Lel Posted April 2, 2013 Report Share Posted April 2, 2013 Hi all,Has anyone else experienced irregularities with urination? I have been having problems with excessive thirst and excessive urination. I'm new to the POTS world, but so far I haven't found any mention of this.My rheumatologist thinks it's a dysautonomia problem, and my cardiologist thinks it's an autoimmune problem. The urologist is yet to find anything conclusive, but I go back to Cleveland Clinic later this week for more testing.Side note: I have POTS, fibromyalgia, Raynaud's Phenomenon, undifferentiated connective tissue disease (UCTD), and lymphocytic colitis.Thanks for your input!Lel Quote Link to comment Share on other sites More sharing options...
weathermandj Posted April 2, 2013 Report Share Posted April 2, 2013 I am so glad you created this thread! I go to the Urologist again today to talk about a bladder pacemaker to see if I'm a candidate for it. I have urinary retention and excessive urination. It's supposed to treat both conditions. I don't have the excessive thirst you mention. I don't know what is causing both of our problems. My Urologist said POTS may be causing some of my problems. Hopefully others on here will have some answers for you. Quote Link to comment Share on other sites More sharing options...
Racer Posted April 2, 2013 Report Share Posted April 2, 2013 My understanding, urination is partly controlled by the autonomic nervous system, so dysautonomia can cause problems with urination.I have excessive urination and urgency. I go every 30 minutes or so, but usually try to push it towards a hour. If I hold off at the first urge, it will subside for a bit, but then I start to risk urgency. When out of the house it is always on my mind, since if I hold for to long I risk disaster! When away from restrooms, it is a hard decision, do I dehydrate and feel bad, or risk not making it to a restroom in time! Quote Link to comment Share on other sites More sharing options...
Hope Posted April 2, 2013 Report Share Posted April 2, 2013 Yes I get quite annoyed with my frequent urination. It comes and goes though and I certainly enjoy the break. I have had a cystoscopy and they didn't find anything really. They said I might try a mesh implant and glad I didn't since they seem to be causing problems in others. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 2, 2013 Report Share Posted April 2, 2013 This is a common dysautonomia symptom. The frequent urination is called polyuria. Florinef can help reduce these symptoms. Quote Link to comment Share on other sites More sharing options...
Lel Posted April 2, 2013 Author Report Share Posted April 2, 2013 Thank you guys!Do you know of any websites or articles where I can find more info on this connection? My cardiologist believes it is not connected to my POTS. My urologist had me on a bladder-friendly diet for several months, which didn't help. So I go back to Cleveland Clinic this Thursday for a urodynamics test. I actually tend to suspect that my problem is the thirst (polydipsia), and the peeing is the result.To drink + pee or to not drink + be more symptomatic... sometimes I wish just one aspect of dysautonomia could just be clear cut!Weatherman, how did your uro appointment go? I've not heard of a bladder pacemaker before. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted April 2, 2013 Report Share Posted April 2, 2013 Thank you guys!Do you know of any websites or articles where I can find more info on this connection? My cardiologist believes it is not connected to my POTS. My urologist had me on a bladder-friendly diet for several months, which didn't help. So I go back to Cleveland Clinic this Thursday for a urodynamics test. I actually tend to suspect that my problem is the thirst (polydipsia), and the peeing is the result.To drink + pee or to not drink + be more symptomatic... sometimes I wish just one aspect of dysautonomia could just be clear cut!Weatherman, how did your uro appointment go? I've not heard of a bladder pacemaker before.They called this morning and canceled and moved it to next Tuesday. So now I gotta wait another week. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted April 2, 2013 Report Share Posted April 2, 2013 Thank you guys!Do you know of any websites or articles where I can find more info on this connection? My cardiologist believes it is not connected to my POTS. My urologist had me on a bladder-friendly diet for several months, which didn't help. So I go back to Cleveland Clinic this Thursday for a urodynamics test. I actually tend to suspect that my problem is the thirst (polydipsia), and the peeing is the result.Oh I feel for you, the urodynamics test is an experience! My personal favourite part of that one was having a nurse kneeling in front of me, calling out "LEAK!" to the urologist whenever the dam burst! they do gather really really good info though. I hope it helps them to help you. :-) Quote Link to comment Share on other sites More sharing options...
Lel Posted April 3, 2013 Author Report Share Posted April 3, 2013 Weatherman, sorry to hear of the delay... so frustrating! Let me know how it goes.Giraffe, oh man, I'm kind of nervous about the test, but maybe afterwards it'll be a good laugh. I hope! Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted April 3, 2013 Report Share Posted April 3, 2013 For me it has been a varied story of urinary retention and urinary incontinence. I recently had surgery to try to help and it has made things worse, but this might be temporary. I see my urologist next week so I will know more about what I can expect next. I kinda hope he will recommend a bladder pacemaker because I have heard good things about the effectiveness of them. It is a dreadfully frustrating symptom of dysautonomia, these urinary issues. My utmost empathy goes out to you.I thought the universe was playing the cruellest joke when I finally got my son toilet trained and had to swap buying his nappies for buying my incontinence garments!!! So unfair. All the best Lel. Will be thinking of you... Quote Link to comment Share on other sites More sharing options...
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