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No Cysto/Potassium for diagnosis?

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  • #1

    No Cysto/Potassium for diagnosis?

    I believe I may have IC (my doctor suggested it, kidney stones, or UTI). If it is UTI the antibiotics sure aren’t working. I’ve been popping Uristat like candy to get rid of the constant urge to pee. From what I’ve been reading, if I do have IC, it would be a very mild case. I rarely ever experience “pain”, just a horrible urge to urinate, some pelvic cramping, and blood about every 6 months (summer and spring).

    The problem is that I am terrified of medical procedures. Especially painful ones. I can’t even allow someone else to comb my hair because I may start crying whenever they hit a big knot; everything about me is extremely sensitive.

    Additionally, my background doesn’t help. I had some traumatic eye surgeries done before I was 10 years old and those experiences have given me a severe phobia of invasive procedures. I have even refused required vaccinations for my college. Needles and blood tests frighten me, but if they MUST be done I know I’d live through them, but I also know that I would absolutely refuse a catheter of any sort stuck into me unless I am dying, especially after reading how potentially painful they could be.

    My question is if doctors are able to diagnose IC from symptoms alone? I’m only 19 so I doubt I’d have a long list of possibilities, and am extremely willing to have simple tests such as cultures or X-rays performed.

    I am tremendously stubborn and motivated to not be tortured by the medical community more than I already have been.
    • 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)
    Tags: None
  • #2
    I'm so sorry that you've had such horrible experiances with the medical community in the past. I would say that personally I wanted to rule our cancer. I know that this may not seem possible for someone who is 19 but when I was in my early 20's I had a mass that was found in my bladder and the uro who saw me really thought it was cancer until it was removed and biopsied(discovered it was endometriosis instead). I would say at the very least you should discuss your concerns with your uro and see what he can do to rule out anything else that could be more serious like cancer but still be the least invasis as possible.

    I will say that some of the test are uncomfortable but I would rather do them and know that I don't have cancer than not have them done at all.
    Christine



    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

    Comment

    • #3
      I agree with Christine.. You really need to get the right dg, so you can treat it.. The constant urge to pee can be a few things.. One an UTI or a Kidney stone and IC causes the same feeling.. You really need to get a doctor to check you out...

      Ronda
      Hugs
      Ronda

      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:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      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.

      Comment

      • #4
        Originally posted by GriffsMommy View Post
        I'm so sorry that you've had such horrible experiances with the medical community in the past. I would say that personally I wanted to rule our cancer. I know that this may not seem possible for someone who is 19 but when I was in my early 20's I had a mass that was found in my bladder and the uro who saw me really thought it was cancer until it was removed and biopsied(discovered it was endometriosis instead). I would say at the very least you should discuss your concerns with your uro and see what he can do to rule out anything else that could be more serious like cancer but still be the least invasis as possible.

        I will say that some of the test are uncomfortable but I would rather do them and know that I don't have cancer than not have them done at all.
        I think that my chances of cancer are so low that it isn't worth the misery. Most these days are so terrified of cancer that they are willing to have horrible things done to their bodies despite unreasonable odds. If I had family history of cancer or were older, then sure I'd get tested as long as they knocked me out.
        • 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

        • #5
          Sorry to hear that you had a bad experiences with procedures before but I agree with the posts above me.

          One of the only ways you will know if you have IC is to have a cysto done. I was dxed w/o the Potassium test. And it's the same with any other problem. You can't treat it until you know what it is.

          When I had my cysto they knocked me out under general anastesia (actually, that's the only way my doctor would do it because at the time I was 14). I don't remeber a thing. They gave me Valium before hand, which made me stoned, and Percocet after for any pain I might have had.

          You should really consider having it done, even if it ends up ruling out things.

          -gabby

          Medical "Issues":
          IC
          GERD
          Tachycardia(resting rate is 125-130 )
          Medicastions:
          Tramadol-as needed (IC)-50mg
          Elmiron 200mg twice a day
          Levsin .125mg 1-2 pills 4 times a day

          Comment

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