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 Post subject: Out of options?
PostPosted: Sun Mar 05, 2023 9:02 am 
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Joined: Wed Jul 28, 2021 2:44 pm
Posts: 17
Location: London
I have used three or four different pills over the last year or two that were supposed to help wit my urinary leaks.
None of them did anything. My Urologist wants me to try Botox but this scares me and not sure of long term effectiveness.

Now looks like Doctors out of ideas. Are they missing something? Is there anything else I can try?


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 Post subject: Re: Out of options?
PostPosted: Sun Mar 05, 2023 11:35 am 
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Joined: Wed Jul 09, 2014 3:46 am
Posts: 374
Location: UK
Meits wrote:
I have used three or four different pills over the last year or two that were supposed to help wit my urinary leaks.
None of them did anything. My Urologist wants me to try Botox but this scares me and not sure of long term effectiveness.

Now looks like Doctors out of ideas. Are they missing something? Is there anything else I can try?


Hi Meits

So sorry to see that your medical team have reached this point. Having been incontinent for over 30 years now (time flies) I manage it successfully with diapers and have a full active lifestyle. Don’t feel down at this time look at it as the start of a new chapter in your journey. Yes you have incontinence but incontinence does not have you. Everyone here is great.

If you have any questions reach out you are not alone.

Take care

Greenbank


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 Post subject: Re: Out of options?
PostPosted: Sun Mar 05, 2023 12:35 pm 
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Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
You're right about Botox. It is not permanent, and it can also get expensive. It also may not work (such as in my case). There's also Interstim.

"InterStim Therapy is an FDA-approved treatment for overactive bladder and urinary retention. With InterStim Therapy, an implantable device sends mild electrical pulses to the sacral nerves to reduce symptoms of bladder control problems, so you can get back to living."

But again, it may work or may not. I would advise to research this and ask your doctor about it if it sounds at all like a possibility for you. I very nearly had this surgery done when I first heard about it, but elected to wait until I had figured out what was causing some of my other problems. I was eventually ruled out by a neurologist. This procedure unfortunately would not be effective for me and I would cost me thousands of dollars, so I am glad I waited i guess. Part of me still wants to find out for myself and just try it.

On the flip side, I just had Botox injections for migraines and I am so far doing much better. I was somewhat nervous about it but accepted the risk due to how much pain I have been in. I can say it was much tamer than I expected and that I wish I had been able to do it sooner.

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Thank you kindly,
CG


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 Post subject: Re: Out of options?
PostPosted: Sun Mar 05, 2023 3:46 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1837
My experience with urinary Botox injections for incontinence is somewhat dated, as I had them in the late 1990s. My experience with them was that they worked pretty much as advertised; my painful bladder cramps subsided, although I still leaked and needed to wear protection at all times. The problem was that the injections wore off after successively shorter periods of time, necessitating repeat injections. When the last injections wore off in three weeks, my urologist recommended the sphincterotomy, which was a godsend, and didn't need to be repeated until 2021. I do not know if my experience is representative; I'm sure the formulations for Botox now are improved over what I experienced. Good luck and report back when you are able.


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 Post subject: Re: Out of options?
PostPosted: Sun Mar 05, 2023 11:19 pm 
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Joined: Thu May 15, 2014 4:59 pm
Posts: 216
Intersim and Botox are the two methods most pushed by the urologists I have had. I do not want to do the intersim surgery and Botox is out because I cannot catheterize for fear of the process. I have had a few very bad interactions with catheters that traumatized me enough to never want to have it again.


Do your research on both and see if either would be tolerable. They MIGHT grant relief, or they might lessen your accidents from like 4 to 3 or two per day.

The other option is the one someone of us do which is diapers or pull-ups depending on the volume and. Frequency. I have been in diapers for about 20 years at this point and evolved on what worked best for me over the years. Lots of good people here with good advice


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 Post subject: Re: Out of options?
PostPosted: Mon Mar 06, 2023 1:14 pm 
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Joined: Wed Jul 28, 2021 2:44 pm
Posts: 17
Location: London
Currently it's manageable. Just very occasional accident daytime. Home at night is also mostly ok can deal with the occasional wet bed.
Staying away overnight is more concerning. May consider something for those occasions.


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