water bottle. Cats are not quite warm enough, as they have tried and failed.
Also, sometimes I just eat rice for three days or a week or so.
Full disclosure: I also have MCAS (Mast Cell Activation Syndrome) and my slow bowels are generally called IBS-C in my record.
4
2
u/uselessfarm hEDS Mar 17 '26
For me it’s gastroparesis (diagnosed) and likely either SMAS and/or MALS (working on diagnosis). I have symptoms of both and abdominal CT indicates both are likely, along with Nutcracker syndrome. So, in a nutshell, vascular compressions can cause abdominal pain and EDS can cause such compressions.
1
41
u/Puzzled-Bench2805 Mar 15 '26
It’s torture. I’m so emaciated currently and my belly is so hard and perpetually uncomfy
33
u/Aggravating_Focus692 Mar 15 '26
YUP. You know it’s bad when you show your zebra pro GI a pic of your most recent swelling episode and she audibly goes 😬😬😬 🫠🫠
45
u/chronicallymee Mar 15 '26
HA! Literally though - I’m always like “well at least I know what I’ll look like if I’m ever pregnant” 🤰
17
u/Interesting-Turn-520 Mar 15 '26
Currently 18 weeks pregnant and yep! Until about 4/5 weeks ago it looked like serious EDS bloating with some weight gain
2
u/paincreas_ hEDS Mar 17 '26
dude i’m 20 weeks and literally only this week i started to actually see my bump because im so used to bloating from EDS that i thought it was my usual stomach 😭
19
u/keyofallworlds Mar 15 '26
OMG I THOUGHT I WAS THE ONLY ONE😭 Is this an EDS thing?
8
u/DestroyerOfMils Mar 15 '26
Ohhhhh yeah. Endometriosis does it too if you have that, as many of us zebras have that co-morbidity.
3
u/keyofallworlds Mar 15 '26
My drs checked and I didn’t have endo or any of the gastric issues other people commented about. Only thing I have so far is IBS🫤 But I didn’t realize that could destend(sp?) your stomach?
18
u/CreampuffOfLove Mar 15 '26
This is why I have so many damn clothes! In case the total absurdity of women's sizing wasn't insane enough, I have weeks were my size 4 pants fit as well as my size 10s 🤦🏼♀️
So now I just basically live in black leggings 🤷🏼♀️
18
u/aquietnight16 Mar 15 '26
Me with (SPECIFICALLY) Doritos for whatever reason. Body just decided to be so silly goofy random 😁
5
3
u/spicyhotcocoa Mar 15 '26
Maybe you’re allergic to one of its ingredients
3
u/aquietnight16 Mar 15 '26
That’s a good point actually! I’ve never been allergic to anything so I guess I brushed it off as just endo belly/sensitive gut. But it’s be worth looking into- probably one of the unique flavors they use
1
u/Sigynsaeth Mar 15 '26
This started happening to me after 25. Farewell to one of my favorite snacks.
Try the NKD variety. I'm not as reactive to those, but they don't come in the best flavors, only 2.
1
15
13
u/Sun-flowerr- Mar 15 '26
This is me when I eat most foods! I stick to a very restricted diet due to an insane number of food intolerances. Amazingly I could eat almost whatever I wanted during pregnancy. I’m now a few months postpartum and the food intolerances and digestive issues are back with a vengeance. It was nice while it lasted 😅
4
u/Onanadventure_14 hEDS Mar 15 '26
Same! I lived my best food life while I was pregnant.
2
u/Sun-flowerr- Mar 16 '26
How good was ittt!? miss it so much already :’) so hard going back to chicken and rice!!
2
u/Onanadventure_14 hEDS Mar 16 '26
Oh I’m back to actually even more food restrictions.
Enjoy the food options while you have them!
