isitdys Posted March 12, 2018 Report Share Posted March 12, 2018 hi all, I'm a long time POTS experiencer (don't want to say sufferer, I'm happy!) ok heads up: this is TMI recently, ive been aware that i have some overactive bladder symptoms that ive been ignoring since i developed dysautonomia, mostly because the heart stuff was just too important for me to pay attention to other things. it's usually just the "gotta go" feeling and waking up a couple of times a night to go pee, and its both really frequent. but i have also had a few incidents in the past 4 years that my dysautonomia has really kicked off where i couldnt hold it and peed myself right as i reached the bathroom or when i can't get my pants off fast enough. this all makes me a bit uneasy though because i wonder what i would do if i were in public, and i wonder how much of it is the autonomic dysfunction, as i have not given birth and I'm still young anyone else? thnx Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 12, 2018 Report Share Posted March 12, 2018 Well - I hope this is not the case for you but it sounds like either a bad bladder infection or Interstitial cystitis. Dysautonomia did that to me, it is a chronic inflammation of the bladder wall, causes all of the symptoms you describe and is not uncommon in dysautonomia. Either way - you should have a urine culture to rule out an infection. If it is IC then your urine will show blood in it. If your doc believes it could be IC then you should have a bladder scoping by a urologist, that would show the inflammation. Unfortunately there is not much they can do for that, you would have to go on a low-acid diet which helps me a lot. Please discuss your symptoms with your doctor - there is nothing to be embarrassed about. Especially since - if it is a UTI - it could make your dysautonomia much worse. Good luck - be well! Quote Link to comment Share on other sites More sharing options...
p8d Posted March 12, 2018 Report Share Posted March 12, 2018 I agree with Pistol, best be checked for a UTI and IC. These were some of my earliest symptoms before diagnosis and I had the scope etc with nothing found. My neuro asks me about these symptoms as a standard set of questions every time I go. Like many things the autonomic nervous system controls the bladder too. Someone mentioned it is more common and/or a feature of hyper POTS but I don’t know about that. It’s terrible but mine waxes and wanes with flares. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 12, 2018 Report Share Posted March 12, 2018 Dinet facebook have just posted a link to videos about badder problems may be interesting to you . Quote Link to comment Share on other sites More sharing options...
angelloz Posted March 12, 2018 Report Share Posted March 12, 2018 I have some of the same and was diagnosed with IC. Severity varies. At the beginning of my illness I noticed that when I would go I would urinate large amounts. Before autonomic issues I would go pretty frequently but small amounts. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 13, 2018 Report Share Posted March 13, 2018 This happened to me a couple of times when I first got POTS and now it's totally gone away. I do try to go to the bathroom every hour or two - way before I have to - and that helps a lot. Quote Link to comment Share on other sites More sharing options...
isitdys Posted March 13, 2018 Author Report Share Posted March 13, 2018 I agree with you guys; I've definitely thought I might have IC, I have pretty much every symptom. Oh well. Quote Link to comment Share on other sites More sharing options...
haugr Posted March 14, 2018 Report Share Posted March 14, 2018 An overactive bladder can be a sign of having a dysfunctional RAAS, which is known to be one of the causes of POTS. Quote Link to comment Share on other sites More sharing options...
Roxy Posted March 17, 2018 Report Share Posted March 17, 2018 I see a gyno-urologist because Pots and NCS have caused my bladder to not function properly, I started out just like you described. I agree that you should rule out a UTI or IC. If those are ruled out I would suggest a gyno-urologist to do additional testing. Good luck Quote Link to comment Share on other sites More sharing options...
Don Posted March 31, 2018 Report Share Posted March 31, 2018 I have OAB and urge incontinence secondary to autonomic dysfunction. The nerves in my pelvic floor don’t work properly. I get bladder spasms but don’t have IC. I have been through a dozen urology tests. I have tried anti-spasmodics like ditropan. I actually took it for 2 years. It was found on EKG that it was effecting my heart rhythm. So I had to stop it. Talk to your doctor. They may be able to help you. Quote Link to comment Share on other sites More sharing options...
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