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  • Botox Update

    Hi - I wanted to update my botox postings.

    Elemar, it seems like you and I got ours around the same time. I know you went through some hard times. I hope it proves worth it. Keep us updated - I need to ask my doctor how long it takes til you know if it is effective or not. She originally told me 2 weeks - but at the two-week mark I was WORSE OFF.

    I was so high on hope the first week and thought I was feeling a real difference. However, then I began having more bladder pain - deep pain, not pelvic floor pain, but deep bladder pain. When I called my doctor she wanted me to get a urinalysis and make sure it wasn't an infection. This was Thursday. On Friday, her nurse called and told me I had an infection and called in an antibiotic. Of course, I was overjoyed that it was an infection! (Because that is easily FIXED, unlike IC flares)
    Well, to my surprise she called back on Monday, after the 3-day culture, and told me it was NOT an infection after all and to discontinue the antibiotics. I had almost taken them all by then.

    Well, by then my flare was worse, I believe due to the antibiotics. Then, on top of that I caught some kind of bug and was miserable. My bladder was ON FIRE. It has taken another 2 weeks of rest just to get back to the point where I was before having the botox injections. My injections were on the left side in the pelvic floor muscles that are the tightest and most painful.

    I see my doctor in the next week and will have a lot of questions. I will post again when I find out more. Right now the jury is still out, and I'm a bit frustrated. I really do like my doctor and I think she is really listening and trying to help me. There are so many more options than when I was first diagnosed.

    My doctor did say there would be a cure for IC in my lifetime ... I'm just thinking ... hmmmm I am 53 now, so does that mean in the next few years or when I am 80? It does make a difference!!! And I would like to be able to live a fuller life again - my world has gotten smaller and I spend most of my time with ice packs and a heating pad and pain medication.

    Thanks everybody for posting your botox experiences. I will be checking back. Or PM me if you have any questions or want to share privately.

    - Sharon aka ICsmiles
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!
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