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Needing input on Botox

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  • Needing input on Botox

    Has anyone had Botox injected into the bladder/muscles in the pelvis? Did you have pain after? If so, did they give you anything for the pain?

    Did the Botox help you in any way at all for the pain you have from IC itself?

    Did it help with urgency?
    Did it make using the restroom harder for you?

    Any and all comments welcome. I'm scheduled to have this done the end of March and would like any info or personal experience info I can get. Thanks!!

  • #2
    Re: Needing input on Botox

    Hi Jessro!

    From December 2015 to February 2016, there were three of us sharing our journeys with botox on this forum. All three of us had botox in the bladder wall, not in the pelvic floor.

    Each of us had a lot of success with botox at that time. We each had a reduction in pain symptoms, our frequency was greatly reduced, and so was the urgency. 2 of us out of the three did have retention. I had to catheterize 3 to 4 times a day for 2.5 months. The man who had it done catheterize up to 5 or 6 times a day for about the same time. The other lady did not have retention at all. We could all still pee on our own but we were not emptying it all out. All of us went on to have the procedure again. Both of them had success again, I did not. With that being said I am having botox done again in 12 sleeps at a higher dosage. With the dosage amount they are doing with me there is a real chance I may not be able to pee on my own for a couple of months. I am okay with that.

    When the botox starts to kick in 1- 2 weeks after the procedure, it can be more difficult to pee. But as time moves forward that wears off and you are able to pee more easily. I would have to say my first botox experience was amazing and it helped me to function somewhat normally - I even took a trip. Actually all three of us did at different times.

    If you search botox my experience wizbe in Google, you can read about my experience and you will see the other two commenting throughout. It helped me that much that this is why I want to try it again even though I had little success last time.

    Pain after the procedure - as the botox starts to settle in it will feel weird. Both times I have not enjoyed that feeling. After it settles it is fine. I found my urethra hurt more after each botox procedure than after the 6 hydrodistentions that I have had done. Bring a bottle of frozen water with you to your procedure.

    Hope that is helpful. Many blessings

    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. .


    • #3
      Re: Needing input on Botox

      Hi jessro- did you get pain relief with your botox treatment? How much did you get and did u have to self cath?
      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