After the instillation....

[Violin]

Hello there.

As I wrote in another post, I've just had my first instillation with Cystistat on Friday. It wasn't so painful. But I'm nor feeling very well since then. My doc said as much I could put up with the liquid on my bladder, it' would do better. So, I had it for almost three hours without going bathroom.

My questions, especially to thowe who had this treatiment, are:

1) Was it too long to have the treatment in my bladder? Could it irritate my bladder? Since I have very sensetive skin.How long do you usually keep it?

2) For the next instillation, I'll be on my period, can I receive it without problems? Normally, the period doesn't affect me on my IC. What are the problems to recieve the instillation with the period? More possibilty to get UTI?

3) Is it normal to have slight pain after the instillation of Cystistat as well?
Or maybe I'm getting UTI? (My doc said no to antibioticshad to be taken with the instillations...)

Thank you...

[Dianne]

I think the longest I held it was 2 hours. But yes, I was always worse after because of the sodium. Years ago after the first course of Cystistat I got an 8 day remission. The only remission I ever got. But it came right back and I wasn't able to duplicate it with later courses. But what you described sounds normal. A period shouldn't make any difference.

[Violin]

Dianne, thanks for your reply.
How long were you being on Cystitstat? You've given up on it because you didn't see much difference, right? My Uro says that after this course of 4 instillations, every month he's going to put me an instill for the maintenance, although it dependes on my state of pain/freq. I'll receive these four and I will give it time for another 3 or 4 maintenances. As you said in another post, they are still so expensive...

[Dianne]

I think I did once/week for like 6 weeks and I did that 3 or 4 times. But I only got help with the first course and it didn't last, but nothing works for me, so don't be discouraged. I hope it helps you!

[sweetangel2080]

I read that cystistat works in 80% of cases on their website.

I have some discomfort for a day/two but that it is it - generally cystistat is quite soothing to the bladder.

[Violin]

I've had no pain today. Phew! I was so afraid to get UTI.
Sweetangel, how about the period? Have you received it with it? Mine is willing to start, and Friday I'll go back for the second one.
80% of success sounds much better to me!! I had that information on some Spanish Urology site...

[Dianne]

I'm menopausal so mote point. I think the 80% sounds high. I had read the trials were more like 53% maybe? I can't remember. Regardless I hope it works for you.

[Violin]

I went there all the way driving to my second instillation...
I met him at the reception of the clinic, and told him that I was with my period, and he told me that he wouldn't do any instillations on the days with it, because of the possible infection... So, I came back without it after all.... :headbang:

Well, on the way back, I bought a Chrstimas tree.... and some decarations.... ;)

[sweetangel2080]

That is a shame that you missed your instillation but maybe it was for the best. I have had my treatment regardless of my period - this time they did a dipstick test and I already had an infection but they still did the instill- this was the assistant nurse to the urologist - maybe they don't know about the risks?
Anyway I am haveing a 7 day course of antibiotics so hopefully will get rid of any low lying infection.

[Violin]

Like we are all different, it seems the docs are all different too... If you visit three doctors, there usually have three different opinions... So, we close our fingers sometimes, and believes what our doctore say...

My Christmas tree turned out to be not very well... I'll go back to my Uro next Friday, and also I'll bring back my tree to the shop. I'll buy the differnet one...