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The Potassium Sensitivity Test

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  • #16
    I am not impressed.

    Originally posted by happymom View Post
    I would advise carefully researching this test before haivng it done. When I had the PST, it was adminstered after a bladder distention and hydroscopy. The word test sounded so harmless that I didn't research it. One day I walked into the doctors office with minor bladder problems and left with excrutiating pain. I had to quit my job and have been on narcotic pain killers ever since! For some people, this test causes no problems and they go on to live regular lives. If I could do it again, I would have choosen a less invasive method to diagonse IC.
    Originally posted by aritchie88 View Post
    I agree that this particular test is a bad idea. I was given the test by my Gyno and she assessed from my sudden and intense bladder pain that I had a moderate case of IC. I have never had bladder pain before this, but after, I was in severe pain for two straight months. Meds nor diet did anything to help. I went to a Urologist who has determined that I do not have IC, rather the test put my bladder in a cronic state of inflamation. The teat gave a false positive for IC, when really I had some reaction to the potassium that my Uro had never seen before to this extent. I am now undergoing two "bladder coctails" a week to clear up the inflamation and I had instant releif after the first treatment. My Uro would not have given me the test based on my symptoms and not sure why the Gyno did. I would suggest that if a Gyno thinks you might have IC, go to a Uro for conformation, and do your reasearch.
    I am new to this network; I only joined because I read your posts. I have a fabulous OB/GYN/gynourologist, he has worked as my GYN actually for 5 years, he performed my hysterectomy 2 years ago, we have a very good working relationship, and trusting. When I started having problems again we of course started taking action on my ovaries, however nothing seemed to be working. I was diagnosed with endometriosis in 2003, but it was actually never found, and it was not on my pathology report from my hysterectomy either. This lead my doctor to believe that I have IC, on March 30th I went in for a follow up. I was asked if I ever had a check on my bladder, I told him no. He explained to me that IC has many of the same symptoms as endometriosis and that it is frequently misdiagnosed. At this point it is check my bladder, or remove my ovaries (which I do not want to do) He told me about the PST test, I told him “ok, let’s do it!” I want to make sure we do everything in our power, and check everything before we go to the extreme of taking my ovaries. The water was fine; once he installed the second solution (the potassium), I started feeling the urgency to urinate, so badly that I literally thought I was going to have an accident right there on my doctor or his nurse! However, it did not burn, not yet. They let me get up and go to the restroom, in there that is when it started to burn, and bleed. When I got back in the room, I could not sit down it hurt so bad, but at that time I did not think anything unusual was going on, it was supposed to hurt right? I spent the next 24 hours going to the restroom every 10 minutes, I practically lived on the toilet, I ended up getting bruises on my legs because all I could do is sit there, in pain and tears! I could not go to work, I couldn’t sleep, I didn’t eat, I could do nothing but go to the bathroom, and cry, and bleed. I called my doctor’s office the next night and explained to them the situation the nurse said that they could test me for a bladder infection and do a “rescue treatment” if I did not have an infection, to come in first thing in the morning. I went in the nurse could not get the catheter in to do the rescue treatment because I was so inflamed. When my doctor came in he was appalled, he said that it seemed as if I had some sort of reaction to the potassium and that I had burns and lacerations not only internally on my bladder, but externally as well. I was put on five different medications and lidocaine for the external burns and told to come back the following afternoon to check me before the weekend, they did not do the rescue treatment at that time. Friday afternoon I went in I did was worse not better, he did the rescue treatment, however there was no success in that treatment. Monday I had surgery a cystoscopy my doctor also called in an urologist to assist. (Now I have two doctors on the case with a combined 50 years of experience, neither of which have ever seen or heard of this) This was supposed to be a day surgery; I ended up in the hospital for 5 days after my procedure. They installed a catheter and it is still in, it has been 4 weeks, and I feel like I am dying (it’s just the pain I know I’m not). They tried to take it out last Thursday; however, the pain was still unbearable, they had to put it back in on Friday, at that time they tried to do another rescue treatment, but my bladder rejected it. I still cannot work, or do anything with my family, how do you live like this? I am 27 years old and I have IC, I have 3 children, and I am stuck in bed for most of my life, I can do next to nothing. I am on narcotic pain relievers, but they only help very little, I think I am becoming immune to them. I cannot sleep (this week he put me on Ambien to force me to sleep), and I hardly eat. What do I do?
    Blessings, Faith

    Current Medications: Elmiron, Vesicare, Pyridium, Elavil, Darvocet, Ultracet, Ambien, Topamax, LoSeasonique (continuious use), Zomig, Flexeril, Reglan, Vaginal Valium, Lidocaine and Prelief

    I survive daily IC, Vulvodynia, Fibromyalgia, Migraines, Barlow's Syndrome, Adenomyosis, Diabetes and the occational Ovarian Cyst that loves to pop up and help everything else out.

