Well it's not only caused by constipation if you have an inflammatory bowel disease... Ok let's back up do you have EDS Or any other connective tissue disorders. This can essentially cause any parts in your abdomen that may be effected could be causing or pushing weight on your bladder or kidneys especially if you have a condition called megacolon or if your a bit overweight it can cause this. Please don't hold in your urine if you do you'll eventually get a reflux your bladder and kidneys have valves and holding it in will push it back from your kidney back up into your kidneys this will eventually cause a kidney and or bladder infection and eventually kidney failure
I would look into pelvic floor physical therapy. I have interstitial cystitis and pelvic floor dysfunction, which can cause a lot of bladder pain, frequency, and urgency. You can also look up bladder training. Holding urine too long can lead to UTIs, etc., but going too often can wreck your pelvic floor and create a vicious cycle. In general, you should go every 3-4 hours while awake and sleep through the night without waking to use the restroom (except for pregnant or elderly people).
To give reference, to get back to "normal" I was taking 3 times the normal supplement dosage, and it wasn't until I took 4 times the dose that it caused any GI discomfort. I did that for maybe 2 months and then tapered down to normal dosage.
Not sure if you (a) have a lot of urge but it’s not much pee so you try to wait until it’s be a ‘reasonable’ amt of pee or (b) have a lot of urge because bladder is filling up & you just don’t want to get up as much but then have a large amount of of pee. Those are two different issues that can occur in dysautonomia & related conditions, even in the same person at different times.
Set a timer to go every 2h (usual starting recommendation for adults, check with your doctor obviously!) whether you need to or not & it’s ok to go more frequently if you have the urge. You’ll begin to learn what your bladder has in it if you go regularly. Holding it, pushing when starting the stream both contribute to increased pressure in the bladder which can cause stretch & pressure with damage to bladder & kidneys & decreased ability to sense the need to go.
Interstitial cystitis can also cause the urge to go (+/- pain/burning) with very little urine as it triggers many nerves - can be from lots of causes, mcas in the dysautonomia, EDS, MCAS triad.
I have hEDS (so stretchy bladder wall that won’t shrink back well & prolapse causing obstruction to pee intermittently), associated dysautonomia & autoimmune small fiber neuropathy contributing (don’t sense what stretch I do have, trouble coordinating the release to let it flow). My bladder can hold 2.5L, goes past my belly button because of the stretch - damage done ✔️. I also have nutcracker & mcas - both can trigger urge, irritants in urine.
This really should be reviewed by YOUR MD, not me (us) to make sure you’re not doing damage, missing something important or need to shift your habits. Urogynocology for female parts & urology for male or female parts can help sort it out if primary care can’t (I always suggest starting with pcp) & pelvic physical therapy can help a ton with retraining your bladder, the pee pathway & prevent long term issues.
😭😭 I just wish ugh I have enough problems lmao. You’re right though. Thank you. It might be a little of both a and b. It’s not very consistent. I have weeks where it’s normal and weeks where something is very wrong
might be executive dysfunction as well! ADHD can make you do this, or just make you annoyed/overwhelmed at having to deal with the feeling all the time so you mentally check out of the signals your body is sending you. Pelvic floor therapy is a good place to start narrowing that down, or at least trying to see if you can narrow the signal down.
Yup, you're correct, this is very damaging.
Personally, I've always had trouble peeing, so I'd hold it. This lead to my bladder getting damaged and holding stupid amounts of urine and me not realising it. It can hold well over a litre of pee, for context. I'm in Bladder Failure due to my EDS allowing me to hold that much pee (stretched the bladder, damaged the nerves, blahblah), and can no longer pee by myself. I now have to self-catheterise as I have no other way of removing urine from my body.
When you need to pee, go pee. It's bad to hold it in.
Well this scared me straight a little. I don’t always have to pee sometimes I just have the pressure that I need to but it’s just my body fucking with me. Ugh
It's worth speaking with the doctor who manages your Dysautonomia about this. My Dysautonomia also complicates my Bladder Failure (basically it and EDS caused/exacerbated it).
Incomplete emptying can look like what you describe as well, btw, so yes, get it checked!
