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I THINK they diagnosed me with IC..?

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  • I THINK they diagnosed me with IC..?

    Today I had my cystoscopy under anesthesia, done at the surgery center at my clinic. It still does hurt when I go to the bathroom, but at least this time there was no danger of my fainting from the procedure

    however I'm not 100% sure what the diagnosis was...

    as I was coming out of anesthesia, and definitely wasn't what anyone would call "alert," some doctor or nurse said they did find Interstitial Cystitis in me. they also gave me these three images, and from what my Google research has told me, these would indicate IC?



    but those are the only clues I have to a positive diagnosis. I was sure they would give me some kind of discharge paper that said this is what we did today, this was your diagnosis, these are your post-op instructions, you know the deal but I didn't get anything other than the what-to-expect-post-cystoscopy paper they showed me before the procedure.

    then, I asked the nurse who was monitoring my waking up process if she knew anything about treatment? or if the doctor would prescribe a medication for this? and she checked, nope. didn't prescribe any medication. my only instructions: follow-up with my urologist in two weeks.

    is that normal? I mean, these non-UTI UTI's have been giving me agony for a couple months now! if I was diagnosed with IC, it would have been one of the first procedures I've had that was really informative. I have severe IBS and they have done colonoscopies, sigmoidoscopies, endoscopies, trying to find SOME reason why I have diarrhea 10-20 times a day and they always come up empty. but this looks like they actually found a reason for my symptoms! but I kind of expected they would want to start treating the problem.....instead, I guess I have to deal with it for another two weeks until I see the urologist.

    anyway, wanted to check with the smart people here if these pictures would in fact indicate IC.
    Last edited by pebble; 07-07-2011, 05:21 PM. Reason: there are the pictures slightly bigger :)

  • #2
    It looks like IC to me but I'm not a doctor, if I were you I'd call them today and ask the nurse to please explain everything again.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      i don't know about diagnoses, but if they said it was ic it probably is.

      it is not uncomman for no treatment to be given at time of test, he will want to talk to you when you are with it, and discuss treatment options best suited to you.

      if you are only waiting 2 weeks to see the uro again that is not too long.

      if you are not on the diet yet you can start it.

      good luck mg
      My are with you all. May you all find a way to peace and joy in your lives.

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      • #4
        Originally posted by Mothergoose View Post
        i don't know about diagnoses, but if they said it was ic it probably is.

        it is not uncomman for no treatment to be given at time of test, he will want to talk to you when you are with it, and discuss treatment options best suited to you.

        if you are only waiting 2 weeks to see the uro again that is not too long.

        if you are not on the diet yet you can start it.

        good luck mg
        right thank you! I was inclined to think that if they said IC, it probably was, but the only time IC was ever mentioned after the procedure, I was just BARELY even alert...I can't say for sure if I heard anything correctly!

        but it is good to know that the no-treatment-yet and wait time is OK. I've been sticking with blueberries, in lieu of my other favorite fruits, I will see if this helps a bit

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        • #5
          Originally posted by greeneyes View Post
          It looks like IC to me but I'm not a doctor, if I were you I'd call them today and ask the nurse to please explain everything again.
          the good news is I'm seeing my PCP on Monday, and she may have some answers for me as well. though I believe she knows a little less about urology issues than she does about my GI/pain/fatigue problems.. I'll bring those pictures with me and ask what she makes of them!

          from what I have read, the prescription medication is Elmiron... I wonder if she will want to prescribe it, or wait until I see the urologist. I should read more about the side effects of it in the meantime. *doing my homework*

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          • #6
            The best thing you can do for now is to print out the IC diet from here, start following as best you can, it does take time to get how to do this diet.

            What I have found it can really help, but you need to cut out everything which may cause bladder problems, if you continue to eat even one thing which bothers it, it will still cause you problems.

            You need to cut everything and then in time like after a few month if your bladder has improved you can try adding some foods in from the try list.

            It is hard you figure you have cut everything out and it must not be working for you, then you realize that you are still consuming something that never occurred to you that it might be a problem.

            You have to read labels, make most things from scratch.

            The hard part about the diet at first it is an all or nothing, but if you start now you may see some improvement in 2 weeks by the time you see the uro again.

            Elmiron is not necessarily used as a first line medication, but every Dr. is different. Also remember when you are reading side effects of it, it is small % that get each side effect. For example I was really afraid to try it because I get migraines all the time and I read headaches can be a side effect, I just could not bare the idea of taking something that would cause headaches, I have tried so hard to get rid of the ones I have. My Uro said it is less then 5% of the people who get the headaches, lots of people are afraid of the hair loss, I don't know the % on this but I am sure it will be ow too, although if you ask here, you will find people with this side effect.

            Everyone id different so don't let the possible side effects scare you off. the people it works for it works really well.

            All meds have side effects even the natural ones, not everyone will get all or any of the side effects, of any medication.

            I hope you GP has some answers for you, I know the waiting is hard.

            I think the Dr's should write down their findings or go tell a family member, when you are out of it it is really hard to remember.

            Good Luck MG
            My are with you all. May you all find a way to peace and joy in your lives.

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