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HELP! IC, Urethral cyst, interstim....

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  • HELP! IC, Urethral cyst, interstim....

    I have been reading your message boards since last Summer. I can relate to so many that have posted. I would like to share what I have gone through..

    My pain(and I mean INTENSE pain) started in October of 1999. When my first doctor decided I probably had some form of IC, it was also suspected that I had a urethral cyst. So, between him and another doctor this is what I had done between February 2000 and January 2001: 21 urethral dilations, 7 DMSO treatments, 3 Silver Nitrate treatments, months of antibiotic therapy, elmiron and pain medication.

    In January 2001, finally had the urethral cyst removed, which caused MAJOR nerve damage, on top of the IC, plus found out, that the glands in my urethral tube are swollen. Yes, very weird.

    So, on to the next doctor, which is six hours away from my home. First, I was put on Macrodantin and Neurontin. This did not help, so, his idea was to put in the interstim. Never mind that I probably have another cyst and my glands are still swollen. I've had the interstim since November of 2001, and I've had FOUR surgeries on it!!! AND, it is NOT helping with the pain!!!! I am ready to completely give up!!

    I've been off work since January, but am scheduled to go back next month. I just don't know what I am going to do. I can't even function. I am only 34, but I feel like I am 134!!

    I could really use some support...and I'm sorry this is such a long message!

  • #2
    Welcome to the IC Network. I hope you will get some responses from some who have experience with interstims.

    I will be moving your post to the Nerve Stimulation: Challenges board, where you are more likely to receive helpful answers.

    Sending healing thoughts,
    Stay safe

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    • #3
      I am soooooooooooo sorry for all that you have been thru. There has been alot of debate here regarding the interstim and pain. I can only speak for myself and I had my original implant done in Oct of 99 and it NEVER helped my pain. The device quit working and I had to have it redone in Oct of 2001. And, again, it has NOT helped my pain. It breaks my heart when I hear that dr's are telling their patients that this will relieve their pain. I know too many of us who have been devastated because they are in just as much pain, and maybe even more after a dr has made promises that can not be kept.

      If you would like to e-mail me my addy is [email protected]
      I am really sloooooowwwwwwwww and getting back to my mail so please don't think I've forgotten about you if you e-mail me.

      tons and tons of hugs~
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


      • #4

        I am so sorry for all of the problems that you are having. They all seem to come at once, don't they? My doctor talked to me recently about the Interstim. She did say that few people are helped at all with the pain with this device...mostly just the frequency and urgency. I am sorry that I could not be any help, just know that you are in my thoughts and prayers. I am 35 and feel as if I am 100+, so I definately understand that part, and I know that it can be VERY depressing and frustrating. Please let us know how you are doing, and if you ever just need to talk, my email is: [email protected]

        Take care, and know that my prayers and healing thoughts are with you...
        "It's not brave if you're not scared..."


        • #5
          Cristina~Pat your dr on the back for me, k, and while you are at it give her a big <img src="graemlins/kissing.gif" border="0" alt="[kissing]" /> too for being so honest about the pain issue and the interstim. IT's such a huge pet peeve of mine and it settles my heart when a uro is completely honest about the pain issue and the surgery......

          tons of hugs~
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".