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Bladder Botox

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    erinw1405
    ICN Member

  • erinw1405
    replied
    Re: Bladder Botox

    Thanks, so I shouldn't have high hopes for pain control?

    Leave a comment:

  • wizbe
    ICN Member

  • wizbe
    replied
    Re: Bladder Botox

    I would agree that you should make sure that you exhaust your other options first. For me, I have had mixed results with botox but for sure, botox helped me when nothing else seemed to work anymore. It gave me my life back after being in the washroom 60 times a day for a very long time. It definitely helped with frequency and the pain did diminish some but I still needed to continue instillations and narcotics for pain. I would say the first month is the hardest as it feels a little like a tug of war between your bladder and botox. It feels a little weird but once you get through that it feels ok. On two occasions I have had to catheterize 4 times a day due to retention. I could still pee on my own but I was having about 250ml remain in my bladder so I had to catheterize to drain this out four times a day. The other side effect that I had as well is severe exhaustion for a month or two after. However, for me, I would take both of those things over the severe frequency and pain anyway. I hope this helps. I have had five botox procedures thus far all with varying results. Out of those five, only one of them didn't work. However, the others worked at varying levels.

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  • MelindaP
    ICN Member

  • MelindaP
    replied
    Re: Bladder Botox

    Me too!!!!

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  • MorganMorgan8
    ICN Member

  • MorganMorgan8
    replied
    Re: Bladder Botox

    Whoa, that really scared me.

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  • icnmgrjill
    ICN Founder

  • icnmgrjill
    replied
    Re: Bladder Botox

    It's important that you understand the AUA Six Steps of Treatment. They were arranged in a six step system (https://www.ic-network.com/interstit...is-treatments/) to help patients have a very clear treatment plan that minimized the potential risks of any given treatments. Botox was originally in Step 5 because of the mixed results but also the risk of profound side effects. Some patients may be unable to urinate voluntarily after the procedure and may need to self catheterize for several months before the effect wears off. However, the AUA updated their guidelines in September 2014 and reclassified Botox as a Step 4 treatment option because new research emerged which showed that 100u treatments are as effective as the 200u treatment yet were found to cause fewer adverse events. The AUA clearly states that Botox is not an appropriate treatment for those who are unable to self-catheterize. Other adverse events including dysuria, straining and bladder retention.

    However, just on Friday, I worked with a patient who went into cardiac arrest 4-6 hours after her treatment. She almost died. She was on a respirator for weeks while they waited for the botox to stop affecting her heart and ability to breathe. The FDA issued an alert about Botox several years ago because it can move far from the site of treatment... which, in her case, was to her lungs and heart. It is VERY IMPORTANT that you have a discussion about the risks of this treatment with your care provider. I would consider/cover a few things.

    #1 - Have you exhausted all of the treatment options in Steps 1 through 3 first?

    #2 - Have you considered what your IC Subtype might be?? That could change your treatment direction. https://www.ic-network.com/interstit...es-phenotypes/

    #3 - Are you capable of self catheterizing if you are unable to urinate after the procedure? If not, then this treatment should not be done

    #2 - Has the doctor had ANY severe side effects of treatment? If so, what has he/she experienced.

    Here's a link to the FDA drug info on BOTOX and you will see, at the top, a very strong warning about its risks. I hadn't worked with a patient who had such a severe reaction until recently. And, she's got one wicked malpractice lawsuit potential now because she was not informed of the potential risks, etc. etc.

    https://www.accessdata.fda.gov/drugs...00s5302lbl.pdf

    Jill

    Leave a comment:

  • neohioic
    ICN Member

  • neohioic
    replied
    Re: Bladder Botox

    I have not done that. I was offered it but they told me they don't like to do that in guys because of the possible need to self cath. They also told me that because I was retaining already that it might not be a good idea. I guess the botox makes the retention worse. I heard it can really help for pain though

    Leave a comment:

  • erinw1405
    ICN Member

  • erinw1405
    started a topic Bladder Botox

    Bladder Botox

    I am scheduled to get a botox injection in a month. Has anyone done this and what was your experience?
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