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A long Road

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  • A long Road

    I have sufferd with IC for many many years, I have spent most of that time fighting Dr.s but as they know I am not one to give up ! I was 27 years old when my symptoms begin I am now 62.
    I dont go to Dr.s anymore I swore no one will
    ever add to my pain going threw unnessary test again. Every dr. wonts to do the same Test and in the end was same ( PAIN with no pain medication.)
    I have had every test made,every medication made & still no help! Back in 82 I had my Bladder Surgery of( Bladder Rebuilt with part of my Intestines) at University of Ala. in Birmingham
    with Dr. who saved my life a Dr. Shirrley. The Surgery helpd for 4 years thank god but that was it.
    My heart gos out to anyone who suffers with this and haveing to convence ( or try to convence Dr.s of it ) or the pain .... make it even worse to live with .
    I like David crawled to the toilet for 7 years in .... PAIN ( the bladder spasems were
    like no pain I can even begin to say)
    My Bladder Dr. told me last year their was nothing more he can do for me ! he would not give me pain pills for he was afraid I I would get hooked on them LOL guess its ok to be hooked on pain.
    I was on DMSO for years also it helped but not alot, it did at first but as time went on it did nothing. I even ask my Primary Dr. to give me something for pain when it got to bad to live with ... but he said I never heard of giving Pain medication for the bladder or going to pain managment for tbe bladder ( this is what I have had to live with ) I cant beleave he said that to me but I have seen many many dr.s over the years they know nothing or little of how this IC can destroy ones life, and they treat you as if your nuts. When one lives in this kind of pain for years I guess one could become nuts haaaaaaaaaaaa !
    My grandmother had this also but they didnt know what it was thin, my Mom, my daughter & granddaughter has it also .
    I pray befor I die their will be something to help with the pain that dr.s will give us and more that that their will be a cure
    or find the cause !

  • #2
    Hi Georgia,
    Welcome to the ICN. You have certainly been through a lot. I am glad you found us. Too bad you can't find a good Dr. to help you with your pain issues. I don't know where you live in Texas but there seems to be a lot of good Dr.s down here. I live in the DFW area and I have heard of several. Hopefully something will help soon. Good Luck to you and welcome to the ICN.


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

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    • #3
      I'm glad you found the IC Network. I suggest you check the physician list here on the IC Network --- you'll find Texas physicians at These are medical professionals who have been recommended by other IC patients.

      You should be able to get a referral to a pain specialist --- if not, then it might be time to change doctors again.

      Sending healing thoughts,
      Stay safe

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      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.

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      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


      • #4
        Welcome, Georgia.

        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


        • #5
          hi Welcome Georgia: It took so long for me to get Drs. to Finally find my pain /pelvic and toilet ... TO DX. me ..told me they couldn't do anything for me and would send me on to another..I am going through different treatments at this time . I was also sent to the UAB clinic in B'ham Al.Dr.Llyod there has refered me to the pain clinic IN DOTHAN AL. I AM GOING TO A SPECILIST NOW FOR A DEAD NERVE IN MY DISKS AT SPINE THAT WAS CAUSING PAIN AT WRIST AND THEY ARE DOING THE: EPIDURAL STEROID INJECTIONS IN MY NECK: AND BY NO MEANS IS THIS FUN.. eek
          I HAVE 2 MORE TO GET, WITH THE SECOND ONE I HAVE TO DO THIS THURSDAY!(keep me in your prayers!) angel
          I hope and pray for a cure for all of us that has IC and any other pain. It is so true if someone does not have this : How could they ever understand? It does make it so hard for us even with Doctors and Families.. Friends. I now have no friends ... I guess they probably wasn't my true Friends anyways.And my family hasn't ever and I don't think they will ever understand this...which really makes it real hard for me. makes me sad...
          I pray you get some relief and rest. Think positive and have Faith sweetie! kissing love Brenda
          OBEY ACTS 2:38
          Remember you are not alone in your pain:Ask Jesus to hold your hand...HE WILL!!!!!!


          • #6
            Thanks sweetie for your kind words & encourageing me
            First I know many people in Dothan, I went to jr. high & high school their ( small world )
            Also my Mom is haveing same thing you are and no it is not fun . Mom has osteoarthritis
            in her neck & back . Dont know if it will help you but their is also another presager
            they are doing with a cement type inbetween the vertebras ( in neck & back ) you might already know of it .
            Thanks dear for your kind words & I also pray for you and yes God has always been by my side and on my side. Please keep ion touch....... Seabreeze19 [email protected]


            • #7
              Hi Georgia, and welcome, I feel for you, and all the pain you have experienced, and still are experiencing. I hope that you can get something to help you out, my heart goes out to you. Dealing with pain 24/7 can be very wearing on the spirit and the soul. Please know you have a lot of support, and compassion, and understanding, from the IC family in your situation. Keep us posted, and let us know how you are doing, and if you are getting some much needed help, hugs and welcome Iris. hi grouphug
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


              • #8
                Hi Georgia! I'm so happy that you found the IC boards. This is a great place to get support and encouragement. I hope that you find a new doctor who will treat your pain. I will be praying for you........Christie