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  • Bladder Botox

    I am scheduled to get a botox injection in a month. Has anyone done this and what was your experience?
    Current treatments: Botox, Bladder installations, Elmiron, Amitriptyline, Gabapentin, Hydroxyzine, Sprix.

  • #2
    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

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    • #3
      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
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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      • #4
        Re: Bladder Botox

        Whoa, that really scared me.

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        • #5
          Re: Bladder Botox

          Me too!!!!

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          • #6
            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.

            Current Meds:
            1 Elmiron 100mg 3x a day
            1 Cimetidine 300mg 2x a day
            4 Gabapentin 300mg 3x a day (3600mg)
            1 - 2 Atarax 25mg at bedtime
            1 baclofen 10mg 3x a day as needed
            200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
            2 belladonna and opium suppositories as needed for pain daily.
            Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

            I have tried but failed -
            lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
            [/I]

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            • #7
              Re: Bladder Botox

              Thanks, so I shouldn't have high hopes for pain control?
              Current treatments: Botox, Bladder installations, Elmiron, Amitriptyline, Gabapentin, Hydroxyzine, Sprix.

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