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  • tpronti
    replied
    Thanks so much for doing this!

    Leave a comment:


  • backwoodsgurl
    replied
    Liris

    Hey,

    I am new the this section of the forum, But I am more excited that ever! I go for my first appointment on April 13th! I have been with out a instill since Feb 15th. I normally rely on them, So I am hurting quite a bit, and I have been hardly sleeping and pushing through! But I am traveling From North idaho to seattle to do my study which is 6 hours away. I am soo excited to start. I want to have hope that this works.

    I have questions like if it works, then will i get to keep the pretzel in after the study? Does it hurt? Is there as much pain and urgency?

    At this point I am willing to try anything!

    My doctor here is getting the study and will be available to do the study in may, But honestly I dont know if i can wait to more weeks. I just wanna start NOW!

    Any recommendations or advice from those on it?


    THanks.

    Leave a comment:


  • jp
    replied
    LiRIS

    ICGRRL, Thank you for the kind words. I got the pretzel out yesterday, and now will be monitored for four weeks. I think I got the lidocaine, but urgency at night is still bothersome. I am not sure what they expect from the pretzel, or how much they expect as far as results go, but I have not been in much pain and the urgency is less during the day. Also, when I go pee, I am able to expell all of it, unlike before when I was holding at least 200cc's. So, I am happy for these results. I will find out if I got the lidocaine in two weeks.

    Hang in there. Help is on its way !!!

    Leave a comment:


  • icgrrl
    replied
    Liris

    The trial sites are too far away from me, I started begging to get in when I first heard of the pretzel. I cannot tell you how grateful I am that you folks are out there testing this new product for those of us that can't. Thank you so much from the bottom of my heart!

    Leave a comment:


  • jp
    replied
    LiRIS

    Hi. I am so sorry you have IC. It is challenging. I was diagnosed back in 1987, so I am a long time warrior.

    If you don't know what the "lidocaine pretzel " is, google it. This is what the LiRIS treatment is affectionately called. It is about the size of a quarter. They put it in your bladder via a cystoscopy. It goes in like a long noodle, and then curls around to form a pretzel like form.

    It stays in for two weeks giving a continuous feed of lidocaine into the bladder. I really can't say that I know for certain I have that or a placebo. But this wed. I will find out as they remove it. They do blood work and you keep pain and voiding diaries. After it is removed, they monitor me for four weeks. If I have the placebo, I can then go and have the real lidocaine put in. I think I have less urgency. Bladder pain is not as intense as it was for years, but urgency is my main complaint. Especially at night.

    there is real hope that this LiRIS treatment will not only help IC sufferers, but also people with other diseases , like bladder cancer, etc.

    I hope this answers your question. If you have the trials in your area, you might think about becoming a part of this study.

    Leave a comment:


  • BETHSHRONCE
    replied
    Liris

    Originally posted by jp View Post
    I have the pretzel in right now. I will get it out next Wed. I have no suggestions except that you are doing a great thing for everyone out there in being a part of this important study. Good luck, I hope you get the lidocaine.
    Hi! I am new to this chat room. I have Interstital Cystitis and I am always in pain. If you would please let me now how the Liris works? Good luck I hope it works for you!

    Leave a comment:


  • tpronti
    replied
    Yes, please keep us updated.

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  • needsrelief
    replied
    thanks please keep me updated. The nearest clinical trial site to me is a little over 2 hours away. . I wish it was more local. Its just a whole lot of driving. The study sounds promising and I really hope it gets approved before 2015.

    Leave a comment:


  • jp
    replied
    LiRIS

    At first, right afte the cystoscopy, I thought I could feel it tug a little, but then it may have been just the feelings after the cysto. I haven't had that feeling in the past week. Sometimes I think it has made a difference in the urgency, but then I have urgency again!! And I really don't have much pain, but then again, it could also be that I have the placebo and I am not in a flare right now as far as pain goes. So, I can't say that it has made a huge difference I get it out on Wed. and then I will know whether I got the real thing or not. I will keep you posted. I wish I could be so definite about it making a HUGE difference, but I can't. If it is the placebo, I will go back and then have the lidocaine put in. I will go through it all again, but this time I will know that it is lidocaine in there.

    Leave a comment:


  • needsrelief
    replied
    what is it like to have the pretzel in? does it feel uncomfortable? do you feel you are getting some relief from IC symptoms?

    Leave a comment:


  • jp
    replied
    Thanks, Kdub..Where are you located? Please let us know how you are doing.

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  • jp
    replied
    Thanks, tpronti. I hope this proves to be a very good thing for all.

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  • Kdub
    replied
    Welcome! I'm just thankful that I'm able to be a part of something so promising to all of us who are suffering.

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  • tpronti
    replied
    Thank you so much ladies for taking the time out to do this.

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  • Kdub
    replied
    Thanks jp. Me too! At least we know we will definitely get lidocaine in the second phase of the study! Best of luck to you as well.

    Leave a comment:

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