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  • patricia1
    replied
    For me I got the InterStim for my urgency and frequency. And at first it did help. But for me it never helped with the pain.

    Usually the InterStim is used for incont. urgency and freq. There are some doctors out there that are using it for IC pain and telling patients it will help them with there pain. And depending on the type of pain some people do get pain relief. But the majority of patients do not get pain help from the InterStim.

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  • DebbieB
    replied
    Well I did the InterStim mainly for urinary incontinence..
    I was told right up front it was not for pain but I am one of the lucky ones that when I had it done all my pain went away..
    I am now in pain due to the battery in the pacemaker stop working, going for surgery to replace the pacemaker unit on May 29 then I will be able to tell you if my pain is all gone again..
    I really believe that it all depends on what kind of pain you are having as I have pelvic floor dysfunction and that is mainly where I had the most pain for me any how, we are all so different with our IC ..

    Yes , you do the trial first as that is what will tell you if the InterStim Implant is going to help you or not, I really have not heard of any one that did not do the trial first ...

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  • piper_chayse
    replied
    For me the purpose of Interstim was for urgency/frequency and urinary incontinence. They explained that if at some point down the road I did experience pain relief it would be a bonus. So far I haven't had any pain relief but added pain from the incisions. But it's a waiting game I suppose! Hope all are well!
    God's Love,
    Piper

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  • Tip and IBS
    replied
    I was just wondering for you(who had it removed) why it dosen't work for pain.Is it the purpose of Interstim to get rid of pain?

    Did you had the "trial" implant first?

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  • gardenofeva
    replied
    False Hope

    I had my interstim taken out two weeks ago and understand your pain. I was sent to one of the BEST doctors who convinced me the interstim would take away my pain! I was sure I would be finally be cured from my horrible life of pain from IC. After one and a half years of reprogramming and reading that is was not for pain I turned it off and scheduled to have it removed. It is now gone from my butt and I also will have scars from a prodecure that wasn't neccesary from the beginning. I am also so thankful to be out of this doctors hands. He was the most uncaring, rude and hateful doctor I have ever seen.
    And his nurse must have taken lessons from him as she wasn't any better.
    I'm back with my old doctor now whom is the most wonderful caring IC doctor I've seen. And his staff is the best. One phone call and they put me above the rest and see me asap. What a difference doctors can make! I still have the pain that has caused the last five years of my life to be lost. I still pray and pray and pray that someday someone will find a treatment or better a CURE that will change life for all of us.
    Just Eva

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  • deborah bush
    replied
    Hi! Patricial 1 I am so happy you got your interstim out, because why have it in there if it not working. I hope you are feeling better. I had my interstim taken out in 2003 in Miami, fl. The docter that put it in would not deal with me. Finally when I went to see him, he agreed to do another revision. I would have to agree on different things so I decided not to go back to him. So when mother and I went to Flordia for the winter I went to see my doctor in Miami. He agreeded to take my interstim out and he told me that he was going to start a 3 year trail study. So I decied to do to do the Botox study and it work for me. I was going to the bathroom 60 times down to 5 to 7 times a day. So I am so happy that my interstim is out and I get burning pain on my inscinon sites where the interstim was. So I will be praying for you Patrical 1 that you feel better.

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  • patricia1
    replied
    (((((THANKS))))) Mary, Tig and Amy...anytime I have needed to rant and rave or just say something you have always responded.

    Piper I know how alone and upsetting it can be. This is why I tried to write in words why I did it. I am not to good at writing stuff down. Because I know there are others out there that have had problems and I want them to know they are not alone....And if you ever need anything just let me know.

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  • piper_chayse
    replied
    Thanks

    Dear Patricia,
    I just wanted to thank you for your post. I too have been through a lot of ups and downs during my journey with Interstim. I finally changed doctors, which has been a gift from God! But you posting this helps me know that I am not the only one going through this type of thing. Someone else put a lot of faith and hope into Interstim, just to realize that it comes with a lot of pain and hard decisions as well. I hope you find relief soon. I'll be praying for your recovery.
    God's Love,
    Piper

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  • ihurttoo
    replied
    Thank you for sharing your story. You are a very brave and courageous woman. I hope that you feel better and stronger with each day that passes.

    Hugs,
    Amy

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  • mary124
    replied


    Thanks for sharing. Hope you are on the road to recovery.

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  • tigger_gal
    replied
    Thanks Patricia, I have discovered that I cannot function with out it. After 4 years of success, all to be haulted, because of my own stupidity. I knew to guard my butt better then Fort Knox

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  • patricia1
    replied
    Thanks all...

    Tig I was just wondering when I signed on how yours was doing...Hopefully you will find out something soon. : o )

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  • Trishann
    replied
    Battle scars, a true fighter. I am glad you are home too. I hope you do find other treatments that will help you. It is good to hear from you.

    Sending hugs, Trishann

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  • tigger_gal
    replied
    Hi Girl, good to see you posting.. I hope you heal fast and the pain stops.
    I have an appt tomorrow at 4:45 to see what my options are.

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  • DebbieB
    replied
    Hi Patricia :

    I am glad that it is all over for you and that you are feeling a bit better, take it easy and I do hope in all of my heart that you can find that right meds or treatment to help you with your IC..

    I am thinking of you Patricia !!
    I hope you have a very speedy recovery Patricia !!

    Warm hugs, Debbie

    Leave a comment:

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