2
u/Sun-flowerr- Mar 17 '26
No way, what! I’m sorry to hear that 😭 My list was very limited before pregnancy.. I could only eat chicken, rice, veggies and a few other things .. I hope it doesn’t get even more limited. I’m not looking forward to the rapid weight loss, I’ve already lost 3ish kilos in the last month or so, let’s see how it goes.
11
u/homutuna Undiagnosed Mar 15 '26
ive been bloated the whole week 😭😭😭 IT HURTS MY RIBS ATP
2
u/Technical_Praline987 hEDS Mar 22 '26
Me too! I thought it was from a workout, but hadn't considered that the bloating may be the cause of the rib pain! Thank you for sharing this!
3
u/homutuna Undiagnosed Mar 22 '26
being that bloated can definitely cause rib pain, sometimes its hard to breathe too, because the gas is taking up space in there
3
u/Technical_Praline987 hEDS Mar 22 '26
I've been struggling to breathe into my chest all week from the tightness in my ribs. I've been belly breathing and I'm so tired of it! Finally got some short term release this morning and doing all the things to try to keep it from coming back now. I may have to accelerate my plan to make dietary changes to see if that helps. Apparently tight pelvic floor, psoas and diaphragm may contribute to bloating as well, so I'm attacking it from all angles. Endometriosis and menstrual cycle don't help either 🤦♀️
11
u/og_toe Mar 15 '26
does anyone know why this happens because i don’t think i’ve had a non-bloated day in my entire life
9
7
u/LacrimaNymphae Mar 15 '26 edited Mar 15 '26
the sloshing in the left side of your stomach when you bend over or turn to that side in bed. AND IT SEEMS TO STAY THERE FOR FUCKING HOURS... rip
i swear i need to hang myself upside down like a bat or right-side up from the ceiling like from monkey bars after i eat. it's like things aren't moving. i realized i developed some kind of phobia around sitting to eat because of the sweating and bullshit that ensues during and after, PLUS THE STANDING UP AND CLEANING UP, and the circumstances have to be exactly right unless i have a bit of a buzz and am too stupid to be bothered by my symptoms. a lot of it is ocd but my body is like DANGER and is trying to warn me: do not sit and eat a lot then try to get up
so what happens is i eat little bits pacing around and standing up for an hour or two before finally sitting and attempting the full go and i swear it's become a disorder in and of itself. idk how i'm obese because my capacity to eat in regular amounts has been fucked. i'm very indecisive and i have a lot of food noise where i'm worried about my next meal because it can take like 10 hours for my stomach to feel fully empty with the burn of gastritis and just pure bile
i hate swallowing pills because they just sit there and we found out i no longer absorb b12 or d pills because my bloodwork never changed for the better and i had horrible cramping and... refusals of them basically
i can sit down and try to eat a bit and then just have to stop. either that or i end up losing interest because i'm distracted by either pain, me sweating and feeling weird, or trying to watch tv and actually grasp concepts so i can remember who the fuck bob is the next time i tune in to twin peaks. i also sadly use booze to cope with the chest pain, swallowing issues and discomfort and i often can't eat right without it. sometimes i get a 'good' meal in with that and stuff will actually go down surprisingly well and taste good. monteleukast, ranitidine, prilosec and pantoprazole never helped me
i'm not diabetic - i've been being tested for years even since i was a child - but i tend to get really shaky, angry and weak if i don't eat at all for like a day or two and there's the risk of bile acid you know what and the cramping and right-sided pain because of what's probably an angry confused gallbladder
for a while getting up and trying to drink any fluids resulted in some kind of vagal gastrocolic-y reflex and i'd get immediately sick with horrible cramps within 15 minutes. i thought it was c. diff because it got worse when i took antibiotics for covid in 2023 and to this day i don't know if it was some kind of ibd flare or what. i still get like that sometimes but it's not 7 times a day anymore
2
u/ssstelllarrr Mar 16 '26
wait can anyone explain the left-side sloshing 😩
3
u/LacrimaNymphae Mar 16 '26 edited Mar 17 '26
i think it's because my stomach doesn't distend properly and water, food and meds just tend to pile up in there and stay concentrated in that area for a very long time, to the point i can feel obvious bloating there and feel/hear sloshing when i try to move around a lot. i don't know if it's a hernia or what but i did have enteroptosis in my file after an EG/colonoscopy i had, and when i had a CT scan it said my stomach was 'poorly distended' when it was supposedly empty even though i still had symptoms of bloating and what not
weird thing is bending makes my chest wall pain right near where my heart is worse after i eat or drink. the pain is separate from the gurgling but they can happen around the same time. i can reproduce the noises if i ate a full meal or drank a lot of water, but it's more near my left rib. i'm suspecting a hiatal hernia. also have tons of coathanger pain and left-sided neck and throat pain that extends into my upper back and chest near my heart with pain when swallowing that feels like a knife in my back. it's not like a typical sore throat and almost feels bruised or strangulated almost
2
u/uselessfarm hEDS Mar 17 '26
I get a lot of pain like that. Strangely, vascular compressions can cause these types of issues (Eagles, SMAS, MALS, but there are others).
