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The Potassium Sensitivity Test

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  • #31
    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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