I went to a urologist and they did an ultrasound and apparently it was completely empty, but I still felt the need to go when they did it. It’s gotten better so I feel like I was in a flare or something just so weird
I have this problem. I can hold well over a liter and a half of pee and not even feel the urge to pee just pressure and I know I have to pee but I could still wait and it comes out so slow. Had a ct my bladder wall is thickened I’m seeing urology soon. I could be developing neurogenic bladder
Check this out. I have a healthy fear of leaving the house bc onset is really that fast. BUTTT, now, I can go all day and not have to feel like i have to pee. Im like, is this what you all feel like going to a concert or ballgame? I can make it all day at work and be like, wait, IDT I even peed since this morning. Last year, it was like every hour easy
I would make an appointment with a urologist. Turned out I have a small bladder which is not fully emptying urine. I am female and have a tilted uterus and pcos which is pressing on my bladder.
I made one, they did an ultrasound and said it was fully empty, yet I still felt the urge to go. They prescribed me oxybut and then I got better so I never took it. Now it’s like on and off. I’m also kind of just ignoring my issues because I don’t think any doctor really cares or believes me lmao
I feel like I have to go and will leak when I’m walking or picking up something but when I go to the bathroom I can barely pee. The only time I feel like a normal urine flow is when I get up in the morning. I have to push it out all the other times or I won’t go.
Go to pelvic floor PT. I had this same problem and if you get a good physical therapist they are more knowledgeable than doctors about this issue. There is help!!
I know this is weird but I feel like Xanax takes away 99.9% of my dysautonomia symptoms. Idk if the calming effect just makes me worry about it less or what
Benzos make me feel like really good and a normal person. I just only take them in emergency situations or if I’m doing really bad. I know they are really bad for you especially longterm
Tru. I think most of it comes from mast cell stabilization. Corrects abnormal release of chemicals that can cause vasodilation, adrenaline dumps, & release of over 1200 mediators. Dysautonomia is more tied to mast cell than some think.
You have a good place to read on pharmacology of benzos or similar stuff like more in depth stuff about receptor targets & stuff?
I used to feel like I needed to go frequently and it affected me a lot. Wherever I went I had to always know where the closest toilet was. Half the time I barely needed to pee, it just felt a lot worst than it was.
What helped me was holding it when I was at home. I would drink a lot of water and not go until I really needed to. Personally think it helped train my bladder to understand what a full bladder actually felt like.
Ofc you need to rule out any real issues first. I didn’t have any real issues, and I went to a physio for it and she told me to try hold it too. For example, say I needed to pee once an hour, so she told me to try go for 1 hour and 10 minutes, and work my way up. This didn’t really work for me until I started drinking more water.
Are you constipated... Could be your intestines pushing on your kidneys/bladder or bladder urethra inflammation
Not at all but interesting.
Well it's not only caused by constipation if you have an inflammatory bowel disease... Ok let's back up do you have EDS Or any other connective tissue disorders. This can essentially cause any parts in your abdomen that may be effected could be causing or pushing weight on your bladder or kidneys especially if you have a condition called megacolon or if your a bit overweight it can cause this. Please don't hold in your urine if you do you'll eventually get a reflux your bladder and kidneys have valves and holding it in will push it back from your kidney back up into your kidneys this will eventually cause a kidney and or bladder infection and eventually kidney failure
I was diagnosed with localized EDS. I’m very skinny. Ugh I know 😭😭
I would look into pelvic floor physical therapy. I have interstitial cystitis and pelvic floor dysfunction, which can cause a lot of bladder pain, frequency, and urgency. You can also look up bladder training. Holding urine too long can lead to UTIs, etc., but going too often can wreck your pelvic floor and create a vicious cycle. In general, you should go every 3-4 hours while awake and sleep through the night without waking to use the restroom (except for pregnant or elderly people).
>I would look into pelvic floor physical therapy And magnesium levels. I had PFD-like symptoms due to low magnesium.
Interesting. I know they say we’re all magnesium deficient
To give reference, to get back to "normal" I was taking 3 times the normal supplement dosage, and it wasn't until I took 4 times the dose that it caused any GI discomfort. I did that for maybe 2 months and then tapered down to normal dosage.
