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Hi I'm 43 year old male with detrusor sphincter dysynergia. Have been dealing with this for a couple of months, now. My doctor gave me Rapaflow pills, which seem to help. Doctor says I need to re-learn how to relax my bladder. What can I do? What will help my bladder relax and return to normal?
In 1994 I kept coming down with kidney infections and finally consulted with a urologist. First urologist mentioned that I had a bladderneck obstruction following a cystoscopy. He later changed his mind and discharged me as a patient as he was about to retire. Not a great loss.
My wife got me scheduled with urologist two who also agreed that there was some obstruction and at first treated this with Flomax. One day while at work, I had a problem with loss of control over my bladder. After contacting the urologist, I was scheduled for a TURP and resection of the bladderneck. 6 months after the surgery I once again started to have simmilar problems. A urodynamics test was scheduled and detrusor spincter dysynergia was diagnosed. Flomax was increased with no real result. Second urodynamics test was done this time revealing that I have a neurogenic bladder.
This time I was left on the Flomax, but started to self cath once a day.
I ended up getting hospitalized at about every 3 to months with UTI, kidney infections and or epididymitis and orchitis.
In 1998 I ended up with severe numbness and muscle strength and coordination I was referred to a neurologist as my family doctor at the time suspected Charcot, Marie, Tooth disease. After numerous tests and finaly a left sural nerve biopsy, it was determined that I had Charcot, Marie, Tooth disease, HNPP. After my own research I found out that I had HNPP (hereditary neuropathy with liability to pressure palsies) This is the genitic oposite of Charcot Marie Tooth disease.
In 2003 as part of a diagnostic clinic dealing with my HNPP a urologist dealing with sexual well being was part of the study. Since I had been having problems with ED I decided to attend the clinic even though I was more concerned about rehab for the HNPP. After a first consultation with this urologist he suggested to look into my urinary problems and scheduled another urodynamics study. It once again was confirmed that I have a neurogenic bladder. This time they suggested that I'd self cath several times a day.
This worked very well untill 2008 when I ended up hospitalized with a bad kidney infection and pneumonia. At this time I noticed that I was passing gas through my catheter and penis. After I was discharged I was scheduled for a cystoscopy which indicated a fistula between my prostate and bladder. The urologist feels that I caused this during self catheterization. I will have another Cystoscopy and review on Jan 12.
My question to you is if you have any other medical problems that could be linked to this? Problems with the detrusor sphincter could be of neurological cause. If this is the case than medication will do very little to overcome the urinary problems.
The other thing is the possibility of an un diagnosed neurological diease. Possible back injury or some problem of that sort could impair nerve function to the bladder.
It is important that a person can empty their bladder completely. Residual urine over 100 cc can cause problems with repeated infections, which is the case with myself.
Self catheterization might be an option to ensure that the bladder is emptied completely at least once a day.
It seems that doctors have a very poor knowledge as to what can be the causes of Detrusor Sphyncter Dysynergia or neurogenic bladder. In my case the HNPP being a neurological disease now seems to be viewed as the cause of my urinary problems. Just recently I have also started to have bowel problems of simmilar nature.
In 1998-99 while I was at work as a mechanic, I was working on a truck up on a vehicle lift. Appearently as I was working near the tail gate of the truck, I passed out and ended up falling from the tail gate and from the hoist, head first onto the concrete floor. I was out for several minutes before I came to again. Once I got up I seemed to be doing Ok but deciced to get checked out any way. Besides me having a large lump on my head as well as an injury to my right shoulder no major injury was found at the time.
As part of the Neurological infestigation and MRI ws performed in 2000 and nothing significant was found, other than a small white area in the brain. I do not believe that the fall that I had was a contributing factor in further problems with my bladder and possible injury to the nervous system, but things did get worse after 1999.
I hope that you don't have nay underlying problems but It might be worth your while to get further medical tests done to try and pin point the cause of your urinary problems. There has to be a reason.
Last self catheterization is not as bad as it sounds. It might come as a relief to be able to empty the bladder completely.
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