Anyone else have these issues??

Hello Mike.  Sorry that your having a problem.  It seams to me that urologist does not want to help you to much.  I think if you what to see the neurologist you should even if it just for your piece of mind.  There are many kinds of pills out there.  If he will not give you something see if you regular doctor will.  Ciproflaxin was giving to you because you most likely had a infection.  Have you look up a christmas tree bladder never heard of it.  So I did .your bladder comes to a point.  Going to have to read more on it.  Have you ever check the AZO products at walmart's or any of the drug stores.  Maybe one of them would help you.  Check them out.  I'm going to read up on your problem and see if I can find out anything.  I am going to see my urologist the first of september I'm going to ask him about it Maybe I will email him and see if he has any answers..  Ken   

Hi Mike,

Sorry to read your tale of woe. I have had similar frustration with the specialists, although my retention is total, not partial like you. (My sphincter is jammed shut, and my neurogenic bladder is so stretched from undiscovered urine retention that it will never, they tell me, regain its shape or sensation.)

I had all the tests and scans that the urologist could command, and still I have no explanation. He eventually shrugged his shoulders and passed me on, without much hope, to the neurologists, who did more tests and scans and still found no explanation. And that was that. My doctor thinks they've done all they can. Nobody knows or cares why I'm in the condition I'm in. The drugs I have tried are for prostate-related conditions, but there's nothing wrong with my prostate and nor am I diabetic.

I think it's one of the problems of western medicine that all the specialists work in isolation - so the urologists only understand plumbing and the neurologists only understand nerves. There's no overview. Lately I have been seeing a homeopath and have pee'd more in the last few weeks (three short broken streams only, but hey) than in the last 18 months since this blew up.

I am resigned to my condition, which I manage by self-catheterising with single-use catheters three or four times a day. It's no great inconvenience usually, just takes a little longer to go to the bathroom than it used to. And it's a whole lot better than being incontinent. I can even take advantage of it, on long nights out, knowing that if need be my bladder is big enough to last twelve hours.

Urine retention does have risks of infection, as you've discovered, and in a normal-sized bladder I suppse 200cc is quite a lot to retain. Drinking plenty of water helps to keep flushing out the bladder as best you can, although for you that would probably mean going to the bathroom more frequently. Being conscientious in washing your hands and genitals will reduce the risk. And it might be worth using a single-use catheter periodically to ensure that your bladder does get fully drained every now and then. I get two or three urine infections a year, which I treat with antibiotics.

In short, although it's not much comfort, I think your urologist may be right and there is nothing a neurlogist can do. But you have every right to try a different urologist or get your doctor to refer you to the neurologist directly. The neurologist will want to know if there has been any incident or accident which might have caused nerve damage to your bladder or any other part of your body. Nerve damage usually affects several areas so the neurologist will test your limbs, feet and hands. There is only one part of the lower spine where nerve damage ONLY shows up in the bladder - my neurologist eventually ordered a scan for that, but found nothing. You will know yourself if that sort of injury is a possibility.

If you're anything like me, it was the painfully slow process of trying to find answers which took its mental toll. Now that I have accepted there is no solution and no answer, I am no more than occasionally sad to be in this state, and it really doesn't hamper my lifestyle at all - I cycle, I travel abroad as much as ever. All I have to do is plan my peeing and take appropriate supplies of catheters and cleansing wipes with me when away from home. Of course a functioning bladder would be better!

Sorry I can't be of more constructive comfort, but I hope things settle down for you soon. I certainly would not be discouraged from insisting on further consultation if you feel there are still things unexplored and unanswered. Let us know how you get on.

Best wishes,

Colin

Mike.  I just got a e-mail from my urologist.  I told him about you and your problem.  With a neurogenic bladder there is no meds that he can give.  He told me that you will have to do CIC for the rest of your life.  He also said not to like them touch your prostate.  The problem is your bladder.  Sorry about that.  Take care Ken