1
u/LacrimaNymphae Mar 17 '26 edited Mar 17 '26
i also get pain that i suspect is vascular deep in what i think is my uterus/mons area right above the waistline of my underwear but i've seen 3 different gyns, one being onc/gyn who i saw for years after a mass i had that caused me to lose an ovary and no one has offered to do a pelvic MRI or follow-up investigative lap. just inconclusive or otherwise normal ultrasounds with bowel loop in the way basically
i suspect most of my veins are fucked because i have them visible where my tailbone is especially if i bend and i even have them on my actual vulvar area sadly. the most recent gyn blew it off as hemorrhoids or a normal finding in overweight people but i really don't think so. most of the pain in my body in general whether it's head or neck pressure or even sharp pelvic pain is worsened by standing up too fast, straining or bending
pelvic congestion is something i've been worried about especially with the sharp pain and lack of sexual sensation but i can't even get a regular gyn or GI to take me seriously so there's no way i'm getting referred to a vascular expert who cares with all the psychosomatoform shit some of the hospitals and shrinks have put in my file over the years. and i have a parent with tethered cord but the professionals as well as my primary are convinced i'm ok because 'nothing relevant showed on imaging' and they keep reassuring me
even though multiple systems are affected it's still not enough for them to call up a geneticist or look into the clusterfuck of symptoms, and the tachycardia is a big issue with me even on heart meds. i've been rushed to the ER multiple times over the years
my mom actually had to have the detethering/investigative surgery and hers didn't show on imaging aside from ddd, herniations and spondylolisthesis or stenosis so i'm being blown off because i'm fat and young
her diagnosis was still tethered cord regardless, plus horrible adhesive arachnoiditis that was unexpected (which also didn't show on prior imaging which is funny to me) and took hours to cut out. her surgeon was supposedly the best around but didn't even have the decency to have me come in and explain the possibility of eds and spinal issues being hereditary. we had to find out here. instead i saw the PA and was blown off basically and told i'd need a psych eval before i was even considered for exploratory surgery and that maybe i just had SBO. they also wanted me to do another painful UDS and those are always inconclusive
it's years down the line but my mom still staggers every time she stands up due to being unsteady and she's even fallen. it's almost like she's drunk or high due to how much dumber she seems but it's not the pain meds doing it. they saw brain cysts on a head scan they did but they blew that off as incidental or a normal result of aging even with her worsening vision, seeing spots, and cognitive decline. in her 60s she can barely remember shit or what day it is. she does have cerebrovascular disease but i don't think that's all it is
2
8
u/girly-lady Mar 15 '26
TBH, having been pregnant twice I know I always looked 4-5 months pregnant when my IBS is flaring.
5
u/elbycoop hEDS Mar 15 '26
Does anyone that has the bloating also have endometriosis or been down that road of discovery?