    This is my story: http://www.ic-network.com/forum/blog.php?b=201

    Comment


    • #17
      We always have to be mindful that we are all different. There are so many negative comments here and I just want to pipe in and say I am one for whom the Potassium Sensitivity Test was absolutely the right way to go and I had no problems with it. I know it isn't right for everyone, but it isn't totally vile either. For me, a hydrodistention was far too invasive and had much greater risk than the PST.

      One of the key problems with this test is getting medical professionals to administer the test properly. Unfortunately, not all medical professionals are properly trained in administering this test. Once the potassium chloride solution has been instilled, the second the patient reacts to the solution it needs to be drained by catheter from the bladder and then IMMEDIATELY following draining a rescue solution needs to be instilled into the bladder to stop the KCL reaction and soothe the irritated tissue. This rescue solution should then be held in the bladder for a period of time sufficient for it to do it's intended job.

      Allowing the KCL solution to remain in the bladder for any length of time or having the patient void the KCL solution (dangerous because the bladder may not completely drain the solution and voiding also allows KCL to come in contact with the urethral tissue and external genitalia) is not proper technique and can cause harm to the patient. If the patient is asked to void normally to drain the KCL solution, then the patient must be catheterized again for a rescue solution to be instilled. Instillation of a rescue solution immediately after the test is absolutely and unequivocally mandatory.

      Unfortunately, there are always some who will have extreme reactions to this test and their experience with it then will understandably be negative. But the same can be said for cystoscopy with hydrodistention. Neither test is anywhere near 100% accurate. It really does point out the desperate need for the development of a non-invasive and accurate urine test. Let's all hope and pray this will be available soon and this great debate will be a thing of the past.
      Annie

      IC
      Ulcerative Colitis and IBS
      Pelvic Floor Dysfunction

      _________________________________________________________
      Retirement is great! Work is highly overrated!!!
      ---My dear hubby

      ________________________________________________________
      Never go to a doctor whose office plants are dead.
      ---Unknown

      Comment


      • #18
        Annie is correct! The catheter should not be removed until the potassium solution has been drained and an analgesic instilled. The potassium should not be left in the bladder to be urinated out through the urethra.Donna
        Stay safe


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        [3MG]

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        Comment


        • #19
          I was thinking along the same lines as Annie, it didn't sound right to me that you were allowed to void the potassium, and no follow-up of a bladder rescue solution was mentioned. At the same time, I didn't say anything for not wanting to criticize a doctor's methods. I know a long time ago I had a horrible experience at the hands of a uro and I came away thinking the procedure was absolutely barbaric. In hindsight, I now believe it was the doctor who was barbaric in the application of the procedure, and he really should've known better!

          I am one for whom the Potassium Sensitivity Test was absolutely the right way to go and I had no problems with it. I know it isn't right for everyone, but it isn't totally vile either. For me, a hydrodistention was far too invasive and had much greater risk than the PST.
          This is exactly how I feel as well. The PST was the right diagnostic tool for me.

          Vicki
          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

          Comment


          • #20
            I'm really greatful towards my urologist for doing the PST. He did say I might still have to do a cystoscopy if there was blood in my urine come my next visit. Luckily...no blood...no cystoscopy :woohoo: I could barely handle the pediatric cather they used for the PST...so I was making myself sick with painful flares from stress of possibly having to do the cystoscopy. I'm also happy that the meds I'm taking now is actually helping...I don't think I would be able to make it through any instills
            ~Ashley
            Diagnosed with IC, IBS-D, & Bulging disk on L5
            Possible PFD, CFS, Fibromyalgia, VV, & Arthritis
            Currently taking:
            -Quercetin (twice a day)
            -D-Mannose (daily)
            -Calcium supplements (daily)
            -Cystex (as needed)
            -Lysene [mouth ulcers - genetic] (as needed)
            No longer taking:
            -CystaQ (too expensive)
            -Cystoprotek (flares worsened)
            -NuvaRing (irritated my womanly walls)
            -Lexapro (didn't work for me)
            -Effexor 37.5mg
            -Rescue Instills: 8ml Heparin, 8ml Lidocaine, 3ml Sodium Bicarbonate
            -Xanax
            -Uribel
            -Desert Harvest Aloe Vera Personal Gele

            Comment


            • #21
              Originally posted by maryla View Post
              At least with a hydro you are asleep and they tend to help with pain.
              Unfortunately I have to disagree...
              Hydrodistension brought my IC to a whole new level of pain and urgency...my bladder felt like you were slicing it uo with a knife, using a spoon to scratch out the whole mucous lining, pouring acid on it afterwards and pulsing the whole time for more than 8 weeks...I had hydro done 5 years ago and my bladder has never been worse...
              I know a lot of other IC patients who had quite similar results...People used to think that hydrodistension was "part of IC therapy", but that's definetely not the case for a lot of patients

              Comment


              • #22
                I do realize the original thread was started last year. OK. I did not read every single post, but I do want to state something now. It has to do with what I was reading in the ICA Update recently. Yep! AUA IC Guidelines at a Glance Maybe some more of you have read it all by now. It states that cystoscopy and urodynamics shouldn't be routine. OK. It also states the potassium sensitivity test should not be used. Yep! It also states that if you don't have signs of others things going on, a diagnoses can be made based on symptoms, physical examination, and lab tests. OK. I read, too, that if a man's condition fits the same criteria that he can be assumed to have IC. OK. That was what was presented at the 2010 meeting. Yep!

