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  • hhmmm

    so, I posted a long while ago a post similar but not quite like this. It is really starting to bother me that when I asked my URO how bad my IC was He said "average" and when I asked for pictures after the hydro there were none at all, I mean isn't the whole point of a cystoscopy to take pictures? I think I might feel better if I knew what shape my bladder is in instead of guessing. I mean I would def. say my symptoms are not severe or even altering my way of living b/c it was found so soon, but I want to know if he didn't do everything there could have been (i.e. is it severe enough that I should be having instills or whatever else might be better). am I just being too anal and should I just move on or should I bother him with my questions, i haven't talked to him in like 5 months

    P.S. a month after onset of symptoms I was diagnosed, and then started elmiron close to remission after two months or so and doing great up until 7 days ago, when I am having mild discomfort and that constant urge again I think b/c of fiesta chicken soup ( i had been eating some things in moderation too like chinese, spicy, and sauces)...uuuggghhh, I hate the word chronic
    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. http://www.myspace.com/45171133

  • #2
    thanks for the quick reply, yeah I stick pretty close to the IC diet besides the last month or so, I guess I got carried away and forgot that I had IC. and yes I do agree that it was awesome of my uro to catch it so quickly...but he doesn't have the best bedside manner and usually has an overfilled waiting room when I get there. does anyone know if you are diagnosed as mild, moderate, or severe based on symptoms alone if you just have the potassium sensitivity test? I have so many questions still and I just have to find a doctor that will take the time, but Im so scared to find another doctor that won't help me in that department. Its like they don't understand "this is for the rest of my life---chronic" and treat you like it's a UTI...ok Ill stop now , oh and I don't really use the pyridium, I had a script filled back in NOv. 26 and used like two pills but I don't think they every really helped me and then in such a short time I got better so I never really needed them...but I def. have them handy just in case.
    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. http://www.myspace.com/45171133

    Comment


    • #3
      It makes me so angry, hearing about the uncaring doctors!

      Comment


      • #4
        hopefully I will just left back off where I was, like I said I was practically there and then bam, this minor bump in the road...i wish I knew what caused it too, I guess I was being so uncareful that I can't pinpoinit the exact cause. oh well I will just have to assume evereything that was ic friendly that occurred is now going to have to be re-tested....thanks for all your help, it helps
        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. http://www.myspace.com/45171133

        Comment


        • #5
          I would set up and appointment and see if you have an infection. Write your self a list of questions to take with you and write down his answers. If you really are dissatisfied with him, I would look for a new uro.

          Feel better soon.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            I have what my urogynecologist calls "mild IC". I watched the cysto on the monitor and he explained what he was seeing and pointed out different parts of my bladder and the bladder sling (prolapse bladder surgery). I could see that my bladder wall looked like a "blood-shot" eye.

            So from what little I know it seems that the symptoms don't always match the degree of IC.

            I had a lot of bothersome symptoms but the IC I saw in my bladder didn't seem anywhere near as bad as I have seen in other pictures.

            Maybe that is why my treatment is so effective. I have mild IC but my treatments take care of all my bothersome symptoms.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

            Comment


            • #7
              Hearing posts like yours makes me grateful for my urogyno. I saw a uro before this new doctor and he didn't know much about IC and said to find an IC specialist. The uro did the cystoscopy and he didn't take pictures either. He didn't see anything, but that happens with IC. I went to the urogyno and the did the Potassium Sensitivity Test (PST). I got that done and apparently I had a "stong positive response". They really couldn't doubt that I have IC based on symptoms and the PST. They told me that I am severe symptom wise (because my life is turned upside down, I can't function, I was an insomniac for 4 months). Thankfully with meds I can sleep better. It doesn't help me live normally, or even reasonably. Pain isn't the issue, it's frequency/urgency, which leads to tons of pressure as I'm training my bladder.

              Anyways, sometimes I think it helps to share stories. I just wanted you to know that I am considered severe due to symptoms and PST, that my uro didn't take pictures during the cystoscope. I was in so much pain that he wanted to look and get out. He didn't short me in any way, but he couldn't fuss about the pictures when I was laying there bawling.

              I hope you get back to feeling better!

              Originally posted by BAM23 View Post
              thanks for the quick reply, yeah I stick pretty close to the IC diet besides the last month or so, I guess I got carried away and forgot that I had IC. and yes I do agree that it was awesome of my uro to catch it so quickly...but he doesn't have the best bedside manner and usually has an overfilled waiting room when I get there. does anyone know if you are diagnosed as mild, moderate, or severe based on symptoms alone if you just have the potassium sensitivity test? I have so many questions still and I just have to find a doctor that will take the time, but Im so scared to find another doctor that won't help me in that department. Its like they don't understand "this is for the rest of my life---chronic" and treat you like it's a UTI...ok Ill stop now , oh and I don't really use the pyridium, I had a script filled back in NOv. 26 and used like two pills but I don't think they every really helped me and then in such a short time I got better so I never really needed them...but I def. have them handy just in case.
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

              Comment


              • #8
                Originally posted by BAM23 View Post
                . does anyone know if you are diagnosed as mild, moderate, or severe based on symptoms alone if you just have the potassium sensitivity test?
                I was diagnosed with a bothersome symptoms survey and pelvic exam. Last year I was evaluated for possible valut prolapse. It was necessary to have a cysto for the evaluation. It confirmed the diagnosis of mild IC. I had been diagnoses almost 3 years before with the scale of bothersome symptoms.
                Last edited by L. Thomas; 05-13-2007, 10:19 AM.
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment


                • #9
                  The description about the bloodshot eye is a good one. I can never explain to people what IC is.

                  Comment


                  • #10
                    thanks again for all the replies, I don't know why I am so concerned about knowing the decree of "my" IC, but I just feel like knowing this is like some of you guys finally getting a diagnosis. I just don't feel like I know anything about "my" IC, but I know tons about IC in general. I guess if my symptoms are low though I shouldnt' worry about getting thatt info so much.
                    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. http://www.myspace.com/45171133

                    Comment


                    • #11
                      Kcl

                      I would assume KCL is the same as the PST b/c KCl is the abbreviation in chemistry for Potassium (K) Chloride (Cl).
                      Lee Ann
                      Current Rx Meds:
                      Atarax, Ditropan, Elmiron
                      Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                      Hooray for babies!
                      Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                      Didn't work for me:
                      Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                      IC (Mod-Severe) since 1996

                      UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                      My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

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