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 Post subject: The drugs don't work
PostPosted: Sun Aug 13, 2017 8:40 am 
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Joined: Thu Jan 05, 2017 10:38 am
Posts: 59
Location: UK
Hi all,

To quote a song by the verve... the drugs don't work.

I saw my urologist last week and he has decided to double the dose of the current meds I'm on (Darifenacin) although he did say he didn't think it'd work for me he suggested giving it a go. He also said that if that doesn't work it'd be onto a medication they can only prescribe at hospital and not via my GP. He seemed to suggest that it was unlikely that one would work either. Which then lead him to the fun part....

He said when the meds don't work it'll be time for a full urology work up to prove the OAB. Once they've done that they can then go for Botox into the bladder. This doesn't sound at all fun. He also said that the Botox could cause everything to close up and that then I would have to self cath every time I wanted to pee. Quite frankly I'd rather spend the rest of my life in pads than have to ever self cath.

The question is, has anyone had Botox? Did you end up having to cath? What happens if I refuse the Botox? Currently the NHS prescribe my pads, I'm assuming they'll then refuse to keep supplying them as I'll be refusing treatment?


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 Post subject: Re: The drugs don't work
PostPosted: Sun Aug 13, 2017 3:33 pm 
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Joined: Mon Mar 05, 2012 11:15 am
Posts: 273
Location: Mississauga, Ontario
I have an overactive bladder and urge incontinence. Over the years, I've seen several different urologists and, if my memory is correctly, have tried 5 different drugs in various dosages up to the maximum for each drug. Each of the drugs had unpleasant side effects which mostly involved worsening my sinus problems and extreme dry mouth. However, none of them had much effect on my incontinence. The thing that has worked best for me is just accepting the incontinence and wearing a diaper 24/7. Once I got past the idea that diapers were appropriate only for babies and senile people in a nursing home, I discovered that they are a very effective and practical way of managing the incontinence so that I can go anyplace I want to go and do anything that I need and virtually anything that I want to do. Wearing an external catheter with a leg bag to collect urine is also a practical and effective way of managing urinary incontinence for a man, but I prefer wearing a diaper. Like you, I turned down the offer of Botox injections because I was afraid of the side effects.

Perhaps you're right that your medical system will stop paying for your diapers is you don't accept treatment with Botox. However, the cost of your diapers is quite possibly less than the cost of ongoing treatment with Botox.


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 Post subject: Re: The drugs don't work
PostPosted: Mon Aug 14, 2017 11:03 am 
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Joined: Thu Jan 05, 2017 10:38 am
Posts: 59
Location: UK
Inconinmiss wrote:
I have an overactive bladder and urge incontinence. Over the years, I've seen several different urologists and, if my memory is correctly, have tried 5 different drugs in various dosages up to the maximum for each drug. Each of the drugs had unpleasant side effects which mostly involved worsening my sinus problems and extreme dry mouth. However, none of them had much effect on my incontinence. The thing that has worked best for me is just accepting the incontinence and wearing a diaper 24/7. Once I got past the idea that diapers were appropriate only for babies and senile people in a nursing home, I discovered that they are a very effective and practical way of managing the incontinence so that I can go anyplace I want to go and do anything that I need and virtually anything that I want to do. Wearing an external catheter with a leg bag to collect urine is also a practical and effective way of managing urinary incontinence for a man, but I prefer wearing a diaper. Like you, I turned down the offer of Botox injections because I was afraid of the side effects.

Perhaps you're right that your medical system will stop paying for your diapers is you don't accept treatment with Botox. However, the cost of your diapers is quite possibly less than the cost of ongoing treatment with Botox.


Thank you. I was beginning to wonder if I should just accept the botox as it's what the Doc suggested. However much I'm scared of it.
I'm also slowly beginning to come to terms with just wearing a nappy and living with it. So far all the drugs have done is give me a dry mouth and headaches.
Hopefully we will soon find a drug that does work.


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 Post subject: Re: The drugs don't work
PostPosted: Tue Aug 15, 2017 7:07 am 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1292
I had the Botox trigone (bladder) injections. My experience with them was that they wore off after successively shorter periods of time, eventually making a urinary sphincterotomy necessary. For a short list of reasons, I am very sensitive to anesthesia, which made it necessary for my wife to hire home health assistance for me for the day after each injection.


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