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  • cystoscopy or not?

    I'm in the very early stages of symptoms, just 4 weeks and currently still on antibiotics (which are making little difference).

    Dr has suggested cystoscopy under GA as our next step, which is scaring me to say the least.

    My question is, would you bother to do it knowing what you know now? From what I understand, even if they don't find inflamation etc they can still suggest you have IC if you have the other symptoms...so it's not going to rule that out. And surely there are other tests to rule out things like bladder cancer (I've read of certain blood tests etc). So what is the point?

    It just seems so extreme? Or am I overthinking it.

  • #2
    it is a good way to find out if you have IC or not,however there are a few other tests they can do that i dont think would be as invasive.i had my first cystoscopy 2 weeks ago and am in severe pain since. it may take me a month to heal from it.make your choice wisely.i had one uti in particular that wouldnt clear up so they had to hospitalize me to get rid of it.then i decided to go to a uro to find out why these recurrent utis kept happening.i told him my symptoms some of them match ic and some of them dont so he put me under a cysto in the hospital w/ anesthesia. he came to the conclusion i had IC from that cysto.he never explained to me what he saw and i am in severe pain ever since.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

    Comment


    • #3
      Hi, You will get both sides of this and really it depends on your uro. I'll just give you my uro's perspective. I had the in office cystoscopy which rules out cancer and I don't know what else. It took 10 minutes, my particular experience was not painful and was un-eventful. It would also show obvious ulcers and sores which I didn't have. So where did that leave us? with symptoms. He said he would treat me with instills if I have very much pain, (which I do not). Where does this leave my diagnosis? He said I either have mild IC or OAB, but not sure it matters as treatment starts the same and is the same diet etc. Even on this site mild IC doesn't list pain as a symptom. I'd say I have pressure, discomfort sometime but not pain. My doc thinks going under GA anytime shouldn't be treated so lightly.
      Now, the other side is if you have the cysto/hydro under GA, there will be no doubt. But again, what if they don't see anything? They will still treat you for pain I am assuming if you have pain. Some uro's won't treat without it.
      I guess I would ask him how it might change his treatment plan whether he just does a cystoscopy or a cysto/hydro under GA. So the question is, will he treat you either way based on at least a cysto? I'm assuming he would want to do that no matter what to rule things out.
      The last point I have to make is some people experience quite a bit of pain after it which only makes matters worse. Some people re-bound after a couple of weeks and feel much better....unfortunately its individual.
      I don't think you are overthinking it as it took me years just to go see someone and agree to an in office cysto!
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        thank you Flowerangela and Cindi - it's really helpful to hear your experiences.

        I don't have pain or nocturia. Just very frequent urination and sometimes strong bladder pressure.

        So I'm guessing that the route I would start down is alternative therapies and diet changes (which I'm already doing) to try and control whatever this is. Though my dr seems very keen on dishing out antibiotics so I'm assume he'd prefer the more medical approach!

        It's just the idea that you could go through all of the pain of a cysto (with the water thing)...be told there are no ulcers, bleeding etc...but yes we still say you have IC which seems weird to me and makes me question the reason for doing it (if you can exclude other things in less invasive ways). Also keen to avoid an unnecessary GA if I have to!

        Comment


        • #5
          flowerangela - I meant to say - sorry you are still in so much pain. that's awful

          Comment


          • #6
            You could just have OAB or mild IC, its still unclear to me where one crosses into the other as OAB has no pain, and mild IC has no pain? I have alot of pressure and frequency, sometimes discomfort too.
            The "plain" cystoscopy if you are comfortable doing it at least tells them what you don't have and gives the overall health of the bladder. Now mine didn't hurt and they do put sterile saline in your bladder but not to the point of pain. They just wanted me to let them know when it was really full and when it was they drained it out. So give that a thought.
            Will your doc do mild treatment without it? such as anticholinergenics like vesicare, ditropan, enablex which help with frequency etc.
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              It is very unclear to me too and I know there are a few schools of thought that oversensitive bladder is the same as IC? I have no idea what's right. I see so many different comments on sites and forums. Also drs don't seem to totally agree do they?

              Cindi - you are giving me such helpful advice - thank you. I will ask him why not just the plain cysto - it seems to make more sense with a case as early/mild as mine.

              Comment

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