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  • #1

    Good news from the medical field

    This is good news to me and im sure you will all feel the same.. I was talking to my GYN and had ask her if she seen the IC article in first magazine she said she did and her and her colleges were all talking about how the word IC is really getting around the medical field, she also said she was amazed at the woman who were being dg with it.. She said just in one week she had 3 patience that she referred to an Uro because they were having IC symptoms.. That just amazes me of how many woman have IC but prob dont know what they have.. I was like that for so many years..But it was refreshing to know that the name IC is being reconized more in the medical field, also she said that most good doctors are aware of the pain it causes, She knew I was in really bad pain today just because my blood pressure was through the roof.. She is not one to give pain meds but she gave me a script without even asking .. I really believe IC is becoming a well known disease..

    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.
    Tags: None
  • #2
    amen to that, god knows we are tired of going to er in pain and them saying we can't find a cause, even tho we are telling them wht it is and we just need pain relief. I still think that every rn and md should be taught that IC is a disease
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment

    • #3
      It would be gtreat for all Dr to come to this conclusion and maybe less IC patients would have to suffer so much.

      Comment

      • #4
        That's so great Ronda. I know that you haven't had any pain meds in the past so I'm so happy for you!
        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

        • #5
          That is awesome news! I am so glad that we arent the only ones talking about it and that Drs and nurses saw it and are discussing it too! We have needed a break like this for a long time! I hope that IC patients and potential IC patients will be helped by this across the nation. Thanks for letting us know! (I desparately needed some good news today!)

          Hugs,
          amy

          Comment

          • #6
            Oh, thank heavens. I hope with all my heart that no one ever has to go through nine years of suffering (being told they're a druggie or crazy) the way I did, ever again. If I hadn't had my daughter, I'm not sure I would have been able to keep going.

            I hope all my relatives and, especially, in-laws see some of those articles!
            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

            • #7
              Carolyn,

              I dont know how you and so many others went through years of doctors thinking it was all in your heads..I know I have always had something wrong with my bladder, but never dealt with doctors, because I just thought I had a small bladder..All of you that are really an inspiration to me..
              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

              • #8
                Gosh that is good news! I was undiagnosised for 20some years. Of all the dr.s I saw in Nebraska, not one had any idea what I was dealing with or the pain I was going through. At least those being diagnosised now with IC will have more resources and better medical care. Thank Goodness! 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
                  That is just great news. I have a family doctor and his staff (which includes nurses and front office)that knows quite a bit about IC- (in fact when I was in his office on Friday I told the front receptionist that I was there for a "possible UTI but maybe for a IC flare" and she actually knew what I was talking about- and not just saying that she did) but yes, I believe that doctors are now beginning to know what it is and that we do actually have pain and its not in our heads like they use to think!

                  Comment

                  • #10
                    I am glad that more and more doctors are getting knowledgable about IC, though I think we a have a looooong road ahead of us still, as there are still sooo many doctors that dont even acknowledge it, and many being urologists, which is the scary thing. My gastroenterologist knows more about IC than some of the urologists even know about it. (and this is their field)Now that is sad.
                    hopefully one day soon things will look up for us IC patients.
                    Jen

                    Comment

                    • #11
                      I know. My friend just went to the doctor, and she knows that I have IC, and she noticed a poster on the wall all about it! She got me all of the pamphlets too, even though I already have them all!

                      Comment

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