Urinary Incontinence

[rjames1973]

I am a fairly new member on this forum and need some advice. I am a 34-year-old male who suffers from urinary incontinence. I was born with Spina Bifida and have full mobility. I have always had some issues with incontinence, but the problem has always been minor. In the past year or two, my incontinence has gotten progressively worse. I've been going to a Urologist in my area who has not really been able to help me improve my situation. I did have a Cystoscopy and Urodynamics test performed several months ago to determine the extent of my bladder problems. Based on those tests and my history with Spina Bifida, I have been told that there really isn't anything that can be done to help me. The only treatment, I am told, is to self catheterize. I tried Flomax at one point, but it made me extremely ill, so I stopped taking it immediately. I am at a point now where I don't know what to do. I have temporarily stopped going to my doctor, as the prospect of self catheterizing seems like a death sentence to me. I am single and would like to start a family sometime soon, so I am concerned what effect this will have on my life from here on out. Does anyone have any advice on my situation? Are there any options I might explore that I haven't tried already? I hate to think that the only option I have is to self catheterize. BTW, for those of you who do self catheterize, I do not mean you any disrespect. This is just an option that is new and scary to me. Thanks.

[Nickc]

Hi there,

I am a 44 year old who was also born with Spina bifida. I have been incontinent from birth but it has only been in the past few years that I have had some help and support with it.

I used to wear incontinence pads as my leaking was quite severe. It was only when my wife and I were trying to start a family and having difficulties that it was suggested that I used a sheath and leg bag.

This is not an ideal solution by any means but compared to the pads it was a blessing.

As well as the leaking problem I also have a problem passing urine. I have to strain extremely hard and this causes its own issues. To get round this I decided to have a Suprapubic catheter put in.
This has helped most considerably with the straining but I still get the leaking so the sheath and leg bag are still required.

I have had Urodynamics and Video Urodynamics in an effort to find the reasons for the leaking.
An unstable bladder was thought to be the problem and to try and cure this I had Botox injections
given in to the bladder. The first course did not prove successful so had a 2nd course but unfortunately this also failed.

The video Urodynamics then showed that it was the sphincter that was not closing at the neck of the bladder. It was always remaining slightly open, hence the leaking. The first option offered as a possible solution was Bulkamid injection which is a gel like substance designed to block the area that causes the leak. Again the first instance didn't solve the problem. This was followed up by a 2nd dose of injections where the consultant used a greater amount of the Bulkamid but again the leaking didn't stop. These attempts and failures left me very disappointed but the consultant was still not finished.

I am currently waiting to go in and have a Transobturator Tape Sling inserted which is designed to almost tie up the bladder neck and stop the leaking. The surgeon is hopeful that he will soon get the go ahead from the Health Care Trust to carry out this procedure.

Unfortunately I can't help with recommending a consultant as I live in the UK.

I'm sorry for rambling on but I hope it has given you some insight and some ideas to take forward.
You must try and stay positve and try not to worry too much about it affecting your chances of starting a family etc. There are many kind and thoughtful people on this planet who aren't put off about these problems and will see you for the person you are.

I've also a crooked pelvis and a below knee amputation of my left leg so although I am not wheelchair bound, I do find it slightly difficult to do a great deal of walking. I have a lovely wife and a 9 year old daughter who we had through an IVF program so despite of my problems I still count myself as lucky.

Good luck to you and I hope you find a solution to your issues.