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  • KristinKathryn
    replied
    I guess I am confused. I thought this procedure was only for pain. It sounds like it may help with urgency and frequency as well?

    Leave a comment:


  • Sheri Ellen
    replied
    Hi Kim, My family is from Halifax area....feel like i know you..lol.

    Leave a comment:


  • jp
    replied
    Good for you !! I just got back from having the procedure done. So, we will see if I am getting any results or if I have the placebo. good luck to you ,and I sure hope you get the lidocaine..

    Leave a comment:


  • chairmenmeow47
    replied
    looks like i can participate in the study since i can determine when pain is related to IC and when it's related to endometriosis. yay!

    Leave a comment:


  • jp
    replied
    I said you may get the LiRIS , but that is the device that is put into you. The drug is lidocaine, and it gives out a continuous feed of lidocaine into your bladder. If you don't get the lidocaine, you will get a placebo.. So, I am sorry I used the word "LiRIS" when I meant lidocaine !

    Leave a comment:


  • jp
    replied
    I understand about feeling everything in the urethra. This has changed for me now, so as of late, I go to pee, and my urethra feels so much pressure and pain. And not much comes out, especially at night when I get up. I am due to go for physical therapy for pelvic floor, but had to cancel until after this trail is over.

    Leave a comment:


  • jp
    replied
    Thank you . I will keep you posted. I was a patient of Dr. Parsons back in the early 90's. I think you have to have had a cystoscopy with hydrodistension to be "officially" diagnosed for this trial. But that is not that big of a deal to me. I have had four over the years. Of course, this is under anasthesia.

    Leave a comment:


  • bjcov
    replied
    How are you "officially" diagnosed? I keep hearing that they are diagnosing on symptoms now days. Sometimes I wish I could go to Dr Moldwin or Dr Parsons. Id love to hear what they wOuld say. Especially since my symptoms are not "typical" for IC. I should just bite the bullet and have the hydrodistension.

    I hope you get the actual Liris and it works wonders for you!

    Leave a comment:


  • jp
    replied
    LiRIS

    Thanks for the encouragement ! You had to have a diagnosis of IC. You had to score a certain level on pain and urgency. And I think you have to be between 18 and 65. The dr. does a cystoscopy at the first exam. And then you keep a pain and urgency diary before you go in for the actual instillation. You may get the LiRIs or a placebo or a sham.. This is left in for two weeks, and then they remove it. Then they monitor you for four weeks, you keeping up the diaries. But, the good thing is, if you don't get the LiRIS the first time, and after the six weeks are over, you can, if you want, then get the LiRIS.

    Leave a comment:


  • bjcov
    replied
    Good luck! Keep us updated! What were the qualifications?

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  • jp
    replied
    Liris

    The Network will let you know if it is being done in your city. Good luck.. Keep us posted.

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  • Jocotter
    replied
    Where do you find the study sites?

    Leave a comment:


  • jp
    replied
    LiRIS Study

    I am currently in the LiRIS study. Tomorrow I will be getting either the drug, the placebo or the "sham". I am praying that i get the LiRIS. I will keep you posted.

    Anyone else in the study?

    Leave a comment:


  • chairmenmeow47
    replied
    i tried to register, but was excluded as a result of endometriosis. still though, i gave my name and number for future studies. even though i don't think lidocane helps me, i'm willing to try anything! i hope this works for those participating

    Leave a comment:


  • bjcov
    replied
    Thanks Sheila! I appreciate you looking into the polocaine for me. The only thing I can imagine doing is the actual act of inserting a cath. YIKES! I've not been evaluated for PFD. There is only one person in my area that does it and she has me on a wait list! So annoying! This is part ofthe reason I am traveling to Seattle to see an IC specialist.

    Leave a comment:

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