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Positive Potassium sensitivity test

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  • ICNDonna
    replied
    I was diagnosed by hydrodistention after having a multitude of other tests to rule out other potential problems. Having a definitive diagnosis was very important to me because my father had symptoms nearly identical to mine and he had bladder cancer. When I had my hydrodistention, biopsies were taken. The combination of ruling out other possibilities, pinpoint bleeding, ulcers that became visible with the distention, biopsy results, and continuing symptoms led to my diagnosis. I had an abdominal hysterectomy before developing IC and no endo was there.

    The wonderful thing was that after a fairly short recovery period following the hydro, I was very nearly symptom free for almost two years! Now when my symptoms return, we go for a hydro --- they've been working for me since 1975 and I've had the procedure done forty times now, with the last one 14 months ago.

    Donna

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  • L. Thomas
    replied
    Originally posted by ashesnowball View Post
    My doctor is scheduling me for a Potassium Sensitivity test soon. I've researched this a bit online and found that a lot of doctors, etc find this test to be unnecessary. They say false positives can be given and it can cause extreme amounts of pain. After reading everything, I don't think I want to do it. I have two questions if anyone wants to answer them.
    1. Has anyone had this test and foun it unnecessary, very painful, a good way to diagnose IC?
    2. Has anyone that has IC found out in another way that this test, and if so, how?

    I really don't want to do anything that is considered unnecessary. I was first diagnosed with Endo, and now my doctor thinks its IC, except I never have the urgency that most other people do.

    Thanks in advance for any responses!
    I was diagnosed with symptoms based on answers on two surveys, interivew, and pelvice exam. If you will check my success story I have a portion of an interview with my urogynecologist that talks about this topic. Click on the link in my signature,

    Leave a comment:


  • ads
    replied
    IC & endo

    I have IC and PFD, and according to the doctor is could possibly be due to years of undetected endometriosis. When I made my out of state medical visits to the best of the best, the endo was missed. Unfortunately, I waited for three years of agonizing urgency and pain to do a simple lap. It is one of my greatest regrets. The urogyn who did my lap, said he wished I would have been in his office five years prior. While it didn't help the IC and pelvic pain because it was too late, I am glad it has been removed.

    I think IC is a dangerous diagnosis unless everything else has been ruled out. The IC medical community has been debating for years on the appropriate way to diagnosis IC. (Some have the opinion just because a hydro produces a bleeding bladder with spots, they aren't sure how large numbers of normal women's bladder's look under hydro. That would be a hard clinical trial to get people to sign up for in the control group anyway...) I regret focusing on uros instead of gyn docs too. Endo can be missed by the very best and multiple MRIs, ultrasounds and exams.

    This has been my journey and one of the few regrets, but you mileage may vary... I wish you the very best and hope you just go into remission.

    Best Wishes,
    ads

    Originally posted by ktrn79 View Post
    I'm really not sure how long I've had the IC. Last spring I had terrible periods and pelvic pain and am being treated for endometriosis. In September, I had the first flare where the doctors felt I had a UTI but the culture came back negative. I hae had 5 of these episodes since then. I have always had frequency issues. I thought everyone peed 20+ times a day, to find out that normal is 6 I was shocked. I have a wonderful doctor wants to treatments first before the cysto. I am still pretty sore now. Its wierd but it's the same pain I had when we thought I had endo. Since I didn't have surgery who knows if I do have endo.

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  • Kathy in Canada
    replied
    Potassium Sensitivity Test

    Hi,

    I was diagnosed with IC by the potassium sensitivity test, along with my history and symptoms. On my own I did the PUF test before this. It is a test to predict how likely you are to have a positive potassium sensitivity test (and also used otherwise to see if your symptoms may indicate that you have IC). I had a high score on the PUF test. I was sure that I had IC.

    My potassium sensitivity test was strongly positive. At first water is inserted in your bladder - it didn't bother me. The potassium solution caused immediate fairly severe pain, made my legs start shaking, and I started to cry. But the solution was very quickly drained out and a rescue solution that contained a local anaesthetic among other ingredients was put into my bladder right away. They have the rescue solution right there, ready to use, in case your test is positive. It took away most of the pain. I still felt a bit shakey after and I had some discomfort when sitting. I also had pelvic floor dysfunction for many months before IC was diagnosed with IC, so the discomfort sitting may have been due to that in part. You keep the rescue solution in your bladder for a least an hour. I felt a fair bit better later in the day. I rested up and took something for pain.

    For several weeks after I was diagnosed with IC, I had multiple bladder instillations of lidocaine, emptied out Elmiron capsules (2), sodium bicarbonate and sterile water. The day after the potassium sensitivity test, the lidocaine in the bladder instillation caused me to have much relief of the bladder pain that had been with me for months. So in effect, it was a local anaesthetic challenge test.

    I'm glad that I had the test done - it is an objective test. It was done by a Dr well known in the IC community, who as treated many IC patients. I had every confidence in him.

    As far as my IC goes, I'm doing much better since I started treatment.

    I would much rather have the potassium sensitivity test than a hydrodistenstion in the OR. A general anaesthetic would be needed for that. It also does not always show up IC in patients that have it. I consider it more invasive.

    There is a trend now for some doctors to use less invasive ways to diagnose IC; including questionnaires, local anaesthetics inserted into the bladder to see if they take away the bladder pain, etc.