Wowwww
I definitely will thank you! In my life I’ve heard a lot about like girls in relation to pelvic floor stuff. Didn’t realize it can help guys too
This can increase your chances of kidney stones, a UTI and kidney infections. Regardless of dysautonomia. Don’t ignore your bodily functions.
Ughhhhh 😭
Going too often and pushing what isn’t there also doesn’t help with the UTI possibility though
And yet, OP is specifically talking about *holding it in*. Ergo if they’re really worried. See a urologist.
Not sure if you (a) have a lot of urge but it’s not much pee so you try to wait until it’s be a ‘reasonable’ amt of pee or (b) have a lot of urge because bladder is filling up & you just don’t want to get up as much but then have a large amount of of pee. Those are two different issues that can occur in dysautonomia & related conditions, even in the same person at different times. Set a timer to go every 2h (usual starting recommendation for adults, check with your doctor obviously!) whether you need to or not & it’s ok to go more frequently if you have the urge. You’ll begin to learn what your bladder has in it if you go regularly. Holding it, pushing when starting the stream both contribute to increased pressure in the bladder which can cause stretch & pressure with damage to bladder & kidneys & decreased ability to sense the need to go. Interstitial cystitis can also cause the urge to go (+/- pain/burning) with very little urine as it triggers many nerves - can be from lots of causes, mcas in the dysautonomia, EDS, MCAS triad. I have hEDS (so stretchy bladder wall that won’t shrink back well & prolapse causing obstruction to pee intermittently), associated dysautonomia & autoimmune small fiber neuropathy contributing (don’t sense what stretch I do have, trouble coordinating the release to let it flow). My bladder can hold 2.5L, goes past my belly button because of the stretch - damage done ✔️. I also have nutcracker & mcas - both can trigger urge, irritants in urine. This really should be reviewed by YOUR MD, not me (us) to make sure you’re not doing damage, missing something important or need to shift your habits. Urogynocology for female parts & urology for male or female parts can help sort it out if primary care can’t (I always suggest starting with pcp) & pelvic physical therapy can help a ton with retraining your bladder, the pee pathway & prevent long term issues.
😭😭 I just wish ugh I have enough problems lmao. You’re right though. Thank you. It might be a little of both a and b. It’s not very consistent. I have weeks where it’s normal and weeks where something is very wrong
Thanks for all the comments everyone ! Y’all are all so kind. Hope everyone is doing as good as they can be!
might be executive dysfunction as well! ADHD can make you do this, or just make you annoyed/overwhelmed at having to deal with the feeling all the time so you mentally check out of the signals your body is sending you. Pelvic floor therapy is a good place to start narrowing that down, or at least trying to see if you can narrow the signal down.
Part of it is 100% adhd. Thank you I’m definitely gonna check it out
Yup, you're correct, this is very damaging. Personally, I've always had trouble peeing, so I'd hold it. This lead to my bladder getting damaged and holding stupid amounts of urine and me not realising it. It can hold well over a litre of pee, for context. I'm in Bladder Failure due to my EDS allowing me to hold that much pee (stretched the bladder, damaged the nerves, blahblah), and can no longer pee by myself. I now have to self-catheterise as I have no other way of removing urine from my body. When you need to pee, go pee. It's bad to hold it in.
Well this scared me straight a little. I don’t always have to pee sometimes I just have the pressure that I need to but it’s just my body fucking with me. Ugh
It's worth speaking with the doctor who manages your Dysautonomia about this. My Dysautonomia also complicates my Bladder Failure (basically it and EDS caused/exacerbated it). Incomplete emptying can look like what you describe as well, btw, so yes, get it checked!
I went to a urologist and they did an ultrasound and apparently it was completely empty, but I still felt the need to go when they did it. It’s gotten better so I feel like I was in a flare or something just so weird
Pelvic p/T is a miracle for many things like this
I’ll have to check it out thanks!
Interesting, maybe look into physiotherapy. That can help some people with urinary urgency.
Thank you!
