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  • Uracyst today!

    Alright, I am a couple hours away from my first instill.
    Any advice? Anything I should do beforehand?
    This has my anxiety through the roof.
    21 years old
    dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

    ♥ looking for a way or medication to help stop spasms ♥

  • #2
    Try taking some deep breaths to relax. Relaxing will make the procedure much easier.



    Donna
    Stay safe


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    • #3
      Originally posted by ICNDonna View Post
      Try taking some deep breaths to relax. Relaxing will make the procedure much easier.



      Donna
      Thank you Donna. You always make me feel better

      Hopefully I'll take a cab back from the hospital. Public transit after this seems like a bad idea. The actual instill seems like it's going to be uncomfortable and awkward but okay, it's the afterwards that has me so riled up! There will probably be pain from the cath, I just hope it wont increase my urgency/frequency for the rest of the day. Getting back home would be a nightmare!
      21 years old
      dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

      ♥ looking for a way or medication to help stop spasms ♥

      Comment


      • #4
        Best of luck with the uracyst!! I definitely recommend taking a cab if you can afford it, I took the metro at least two times of the three I had uracyst instills. It was doable. For me, the catheterization itself was the most painful, but I was ok the rest of the day, it really wasn't so bad. Also, I remember it being much less scary and painful after the first time.
        IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
        Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
        Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

        Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
        Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
        Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
        Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

        Comment


        • #5
          Originally posted by DaniMSC View Post
          Best of luck with the uracyst!! I definitely recommend taking a cab if you can afford it, I took the metro at least two times of the three I had uracyst instills. It was doable. For me, the catheterization itself was the most painful, but I was ok the rest of the day, it really wasn't so bad. Also, I remember it being much less scary and painful after the first time.
          Thank you
          I didn't take a cab, just because I stayed in the hospital for 1 1/2 hours instead, I figured I wouldn't be ready yet to try and keep the instill in on the way home.
          The catheter pain is unreal. I wish they had used a lidocaine jelly or some sort of gel with a numbing agent instead of just lube. Either way, the pain only lasted a day.
          Trying not to get my hopes up too high just in case, but i do know even just the one instill has helped a bit. Yesterday was my 20th birthday and of course I felt obligated to have a drink with some friends (19 is the legal age, but my 19th party wasn't very good) to celebrate. I stuck to the least irritating drinks, and although I hadn't drank in a long time, I remember the pain being far less than any other time before it.

          Here's to hoping!
          21 years old
          dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

          ♥ looking for a way or medication to help stop spasms ♥

          Comment


          • #6
            I was just wondering how your instillation has worked. I think others would be helped by posting your experiences.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

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            • #7
              They can do something with lidocaine and the catheter. I was really scared the first time and they did that for me, but since then, I haven't felt I needed it. I'm not sure if they wiped the catheter with it or what. My doctor is good about easing my fears. They also used the lidocaine when they did the camera thing in the bladder. I DID need it on that one.

              Comment


              • #8
                To L.Thomas - I've only had one so far, and should be going in for the second tomorrow (had to cancel on Tuesday).
                So far, I haven't noticed much difference. My bladder is definitely a bit less irritated by foods right now, but I have also been following the IC diet really carefully.
                21 years old
                dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                ♥ looking for a way or medication to help stop spasms ♥

                Comment

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