Can I still be diagnosed if I'm in remission?

[karenknispel]

Hi all:

I'm actually not in remission, but I recently had a hydrodistention done and I heard that some people go into remission after they recover from the procedure. Believe it or not, I'm actually worried about this happening because I haven't been diagnosed yet and I want to start testing out different treatment options. If I go into remission, I worry that I may feel fine for a while but that the symptoms might come back at a really inopportune time (i.e. while travelling, unemployed, etc.). I want to deal with it now, not later. Does anyone know if I can still be diagnosed, for example, with the Potassium Sensitivity Test if I'm in remission? And does remission mean that I could eat whatever I want and the symptoms would not come back?

Thanks for any advice.

[lindy lou]

This is such and indivual disease that there may not be answers to your questions. I would think that even if your symptoms are mild, you could still be affected by the PST. It would seem to me that the remission is not a cure but a result of the treatments that are successful for you. This is not a disease that you can schedule for convenient times either. There are no guarantees that a successful treatment would make it so you could resume your "old eating habits". As for me, once I find something that works, I do very little tampering with it in fear of the pain returning.

Linda

[jaime15]

Tests will reveal that the bladder lining is still in need of repair. The way I understood elmiron to work was the medicine makes the bladder 'think' it has that protective coating so symptoms will be at bay if it's the right one for you.
If you were to do the cysto again on my bladder I would assume the picture would be the same again as it looked nearly 6 years ago.
So to answer your question, I would say tests will show whether you have IC or not no matter what your medicine regimen is. As always discuss this with your uro too. :)

[hoping4acure]

Hi. :welcome:

I'm a little confused....why would a doctor do a hydro on you if you haven't been diagnosed with IC? I would question that doctor, and If it was me, I wouldn't let a doctor do anything to me until I knew what was wrong with me!! I was diagnosed 2-1/2 years ago, I have been to hell and back and I have had 3 hydro's done. The last one was in November and I have been doing really well.If I were you, I wouldn't eat what ever you want....I would stick with the IC diet, just to stay on the straight and narrow. You should try keeping and IC diary. Please keep us posted.

[Katrina]

Need2heal, a hydro cystoscopy is both a diagnostic tool for IC and a treatment. It is often the main diagnostic test used. Most doctors will look for other things before they do this but it is still the main way to get a definate diagnosis.

[karenknispel]

Thanks for all the responses!

The problem is that my cysto w/ hydrodistention came out "normal", so that's why I haven't been diagnosed. But I've done a lot of research and I feel pretty certain that my bladder is the problem and that my symptoms are typical of mild IC. I'm taking Detrol LA right now but I've only been on it a few days. I tried Ditropan for a week before and didn't like it because it made it harder for me to pee. I am nervous about taking the PST but I feel like I should do whatever it takes to figure out what's wrong with me. My ex-urologist refused to do it, saying that the test was "outdated"--this coming from someone who still does urethral stretching! I am going to a new doctor on Thursday, and have an appt. with a different one next week, just in case!

[IC SARAH-CPP]

From what I understand from my uro and my research, an Icers bladder is usually different from other bladders in a way that it wouldnt just change or go away over time. I mean that the uro told me that an Icers bladder is usually small because of scar tissue building up and the bladder contracting(??), so I would think that your bladder would still show signs of IC, even if you were in remission. Again, I am of course not a doctor, so I am not sure, but I think.
I would not rule out IC yet. I know some ICers dont have signs during the hydro, so you could still have it. If the potassium test comes back negative, then I might think you didnt have it, but you havent had that done yet.
Good luck and keep us posted.
Love Sarah