IC w/o pain?

[JRosebrock]

My OB/Gyn & my urologist agree that I have IC, based on my symptoms. I'm currently on VESIcare, and I drink less (on dr's orders). I have seen improvement. Myurologist says the next step is a urodynamic test. It sounds unpleasant, and he was only mildly reassuring about that.

I visit here occasionally, to find out more. Still, lots of questions remain unanswered for me. Like:

Is the uro... test necessary? Will it diagnose for certain? Is the pain worth it?
I have frequency and urgency, and a feeling as though I'm never 'finished' when I void - but no pain. Could this be something other than IC? If it is IC, will the condition worsen, and will I have pain later?
And I'm on meds now; will I be on meds for the rest of my life?

I'm bothered, and I'm grateful for anyone's time.

Jean

[nottoc4]

That is how I started...Over Active Bladder...on 4 different meds and none of them really did all thet much for me..the UTI's began...the urethra would twitch...finally a test with fluids and potassium and I reacted to it and got the diagnosis.I'm on Elmiron orally and have had 9 bladder instillations. Most days I'm doing ok .I try to stick close to the IC diet and I keep a food log which had helped isolate things that bother me. Even some of my meds give me a reaction,like vitiamins and Allegra!

[Roandro]

I only have a mild case of IC/PBS but I was diagnosed on the basis of my symptoms (VERY, very occasional pelvic pain similar to menstrual cramps) and some urgency and frequency.
What tipped it in for me was an office cystoscope administered by my urogyne. He was able to get 550 cc's of water in my bladder and got a look around. He saw some irritation and inflammation but he didn't see anything that warranted a full hydro-cysto where you are under general anasthesia.
He gave me a dx of painful bladder syndrome and an rx for PFD therapy and for vaginal Estrace for atrophic uro genital area (I'm post menopausal.)
Now I'm ok if I watch the diet (no coffee, tea, beer, tomatoes, fresh fruit, vinegar, wine or sugar - they seem to be my worst problems) and wear skirts and loose pants (tendency towards getting UTI's) and avoid baths -I'm ok.
Plus I get acupuncture once a month.

[JRosebrock]

Roandro -

I believe that if I in fact have IC, it must be a mild case, as yours is.

Did the cystoscope hurt? Did you have pain after the procedure?

And what is 'PFD therapy'?

Maybe these are things I should look into ...

Again, thank you for all your input. I'm trying to be as informed as possible, and I'm asking questions as they occur to me.

Jean

[elamar]

Those meds for over-active bladder don't tend to work too well for those of us with IC. I would highly recommend you see if your doctor can switch you to ditropan xl (there is a generic available for it). That should help reduce that gotta go feeling much better. I had to take it at a higher dose (like 4 times a day for a few weeks) before the sensation to urinate finallly calmed down. I also used urelle (generic form called utira-c) along with the ditropan. This also helps reduce spasms and cleanses the urine. Urelle or Prosed turns your urine blue, so don't be alarmed! The only bad thing about ditropan is at the higher doses, it will make your mouth feel very dry and can cause constipation. You may want to use something like miralax to keep things moving while on it. There shouldn't be any reason your doctor should deny you these meds while waiting for your tests. I was able to wean off the ditropan all together. I keep utira-c on hand and only use it when that gotto go feeling creeps up. So I don't even use that much any more. Another thing that might help is atarax (also a generic available for that). It is an anti-histimine. There is a theory that IC may be some sort of allergic response to something. It also makes you very sleepy, so you take one at bedtime along with ditropan and urelle and you should sleep alot better! I hope this helps and I hope your doctor can call these in for you without alot of hassle. Good luck to you.

[JRosebrock]

Elamar -
I tried oxybutynin chloride (Ditropan; VESIcare is SOOO expensive & has no generic), but it actually gave me difficulty urinating! And the dry mouth nearly KILLED me. I'm back on VESIcare.

I'm interested in the other treatments you mentioned; I'll look around and talk to my doctors about them.

Thank you so much, Elamar!

Jean

[mimi1027]

My uro put me on Sanctura XR 60 mg for OAB and it has helped my sypmtoms. I was very scared to get on it b/c one IC member posted they had had a horrible reaction. However, I have had absolutely no dry mouth or any other symptoms. So, sometimes OAB meds do help with the IC.

[JRosebrock]

Mimi1027 -
Oh, thanks for the suggestion! I've never even heard of Sanctura XR. So that's one I'll mention to my dr.

It really does seem that the OAB meds have helped my symptoms. (VESIcare only; Ditropan just made things worse.) I say helped because nothing makes my symptoms go away completely.

I'm due for another visit with my urologist soon, anyway, so this is all very good information to have when I go.

Thanks Mimi1027!
Jean

[loriw]

Have been on Ditropan XL for 1 1/2 years and it has worked really well for me..
10 mgs. in the morning and 10mgs late afternoon....I use a moisturizing dry mouth Gel called Oral Balance and that REALLY works and I also take flax seed oil capsules and flax seed regularly for the constipation issue.