www.incontinentsupport.org

Thanks Puffy,

You are right on the mark with your thoughts about discomfort vs wetting. I am still stressing getting a man that has spent his career keeping people out of a diaper to putting one in a diaper. Even thought I have been in one for several years, I am sure that is how he will look at it.
I have an appointment for my second cysto Monday morning and hopefully that is when I'll be able to talk to him again about this. Wish me luck.

Rope

Rope

Good luck on your next appointment, hope things come out ok.

Schoppy

Rope, If I have learned nothing else in life the one thing I have learned is that you have to be your own advocate when it comes to health. Doctors sometimes hit a wall and they just can not admit it. No one knows our bodies and minds better than we do. You have made a decision you have thought out and understand the consequences of. The plus side of no pain seems to be a realistic goal. You already have dealt with diapers for years so no surprises there. Stick to your gut feelings, I have learned in war and life that they usually are right on. Papa

Thanks Papa,

I don't know if you saw it posted somewhere else here but the doctor waswas not comfortable with what I wanted but was willing to refer me to a university doctor that has more freedom with unconventional treatments. As of now I opted to give up for now and just focus on managing where I am. I had one friend that felt that was a bad idea because if I wait I would have to start all over with all the testing again. The testing sucked and I don't want that but I'm am kind of discouraged it will ever happen. I need to decide at what point I am willing to stop fighting and just accept things as they are.

Rope

Rope, that's a tough decision to have to make. Sorry that you will be left with the pain.

--John

Rope, It sounds like you are not 100% sure yet. I am not totally sure of what this procedure will do. Remove the sphincter (sp)? After my surgery I had absolutely no control and had no idea at all when I was wetting my diapers, actually it was a continuous dripping for more than two years. In some ways it was easier and the diapers (mostly cloth diapers) slowly absorbed it which made them more efficient. But I would do NOTHING if I were you until you absolutely are sure it is where you want to go. Papa

Apologies Papa for the confusion on what I am wanting and hoping for. The route u am wanting to take is first to treat the sphinctor with Botox and see if I get the pain reduction I believe will happen. If it does, then I would look at the more permanent treatment. As for wanting to go this route, I am 100% sure I am willing to go this way. I am just getting discouraged with all the hoops I have to jump through to get where I want to be.

Rope,

Please forgive this tardy reply.

In many ways your account could be my own. I guess the event which impressed my urologist with the need to do a sphincterotomy was a videocystometric dynamic test. The video was in real time; it showed my bladder going from normal to a violent spasm which caused me excruciating pain. It showed that the Botox injections were no longer working, and that a sphincterotomy would be the only option. Although I would not wish that pain, or the sphincterotomy that cured it, on anybody, I would do it again, if necessary. I am not in the business of telling anybody to go doctor shopping; however, when the pain gets bad enough, when your bladder is threatening your kidneys with reflux damage, as mine was, something needs to be done.

Thank you Patrick,

We have a lot in common as far as what we have or had to deal with but there are some differences. While I do gave daily pain I would not discribe it as excruciating. The main problem I have the causes the pain to be bad enough I want something more is during long car rides and during sex. That is when it gets worse then I can handle. It may sound selfish but it is ruining my sex life with my wife and I don't want to give that part up. Unfortunately the doctors don't see that as a viable excuse to do such an aggressive surgery.
The other difference is I don't think I will ever have to worry about retention or damaging my kidneys. The UDS showed a VERY small residual amount of urine and an even smaller capacity before my bladder would spazum and begin leaking. I think that is what caught there attention to what they wanted to fix even though me trying to explain that by fixing that, that would cause a massive increase to my bladder pain.

So at this point I am giving up on doctors and hoping in time that my small capacity bladder just gives up and stays open on its own some day. I think that will be my future with this condition. I just pray I will not have to wait too much longer.

Rope,

At the point of my sphincterotomy, my measured bladder capacity was 4 ozs. That was enough to spark a violent spasm. As long as this is happening to you, your kidneys may be at risk. The only way to deal with that is to keep it under surveillance. Good luck.