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I am new, but not new to the pain.

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  • #1

    I am new, but not new to the pain.

    I am actually the youngest case of IC my doctor has ever seen.(21) I was diagnosed at nineteen. All my life, I have been having constant bladder infections, and after years of pain, frustration, and antibiotics, nothing got any better. I finally had an ultrasound, after thirteen years of pain and anguish, they found that my bladder was "inflamed." That's when I was told IC, I had no idea what it meant at first. I had a cytoscopy to reaffirm the diagnoses in November of 2005.

    Since then I have tired numerous treatments, and now I am on Detrol, a weekly DMSO cocktail (which I am proud to say I do at home myself), piridium, and elmiron. (I know I butchered the spelling of the drug names, and I am sorry for that.) I am just so glad that there are other people out there who have been going through the exact same thing.

    My biggest problem now is getting the pain under control. Nothing seems to work, and now I am losing control of my "functions" when I have a real bad flare (is that even NORMAL?!) This whole disease is embarrassing, life changing, and it effects all your relationships.

    My quality of life is nothing compared to all the kids my age. I was diagnosed when i was seventeen with RA, and I now need a knee replacement, I just never seem to get my pain under control. Between the two diseases, I can hardly get out of bed, and I am always tired from the pain.

    It could be worse though. I have a wonderful husband, a great apartment, and a family that supports me. I may never have perfect health, but I have one thing that most others will never understand... A deeper appreciation for everything I have, because of how hard I have had to fight for it.
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  • #2
    to the board.
    You seem so wise for someone so young.
    I am sorry you have IC and the other health issues. I do love your outlook on life and the appreciation you have for your family.
    Take care
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

    Comment

    • #3
      You will find a wealth of info within these pages.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        You do seem very wise for your age. I'm sure that will help you deal with all of this.

        I hope you'll run across some of the other twenty-somethings who post here - you are most definitely not alone.
        Kim

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

        *****************************

        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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        • #5
          You are definitely not alone! You mentioned your meds, but are you also doing the IC diet? If not, it could help to find your trigger foods and alleviate some of your pain. You can find info on the diet here on the ICN in the Patient Handbook.

          ~Claudia

          "A heart is not judged by how much you love; but by how much you are loved by others."
          ~ The Wizard of Oz

          "If I ever go looking for my heart's desire again, I won't look any further than my own
          back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy

          Comment

          • #6
            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

            • #7
              You might want to look at a different mix for your instillations. You'll especially want to be sure the solution you are instilling is no more than 25% DMSO. At higher concentrations it can effect muscles.

              I agree that you have a wonderful attitude. I hope that soon you'll find something to help get your pain level under control.

              Sending well wishes,
              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

              • #8
                WOW, what a great attitude you have and for someone being so young!
                Also to the boards. You will find others here around your age as well. Donna is right, diet is important.
                Glad you have a very supportive husband and family, that is one of the best things to have.
                Good luck.

                Comment

                • #9
                  and I am also going to join in with the others and say what a great attitude. Support from our loved ones is a very important thing to have. I am glad that you have it.
                  Sharon

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

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/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.

                  Comment

                  • #10
                    I am so thankful for the kind words that you have all had for me. It means so much to me to know that there are people out there who also live with this day in and day out, and have gone on to have really good lives.

                    I do follow the IC diet as best I can, (but it is so hard sometimes). I found my biggest triggers were the caffeinated and carbonated drinks, (pop and coffee really set me off). I had the pain under control for a long time on the diet alone, but recent stresses in my life have just made everything worse.

                    The best thing I can say is that I have a great urologist who wont rest until we get the right combination of medication and diet. Having a good doctor is the first step to getting better, I believe.

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