                Comment


                • #23
                  Pst

                  My husband had the PST done in doctor's office after prostate surgery did not fix his problems of urgency and some pain. The doctor did a quick scope of his bladder in office which was painful but only took a second. To confirm IC, he did the PST and immediately had to withdraw it as my husband went through the roof, and gave him a rescue instill, which immediately took away the pain. However, his IC has gotten progressively worse since that time. Makes me wonder...

                  Comment


                  • #24
                    Hi All,

                    I had a cystoscopy and PST done earlier this week. I was actually amazed that the cystoscopy was pretty painless- maybe I just have a good doctor but they first put in some numbing gel so that probably helped too. The PST was very painful and I started crying but the Dr. drained my bladder and then put in a rescue solution. I do have to say I felt pretty bad for the rest of the day but by morning most of the pain had gone away. I'm glad I was able to be diagnosed this way as I am scared to death of being put under general anesthesia.

                    Comment


                    • #25
                      I for one would only let a scope go in me if I was under GA regardless of hydro or not.

                      These other methods are just brutal and barbaric.
                      • 27 year old student
                      • Had symptoms since I was 5
                      • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                      • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                      • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                      • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                      Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                      What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                      What didn't work: Elavil, vistaril (12/22)

                      Comment


                      • #26
                        I have to agree, those are barbaric!!!!!! Those uros have to be sadistic!!
                        MARY


                        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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                        • #27
                          My doctor didn't even tell me about this test!

                          Comment


                          • #28
                            Re: I am not impressed.

                            I am in the same exact position. Are you any better? That PST test has burned me from the insides. I am going to see a urologist tomorrow? The urogyno is absolutely barbaric and I am afraid there is no hope for me. I feel like I am in hell. I can't see the date this was written. Have you had a successful plan of treatment yet? I hope so! I am a mother of three also, 34 years old and al depressed beyond belief. I also can't eat.

                            Comment


                            • #29
                              Re: I am not impressed.

                              I realize this is an old thread but hoping someone might be listening still.

                              I just had a potassium test done yesterday....and I know, I know,...it's not a standard test anymore...but some of us don't live in the U.S.. I live in Quebec which is the most backward place i've ever lived.

                              They didn't even put the whole bag in and it was painful. NOt excrutiating but enough to make me say enough. I left the hospital, walked to the bus a few blocks away and had to go into a cafe and sit down because I was so DIZZY! I thought I would fall over, it was very scary.

                              They dont give a rescue solution either. THe nurse did the test and said they didn't do that. And I had to pee out the potassium.

                              I had pain in my bladder last night, sharp stabbing pains. Still a little lightheaded today but not sure if thats from the lack of sleep or the potassium or what.

                              Called my Uro today. He's not in until Thurs. The nurse was consulting with the other uro on staff who said my dizziness had nothing to do with the potassium test. Then said, I"m probably dizzy today because my potassium is too low. Keep in mind that I speak English and they French and the nurse was translating. Maddening.

                              I'm completely livid over the incompetency of drs here. But thats another story.

                              I was reading that both high and low levels of potassium can cause dizziness. So it seems that the potassium from the test got into my blood stream and caused dizziness. I don't know how the Uro thinks that this is an unrelated event. I swear, these drs get their medical degrees from a crack jack box.

                              My bladder isn't too severe today and the dizziness is better. I called because I wanted my uro to know this happened. Of course they never warned me of the possible side effects, and now wont' even take responsibility for it.

                              I just want to know why and if there is anything I should do. And if this is an indication that I do have IC because of the sensitivity.

                              Of course I cant get a follow up with the uro until the end of Jan. Great.

                              God, please find me a job back in the good ol U.S. of A.!!!

                              Comment


                              • #30
                                Re: I am not impressed.

                                Hello,

                                There are still people out here!! lol...I'm so sorry that you had to endure those side effects. That is really unpleasant and your doctor should have warned you about them. I am no medical professional, but I do have IC. I have not had the potassium test, but from my understanding, the discomfort that you felt is an indication that you have IC. It is my understanding that if the potassium irritates the bladder that is a positive. Like I said before, I have never had this done and I am not a medical professional. I hope you feel better. If I were you, I would try taking the urinary pain relief pills that you can get otc from the pharmacy. They usually help me. Some people think that the baking soda drink helps, but I have never tried that. I also use a heating pad or the Thermacare menstral pads. They usually provide me relief when I am having a lot of pain. Drink plenty of water too as that will help to dilute any potassium and flush your system out. I hope this helps!

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