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  • Getting Botox

    I'm getting my first botox in a little over a week and I'm scared, excited and nervous. I have had IC for over 20 years and have tried instillations, medications, hydro distention and now I'm trying botox. I'm on several medications still and hoping botox helps. Can anyone give me tips, advice or anything to help with before and after the procedure?

  • #2
    Re: Getting Botox

    I will be sure to write tips for you tomorrow. Thinking about you and hoping it is successful for you!

    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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    • #3
      Re: Getting Botox

      Thanks so much anything would be helpful. I know Dr.'s give out standard stuff for procedures but I think getting tips from people that have had it done is more helpful.

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      • #4
        Re: Getting Botox

        1. It can take up to two weeks before it starts to work.
        2. Make sure you know how to self-catheterize just in case you have the side effect of retention.
        3. Fatigue can be a side effect.
        4. Bring a frozen bottle of water for after the procedure. I have found urethral pain to be more after botox procedures than hydrodistenstion.
        5. If you are currently doing instillations ask your doctor whether you should continue with instillations or not.
        6. It does feel a little funny when it first starts working - I describe it as a sort of tug of war between my bladder and the botox.

        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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        • #5
          Re: Getting Botox

          Thanks so much for the tips. I did learn how to self cath, my Dr.'s nurse taught me as soon as he decided that is the treatment route he was going. I will definitely take a frozen water bottle for the ride home since it's a 40-45 min drive home. Thanks!!

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          • #6
            Re: Getting Botox

            Hi.. Did you ever try the botox for pain relief?
            I will discuss this with my uro soon - but I am so scared of the risk to self cath. Did you go through this?
            X
            Maria
            I have had IC since January 2015 and mainly with pain / burning / warm feeling in bladder / discomfort.

            Currently: Elmiron 4x100mg, LDN 4 mg at night, antihistamines

            Tried and didnt work:
            Meds; Uracyst, DMSO, Gabapentin, Cyclosporine A, Amitriptyline, hyperbaric oxygen chamber 40 x sessions, high dose long term antibiotics (8 months)

            Naturals; Colostrum, DH Aloe vera, acupuncture, MSM, Glocosamine, Homoepathic treatment, marshmellow root, chinese herbs, IALURIL, Gotu Kola, D Mannose.

            --

            Please find a cure - so many are suffering

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            • #7
              Re: Getting Botox

              Yes I did do botox and still do every 5 months. It gives me some relief. I did have to self cath the first time but not after that I never did..I was very scared to self cath too because I would get pain just from exams or anything but it isn't that bad to self cath once you get the hang of it. I would rather deal with the self cathing and get some relief than to not do it. Good luck and I hope it provides relief to you as well.

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