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The Potassium Sensitivity Test

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  • bob04951
    replied
    Re: I am not impressed.

    OMG, Ellyn, wish I had seen this sooner, but do not frequent as much. I feel so bad you had to go thru this barbaric test. They are not supposed to be done in the US anymore, period, per AUA guidelines, but know you are in Canada, the land of the free but 19th century medicine practices. What a shame.

    The rescue is simply saline solution which flushes out the potassium. And yes, if you had a painful reaction, you most likely have IC. A normal bladder would not be able to tell the difference at all. You were treated very, very poorly, and really have no recourse, assume you are a US citizen living there for your job? But even Canadian nationals rarely go after their doctors as they get free care, so they don't want to rock the boat. And courts usually won't even hear a case unless it is very, very severe. Yours would not count, certainly.

    Wish I had seen this sooner...You probably could have flushed out your bladder yourself with a sterile douche bag and gotten sterile saline solution from a pharmacy, it certainly would not have hurt, as long as you made sure everything was sterile. I CANNOT believe they did not give you the rescue, it's LOUSY SALT WATER for god's sake!!! Cruel and unusual punishment. Would print out the AUA guidelines before your next appointment and shove it in their faces, and shoe them how far behind they are. I hear this from my British friends as well, they ignore the US standards for treatment, but maybe if more people put these guidelines in their hot little hands, this would eventually go away. Disgusting they did this to you, and having that potassium in your bladder for so long probably did a lot of damage, like battery acid on a paper cut. Make sure you have it all documented, and get copies of your records so when you do come back to the US, you have it all on paper. It will probably magically disappear if you don't.

    But remember, you can flush yourself out, just make sure everything is very, very sterile, wear gloves, keep everything super clean. I'm sorry, this whole thing is making me nauseous, I can't believe they did this to you!!! I am not a medical professional, but my hub went thru this in the US!!! He did get a rescue after, but not enough, he was in horrible pain for days after as well. A very old doc whom we trusted, figuring he had more experience, when all the while he was not up on current procedures. He even did a cystoscope right in his office and I sat there and saw hub's hamburger bladder right on the big screen. He had not yet given us the IC diagnosis, but did after that. We had no idea.

    If I were you, would try to find another doc. A reaction to potassium is just about a 100% that you have IC, like I said, a healthy bladder would not even feel it. I don't know about your dizziness, no, don't believe the potassium had anything to do with it at all, probably the pain and trauma, and could have caused some bleeding in the bladder as well, which would make you feel weak. A lot of times you can't see the blood, it is microscopic, did you pass some visible debris after? Sure you did? DO NOT let any doctor do any procedure in office to you again, ever. If I were you, would just try to follow the diet, try Elmiron if you want to, but don't hang your hat on it, 6 months minimum before you see if it will help you or not, try to get some pain meds if you need, keep your diet alkaline (you can find all the diets and foods online), don't be using any feminine products down there, even scented soaps. Keep a voiding diary with your symptoms included on a daily basis so you can show it to any other docs you may see. Truthfully, I wouldn't let these people touch me again, and try to treat myself, but that is not realistic, and you do need medical care. A urologist is really not necessary at this point, but a good nurse practitioner or internist would be your best bet, just make some calls and see if you can find one who at least KNOWS what IC is, and has other patients, a uro is not necessary. If the NP or FNP thinks you need a uro, they will send you to one, and probably get you an appt. a lot faster. I feel so bad for you, and sorry I did not see your post sooner. I hope you have gotten some relief by now, feel so bad for you! No one wants to put down the medical profession, especially when you are getting free care, but for goodness sake, that is not an excuse for them to be lax and uncaring. Have heard this story over and over and over again, from Canada and the UK, it's really a shame, and can only hope the US does not follow suit with health care.

    But again, you have to be proactive, do your research, print things out and take them with you to any appt., watch the diet, look at Quercetin with Bromelain (a natural supplement which is very safe and subject of a lot of studies for IC, please read up on it, just make sure it does NOT have Vitamin C included) and also D-Manoose which some are getting relief with. There are few side effects, but you will have to judge for yourself and make sure you read all of it!!! It has helped my hub a LOT (Quercetin) and he is pretty much without pain in between pees now, where it used to be constant. Also medical marijuana has helped him tremendously, to where he has been able to cut back on his pain meds, but know Canada and especially Quebec is very touchy on that, but keep an eye on it, you don't have to smoke it, you can eat it or even apply it to your tummy bladder area and get relief, so keep fighting for that up there. Tums and other otc antacids can sometimes give you some relief, you have to get alkaline.

    I am really so sorry you have been thru this horrible experience, and hope you find some answers...just remember to try to actually treat yourself in a way, do your research and see what the US is doing, look and print those AUA guidelines and show them how far behind they are. I have no solutions to your continued problems, other than to get a second opinion if you can, maybe from just a nurse practitioner who seem, at least here, to be more knowledgeable than the MDs and uros, and more empathetic. They are hungrier for patients I guess. But try to follow the tips I gave you, remember I am not a medical professional, but have been dealing with this disease with my hub for almost 10 years now, and have been thru it all, every treatment out there. But you were treated barbarically, please try to find another health care professional and get second thoughts and maybe try to save your injured bladder. Again, potassium on an IC bladder, without the rescue, is like battery acid. I am so sorry for your suffering, it was really unnecessary. Who knows what further damage was done? But seems like you have not been thru all treatments available, will be happy to talk to you about them privately, without recommending anything of course, I am not a doctor, but will give you a list of things to ask about. Wish you well, wish you relief, it can get better, do take care of yourself.

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  • tiffferoni
    replied
    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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  • Ellyn
    replied
    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.!!!

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  • April Marie
    replied
    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.

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  • tiffferoni
    replied
    My doctor didn't even tell me about this test!

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  • maryla
    replied
    I have to agree, those are barbaric!!!!!! Those uros have to be sadistic!!

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  • nekura
    replied
    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.

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  • Sasapippi
    replied
    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.

    Leave a comment:


  • bob04951
    replied
    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...

    Leave a comment:


  • statesboro
    replied
    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!

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  • squirrel
    replied
    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

    Leave a comment:


  • astone0611
    replied
    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

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  • VickiB
    replied
    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

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  • ICNDonna
    replied
    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

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  • Annie2
    replied
    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.

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