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  • #1

    question on diagnosis

    I was diagnosed several months ago after suffering for 5 years. My question is my doctor just listened to my symptoms and did a urodynamics test and then told me he thought I had IC and has been treating me for that since. After reading everyone's posts on this site, most of you have had alot of various testing to determine that you have IC. Should I get a certain test done? Everything I have read said there is not any certain test that will diagnose IC for certain.

    Any suggestions would be helpful.
    The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



    Meds:
    IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
    UC: Asacol
    Tags: None
  • #2
    HI! Have the medication the dr. put you on helping you with your symptoms? Some times the tests make symptoms worse.......if the meds are helping....I'd go with what the dr. said....and forget the testing unless you get worse.
    Are you following the IC diet? That helps a lot with the symptoms of IC. Good luck to you! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment

    • #3
      Robin,
      I know how you feel, I had a Potassium Sensitivity Test done and that's how I got my first diagnoises but then when I started reading all of the posts it seemed like a lot of people had done hydro/cysto. Personally I ended up going to a uro because I felt that my gyn diagnoised me but then didn't want to try a lot of different treatment options with me. If the uro would have been willing to go w/ the diagnois from the PST I probably would have been happy with that. In my case my uro wanted to do further tests because I had previously had endo growing through my bladder which he said made me a complex case and he wanted to rule everything else out.
      I really think that all dr's out there have their own therioes on IC because there is so much that they don't know. I also have endo so it drives me crazy because I feel like I have two problems that there is more they don't know than they do. Hope you find relief soon.
      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

      • #4
        I know there are some doctors out there who are willing to diagnose IC based on symptoms. If you're comfortable with that, I say go with it. Are the treatments helping?

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.         [3MG]

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

        Comment

        • #5
          I had a lot of testing done but they still couldn't find anything wrong with me (probably doing the wrong testing??) finally they did a cysto/hydro to dx me back in 1992 - started me on elmiron, DMSO installations. Now though, a lot of doctors based on symptoms alone. If you are comfortable with that, then, go with it, if not find another doctor; medications are working? are you on the diet?

          Comment

          • #6
            I have been following the diet for 2 months and the only change I have seen has been that constant pressure I use to feel is gone. I still have alot of cramping and it can become pretty uncomfortable at times. The meds I take at night help me to sleep w/o peeing all night long. I do have the majority of IC symptoms so I am pretty confident that I have IC. At this time I guess I will not ask for any further testing.

            Another question, I have been on the IC diet as I said for a couple of months but see very little improvement in symptoms. I have found two foods that bother me so far. It is hard to continue on a diet that doesn't seem to help. Does it take awhile to see improvement? Does it do more damage to the bladder by eating the wrong foods? You can probably see where I am going with this-I want to eat-what I want to eat! So I am wondering how much good it really is. What benefit is it if you don't feel a whole lot better?

            Thanks for all your responses, I find nearly all my answers to my questions right here and it so helpful. I am very grateful for this message board.

            Robin
            The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



            Meds:
            IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
            UC: Asacol

            Comment

            • #7
              Robin,
              Personally I found that the diet doesn't help me much either. As long as I have one thing that is usually bad for an IC bladder at a time I seem to be okay. I can get away with eating chocolate but one night I ate chocolate cake w/ peanut butter icing and that did me in. Maybe try one thing that we're not supposed to have and see if it bothers you and go from there.
              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

              • #8
                HI! It's very important to stay on the IC diet. IF you have IC then the mucus lining in your bladder is pretty much gone or thin.....that means all the bad things you eat are going thru that lining and that's what's causing the pain etc.... I know it's not easy staying on the diet....but in the long run I think you'll do better. Once in a while you might be able to eat one thing......but don't do that same food 2 days in a row or that's when the pain intensifies.
                Have you tried testing the meds or vitamins you are taking to see if any of them are causing pain?
                I think you need to find a good IC Urologist......and see what they have to say. I wish you well......Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment

                • #9
                  Sensitivity to diet varies a lot among patients. I think you really only have to avoid the foods that bother you; those are your "trigger" foods.

                  I was diagnosed on symptoms alone; this is acceptable to my insurance company and to Social Security (I'm applying for long-term disability). The fact that you are responding to IC-specific treatments is also diagnostic.

                  I don't think you mentioned what treatments you're getting, but if you're still having a lot of pain and cramping, you should know that there are many, many different medications, supplements, and other treatments like instillations (of which there are also several varieties) that can help. I know I have had to experiment a lot to find the best combination of treatments for me. If you're lucky, your doctor will be willing to work with you to consider your options.

                  Be well.
                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                  Wishing you happiness and good health, and all the best out of life.

                  Peace, Carolyn
                  ___________________________________________________

                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                  On the Beach with IC

                  Comment

                  • #10
                    Thanks for all your responses. I am seeing an uro/gyno Dr right now and he seems to be familar with IC. I am on Elimron, Hydrodzine, have had bladder instills, AZO and prelief, just started today w/freeze dried aloe. I need to realize that it may take a long time to feel better. Some days I get frustrated and wonder what else I can do. I was getting discouraged following the IC diet, not feeling a whole lot better and not dropping one ounce of weight either! If it is going to be called a diet then we should lose weight!!/ Right? I think a better name would be to call it IC Restrictions! LOL

                    Anyway, I will keep hanging in there and thanks for being here for me.

                    Robin
                    The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                    Meds:
                    IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                    UC: Asacol

                    Comment

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