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Does this sound like IC to you??

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  • Does this sound like IC to you??

    Hi everyone

    I wanted to get a few opinons on my "IC story"....I wanted to see if you think this is really IC or not..My uro wanted to do a hydro, but I am still recovering from a C-section so I can't do that for another month or more. Anyway, here is my story...

    About 20 weeks into my pregnancy is when it ALL began....The frequency and pain. Now, everyone was saying it was all because of the pregnancy is why I was expereincing agonizing frequency, urgency, and pain after urination (well, I am a month past partum and the symptoms are WORSE than during pregnancy!). I had, and still have, frequency to the point where I feel my bladder all the time. Even after I just use the bathroom...I get up, wash my hands, and this strange feeling is left in my bladder/bladder area where it feels bruised and then the feeling like I need to go to the bathroom comes back IMMEDIATETLY after I just went. I get no break at all!!! I get no relief. Also, sometimes I get this funny feeling in my urethra where it is very sensitive, sometimes spasms, and sometimes feels like a needle was inserted into it. It happens about half the time after I urinate, for no rhyme or reason. Would this whole experience be called a "flare"? It's been THREE months of this! I ALWAYS feel the need to urinate. It never goes away. (Actually, I recall one or two hours during the three months where I felt normal...) I always feel internally bruised in my bladder, and irritated. I also have pain on my pelvic "floor"...All near the vagina and lower-abdominal area. I seriously can't take it anymore. Does this all sound like IC to you? My uro thinks so, and my OB thought so during the pregnancy. I now take Elmiron (for 2 months so far), Ditropan XL (1 week), Cystoprotek, Desert Harvest Freeze Dried Aloe Vera, and I am going to push for Elavil and maybe Prosed/DS when I see my uro tomorrow.

    When I look back before this hell of a flare, I recall days when I thought I had a UTI, but it turned out to be nothing. It seems like they were "mini" flares or something. I can recall them all the way back to a year ago, maybe about 4 or 5 of them. Also, since 2005, I have had SEVERE UTI's with a lot of bleeding...Many of them that kept recurring. I have a feeling that these led to the IC and strange feelings in my urethra. I also have endometriosis, which I am told many patients with endo have IC I had a laparoscopy 3 months before my pregnancy and there is no endometriosis sites on my bladder at all. I thought maybe that was causing the frequency. It still crosses my mind that maybe there is scar tissue there or something from the surgery...I don't know. I was going to ask my gyno to do another laparoscopy to check it out, but he didn't seem to keen on the idea. We just reviewed my pics from my old laparascopy and he said "no endo on the bladder". I saw the pics and it was clean.

    So, in review, my symptoms are: Constant frequency, "bruised" feeling in the bladder and urethra, urethral sensitivity and spasms, and pain. Does this sound like IC? What OTHER conditions can cause these symptoms, if not IC??

    (Sorry this was so long! Thank you for reading!! )
    Diagnosed with IC April 2007
    Stage IV Endometriosis - April 2005

    Current Medications:

    Elmiron - 3x/day 100mg
    Elavil - 50mg at night
    Enablex - 15mg/day
    YAZ - Birth control to stop my period (Period = FLARE!)

    Additional Herbs & Supplements:

    Cystoprotek (6 pills/day)
    MSM/Glucosamine Capsules
    MSM gel (For Urethral Pain)
    Omega 3 Fish Oil
    Indole-3-Carbinol (For the Endometriosis)

    Too many medications for a 25 year old!

    I WILL conquer this disease!

  • #2
    I am really new and have not been officially diagnosed myself, so take this for what it is worth. I have seen my uro twice and just by what I have told him, he believes I have IC. I had frequency, urgency and pain. I now am only going the restroom between 7-10 times a day. Are you having to get up at night? I have only been on meds since March, (Elmiron and Hydroxzine) and I have been on the IC diet and already noticing a difference. I really believe that the IC diet is a huge part. I only drink water. Maybe once a week I will drink a couple sips out of my mom's root beer when we go out to eat. I have heard that Barg's Root Beer on tap is not as bad. I stick to a very bland diet. There are nights that I eat rice and butter for dinner or eggs with mozzarella cheese on top. Are you on the IC diet? It sounds like you possibly could have IC but only your dr can tell you that. I hope you get some relief soon. Please post back and tell us how your uro appointment goes.
    Diagnosed with IC - March 2007
    Diagnosed with vulvodynia - June 2007
    -Lots of prayer
    -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
    -Taking Prelief as needed (stopped because of pregnancy)
    -IC diet


    • #3
      It does sound like interstitial cystitis is a possibility. The Patient Handbook will help you learn more about symptoms and diagnosis. Have you tried the IC diet? It can't hurt and it's possible it would be a huge help for you.

      Warm hugs,
      Stay safe

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      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.

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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


      • #4
        There's nothing worse than feeling horrible and not having a specific diagnosis of SOMETHING. You both need to check with a urologist/urogynocologist and be tested for IC. Searching the internet can really scare the heck out of you - you start to think, THIS could be what I have, or THIS could be it...

        (My IC was confirmed with a hydrodistention, urodynamic study and biopsy years soon as I got the official diagnosis, I could do some real research and start helpful medications.)

        Good luck to you both!

        IC diagnosis 1999
        Meds: Elmiron
        hydroxyzine hcl
        DMSO as needed
        valium as needed
        librax 3x day

        TENS therapy

        Thanks to all on the boards - YOU have helped more than I can say!

        A person's true wealth is the good he or she does in the world.


        • #5
          My doctor last appointment had suggested me to do a hydrodistention, but I had concerns and have been feeling better with medication and asked to do the potassium test. He did not want to do that because he said that it would irritate the bladder and there was no need to do that. I asked him if he believes that I have IC and he said yes. He said later down the road if I decided I wanted to do the hydrodistention that we could schedule an appointment.
          Diagnosed with IC - March 2007
          Diagnosed with vulvodynia - June 2007
          -Lots of prayer
          -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
          -Taking Prelief as needed (stopped because of pregnancy)
          -IC diet