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  • InterStim Therapy? Is it right for me?

    I went and saw my uro/ gyn today and she wants me to see a doc about InterStim Therapy. I only have urgency/frequency symptoms. Been on imipramine with some results and just starting Elmiron in hopes this will give me better resu;ts. Im wondering if its too soon for me to think about this treatment/surgery since i havent started the Elmiron til today. Im very scared. thanks

    ------------------
    IC ulcerative proctitus lower back pain uterine fibroid allergies

    A friend is a person who reaches for your hand and touches your heart

    There are no rules. That is how art is born, how breakthroughs happen. Go against the rules or ignore the rules. That is what invention is about. Helen Frankenthaler
    :woohoo:

  • #2
    Hi Tura
    I have the interstim and yes, I think it's way too early in your treatment to even think about. I had exhausted ALL medical treatments and was using the bathroom every 20 minutes. I couldn't leave my house unless the place I was going to was within that 20 minutes and there was a VISABLE bathroom to use. The implant has worked for me and I am so grateful that something finally did help~BUT, I still have IC, always will. I pray that there will be a new treatment that will work for me someday and I can have this metal taken outa my fanny....it is a foreign object and anything could go wrong with it at any given moment.
    You could find that the elmiron DOES work for you and I would much rather take a pill for the rest of my life that live with this device in my fanny.
    Hope this helps some teri
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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    • #3
      Hi Tura

      I also have Interstim and have had it in almost a year now. I also had exhausted all treatments (3Years) I took Elmiron for a year and it helped with the burning but as for the urg/frq I found it did not work for me. I had to cath alot and also spent alot of time with a foley cath inso I could get rest. Interstim is a big step, but I know the urg frq is horrible. Have they tried any other drugs? I am sorry to say but everything they tried on me for urg/frq did not work
      The interstim has work well for me although I still have my days with urg/frq bladder bloat and stillhave to self cath at times. More right now and I am going in for a urodynamics as I just cannot seem to get that last bit out to the point where I feel like I have finished peeing. I am hoping that will show some good results. I think it would be good to talk to a uro about the interstim or see another uro. I saw five and went thru hydros cystos drugs Dmso cystistat. Dmso for me was horrible. I was in terrible pain and terrible urg frg when I had the cysistat and also had a lot of stress and I think it and being in the hospital for four days help with that(I was on Holidays, 3000 miles from home so that was stressing me as well cause I was too sick to get on the plane)After about four days they released me and I rented a car and just spent some time alone and then flew home. So I think it was a combination of calming down and some of the installations that helped, but still had to cath alot, but the urg/frg calmed down. Not to the point it is now.
      The only think I can honestly say is that I hope you don't have to try drug after drug and installlation after installation and everything else for the length of time that some of us on here did. I am sure Teri can vouch for that one. But I do agree with her Interstim is a big step, but it is one I am glad I made. I would read the postings on the good and bad points that people have expressed. Elmiron took about 8 months before I noticed the burning stopped (flares) but I still did get flares especially around my period time
      Hope this is of some info to you

      Sandy

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      • #4
        Hi Sandy,
        Thanks for your advice. Ive been on ditropan wich didnt help alot then the imipramine wich im on now. that helps but not compleately. I still get urgency frequency and have to watch what i eat cause its worse if i eat the wrong foods. Some days i can go almost 1hr-45 minutes other days only 1 hour and some 30 and on abad flare day maybe more, but in general i can go 1 hour between bathroom visits. Much better than before i was diagnosed with ic. Im gonan ask my doc if i can stay in the imipramine while i take the elmiron. elmiron looks to me to have helped others so i want to give it achance before i take drastic measures and do this interstim. Ive been reading about it on the net and i dont think i should do it until ive exhausted all other ideas. Thanks for your advice. Tura

        ------------------
        IC ulcerative proctitus lower back pain uterine fibroid allergies

        A friend is a person who reaches for your hand and touches your heart

        There are no rules. That is how art is born, how breakthroughs happen. Go against the rules or ignore the rules. That is what invention is about. Helen Frankenthaler
        :woohoo:

        Comment

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