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  • Cysto or Potassium test first? any thoughts?

    So I finally got my uro to give me a cysto! Who would have thought I would be happy at the thought of enduring something being shoved up my urethra and my bladder filled uncomfortably with water?? But I am, because maybe, just maybe he will find something and I will finally know why my urethra feels like its has been smeared with Icy Hot everyday. And why it makes me feel like I have to pee as the Icy Hot feeling gets worse.

    However, my obgyn has also suggested that she administer a potassium sensitivity test. she really feels like this is a good tool because often with patients who have mild cases of IC, the cysto turns up nothing. Which I know to be true after reading some of your posts.

    So Should I do the cysto first and see what turns up? Or should I do the Potassium test and see how that turns out?

    If I am sensitive to the Potassium test, maybe it will make it easier for the uro to see the areas in my bladder/urethra that are problematic?

    Any thought??

    Just a side note: I want to say how grateful I am for this website/support group and for all the people who take the time to read and reply to posts. I appreciate the advice, tips, support, and hearing about your exps.Thank you.

  • #2
    An in office cysto is good to rule out other things like bladder cancer but you are right in most cases a uro will not be able to tell that you have IC but doing this test. The PST will indicate if you have inflamation that responds to the potassium. Some dr's feel this is a good test to verify IC and some do not, it all depends what dr you talk to. The PST is def the less invasive of the two.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      Having had all 3 done (in office cysto; out-patient cysto/hydro/biopsy; PST) I would have had the PST done first, if for no other reason, its less invasive.

      Hope you feel better soon!
      D
      (\__/)
      (o.O )
      (> < ) This is Bunny. He's on his way to world domination.

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      • #4
        That is a tuff one. If it were me, I would likely do the cystoscopy( you can ask to be sedated, I was as my first one was very painful). At least with the cystoscopy, you can be assured that you do not have cancer or anything like that. Now I was diagnosed with IC through a regular cystoscopy, so yours may be able to be seen depending on how knowledgable your doc is about IC.
        As far as the potassium test, this is a less invasive test compared to the others, but I personally dont think it is a gold standard in means of a diagnosis. I mean, instilling potassium in anyones bladder could cause pain. I mean even if a person had a basic UTI, if you out potassium in their bladder, they are going to feel it. That is just my opinion though. It has diagnosed some people on here. Good luck with what ever you decide to do.
        Jen

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        • #5
          If the cysto will be done in the doctor's office, it very possibly will not diagnose IC. I know that my bladder appeared to be healthy and normal until it was stretched under anesthesia. At the time I was diagnosed (1975), the potassium sensitivity test wasn't being done to diagnose IC.

          There are advantages to both tests. The potassium sensitivity test doesn't require anesthesia and in many cases does diagnose IC and does not usually cause pain in a healthy bladder. The office cysto will help in ruling out other causes for pain, but will not usually diagnose IC. A cystoscopy with hydrodistention in a hospital, with anesthesia, will usually (but not always) diagnose IC --- and has the added advantage of easing symptoms in many instances.

          The Patient Handbook at http://www.ic-network.com/handbook has information about symptoms and diagnosis.

          I hope you are diagnosed soon. It can be extremely frustrating to not know what's going on in our bodies.

          Warm healing thoughts,
          Donna
          Last edited by ICNDonna; 05-02-2007, 03:59 AM.
          Stay safe


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          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.

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          [3MG]

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          • #6
            cysto ot PST

            Hi,

            My dr did an in-office cysto to rule out things like cancer, Hunner's ulcers from IC, etc. My bladder looked fine. Then he did a PST. I had a very positive reaction to the test. Along with my history and symptoms, I was diagnosed with IC. I'm glad I did things that way. It is much less invasive then a cystoscopy and hydrodistension in the OR. There is no 100% test for IC yet.

            Take care,

            Kathy

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            • #7
              Originally posted by qumar View Post
              However, my obgyn has also suggested that she administer a potassium sensitivity test. she really feels like this is a good tool because often with patients who have mild cases of IC, the cysto turns up nothing. Which I know to be true after reading some of your posts.
              I had my uro do a cystoscope and it showed nothing. He started me on Elmiron and told me to see an IC specialist to make sure he didn't miss anything (but he saw no sign of IC). I saw the specialist who tested for very trace amounts of blood (and found it... after a dozen urine cultures) and then she did a bladder capacity test that I thought I'd die from. Since my urethra is so painful to touch, she did the potassium test on the same day and it burned like hell with barely anything put in. She said that was a very strong positive for IC and she dosen't really doubt the diagnosis. I was put on some meds (continue with Elmiron, Atarax which has helped tremendously as well as the Ultram). I have bladder instillations. I went from waiting, doctor hopping, normal test after normal test... then I see this IC specialist and get a conclusive test, diagnosis, and treatment (and I have noticed an improvement already... not perfect... but down from >30 times a day to 15'ish... over 40 times/day was my absolute worst though).

              I hope this helped! I would say get both done and hope they tell you something!
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

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