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desperate for botox info

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  • desperate for botox info

    hi there everyone. I was just wondering if anyone out there has had any experience with botox bladder injections. I have had botox injections into my pelvic floor for pelvic floor dysfunction, but after two injections I have a had no success/ relief of pelvic/bladder pain. I am booked for next tuesday, August 2nd/2011 to have botox injections into the bladder. I am desperate for any info anyone may have on it. Good or bad. I am very doubtful as to it being successful as if it didn't do anything for the pelvic pain, why would it do anything for the bladder itself. Quite frankly I am sooooo tired of being a guinea pig! yet on the other hand Im practically ready to try anything if it can even decrease my pain by 5%!! I thought I started a new thread yesterday with this, but with my technical skills, i think it may have gone out into cyberspace never to be found again. lol So please if anyone has any experience with botox and their bladder , please let me know asap. thanks so very much!!

  • #2
    I think the same thing happened to my Botox posting. I got no replies either.
    Good luck with the Botox injections. My urologist said that about 60% of his patients had benefited from the injections. The first 3 times I got very short-lived relief months afterwards, but the last lot of injections did nothing but make it difficult to void. Some of the times when I get woken up needing to go to the toilet, nothing will come out. Then I have to get up 20 minutes later and try again. It seems to take about 8 months for the Botox to completely wear off. I am so exhausted I think I am going to try the Interstim since I have no other options at the moment and not one treatment has worked for me. I hope you're one of the lucky ones and the Botox helps you!
    Diagnosed with severe IC Feb 2008. Symptoms since 2004
    C5/6 fusion 2004. Chronic pain in neck and arms
    C4/5/6/7 posterior neck decompression December 2012
    Treatments tried for IC

    Hydrodistension - made me worse for 5 months
    DMSO installations (2) - second one caused so much pain that Dr decided not to do any more.
    Numerous oral medications for the bladder, none of which helped.
    4 treatments of Botox injections - minimal success.
    Permanent Interstim implanted August 2012 - nil benefit so removed May 2013
    Bladder nerve cauterization March 2014 and April 2014


    • #3
      I have severe urinary retention.

      I was sent to a new uro (new to me), at first she didn't believe I had the retention problems, she did a urodynamics test, which showed it took me 4.5 mins to pee 300cc, and I still had over 350cc in my bladder.

      This proved the retention issues and much worse than they thought.

      Her suggestion was to give me botox in my bladder, she explianed I would need a cath steady for at lest a month afterwards.

      When I strated to ask questions about it she could not answer them, I than asked how other people she had used botox on had done, and she admitted she had never actually used it in the bladder, I would be her first, in fact she may have not used it at all I suspect.

      I said no, I was not going to be her first.

      I have since been told by 2 uros, it is not to be used for people with retention, it can make it much worse. One Uro said and I quote "I hope you ran away from her".

      I am now very glad I didn't try this, I was in pretty bad shape and desperate at the time and was close to trying anything.

      I think the use of this needs to be decided on by a case by case, depending on what you are trying to accomplish with it.

      Once it is injected in to you, you can't take it out, and it lasts a min of 3 mons.
      My are with you all. May you all find a way to peace and joy in your lives.


      • #4
        Botox Bladder Success/ Urethra still painful

        Hi All

        Had my botox injections over a month ago. i have to say that it has helped my frequency and lowered my overall pelvic area discomfort. i do have to tighten and release a bit more to void...but it is not bad at all. it feels so good to have a nice long, steady stream as opposed to the short, multiple voids i have had to endure all day and throughout the night. i don't get up nearly as often now and it has helped my sleep pattern which makes it a lot easier to be more productive during the day.

        my md refused to inject my urethra cuz she didn't have any studies to site that would prove it to help. she thought it might make me incontinent. if anyone knows about anything written that shows that botox helps the urethra pls let me know so i can show my doc.

        if you already have retention issues botox is not for you. but it has lessened my pain, discomfort and frequency by 1/2. now if i could just get my urethra to calm down, stop spasming and stop hurting so much, i would feel nearly normal and maybe have sex again!!! wow, what a concept!

        feel free to ask me anything
        peace and healing