I am really struggling with bladder infections & lack of control. It has been suggested that I have Botox injected into my bladder & then use a catheter. Has anyone had this treatment? The hospital nurse said I would have to insert the catheter for up to 10 times a day, surly not. I don’t have the time nor inclination for that. Any feedback or suggestions would be much appreciated.
I had the Botox treatment a couple of years ago. It’s not exactly that I needed it, since my problem was starting to go rather than stopping! But the urologist decided that would be good, so I went along with it. The Botox treatment was done as day surgery, so I was awake throughout, and the hospital staff thoughtfully put it on a TV screen so I could watch!! As if you really want to?
I already used ISC to empty my bladder, so that was nothing new. But 10 times a day?? No, you’d end up with a really sore urethra if you were doing that all the time. If you had Botox, you wouldn’t be able to start ‘going’, so would have to use self catheterisation, but something like 6 times per day would be more likely.
As for actually doing ISC, it’s something that looms large in your brain until you are used to doing it. But honestly, it’s not difficult. I’ve been doing it now for more than 7 years and it’s easy to manage.
Having said that, after a year or more with no infections, I’ve just had a whole series of them. It seems I’m just not getting rid of the bacteria. And that is not related to my experience or expertise at ISC, just that it can happen when you are poking a (sterile) object into the urethra.
If your problem is leakage, or incontinence, as well as UTIs, then I’d say go for the Botox. But if you don’t have continence trouble, then just ISC might help, because you’d be emptying your bladder more fully. And just doing that a couple of times per day might be enough to stop the residual urine from sitting in the bladder.
Talk to your bowel and bladder nurse (if you have one), or your MS nurse about the whole subject. Just don’t forget (this is something I’ve only recently figured out), a surgeon will look for a surgical solution. A medical doctor will look at a problem very differently. And a urologist is a surgeon.
Best of luck.
Hi JanF, I’m a guy so plumbing is different and ISC is less prone to lead to a UTI. None the less they do occur, I seem to have a persistent one, its been lurking there for a few months and Trimethoprim (anti biotic) does not seem to get rid of it. My GP is being unhelpful so refer myself to Uro-neurology dept in Queen Sq, London. BOTOX works by relaxing the bladder so it does not respond to messages from the brain to empty. It is a life changing procedure and needs to be repeated about every 9 months. It is not a surgical procedure. The injections are painless and all done and dusted within 30 minutes Give it some thought, for me it has been life changing
This is so helpful, thankyou. I think I’ll see how this lot of antibiotics work & then self- refer. I’ve had the initial tests for the Botox etc but didn’t feel ready for that step at that time.
Thankyou for your reassurance
Hi JanF I haven’t yet had to take the plunge with Botox but I’d like to reassure you that ISC really isn’t the big deal it seems in advance. I have urgency and hesitancy issues but since starting tolterodine and ISC several years ago it has been a complete game changer. I use lofric sense catheters - they are really discreet to keep in your handbag - I happily use in work a couple of times a day - they easily fit in a jacket pocket or inside my long boots for the trip up the corridor from my office! Hope this helps a little
First of all get some proper advice from the incontinent nurse before taking any drugs etc.
I got rubbish advise from my MS nurse and GP and finished up wetting myself daily.
The incontinent nurse will come to your home you can contact via GP surgery.
They will first ask you to empty your bladder and then put a mobile scanner on your tummy and with me I was walking around with half a litre of liquid in my bladder all day as I was not empting it.
So it was overflowing as leakage.
She showed me how to use the Cathaters and I use daily about 6/7, with chaps they are a bit longer and there is a long one and a curly one which fits in your jeans back pocket or coat pocket.
Changed my life, not had a disaster since using, been using for 5 years, always keep a good stock and about 100 in reserve.
I get mine on prescription and use Select Home Delivery service so no need to go to Chemist to pick up. At home I use a 15cm length one but when out and about a compact short one as who likes putting hand low in to public toilet bowl… It is easy to do and liberating.