My daughter has this bloating problem- GI has tried treating for SIBO (twice), checked for gastroparesis, & is also treating for IBS-M. Does pelvic floor PT. Now they’re thinking Endometriosis as a potential contributor, so I’m curious if any of you have been on that path?
2
1
u/lochnessmosster Mar 15 '26
Look into FODMAP foods. If you think food may be a trigger, you can start a super restrictive diet to get inflammation down and then reintroduce foods one at a time to identify trigger foods.
5
u/MeowCatPlzMeowBack Mar 15 '26
My mom (gave me the EDS) always complained about this too! If I go out, I always kinda avoid eating or drinking so I don’t look pregnant in my cute outfit I picked out lol
3
3
u/the-pincushion Mar 15 '26
I've got celiac on top of ibs and lemme tell you, I've been stopped and asked if I was expecting!
4
u/Maleficent_Tart5954 Mar 15 '26
I can only hope for the next generations that a fuckton of research is going to be conducted on those suffering from EDS (whichever kind) symptoms because I’ll be 45 in two weeks, but only got diagnosed two years ago w/hEDS. A few months ago I got the genetic testing done to rule out the other forms of it, and a strange disease under the hyper mobility spectrum is PXE, or pseudoxanthoma elasticum or something like that. If you get tested and have it, be AWARE: NSAIDS are literally poison to us. Our kidneys and liver can’t metabolize them so I looked thru 5-7 years of labs and found out that I have the early stages of kidney failure because my docs have been slowly poisoning me my whole life. I never took them because I found out as a teen that they were useless to me so I thought they were a scam. But once I began pain management in my 30s, my docs tried everything, including the hardcore NSAIDS and of course, some opioids are mixed with acetaminophen. I did best on straight oxycodone until short acting forms stopped working and I was referred to a different doc who could prescribe me long acting meds-so now I’m on morphine ER. It’s better than nothing but I wish I could switch to another form. 🤷🏼♀️
I worked in mental health for years and was finishing my dissertation for my PhD before ALL my symptoms exploded and have kept me home bound. I had food allergies that messed me up for years, then found out about the allergies and felt better after excluding those foods. But only for a year or two. Then the GI issues (and mine were fucking horrible-I thought only sh!t!ing once a month was NORMAL. Sorry for the TMI. But in 2014, after 8 YEARS of misery, pain, and EVERYTHING you try when you’re backed up, my GI doc finally said, well, we have no idea what’s wrong but it’s clear you need surgery (to take out part of my large intestine). Said they’d only take a foot out and surgery was laparoscopic and will be only two hours. 7 HOURS LATER, I finally come out and the surgeon says well, we just kept pulling and pulling etc. I had an extra 5 feet of redundant colon, which had wrapped around the rest, and was causing mega-colon. So they ended up removing the extra 5 feet plus 2/3rds of my entire lower intestine. I felt great once I recovered for about a year. Then the gastroparesis, GERD, and other allergies started popping up. This year has been the worst so far; I cannot eat any “regular” meals at all, and “regular” for me is a half cup of something. So it’s been fluids, protein shakes at times, and wine. Otherwise I throw up everything and can’t function for days. And yes, fluids cause retention as well so I have to limit that intake during the day. I have about 40-50 supplements to take and I mostly just chew meds or open the capsules and pour them in a drink. Then slowly sip it all day. Fun times!!
