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  • #1

    Diagnosis

    Hi My name is LIz and i finally got diagnosis with IC after a terrible, long and frustateing time, I notice this problem after i was in a car accident, at first i thought it was a bladder infection and have been seeing doctors ever since that, They waited so long to do any test because one of the Doctors i was seen though it was all in my head!!! and it will go away soon, I have no clue about IC? I have Chronic Pain and Fibromialya (spelling) and my pain is terrible! any help would be great! I'm in CA and have seen Dr. Pain in stanford.
    This is alot to handle and would be great to talk to some people that pee 40 times a day like me?

    Thanks Liz
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    • #2
      HI! Welcome to our great site! I'm glad you got a diagnosis, finally! But sorry it had to be IC.
      Have you tried the IC diet? It's a great place to start. Find out what foods/ and other things that cause you to flare.
      Did your dr. start you on any IC meds? There's lots out there to try. Check around on this site and read up on things that's helped others. I hope you find the right combination for you! PM me if you want.....I'm here often! lol Take care and best wishes! 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
          I forgot to mention.....lots of us started out peeing 40 times a day! lol Have you tried Azo or one of the other OTC meds for frequency? OR you can ask your dr. about Elavil, it's a prescription but really helps calm the bladder down. 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

            • #4
              to the IC Network. You are fortunate to be seeing Dr. Payne. He is very well known in the IC community.

              Sending healing thoughts,
              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
                  Hello and

                  You came to the right place for great help and advice
                  We are not doctors but have lots of great tips and advice from our own personal experiences..The best way I have found to learn about IC is to ask lots of questions..So start asking away..Also I am givng you a link for the ICN PATIENT HANDBOOK...It has a lot of great information in it.. Good luck!

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


                  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

                    • #6
                      Welcome
                      I've learned much about this illness reading and asking questions. I found this site when I first heard the doctors talking I.C., and I hoped my daughter would not be a member of this special place. But she is and I'm so glad she found this supportive group.

                        Comment

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