No announcement yet.

Thanks, all, for a great forum

  • Filter
  • Time
  • Show
Clear All
new posts

  • Thanks, all, for a great forum

    Hi. I've found this web site to be really helpful in a time of need. It’s a great place.

    I was diagnosed with IC a month ago and it has been really helpful to know what to call this issue I have. I'd gone in to see the urologist because of some bladder issues that flared when my IBS did and a prostate issue. The urologist had the labs from my regular annual physical from the month before and said my prostate PSA level had spiked from baseline and said we needed to do another PSA test.

    During the next visit, the urologist told me the good news that my prostate PSA was normal. So no prostate problems, but... The uro went down a list that addressed every bladder issue I had, even some of my issues I'd forgotten to tell the urologist during my first visit. I was satisfied the uro was dead-on and felt fortunate that I didn't have to go through the long wait for a proper diagnosis that some people do.

    I've since gone in to see this urologist several times and to get help from her physician's assistant. Both are really positive people, want to help and are also at the top of their game. The followup care has been really good and I can tell that they are really into their work. Both of them have been really into talking about IC and pelvic pain or other things relevant. I've even talked to them about research in IC that I've read up on and a couple times they've nodded kind of knowingly, later to admit that they have worked with and gone to meetings with the researcher. I was wondering why some of their protocols seemed familiar.

    I was somewhat skeptical about pelvic floor dysfunction being relevant to me, but the urologist and PA were gently and quietly persistent and I felt they knew what they were talking about. I ended up having a couple big issues re PFD and now completely "get it" how IC can cause pelvic pain and pelvic pain can cause problems with IC. I've since followed-up with physical therapy.

    Funny thing is, I got out of flying for a living years ago, largely because my bladder had less range than the fuel tanks did. Back then, I didn’t think there was much to do about such issues, maybe there wasn't.

    I'm just happy for simple things. I'm sitting here comfortable tonight after the start of a flare-up this morning. I haven't had to use the bathroom for 3 1/2 hours after an instillation at the medical center this afternoon. That is a record for me. Right now, I've never felt better. It doesn't get any better than this - at least for now.

    Thanks again.
    Last edited by LN238; 08-20-2011, 03:35 PM.

  • #2
    to the IC Network family. I'm glad you're feeling good.

    Are you giving the IC diet a try? You'll find the latest food list at the link in my signature below.

    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help:


    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      Thanks for the welcome, Donna.

      Yes, I'm using the Diet List more and more. I'm finding that when I ignore it, I pay for it, as I did yesterday. I'm coming to grips with this being real after being in denial a few times the last month. The pain slaps me in the face and brings me back to reality. First I denied I had a problem, but the frequency and urgency is undeniable. Then I denied the IC diagnosis for this thing, but the pain from flares would remind me this urologist knows her business. Then I denied that I needed to watch what I consume, but the pain and interruptions reminded that I was being very foolish. I'm finding out that many of the things that set off my IBS also set off an IC flare. When that happens, I just rent space in whatever bathroom I'm near.

      I'm converted and throwing stuff out that is not smart to have around and will be using an IC-friendly diet.

      I've found rescue instillations of Heparin, Lidocaine and sodium bicarbonate good for bad times as well as Prelief to be really helpful too.

      Thanks, again.
      Last edited by LN238; 08-20-2011, 05:35 PM.