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    ICNDonna
    ICN Staff

  • ICNDonna
    replied
    You might want to do a search for adverse effects from interstim to see if that's a possibility. I do remember at least one report of retention, but it wasn't after long term use. Have you had to have your unit replaced? I have a pain pump and I had to have a replacement when the batteries were close to needing replacement --- they don't replace the batteries without replacing the pump.

    Please keep me posted on how you are doing.


    Donna

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  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    Hi fellow IC’ers!

    i just wanted to touch base again to see if anyone has had same issues as me after Botox. I’m 14 months out from procedure. Still cathing. Very frustrated. Now my doctor says it may not be the Botox lingering but a nerve issue. I’ve had interstim implant for almost 20 years. Some of the sensations I have with bladder and bowel function have changed. I’m very concerned that I may be cathing with no end in sight. PT is now on my schedule. I’ve had pelvic floor PT before and there was little to no help for me. The nerve issue is quite scary.

    Leave a comment:

  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    Hi watermelon,

    sorry I’ve been a bit Mia and only now checked the forum messages. I hope things have improved for you since you messaged me. Yes, tramadol helps me with pain. Sometimes, when in flare or in midst of infection, I have to take every four hours to keep pain at bay, but it helps.

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Originally posted by watermelon View Post
    Hi, T.Jop.,

    i had the bladder Botox done under anesthesia on Dec. 23rd, 2019. didn’t notice much retention until the 3rd day, like you. i could only pass a trickle and occasionally i can pass a surge of urine but am double, triple, quadruple, etc. voiding at times, and having difficulty urinating despite feeling full. i went to the ER of the hospital that did my procedure and of course my symptoms magically disappeared (of course, lol) for the two hours i was there & they said that my bladder was only retaining 40cc’s of urine. they said there was nothing they could do until i’m seen for my follow up on the 8th.

    i’m terrified of catheterization because the majority of pain i had from the procedure was due to the catheter. i also passed blood clots and was screaming during the first two days every time i went to pee. i imagine i will have a similar experience as you in terms of perhaps needing to self-cath or experiencing retention for a long period of time. does the tramadol help? i used to take it but New York State is very strict about prescribing painkillers and they told me to just take Advil - which does not work at all for me. :c
    Advil is a problem for many of us --- along with other NSAIDS. Sometimes Tylenol helps.


    Donna

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  • watermelon
    ICN Member

  • watermelon
    replied
    Hi, T.Jop.,

    i had the bladder Botox done under anesthesia on Dec. 23rd, 2019. didn’t notice much retention until the 3rd day, like you. i could only pass a trickle and occasionally i can pass a surge of urine but am double, triple, quadruple, etc. voiding at times, and having difficulty urinating despite feeling full. i went to the ER of the hospital that did my procedure and of course my symptoms magically disappeared (of course, lol) for the two hours i was there & they said that my bladder was only retaining 40cc’s of urine. they said there was nothing they could do until i’m seen for my follow up on the 8th.

    i’m terrified of catheterization because the majority of pain i had from the procedure was due to the catheter. i also passed blood clots and was screaming during the first two days every time i went to pee. i imagine i will have a similar experience as you in terms of perhaps needing to self-cath or experiencing retention for a long period of time. does the tramadol help? i used to take it but New York State is very strict about prescribing painkillers and they told me to just take Advil - which does not work at all for me. :c

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    I hope it wears off soon. I understand how frustrating this must be for you.

    Sending gentle hugs,
    Donna

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  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    My regular urologist’s NP ordered a Urodynamics test and an ultrasound to check for obstruction etc. Everything was normal. I have the interstim implant as well. It is on the lowest setting. The doctor suggested it was not allowing me to empty. Obviously, that’s not the case. (It has been a help over the years, but not that much of a help that it would cause the retention.) I did seek a second opinion after the NP was concerned about an obstruction and that I still had retention. She was adamant that the pkg insert and research says it only lasts six months at most. I have read otherwise from things I’ve found online. The specialist in Nashville said it typically doesn’t last past 6 months but everyone is different and that she wasn’t concerned about it at this nine month point. No I haven’t had an ic flare since getting Botox but I’ve had numerous infections and had to reduce amount of water I drink-which is all I drink. I’ve gone through each of the recommended treatments as outlined from the UA except the cyclosporine. Botox for me has had fewer benefits than rewards. Praying for the Botox to wear off sooner than later! 🙏🏼

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    That has to be challenging for you. Are there any alternative treatments being suggested to help? If not, you might want to seek a second opinion.

    Donna

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  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    Yes, I have been self cathing since March. Not happy with it. 🙁

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Originally posted by T.JoP. View Post
    Just an update from my botox. I am nine months out and still have retention. I battled numerous infections the first few months. I have been on a low dose of antibiotics for six months now. No more infection. Ready for botox to wear off. I'm glad others have had success with it.
    That's awful. Are you needing to catheterize to urinate?


    Donna

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  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    Just an update from my botox. I am nine months out and still have retention. I battled numerous infections the first few months. I have been on a low dose of antibiotics for six months now. No more infection. Ready for botox to wear off. I'm glad others have had success with it.

    Leave a comment:

  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    I’m glad you’ve had some success. Thank you for the reply and encouragement.

    Leave a comment:

  • wizbe
    ICN Member

  • wizbe
    replied
    Hello there!

    I have had botox 7 times, I am scheduled for my 8th on Tuesday. I am always put to sleep for mine as my doctor feels with my pain level it is the best option.

    Your bladder will feel like a bit of a tug of war for a couple of weeks as the botox begins to take effect. It does feel very interesting and funny at first but I can assure you that it gets better.

    I have had different experiences with each botox treatment. Some have worked extremely well while others have not. For the most part I have had good experiences. I have had one not work at all and one that worked minimally. The other 5 have worked like a charm.

    I have passed clots as well over the first few days. I have developed infections from the procedure a couple of times. However, for the relief I get from the procedure, those are minor hiccups.

    I have had retention (not complete retention) where I haven't been able to empty my bladder completely. For 5 of 7 botox treatments I have cathed 4 times a day for about 2.5 months. I would rather do that than be in the washroom 50 to 60 times a day.

    I do have a decrease of pain from the botox. I lose that awful pee sensation (usually) and the pain that is directly in my bladder goes down. I do still have urethra pain and navel pain daily. However, with botox I can function and work, without botox I cannot work. It's a nightmare.

    I am thankful for botox. I hope it works for you :-)

    Leave a comment:

  • T.JoP.
    ICN Member

  • T.JoP.
    replied
    There was way more pain than I expected but it wasn’t the same pain as in the middle of a severe ic flare.


    I hope you you do well with your procedure. Everyone is so different. It may be a breeze for you!

    Please let us know how it goes.
    T.JoP.
    ICN Member
    Last edited by T.JoP.; 03-22-2019, 09:03 AM.

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  • dianabritt
    ICN Member

  • dianabritt
    replied
    I'm getting botox injections April12
    My Dr don't do the procedure in his office. It will be done in the hospital and I'll fully asleep. I'm terrified about the pain afterwards.
    ​​​​​​.

    ​​

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