Confused

[Debbielb]

I am trying to understand what is happening with my response to instillations, so I can decide what to do. (although I'm beginning to become aware that trying to making sense of this condition may be a futile endeavor )
I was diagnosed mid-July after a week and a half of symptoms, and one of the diagnostic tools used was the anasthetic challenge. I responded within minutes, with a significant decrease in discomfort.
After that, I received 5 more instillations of the same recipe (heparin, lidocaine and sodium bicarb) on a weekly basis. With each one, my number of good days increased, and the symptoms were less severe when they returned. Between the 4rth and 6th, I went for 9 completely symptom free days! I was struggling right after each one a bit more each time-with urethral burning or burning after releasing the instillation. I was willing to put up with that because the trend of getting better was so clear.
My doctor told me that he usually only gives 4 to his patients, and that after that they are carried on Elmiron and Hydroxyzine (which I started about 3 weeks ago), and suggested I stop having them weekly and just go in when I'm in a flare.
Anyway-(and I'm finally coming to the point) I haven't had an instillation in almost three weeks, and my trend line of improvement seems to have reversed. Less and less symptom free or mild symptom time, and the symptoms are more like in the beginning when they return. I've had two incidents over the past week during which the symptoms increased dramtically and suddenly to pre-treatment levels. The first time they subsided just as dramatically after 12 hours. The second time started Friday evening, and is still going on.
So, I'm trying to understand what is happening. Am I just having those mysterious flares (for no reason-I'm still on the elimination diet and have been since diagnosis), or is it possible the bladder coating the instillations were providing has already washed away? Does that even happen? Is this prognostically significant-I mean if the bladder coating washed away so quickly, does that mean I'm sicker than I thought-or that the Elmiron won't stick too? My doctor says there is no evidence to support continued use after the initial 4 nor is there any to support not using them, and he is willing to let me call the shots on it. He did say I need to consider the fact that I'm struggling with them afterward.
Does anyone have any experiences that would help me make sense of this?

Thanks, and I apologize for the massive information overload. I never know what is important and what isn't!

Debbie

[ICNDonna]

There are many people with IC who self instill regularly, some every day and even some twice a day. It could be that just changing to a smaller catheter would help. Since the instillations helped substantially, my suggestion is to at least discuss continuing them, at least when you flare.

Sending healing thoughts,
Donna

[Debbielb]

Thank you, Donna. I read the posts on this forum frequently, and always look for your responses. They always seem to provide calming and practical information. They have helped me many times.

[L. Thomas]

Allergies and IC are directly related. Hydroxyzine is the strongest antihistamine you can take. It is used to treat allergies. I have been doing home instillations for several years. Most of the time I need instills every 4-6 weeks but during seasonal allergy season I need instills almost daily.

Dr Dell has done extensive research with MD's in the US and other countries. There is a link in my signature to some of published articles he has written or coauthored with IC specialist . There are also a few taped interviews. He has conducted several research studies with Elmiron, instillations and other treatments for IC. It might be helpful if you looked at his findings. He is happy to talk with other MD's about treatment of IC.

[Debbielb]

Thank you! I've read the articles and watched the videos. All were very helpful and hopeful! Thanks a lot!