I am new, well newish, to this problem, what is ISC ? Cheers David
ISC - intermittent self catheterisation
Because my MS has gone undiagnosed for many years I have been living with bladder problems for nearly 20 years - my initial bladder symptoms were put down to age when I was 32!!! So I have been using Oxybutynin for many years and also managing the condition by forward planning etc. Now that they have finally made a diagnosis the Consultant has said I should see a Urologist but I’m thinking no way, forget it, there is no way on God’s earth will I be using catheters OR having injections in the bladder I am as squeamish as hell and I’m thinking I’ve managed for this long I’ll just get on with it. I feel the same about the proposed lumbar puncture. few years ago I had a knee replacement done which has become hyper-mobile and I have never got off the crutches I was given after the op. The medical profession only ever offer drugs - I’m not knocking them, and I know often it is drugs that we need - but they are not always the salvation we crave.
Hi. I have Botox injections in my bladder and it has transformed my life. I self catheterise five or six times in 24 hours because that’s works for me, but the urologist I see says that’s a lot, he suggests three or four times a day.
No more soggy pads six times a day (at least) no more worrying about the whereabouts of accessible toilets, no more worrying about whether I smell or if I’m going to leave a damp patch wherever I sit!
The first couple of times it was done under general anaesthetic, the last two under local. A bit of discomfort is nothing compared to the benefits.
Using Oxybutinin for years isn’t supposed to be a terribly good idea now. Barts Blog has some good information about the risk of older style anticholinergics like Oxybutinin increasing the risk of cognitive impairment and dementia later in life. See ClinicSpeak: anticholinergics increase risk of dementia – Multiple Sclerosis Research Blog and Oxybutynin worsens cognitive impairment – Multiple Sclerosis Research Blog
Seeing a urologist isn’t just about having Botox treatment or using catheters, it’s also about finding ways to improve your bladder so you’re not preparing the ground for trouble later. There are many other drugs used for bladder control that are safer. Many people have found Betmiga to be a good drug, or Tolterodine, among others.
I don’t have an incontinent bladder, mine just won’t work on demand, so I too use intermittent self catheterisation. I use at least 6 catheters per day. I think your urologist is talking nonsense Flowerpot suggesting you cut down on your use of catheters. The less time urine sits in the bladder, the less likely it is to cause UTIs. Obviously the use of catheters could increase your risk of UTIs. But it’s a balance of emptying frequently enough against the chance of contamination.
Best of luck.
Hi, I agree, I will use as many catheters as I feel I need to!
Interesting reading here. I was recently prescribed something to relax my bladder in order for it to hold more. It has helped but… I still have a problem. Having slept all night undisturbed, I used the loo about 6 am. Then about 9am, on getting up from bed i only got as far as the end of it when my bladder let go. I just stood in a puddle of wee and called for husband to bring a cloth. So embarrassing, and fearful of things to come. I am now using pull ups and these are essential as I don’t always get from the living room to the loo in time. Ms just keeps on giving. Going to have to talk to my GP I guess.
Hey everyone, just to be clear - I did say I am squeamish remember! Totes get some people are fine with this, not saying you shouldn’t be lol! Thanks for the info re the tablets I have been taking for 20 years (and I genuinely do mean thanks) I will definitely ask to get those changed - when I eventually do hear back from the hospital as although the diagnosis was made weeks ago, I have not heard another single word from them.
Well Anon/Juniperi, I’ll be interested to see what you come up with as a solution, as you don’t want to be taking drugs and have no intention of using catheters. Do keep us updated.
i suffered so badly with infections. I had one every 5-6 weeks, total nightmare.
i was going every half hour or so.
‘I wasn’t emptying fully and was constantly peeing myself.
dr suggested botox and catheters .
what a difference it’s made to my life. No more accidents. No more infections. I use the catheters 5-6 tines a day…love them. If I’m out and need the loo I pop it in… takes a second. Best part is i stand up and piddle like man, so I’m no where the horrible public toilets.
Even better I haven’t needed any more Botox. My bladder seems to have learned to hold the full amount of urine. I still don’t fully empty. Retain about 150 mils. So just use the catheters and empty fully.
Absolutely fantastic x
Oh I use eve catheters, like a slim lipstick. So very discrete.
Who said I didn’t want to take drugs? I said I would look to change my drugs…but thanks for your interest in my situation