IC/BPS...

[michael_dahlke]

I changed my urologist and had a new cystoscopy this week and I’m a frustrated. While I had the hope that my bladder wall will regenerate some how, the cystoscopy had show that this seems not to be the case. It had shown indicators for IC/PBS what is actually the new diagnoses and I’m a bit frustrated that they did’d found out that before. More over this means at last to me, that there is most likely not that much hope that things get better as they are now.
I don’t wont to try new medications, and I’m not sure if I should really try an InterStim (what might be an option and was offered). I mean - meanwhile I learned to live with one ore two accidents a day (mostly on the way from and to work) and the bedwetting. And when I read what other experienced with InterStim I’m not sure if I will risk that in the moment.

Does any have experiences with successful treatment of IC here?

Thanks

[5bugles]

I don't have a LOT of experience with various IC treatments - others on here are much more experienced than I - but the handful of meds I tried and the surgery I had only seemed to cause other issues. The side effects of the meds were worse (for me) than the IC, and the surgery at first caused complete loss of control, then some improvement, and now I believe it is the same as it was before the surgery (a year and a half alter). At this point, I've just accepted diapers as the best solution to my problems, until and unless my urologist comes up with a new approach that makes sense to me and I feel is worth trying. It sounds like your issues are primarily at night and when a toilet is not close by, so maybe you can just use appropriate protection for those times and live "normally" the rest of the time?

[michael_dahlke]

It sounds like your issues are primarily at night and when a toilet is not close by, so maybe you can just use appropriate protection for those times and live "normally" the rest of the time?

Hi 5buggles,

that what I’d done for the last year. I wear diapers when I’m on the way and meanwhile also again for the nighttime. For the rest of the daytime I use a pad when I’m at work and at home normally no protection. How ever - I had the hope that I would be able some when to come at last over the complete daytime without any protection. I mean I still have my voiding and drinking plan and - yes - it’ great that I have meanwhile “only” one or two accidents over the daytime instead of nearly no control at the beginning, but I had and have still the hope, that there is more possible.

The point is, that I didn’t saw any improvements for the last year what makes me feel, that there is no further improvement possible with the timed drinking / voiding approach. This was also the reason why I changed the doc - but the new one had - despite of the new diagnoses - not that much more to offer then the old one - what makes me feel realy frustrated.

[realworldic]

First off many people do find relief so I hope you don't give up there is hope! I like a few others have not had the success we wanted, like others the side effects of drugs and with the two surgeries have not found that "relief" but I have found a way to manage that allows me to live a very full and active life so I don't what you to feel down because this issue does not need to ruin your life! There is hope and options for you it just takes time and patience to find what will work for you!

[Patrick]

You deserved to be commended for your successful management. That is an achievement we can all celebrate, and it should instruct others who are struggling.

[michael_dahlke]

Thank you for your kind words. I will hang in there and see what’s still possible. I hope that I can come up some when with better news. I know, that the 3 years where I’m suffering from this problem are probably nothing compared to those of you who have to deal with this for a whole live or may have even worse prognosis. How ever - it may sound stupid, but at last for my this has shown, that even if there’s no improvement possible there’r people around who coping with it anyhow - and that’s also reassuring to see for me that there’s also a plan B...