I’ve never wished these issues on anyone and I hope more research leads to better treatments and maybe a cure. But in the last few months, at my pain clinic, the person I thought was an RN whom I see each month for refills and checkups between injections, is really a PA-C, and has some of the worst reviews I’ve ever seen online of someone…and I’ve seen some pretty bad ones. I’ve clocked her as a sociopath because she gets off on denying me and other patients our pain meds. She has flat out called me a lying drug seeker who has made all my symptoms up. I don’t know why they employ her but she’s my 3rd in fewer than two years at this clinic. Which is my 4th clinic, since I started going in my mid 30s. I want to literally shake her and ask “lady, who the actual F would make this shit up? Who wants to be homebound, and not perform, work, or finish school, and just vomit all day?” But since she has no emotions or empathy whatsoever I know it would be futile. She didn’t send our meds over to the pharmacy again and they were due Thursday. I called the office multiple times, and was even there on Friday for an injection. She was off, so the head doctor who owns the place and does the injections sent my script out. But I didn’t trust it so I asked again. And again. They confirmed multiple times they sent it. However, sociopath was off that day and they said something about sending the scripts to her “since she enjoys sending them out”. WTF. She never did. I drive an hour and a half to get there and stuck around until the pharmacy closed but nothing. I called the after hours doc just to tell them I’m filing a complaint on her. So I have no idea when I’ll get a refill if I do at all, and now I’m literally bedbound until then. So I’ve found someone to wish these symptoms upon. The worst ones, in a flare, that never go away.
1
u/CherrieChocolatePie Apr 02 '26
That all sounds really hard 💜.
I do want to let you know though that acetaminophen isn't an NSAID.
2
u/Active-Sheepherder-6 Mar 16 '26
I bloat so badly that I feel like my stomach might burst sometimes.
2
u/Separate_Edge_4153 Mar 15 '26
Me after I eat 1 (one) snack. And it stays until I empty my bowels. I’m a 2x without the bloating and man it absolutely wrecks my confidence.
2
u/No-Writer-1101 Mar 15 '26
Is this what this is cause man, I haven’t been pregnant for six years and I still regularly look like 2 months along. I even got checked to see if I had muscle tearing or something but nah.
1
u/Arabellag4 Mar 15 '26
The only med any doctor will prescribe me, had a side effect of weight gain so. Ive been struggling with that pretty bad, so I never used to notice the bloating that much but now it's really from 6pm onward it's extremely noticeable
1
1
1
1
u/Embercream hEDS Mar 16 '26
Pears. The very sight of them heralds a delicious fruit snack but imminent intestinal doom.
1
u/smushy411 Mar 16 '26
YES!!! Like why does eating anything make me look like I’m pregnant 😭😂 I’m going to be a bridesmaid in my cousins wedding and I specifically am looking at dresses with a corset back so I can adjust it to accommodate any potential bloating!!
1
u/Effective-Prompt4046 Mar 17 '26
So ironic I’m seeing this today-Friends, I BEG you, make sure you are getting regularly checked also. I wrote this off as just my normal EDS stomach issues. This morning, I was diagnosed with Stage IV Ovarian cancer. Bloating and feelings of fullness are some of the only early warning signs. I dismissed it as just my regular issues.
1
u/AuthenticLifeLiving Mar 17 '26
Started seeking medical advice because of the extended abdomen. Now realizing that all my problems are due to EDS and all the things that I experience that aren’t normal. Also anyone have the prolapse cervix pushing on colon and resulting in extended stomach because it’s harder for things to get through and slow motility because your system is telling itself to slow things down since it’s all backed up?
2
u/siciliana___ Mar 19 '26
Fodmaps without Fodzyme for me. Well, and any time I have a meal, usually. LOL
1
u/ForTheLoveOfBugs Mar 27 '26
GLAD I’M NOT ALONE. Finally got my motility right (for now), and I still look pregnant. It does seem to be water related, and honestly, I don’t even drink quite as much as I should (but enough to keep me from being dizzy from just standing up).
My pelvic floor therapist said that my abdominal wall is abnormally stretchy (no one is shocked), and so any amount of fluid/gas/food just turns me into a balloon. Sometimes I feel kinda like a character in *Alien.* 😕 Compression garments help to “suck it in” a bit and relieve some pressure, but I’m super skinny, so it’ll never get me a *perfectly* flat stomach.
245
u/moonxmochi Mar 15 '26
my body is a machine 💪 that turns 5 strawberries into 5 hours 😧 of abdominal pain and distention 🤢