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  1. #1
    ICN Member Kara29's Avatar
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    Oct 2005
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    Central, NY
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    2,809

    Botox Users, can you answer some questions for me?

    Does Botox help urgency and frequency? I want ti try it? My Doc in Bosotn does it and I want to make an appointment to do it.


    Thanks,

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  2. #2
    ICN Member IcyAngel23's Avatar
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    Jul 2005
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    Chicago
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    429
    To give you the short answer "Yes" If you need other info PM me

    Kristin

  3. #3
    ICN Member momw/ic's Avatar
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    Oklahoma
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    516
    It was a tremendous help for my frequeny and urgency. With botox I pee about once every 4-5 hours during the day and I will sleep about 8 hours through the night without needing to get up to pee! Amazing!!
    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
    _____________________________

    DX: IC - November 2002 after hysterectomy
    Interstim implanted March 2006 - died May 2011
    Interstim replacement June 2011
    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
    Docs: Pain management doc, urologist, family practice

  4. #4
    ICN Member
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    Jan 2006
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    161
    Yes botox helped me too with frequency and urgency. It put me in remission for about 18 months.

  5. #5
    Registered User
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    Sep 2005
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    11

    Botox

    How much and where in the bladder did you have it injected? Eighteen months straight!!!!! Did you change your diet at all? How many times were you going per day before that?

  6. #6
    Registered User andcohen's Avatar
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    Jun 2004
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    Australia
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    Dose Botox only help with frqu & urg or does it help with pain at all?
    Thanks
    Andrea

  7. #7
    Registered User
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    Jun 2002
    Location
    México
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    Botox helped me with frequency, urgency and pain

  8. #8
    IC Friend
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    Feb 2005
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    37
    Botox helped with me with urgency, frequency but most of all it helped me with the pain from IC, PFD, & Vulvodynia.

  9. #9
    Registered User
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    Apr 2005
    Location
    Norwich England
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    15

    where was the botox injected?

    My daughter went into full retention after Botox direct in her bladder wall. She had to have a suprapubic catheter fitted as a result.

    We think she has PFD problems and has had a therapist find some tigger points that refered her symptoms.

    Has anyone had Botox treatment for PFD and if so what was the outcome in terms of effect on pain, urgency, frequency etc?

    In the UK it just seems as if it gets used on the bladder and it seems that in this case retention is fairly common.

  10. #10
    Registered User
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    Jun 2002
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    México
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    I never have had retention after the injections. For best results, the drs have to inject in the urethra and pelvic floor, with this is helping with PFD

    I am very happy because Botox helps me very much, helps with frequency, urgency and pain. It helps with PFD and with vulvodynia too

    Next Monday I´ll have the injections again, and belive me... I can´t wait!

  11. #11
    ICN Member ettegirb21's Avatar
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    Jul 2005
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    Orlando
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    Botox?

    I haven't been on this site a lot, as you can see and noticed talk about botox w/ IC. Just wondering if someone can give me a brief overview of how it's administered, what it does to help, and the cost. Thanks

  12. #12
    Registered User
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    Norwich England
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    Botox in the UK

    Is there anyone in the UK that has had Botox treatment primarily in the urethra and pelvic floor as opposed to directly in the bladder.

    I am trying to find someone who has done this type of treatment, so I would be interested to find the hospital and specialist who did it.

    I would also be keen to know if this was an NHS treatment or if you had it funded privately.

    Thanks


    Colin

  13. #13
    ICN Member
    Join Date
    Mar 2006
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    botox in UK

    Quote Originally Posted by colin
    Is there anyone in the UK that has had Botox treatment primarily in the urethra and pelvic floor as opposed to directly in the bladder.

    I am trying to find someone who has done this type of treatment, so I would be interested to find the hospital and specialist who did it.

    I would also be keen to know if this was an NHS treatment or if you had it funded privately.

    Thanks


    Colin
    Look for Mr Eardley, a Urologist at Leeds. Top guy. I had it in urethra and bladder on NHS. He works both privately and NHS clinics. Go to www.drfoster.co.uk

  14. #14
    Registered User
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    Norwich England
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    Botox

    Hi Lotus

    When you had botox in the urethra and bladder did you get any retention problems? Our urologist that did my daughter last year said that he was worried that putting it in the urethra would cause incontinence.

    How many times have you had it - have you had any problems with repeated use?

    I couldn't find Dr Eardley the link you posted - have you another contact? Is he at st James hospital?

    Thanks

    Colin

  15. #15
    ICN Member
    Join Date
    Mar 2006
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    Quote Originally Posted by colin
    Hi Lotus

    When you had botox in the urethra and bladder did you get any retention problems? Our urologist that did my daughter last year said that he was worried that putting it in the urethra would cause incontinence.

    How many times have you had it - have you had any problems with repeated use?

    I couldn't find Dr Eardley the link you posted - have you another contact? Is he at st James hospital?

    Thanks

    Colin
    He works at both Leeds General Infirmry and St James.
    He said the risk is that you are unable to urinate, which would mean having to catheterise, but i was already doing that anyway. I have a very strange bladder, I used to suffer retention anyway, but would get periods of leaking. The botox has helped stabilise my bladder, I still get the feeling to wee, but sometimes have to use catheters. They would have to teach your daughter to self catheterise before having the treatment - dont know how old she is, but I was doing this since age 12, but I know people can do it younger.
    I have only had the botox once so far but will be having it again.

    He is Mr Eardley, not Dr. He doesnt use his title. Other than contacting the hospitals and asking for him I dont know how you contact him. He also works at the Nuffield in leeds. I swear he is on the drfoster site if you search for urologists in leeds.

    Hope I have helped.

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