Cysto and remission?

[Gisèle]

I have been browsing around a lot on the ICN and learning so, so much. A question I have been wondering since reading a few posts is once you are in remission or between flares, and you were to have a cystoscopy and/or hydro and biopsy, would the doctor still be able to tell that you have(or had) IC by looking at your bladder? Also, what is the difference between being in remission and being between flares? Thank you.:)

[ICNDonna]

Even if you are between flares, your doctor will be able to see the IC during a hydrodistention --- and the biopsy should also be accurate.

Some people call any pain free span of time a remission. What I call a good day may be referred to by someone else as a remission.

:)
Donna

[Agape]

My question is similar....will he be able to tell if you have IC with an in office cystoscopy even if you are now feeling much better? I have been on the Elmiron for two weeks and now feel fairly well. I'm afraid of the test causing me to have a flare,but I want a definite dx. Also...would one or two good days be considered remission or are people talking about months and years?

[GriffsMommy]

To me remisson means that I don't have ANY symptoms. I have daily IC symptoms which can include urgency, frequency and some pain. A flare for me is when one or all of these things get worse. When I have an increase in frequency to every 10 minutes I consider that a flare. When I have a major increase in pain, I consider that a flare. For me to say I was in remission I would expect my pain to stop and to have normal or close to normal frequency but that's just me.

[Claredale]

Same for me. I have symptoms daily. Most of the time, my usual meds keep me functioning, so of course I wouldn't call that remission. The last time I had remission was when I was in my late 20s. Before that, my IC was not too terrible, I could handle the symptoms most of the time through diet, etc. I just had the occasional gotta pee moment especially during travelling. Then one day, IC hit me with a huge flare out of no where and I haven't had a symptom free day since. That isn't saying that I haven't been able to function. I still work, and all the usual things. I seem to only flare about 2 or 3 times a year now. But that goes back to what you call a flare. I have pain everyday, therefore I take pain meds everyday. My freq/urg is only evident at night when I am trying to go to sleep or I settle down for any amount of time. I always stay away from the foods that I know cause triggers, so normally my life is bareable. I also have the interstim implant, which helps with my freq/urg problem, but you have to go through alot of steps and investigation before you try that remedy. It is major surgery and doesn't always work.

But I call any day that I am not looking forward to getting home to my heating pad a wonderful day!!!

Tracey

[mom_in_ma]

Hmmm...when I was in remission I had zero symptoms and could eat whatever I wanted to eat with no problems. Although, I have to admit, there was ONE food I couldn't eat...yogurt. That said, I can't say whether or not your ic would be visable in a cysto or hydro if you were in a remission. My guess is that it would vary from person to person. Also, if you're in remission, why would you have the test done?

[Agape]

I don't know exactly if I am in remission or not, I only know that in the three weeks I've been on Elmiron, my symptoms are way better. I no longer have what I thought of as bladder pain. I never really was concerned that much with frequency or urgency. I still have lower back pain which may or may not be related to this possible IC condition. I still want to have the cysto because I am hoping the dr will either see something or nothing. In other words I would like to know for the future if I do have IC or not. Also, I'm very anxious to try some more foods from the avoid list to see how I react. I could give up yogurt. even though I used to eat it often for weight management.

[Gisèle]

Thanks for the information everyone. :)
Mom_in_ma: I am not in remission, I haven't even been officially diagnosed, yet(hopefully Monday.) But while I was reading some posts, the question occurred to me of whether or not your bladder pretty much always looks like an IC bladder. I, for one, wouldn't get a cysto if I was in remission. lol.

[Agape]

I am NOT in remission. Pain meds sure can hide your true feelings and make me feel almost normal. I had the cysto and even though my bladder appears okay, the dr says I definitely do have IC and will continue treatment the rest of my life. Now, as far as my back pain, I am off Monday to see an internal medicine dr for a possible scan. I have no idea if I'm dealing with something else or what.