Announcement

Collapse
No announcement yet.

LiRIS Study Sites Expanded

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    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
    my experience with classical IC:
    • right side pelvic pain (also minor frequency issues) since 8/6/11
    • endometriosis discovered 9/1/11
    • hunner's ulcer discovered 11/29/11


    i also have sporadic lower back pain and tendinitis in my right wrist.

    Comment


    • #17
      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?

      Comment


      • #18
        Where do you find the study sites?

        Comment


        • #19
          Liris

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

          Comment


          • #20
            Good luck! Keep us updated! What were the qualifications?
            symptoms when in a flare:

            I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
            *I have a fibroid on my uterus near my bladder.

            Medication
            100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
            Flexoril 10mg (doesn't work)
            Hydrocodone 5/325 PRN
            Cetalopram 40mg *severe anxiety over flare

            Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
            My urethra are very tight.

            currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

            I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



            find me on Facebook! Brandy Schildknecht Covington

            Comment


            • #21
              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.

              Comment


              • #22
                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!
                symptoms when in a flare:

                I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                *I have a fibroid on my uterus near my bladder.

                Medication
                100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                Flexoril 10mg (doesn't work)
                Hydrocodone 5/325 PRN
                Cetalopram 40mg *severe anxiety over flare

                Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                My urethra are very tight.

                currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                find me on Facebook! Brandy Schildknecht Covington

                Comment


                • #23
                  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.

                  Comment


                  • #24
                    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.

                    Comment


                    • #25
                      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 !

                      Comment


                      • #26
                        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!
                        my experience with classical IC:
                        • right side pelvic pain (also minor frequency issues) since 8/6/11
                        • endometriosis discovered 9/1/11
                        • hunner's ulcer discovered 11/29/11


                        i also have sporadic lower back pain and tendinitis in my right wrist.

                        Comment


                        • #27
                          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..

                          Comment


                          • #28
                            Hi Kim, My family is from Halifax area....feel like i know you..lol.

                            Comment


                            • #29
                              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?
                              Diagnosed with IC in May 2011

                              Current Medications:
                              Elmiron 400 mg daily
                              Imipramine 75 mg daily

                              Comment

                              Working...
                              X