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  • Newly diagnosed

    O.K. here goes. I have alot of questions so please bear with me, I'm a bit overwhelmed and in a bit of denial whether I really have I.C.

    I had the potassium challenge test 4 days ago and had a positive reaction to the solution. I'm wondering if people have a positive test but don't have I.C.
    After reading so many cases I realize I have mild to moderate symptoms. I have urgency and frequency along with pressure, I also just recently have alot of vulva discomfort. After the potassium challenge I am very uncomfortable and keep wondering if the test gave me a bladder infection or did it just irritate my bladder, feeling worse then I've ever felt.

    Does I.C. progress? I feel so bad when I read other postings because people have such horrible cases. I'm wondering like I said if I even have I.C., I don't want to treat something I don't have. Does anybody out there have the same type of symptoms. I know I should try the diet but it overwhelms me and I don't know where to begin. One of my main questions is; has anyone had the potassium challenge test and how did it affect you after. Thank you in advance for any help with my questions.


  • #2
    H have not had a potassium test, but hopefully I can answer part of your questions. My IC did all of its progression during the months before I was diagnosed. At the time I was diagnosed (1975!)wasn't much thought given to a possible diet connection --- I learned on my own that certain foods and drinks are a problem for me. My IC is no worse than it was at diagnosis; in fact I do much better because I have learned about diet and know which treatment options work best for me.

    I really encourage you to give the diet a try. It's well worth the effort.

    Warm welcoming hugs,
    Stay safe

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3

      Donna is right I think think the diet has helped me the most..

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        I agree you should try the diet. For me, doing the diet did nothing to help with my pain. BUt I do have to avoid alot of stuff otherwise the pain is unbearable, so in a sense, I do have to watch my diet big time, just that I had no improvemnet doing the diet I guess.
        Everyone with IC is different because I think it all depends on what is causing the IC which I believe in everyones case is different.
        I could not tolerate any of the meds used to treat IC, but I also have motility issues with the digestive tract and this makes it worse for me, where I cannot tolerat most meds. I do the at home instillations and these help me, though I still deal with pain.
        I have never had the potassium test, so I cant really relate to that. It is possible that it has irritated your bladder. How long ago did you have the test?


        • #5
          Hi, my symptoms sound just like yours did. That was all I had was frequency and urgency, but not pain or any other sensations anywhere. I did have mild pressure, but the freq. and urgency is what threw me for a loop. I didn't have the potassium test either so I can't answer those questions...sorry. Again, the diet has helped me too. Diet pop--no, no, no. I believe it is what sent me into my first actual flare..not saying it was caused by it. Good luck with your journey, you def. came to the right place.
          Onset of symtoms November 1, 2006

          Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

          2008 Update...still in remission

          Diagnosis: IC
          Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

          Myspace: Add me! Im always looking make new IC friends.


          • #6
            If you are prone at all to infection and your symptoms seem to get worse rather than better it probably would be a good idea to get checked for a UTI. Just to rule that out so you don't have to suffer if there's a quick solution.

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


            • #7
              Robby at the beginning when I got IC, it was just frequency and then into urgency, then pain and all the other stuff. No one knew about IC at that time, at least, with the doctors I went to.

              Even though you might think you don't have it bad like others, please don't overlook it, you still need to treat it so you might not get it to the severity. Any IC rather it is in the mild, moderate, or severe case should never be taken likely.

              Getting treatment early is the best thing you can do. Even if all you have to do is to go on a IC diet and watch your acid intake.

              Take care, Trishann


              • #8

                I think you basically just described my problem. I was diagnosed on June 11th. I really didn't have a problem with pains until after I started the bladder instillments. I get them right between my legs on the left side. It is a constant pain, but when I walk it is 10x's worse.The uro gave me urised, which seems to be helping with the urgency, but my pain seems to be bothering me more. I myself am staring to wonder if he was right or if this is in my head?


                • #9
                  I had a negative PST because my bladder felt no pain but the catheter being inserted was horribly painful and it put me into a flare for a good week. So yes I think the PST itself can cause a flare -anytime anyone catheterizes me now I flare. The way I understand it is some people are just too sensitive to do instillations. The diet is overwhelming but just cutting out coffee and carbonation may be enough to give you an idea. I also cut out all artificial sweetners. Start out by just drinking water and milk only and see if you notice any improvement. Then if you want you can try cutting out the foods. Also there are other oral medications you can try if the instills are hurting you too much.
                  The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                  First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                  Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                  Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                  Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                  BABY GIRL 10/28/08 *** BABY BOY 7/8/11


                  • #10
                    I had the Potassium test done in Nov 2006. I had a postitive reaction to it. Right after they drained the solution out though they put a rescue instillation in to calm my bladder down. I really didn't have any problem with it.
                    I personally have always gone to the bathroom a lot, always been made fun of by boyfriends and friends for as long as I can remember. I had also had pelvic pain for quite some time and just thought it was all related to my endo that I also have. My gyn was the one that really put the picture together for me in the first place and then I realized a lot of my pain is from my bladder and not my endo.
                    To answer your question about the Potassium test being positive but not having IC. I see a uro now for my IC and he feels that the Potassium test is flawed because some people who have IC may not respond to the test and some people who don't have IC might respond positively to it. I guess if you have some other kind of inflammation in the bladder you could have a positive result but not actually have IC. There are so many theories on the right way to diagnois it.

                    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


                    • #11
                      I had the KCl test too and that made me more uncomfortable (the urge was much stronger) for the next day or two. I too only have frequency/urgency... but I do have pain with my period.

                      I am new to IC and from what I hear, I am mild in pathology, but severe in relentlessness of symptoms (nothing seems to help my urgency/frequency other than Ultram... and even that doesn't do much).

                      I wouldn't say I am in denial... but I would say I am resisting the diagnosis. I have been doing the diet (ROYALLY SUCKS) and I know coffee/tea/chocolate makes it worse... but the way it is worse is by making my urine more dilute. The larger volume I have in my bladder, the worse I can. I have no capacity and I've been doing the bladder training techniques, but that doesn't really seem to help.
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]