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Just wanted to share my story with you all

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  • Just wanted to share my story with you all

    Hi you all know me by now, I am 43 years old, I started having utis when I was 18 years old and most of them came back no infection. My pcp refreed me to a urologist, I went and saw my first urologist in the 20's, he did a cystocopy and hydro, I was awake for it , I chose that, alls they said it was chronic cystitis.Ok, never went back to that doctor. Then years later, I got a kidney infection and ended up hosptialized, and saw that dr again, didn't see anything kindey stones or anything wrong. Ok then in 98, start with the chronic utis, and my new pcp sent me to two urolgoists who said I had ic but thought thepain was something more. Ok, got new insurnace and then went back to my old pcp and went to another urologist in norwood, got chronic utis and stones over the summer last year. uro put me on elemrion and atrax. no pain pills. says ic doesn't cause pain. he did a cysto and hydro, said I had ic and small bladder. Ok, went back to him for a few times and said he couldn't do anything more for me, sent me toa pain clinic, they talked about a nerve block, no thankyou. never gone back. I finally found this urologist who is listed under physicans who treat ic and ic patients and is wonderful and compassionate and bleives that ic is painful. He has put me on neurotin 100 mg 3x a day, prosed, impraine, it seems to be working. I do flare and have pain. when I get a uti, my groin area acts up so bad, they give me percocet. I am going for bladder supension on friday. He has been talking about the insterim with me and I said noto that right now, I said let try meds and bladder supesnion and then I will think about the intersim. He said ok. He is willing to try anything and doesn't push anything on you. He has a wonderful pa too. she is nice too

    I have 3 sisters and one brother, 5 nieces and 2 nephews. ages 16-4. I live with my Dad and his girlfriend.

    My ic is back full force and I have good and bad days. I like to post and help other people and get out of myself.

    Like I shared with Lesile on another board, I do have a learning disability and have grown alot from it.

    thankyou for letting me share my story.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie

  • #2
    Hey Deb--

    Thanks for sharing your story!! It is sad that you had a bad uro, but at least you've got one that's willing to listen to you! I hope everything goes ok for you tomorrow, I will be praying for you! You are such a sweetie, always trying to help everyone out. You are a brave IC fighter, and we all love you!

    Hugs,
    Jess grouphug grouphug kissing kissing
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

    Comment


    • #3
      Thanks Jess. IT feels good that someone read my story. I know this board has been very active lately. How are you feeling?
      Hang in there , There is hope.
      There is hope. Prayer works.

      Love, Debbie

      Comment


      • #4
        Thanks for sharing your story, Deb. Good luck tomorrow with the surgery and I am thinking of you today... (I sent you an e-mail, but don't know if I had the correct addy or not.)
        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

        Comment


        • #5
          Thanks for sharing, will be thinking of you tomorrow.
          Jolene kissing
          Jolene

          "Life is what happens when you are making other plans" John Lennon

          IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

          Information for Patients can be found here.
          http://www.ic-network.com/patientlinks.html


          Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




          Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

          "IC Angel 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."

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          • #6
            Hey Deb--

            I'm hanging in there lol. If you need anything, you just holler, ok?

            Hugs,
            Jess
            Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

            Comment


            • #7
              Hi Debbie, hi
              Thanks for sharing your story. Sorry you had to go thru so many doctors before you got dx.I wouldn't wish this horrible,horrible disease on anyone, but I would like for the Dr's that say there is no pain with IC or "it's all in your head" to have the pain of a bad flare for only 2 days ! I bet then they would change their minds about "if" we have pain or how "bad" the pain was. I have to say I have been very fortunate with my doctor,even tho he doesn't know much about it has never doubted that I am in pain.

              I know you have your surgery tomorrow and I hope you don't let the stress get you down, you need to get your rest tonight for tomorrow. I will keep you in my prayers.... grouphug grouphug angel angel angel .....Brea
              Friends are an important part of sharing the burden and worry of each day. Thank you for the gift of your friendship....Brea

              Comment


              • #8
                Thankyou so much for reading my story. It makes feel really good that I shared it and others are reading it.
                Hang in there , There is hope.
                There is hope. Prayer works.

                Love, Debbie

                Comment

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