dancer65 Posted January 19, 2021 Report Share Posted January 19, 2021 I often get the urgent need to pee when my bladder is not full but recently I have been experiencing numbness half way through emptying my bladder , so much so I can’t feel when I have finished . This is new symptom for me could it be ralated to POTS? thanks for any input Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 20, 2021 Report Share Posted January 20, 2021 @dancer65 - yes, urinary symptoms are common in POTS. For myself I find that when I am over stimulated and my adrenaline runs high I pee all of the time, sometimes up to 1000 ml urine in one hour! I think that is what then leads to low volume and that triggers the ANS malfunctions. --- I also suffer from Interstitial cystitis, which also is a common condition in POTS. It causes many unpleasant symptoms, including bladder spasms, having to pee all the time but only a little each time, peeing but stopping before you are done ... what I did was go to a urologist who scoped my bladder and diagnosed the IC. I always has blood in my urine samples, although not visibly. There are some treatments you can try, but it is a chronic condition. I would keep a watchful eye and see a urologist if it continues. Sorry you developed this symptoms on top of all the other ones - it just never stops, does it ? 😆 Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 20, 2021 Author Report Share Posted January 20, 2021 Hi pistol thanks for replying . I shouldn’t complain really I have been doing really well since lockdown has forced me not to work ! I can relate to your symptoms I have always been teased for the amount of times I need the bathroom since childhood . I was told after my hysterectomy I have a child size bladder so that doesn’t help . I don’t get any pain it’s just a weird feeling “out of control” and often return immediately to the bathroom as I feel I need to go again !! It’s also very intermittent. My last urine test was about 10 years ago when I was going to be tried on an auto immune suppressant for my alopecia , as the loss of hair in my ears nose and eyelashes is affecting my hearing and allergies. I was declined due to blood in my urine and it was never followed up , so thats an interesting point for me . Thanks so much for your input I am going to keep a dairy on this and call Dr if it continues . Hope your family are managing to stay stafe and well xx Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 20, 2021 Report Share Posted January 20, 2021 @dancer65 - have you been checked for a UTI? Your symptoms could also be from that. A simple urine sample can detect that. UTI's can be very hard on many women, but especially on us "older" specimens ( I am 54 ). A UTI will cause a flare since it is so stressful on the body. I just had one and as soon as the fatigue and orthostatic intolerance started I had my urine checked and they put me on an antibiotic. My only symptoms were bladder spasms and the urge to empty my bladder - sometimes incompletely as with you. Your doctor can order one over the phone. The fact that you had blood in your urine should have been evaluated back then. There are several causes for that, most commonly UTI and IC. I really would get a urine test to be sure. As I said - if it is a UTI it needs to be treated right away since it can easily get worse if left untreated, and even lead to kidney infection. IC is a chronic condition and is mostly treated with reducing acid in the food, either by avoiding certain foods or by taking an acid-reducing med before eating high acid foods, called PRELIEF here in the US. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 20, 2021 Author Report Share Posted January 20, 2021 Pistol thanks for your help ! I will look into Prelief. Yes I’m 56 soon yikes it’s scary!!! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 20, 2021 Report Share Posted January 20, 2021 @dancer65 - still get that Urine test, just to make sure it is not a UTI! If there is blood in the urine but no bacteria it could be IC! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 20, 2021 Author Report Share Posted January 20, 2021 Will do 😀 Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 25, 2021 Author Report Share Posted January 25, 2021 Pistol I just wanted to thank you for pushing me to go to Dr . I don’t have urine infection but due to loss of sensation I have to have MRI to rule out Cauda equine syndrome . If the loss of sensation progresses any more then I will have to go immediately to hospital . Trying to stay positive that this is more a localised problem than being caused by my spine . 🤞🤞🤞 Again thank you I really was ignoring this problem I was just putting it down to POTS ! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 25, 2021 Report Share Posted January 25, 2021 @dancer65 - I am so sorry! Can they treat that? I am so glad you went to get checked. Especially since the smallest things can throw us out of whack it is very important to see our docs whenever something out-of-the ordinary is wrong. Wishing you all the Best ! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 25, 2021 Author Report Share Posted January 25, 2021 Thanks Pistol , been rather a worrying morning ! The good news I haven’t loss pelvic sensation at the moment , if I do then it is classed as a emergency 24 hours to have surgery or incontinence is not reversible . It is caused by herniated disc Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted January 25, 2021 Report Share Posted January 25, 2021 I have terrible bladder issues. Started when I was 6 years old, have it in my records. I think it's more of a bladder outlet obstruction kind of thing b/c the only that has helped me is rapaflo (an alpha blockers that lowers blood pressure), so I can't even take it. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 25, 2021 Author Report Share Posted January 25, 2021 Sorry you haven’t found any thing that helps you , must e awful putting up with problems since you were a child Quote Link to comment Share on other sites More sharing options...
dazzlemom Posted January 26, 2021 Report Share Posted January 26, 2021 I have interstitial cystitis which has ties to dysautonomia which I have not officially been diagnosed with yet. That said, myself and both my kids have been diagnosed with hEDS since 2019. I have done so much research since then on many of our issues. I also have pelvic floor dysfunction which causes me to release a little more urine after my stream stops and I try to stand up. I have long said that sometimes I can not feel myself urinate. Both of my children also struggle with bladder issues ie; spasms, pain, frequency, urgency, pudendal nerve issues. I have a procedure typically 3 to 4 times a year to minimize some of these issues. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted January 27, 2021 Report Share Posted January 27, 2021 On 1/26/2021 at 12:32 PM, dazzlemom said: I have interstitial cystitis which has ties to dysautonomia which I have not officially been diagnosed with yet. That said, myself and both my kids have been diagnosed with hEDS since 2019. I have done so much research since then on many of our issues. I also have pelvic floor dysfunction which causes me to release a little more urine after my stream stops and I try to stand up. I have long said that sometimes I can not feel myself urinate. Both of my children also struggle with bladder issues ie; spasms, pain, frequency, urgency, pudendal nerve issues. I have a procedure typically 3 to 4 times a year to minimize some of these issues. Wait I've been researching and I think I have some form of EDS that's gone undiagnosed since childhood. My bladder problems started at age 6. I got really sick at age 18. Terrible chronic pain in high school. I'm so sick now. I have diagnosis of IC too but I think I've got some form of bladder outlet obstruction which alpha blockers like flomax and rapaflo help, but they lower blood pressure so we can't take them. Quote Link to comment Share on other sites More sharing options...
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