    There is no one way to diagnose IC. Symptoms, history, ruling out other causes for the pain/urgency/frequency should play a big part in your diagnosis.

    You can have a negative potassium sensitivity test or hydrodistention and still have IC.

    On this IC site look under the site map, physician's resources, continuing education. There are a couple of good articles on diagnosis and management of IC done by groups of drs that treat IC patients. One is "Evolving Issues In The Diagnosis and Management of Interstital Cystitis" dated July, 2005. Another is "Diagnosis and Management of Interstitial Cystitis/Painful Bladder Syndrome" dated August, 2006. I read both of these before I saw an IC specialist. I felt very comfortable being diagnosed with IC the way I was, by the doctor that diagnosed me.

    Take care.

    Kathy

    Leave a comment:


  • humpieumpumkin
    replied


    I am so sorry you have IC too. We are all here to support you! Having a good uro goes a long ways, and you seem very lucky! I hope you get great releif!

    Erika

    Leave a comment:


  • ABliske
    replied
    I got diagnosed with the hydrodistention test. I had to go under anesthsia for it, but I still think that it was better than trying the potassium sensitivity. It took me 1 day to recover.
    My doctor doesn't do the potassium sensitvity because of the false positives. Good luck with getting your diagnosis.

    Leave a comment:


  • ashesnowball
    replied
    Potassium Test

    My doctor is scheduling me for a Potassium Sensitivity test soon. I've researched this a bit online and found that a lot of doctors, etc find this test to be unnecessary. They say false positives can be given and it can cause extreme amounts of pain. After reading everything, I don't think I want to do it. I have two questions if anyone wants to answer them.
    1. Has anyone had this test and foun it unnecessary, very painful, a good way to diagnose IC?
    2. Has anyone that has IC found out in another way that this test, and if so, how?

    I really don't want to do anything that is considered unnecessary. I was first diagnosed with Endo, and now my doctor thinks its IC, except I never have the urgency that most other people do.

    Thanks in advance for any responses!

    Leave a comment:


  • ktrn79
    replied
    I actually haven't had my period in almost a year. I was on the continuous BCP before the Lupron. On the Lupron you don't get any periods either. I actually will have to have my period but not until August.

    Leave a comment:


  • ABliske
    replied
    Oh, that's great news!! I also did continuous bcp for a while. I got breakthrough bleading so I stopped doing it. If it works for you though I'm very happy to hear it!
    Woo hoo ... no periods! Or at least not for 3 months right?

    Leave a comment:


  • ktrn79
    replied
    Well I called my gyno today to tell her about the IC and how the PST caused the pain we thought was endo. She agreed to take me off the the Lupron Depot (yippee) and go back on continuous BCP. I am so happy to stop that med.

    Leave a comment:


  • ktrn79
    replied
    No it doesn't scare me, I've been on it 6 plus months. My apin then was constant. Would double me over. They tried continuous BC first then the Lupron. I actually haven't had that bad of pain since I started the Lupron, plus haven't had a period in along time. I might just be unlucky and have both IC and endo.

    Leave a comment:


  • ABliske
    replied
    Well, that's good that you aren't having side effects. My co-worker and her sister who had that treatment both get mild sezures (sp?) when they menstrate. They space out for a minute or so every now and then and have no idea that it happened. It's pretty weird. I've seen it happen to my co-worker. She gets a blank stare and her head rolls back. They think it was linked to the Lupron. Her sister had her license taken away.
    I don't know how strong a dose they got. I imagine pretty strong. She's had 1 ovary removed and almost had the other taken out too. Her case of endo is pretty severe.
    I don't want to scare you. If the shots are helping you manage your pain that is wonderful. I don't know if it's even a reaction to the Lupron or not. I just think it's good to be informed. I decided not to get treatment for the endo because my pain is pretty constant. So, I think it's more from the ic.

    Leave a comment:


  • ktrn79
    replied
    I am actually on Lupron Depot now. Thats how they decided to treat my endo. I haven't had any side effects with it.

    Leave a comment:


  • ABliske
    replied
    YOU KNOW, not that I think I can know exactly what's wrong with you, but I'd wouldn't be surprised if the IC was causing your bad periods. I got a laparoscopy because my OB thought my pain might be endo. I did have a few spots of it which he scraped off, but it didn't help my pain at all. After going in to the same doctor about every week for the pain, he suggested Hormone therapy. He wanted to give me lupron shots which basically put you into an early menopause for the time you are taking them. I heard from my co-worker that she had REALLY bad side effects from that treatment and she was still dealing with them 10 years later.
    Then, I went to a different OB and got referred to my uro. I think that my periods got worse when I got IC and the endo wasn't my problem.
    It's wonderful that your doctor is treating you without doing the cysto. I hope you get relief from your treatments!!!

    Leave a comment:


  • ktrn79
    replied
    I'm really not sure how long I've had the IC. Last spring I had terrible periods and pelvic pain and am being treated for endometriosis. In September, I had the first flare where the doctors felt I had a UTI but the culture came back negative. I hae had 5 of these episodes since then. I have always had frequency issues. I thought everyone peed 20+ times a day, to find out that normal is 6 I was shocked. I have a wonderful doctor wants to treatments first before the cysto. I am still pretty sore now. Its wierd but it's the same pain I had when we thought I had endo. Since I didn't have surgery who knows if I do have endo.

    Leave a comment:

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