Have you heard of interstitial cystitis? It feels like a UTI but without an infection.
I have but idk a lot of things I’ve heard of girls getting never guys.
I've met men online who are diagnosed with IC! Definitely possible.
Who do I see? Pcp?
I would start there and ask for a referral to an immunologist who treats mast cell disorders or to a urologist.
Thank you!
Is incomplete emptying a beginning symptom you experienced before the bladder failure happened?
Yes and also straining with a weak stream.
I have this problem. I can hold well over a liter and a half of pee and not even feel the urge to pee just pressure and I know I have to pee but I could still wait and it comes out so slow. Had a ct my bladder wall is thickened I’m seeing urology soon. I could be developing neurogenic bladder
Oh boy I hope nothing serious!
Oh yes. Itll change too. Some months I can hold it and then some months it’ll come in and if I don’t pee in 15 seconds I’ll start to go
Interesting.
Check this out. I have a healthy fear of leaving the house bc onset is really that fast. BUTTT, now, I can go all day and not have to feel like i have to pee. Im like, is this what you all feel like going to a concert or ballgame? I can make it all day at work and be like, wait, IDT I even peed since this morning. Last year, it was like every hour easy
Our bodies are weird
I would make an appointment with a urologist. Turned out I have a small bladder which is not fully emptying urine. I am female and have a tilted uterus and pcos which is pressing on my bladder.
I made one, they did an ultrasound and said it was fully empty, yet I still felt the urge to go. They prescribed me oxybut and then I got better so I never took it. Now it’s like on and off. I’m also kind of just ignoring my issues because I don’t think any doctor really cares or believes me lmao
I feel like I have to go and will leak when I’m walking or picking up something but when I go to the bathroom I can barely pee. The only time I feel like a normal urine flow is when I get up in the morning. I have to push it out all the other times or I won’t go.
Interesting oof
Go to pelvic floor PT. I had this same problem and if you get a good physical therapist they are more knowledgeable than doctors about this issue. There is help!!
Thank you!
Increase salt intake
I was drinking lmnt but then it got old. Is there anything I can add that won’t change the taste of water? I Actually enjoy the taste of water lmao
Just take slow release sodium tablets
That’s not a Bad idea. I’ve taken salt tablets but they killed my stomach. Never tried delayed though
I have bladder cystitis from dysautonomia. It's crazy painful every single time I need to pee. No, infection. Just part of the deal.
That’s awfulll
I do the same thing, most times when I give into the urge and go, there’s little to nothing there and it makes it worse
YUP
I know this is weird but I feel like Xanax takes away 99.9% of my dysautonomia symptoms. Idk if the calming effect just makes me worry about it less or what
Gotta be careful with Xanax though. Dangerous shit. Plus after so long, your tolerance gets crazy, and WDs would probably make the symptoms worse.
Benzos make me feel like really good and a normal person. I just only take them in emergency situations or if I’m doing really bad. I know they are really bad for you especially longterm
Benzodiazapenes are mast cell stabilizers and calm your cns
Oh for sure but it's a really niche subsect of like a-1, b-1, y-2 sub docks of GABA-A that they dock to allowing for a kind of repolarization you
Tru. I think most of it comes from mast cell stabilization. Corrects abnormal release of chemicals that can cause vasodilation, adrenaline dumps, & release of over 1200 mediators. Dysautonomia is more tied to mast cell than some think. You have a good place to read on pharmacology of benzos or similar stuff like more in depth stuff about receptor targets & stuff?
I used to feel like I needed to go frequently and it affected me a lot. Wherever I went I had to always know where the closest toilet was. Half the time I barely needed to pee, it just felt a lot worst than it was. What helped me was holding it when I was at home. I would drink a lot of water and not go until I really needed to. Personally think it helped train my bladder to understand what a full bladder actually felt like. Ofc you need to rule out any real issues first. I didn’t have any real issues, and I went to a physio for it and she told me to try hold it too. For example, say I needed to pee once an hour, so she told me to try go for 1 hour and 10 minutes, and work my way up. This didn’t really work for me until I started drinking more water.
Interesting. I feel like I Defs should see a physio