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Help me not freak out...

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  • Help me not freak out...

    Here's the deal. I've had IC for four years. The first year really sucked...but after that I had been able to get myself into remission for long periods of time with antihistamines and xanax. Around the holidays, I started flaring...I was able to keep it managable but really had to go back to watching my diet closely. I think it was major stress that brought on the flare. I'd had a horrible miscarriage in Sept. and was grieving.

    This past weekend, my IC REALLY flared. I'd not felt like this since my first year. I did a dip test and found that I had nitrates so I think I had a UTI and treated it with a seven day course of antibiotics. I'm also EXHAUSTED!

    BUT, folks, I'm starting to get that panicky, freaked out feeling that this is never going to be managable again. I'm scared. I'm grieving for my remission. I'm ****** off that this all came back.

    Last night DH wanted to 'do the deed' and I completely feel apart. I was a sobbing mess expressing to him my fear that when I can't have sex he'll want to leave me. It's incredibly irrational...dh and I have been together for neary 15 years and we have a very strong marriage.

    Ok....taking deep breaths. I'm calling my uro tomorrow to talk about rescue installations. I've not needed them until now, but I may have to give in. This bites! Thanks for letting me vent.

  • #2
    IC can bring out the worst in us....all the fears and pain can really send us all in a tail spin.....down!!
    Hopefully the flare is just from the uti and once you get it under control you can get back to where you were. I always flare when I have a uti.
    This is a great place to vent......we've all been there. Hope you feel better soon! 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's amazing stuff!!:woohoo:


    • #3
      Just wanted to tell you I hope you feel better soon.


      • #4
        Thanks. I just rechecked my urine using a fresh dip stick and after comparing the before and after colors, the flare was indeed from a UTI. Since my bladder was already tender, and I didn't catch the UTI for a day or so because I thought it was a flare, the after affects are really throwing me for a loop.

        I just took a xanax and pyridium in hopes of starting to break the pain cycle and get some sleep. I'm really exhausted and cranky.

        By the way, DH brought me flowers today.


        • #5
          So sorry that you're feeling so bad Robin. I hope that you start to feel better soon. Try to get some rest, hopefully those meds will kick in soon. Nice that your hubby brought you flowers!

          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


          • #6
            Awwww what a wonderful thing for Hubby to do. Kudos to your guy. The great thing about a UTI is you can get it treated and it gets better. Sending you some gentle (((hugs))) with instructions to get some rest. Hope you are feeling better very soon.

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.

            Link to the ICN Patient Handbook:

            Link to the IC Diet:

            IC 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.


            • #7
              I hope your tomorrow is better.

              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              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:


              Diet list:

              AUA Guidelines:

              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


              • #8
                Roxie- can you tell me more about the MSM gel and where you can get it?



                • #9
                  I know exactly how you feel. I have had IC for ten years now and every time I get a flare I freak out that it will never end, and life as I know it will be awful from now on. My husband always has to remind me (as I am crying and freaking out) that my flares do eventually go away and things will be good again. I have been in remmision for about four months now and just recently I have begun to flare again. I am trying to stay positive and remember that "this too shall pass" and I will eventually feel better. You have to remember that freaking out and stressing about a flare (which is so easy to do) will only make things worse. Good luck, and heres hoping that we both feel better real soon!


                  • #10
                    Thanks. That was just what I needed to hear. I try to tell myself the same thing...that the flares eventually go away. But, as we both know, it's really hard not to be sucked down into the depths!

                    Yes, here's to hoping we both feel better soon!


                    • #11
                      Glad that I could help. I am just finishing a 12 hour night shift as a NICU nurse and I am dying of pain. I had been in such a wonderful remmision before this that it is so depressing to slip into yet another flare. I just keep telling myself that it will eventually be OK. I really hope that this flare doesn't last long (my last one lasted almost two months). Lets both just keep our eyes on the prize and keep telling ourselves that "this too shall pass". Good luck, keep me posted about your progress back into remmision.