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Living with Polyneuropathy CIDP, GBS, & CMT

Urinary problems

Hello! I am just beyond a year out from diagnosis. I initially had trouble with urination. I had to go every 2 hours, you could set the clock by it; even during the night. (I joked with my 19 year-old that getting up with me during the night should be good birth control motivation for him! haha) I still have trouble with urination, I often have to go small amounts, I am sure my bladder is not always emptying. I also seem to have trouble with a little leakage. Does anyone else have this problem or similar? I am trying to figure out what to do about it as well. Kegels? If anyone has experience with this, I would love some input.

PS: I recently joined and have learned so much from everyone, thank you to all who are open and willing to share.

I actually can relate… I go way more frequent than I used to before GBS. I have done Kegels actually and find that they help. But I also found that just going when I need to instead of trying to hold it also helped for some reason. Over time it’s getting better. But I still have the issue that when I need to go… I really need to go! Lol.

Thanks for your response Asia! I seemed to do ok at first, but now it is really bothersome. I started the kegels but haven’t gotten any real results yet. I am a nurse and we are accustomed to ignoring the need to go… I am working on retraining myself! :slight_smile:

I’m a male and I also have this problem. Every two or three hours I have to go. Since I’m still using a walker and AFO, and I have the right equipment, I keep two hospital urinals by my bed at night.

There are times I wish I could’ve used a urinal Mark! :slight_smile:



Mark said:

I’m a male and I also have this problem. Every two or three hours I have to go. Since I’m still using a walker and AFO, and I have the right equipment, I keep two hospital urinals by my bed at night.

Hi!

Please do realize the Bladder is a muscle. GBS can profoundly affect muscle and nerve functionality. You also didn't ID what your age is but getting older also impacts proper bladder function as well.

I highly suggest you see a Urologist for a consult. Be frank in how things were prior to the GBS as opposed to what you are experiencing now and ask to have a work up done to try to better ID the nature of the problem along with any treatment or rehab recommendations moving forward. Depending on the degree of impact you may have had from whatever type of GBS you were diagnosed with you might benefit from Bladder PT (yes, there really is such a thing even though it is highly specialized and as weird as it probably sounds).

A proper Eval needs to be done to sort out where the problem source might lie. Call your Primary MD to see what local Urologists he refers patients to and ask if he/she knows of any who have ever evaluated patients who have had GBS. Do your own research locally as well via online or phoning URO offices to see if any have had patients who have also had GBS. Check with your Health Insurer first before making any appointment to be seen as you may require your Primary MD to refer you first and the URO may not be within your Primary Medical Group's Specialty list and/or the URO may need to be In Network if you have PPO health coverage to prevent having to pay a far higher coinsurance, deductible etc. Call your Health Insurer's Customer Service Dept to find out if a specific Urologist is In Network for the type of coverage you have.

Best wishes!

I was diagnosed in 2003 & also still have that problem. Now I have even wear a diaper as my legs sometimes don’t get me to bathroom that fast. And have quite a few urine accidents mostly whenever I’m asleep or out away from home.



Jazz said:
I was diagnosed in 2003 & also still have that problem. Now I have even wear a diaper as my legs sometimes don't get me to bathroom that fast. And have quite a few urine accidents mostly whenever I'm asleep or out away from home.