isaacson72 13/03/17
Last reply 9 months ago
Bladder botox?

I can’t figure out how to search on this website so my apologies if this has been discussed ad nauseam already.

I’ve got that “have to pee” feeling constantly. I have seen the urologist at least 4 times now, had every test under the sun (some rather unpleasant & embarrassing). He says there is nothing really wrong, my bladder is just sensitive and is probably MS related (neuro says definitely MS related). I’ve been on 3 different bladder medications. This last one is mybetriq (spelling that wrong, I’m sure). I was on 25 mg. Didn’t help. Moved me to 50 mg. Doesn’t really help & now has the added problem that when I do pee, it takes FOREVER. During the day I can cope fine. It’s when I lie down at night that I have to get up every 5 minutes. On a good night, I get up 3 times before I fall asleep. On a bad night, it can be 10-15 times in an hour – thankfully this is pretty rare. It is not a UTI, it is not a voiding issue. I’ve tried hypnotherapy too, to “trick” my brain into telling my bladder to relax when I lie down at night. Granted, it’s been only 1 week with that but that isn’t doing anything either.

He said the next course of action is botox. My question is, if 3 medications did not help, what good will the botox do? Clearly this 3rd medication IS helping my bladder relax, given how difficult it can be at times to pee, but it is not helping the issue when I lie down at night. So an unpleasant procedure to relax my bladder doesn’t seem like it would work. But…. ??? Thoughts, from other MS folks?

Thanks,
Michelle

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potter
11 months ago

I haven’t had this problem but I have read good things about Botox treatment. The MSers I have read posting about it said that they had to have it done every 6 months, it was wonderful and well worth the effort. Potter


stumbler
11 months ago

@isaacson72 , these issues are immensely frustrating. They impact your waking life and make nightimes an absolute misery. And we all need quality sleep.

Firstly, has Intermittent Self-Catheterisation (ISC) been mentioned? This may be of assistance as retention causes a lot of problems and ISC ensures your bladder is fully emptied.

As for Botox, it was used in this kind of procedure, before the vanity industry got hold of it.

So, would it work? I can talk from personal experience when I say yes. As with cosmetic applications, it stiffens/tightens the skin. That’s what it does to the bladder, it numbs it to stop it continually sending messages to your brain saying you need to go.

However, it only lasts for around 9 months, then you need it done again.

But, the relief you get from not being chained to the toilet………….


tessa
11 months ago

I love this site and all the help it gives but in my opinion the search engine is not really very efficient, we often endlesly rehash problems that have been debated quite recently. I don’t object to that at all as the support is really good but sometimes it would be useful to be able to access info more easily. ( for example ” whhelchairs ir mobility scooters” Not sure how this could be done as am not a computer expert.
If you go into google search for a ” problem” it can come up with shift debates more easily. This has been discussed in the past !


mshackney
11 months ago

Hi

I had PTNS in September (a 12 week course) and now have top ups every 5 weeks https://www.nice.org.uk/guidance/ipg362

It has made a huge difference to me. I saw a neuro urologist at UCLH who recommended this before drugs. They are now hoping to trial people having machines at home or putting an implant in your ankle and you can stimulate this with some sort of wireless technology. (Didn’t really understand)

Anyway is this something worth looking at? Just speaking to others who are having treatment at same time I go in, all think is pretty good.


isaacson72
11 months ago

@mshackney – my urologist mentioned that ankle nerve stimulation idea if the botox didn’t work. It’s interesting, isn’t it? It seems like, at least here in the states, that would require weekly trips to the urologist for a long, long time. I would try this but only as a last result, just because of the time crunch.

@stumbler – thank you. I’ve had every test under the sun done in the last couple of months, so I confirmed it’s not a voiding issue. Apparently it’s just “sensitive.” I feel like I have to go when there is very little liquid in my bladder. I made the appointment for the botox. He said about 30% of patients have to self-catheterize for a week or two afterwards because it works TOO well, but once it wears off a little bit, then it lasts for about 6-8 months. I could have gone tomorrow to his regular office in Seattle for the procedure but the stress of driving to/in the big city, missing work, finding & paying for parking, trying to get back in town with enough time to get to my son’s track meet (traffic around here is horrible)…. I can only handle so much! He has another office near my work and can see me there, stress-free parking/driving/timing, March 28. Hope this works! Thanks.


stumbler
11 months ago

I don’t think you’ll be disappointed with the results, @isaacson72 .


lm24
11 months ago

I’ve had 3 rounds of Botox in my bladder over the past few years and it works wonders. It tends to last approx 9-12mths with me. It gives you the control back as you’re not constantly obsessing about toilets and you certainly don’t get the urgency and frequency. Only thing I warn you about is that it pretty much takes away all feelings so I have to use catheters but I feel that can be a positive too as you know you’ve completely emptied your bladder like just before you go out somewhere. I would definitely recommend Botox!


isaacson72
11 months ago

@lm24, do you use catheters all the time?? My urologist told me it happens mostly during the first week or two after the injection but after it wore off a little bit, it was fine. Doesn’t using catheters all the time increase the risk for a UTI? Must still be awesome though if you’re fine with catheters!! I don’t mind the constant urgency so much during the day. It’s been going on so long, I know where all the bathrooms are pretty much everywhere I go (and which ones are the cleanest). It’s just at night that kills me. I was exhausted when I went to bed last night, but had to get up SIX times to pee in about 90 minutes before I finally fell asleep. I get close to dehydrating myself every evening but that doesn’t seem to help at all. I would do just about anything to crawl into bed one night and stay there until my alarm goes off in the morning.


lm24
11 months ago

Hi, I do use catheters all the time as I do have a retention problem and don’t empty my bladder properly, the catheters don’t cause infections but not emptying my bladder properly I believe would. I feel using catheters give me the control back I use about 6 a day depending on how much I drink. It’s tricky at first but now I can do it without thinking half asleep during the night. I get up once during the night but when I first got the Botox I could sleep straight through!


isaacson72
11 months ago

Thank you! I have been tested a few times for that retention issue – thankfully, that’s not the issue with me so I’m thinking maybe (hopefully) I won’t end up having to catheterize all the time?? I am at the point though that even if I did, it would be worth it, just to sleep!

Thanks for everybody’s responses. 🙂


isaacson72
10 months ago

I had the botox done on Tuesday. Fingers crossed this does the trick because I’m not too keen on doing that again. Nobody told me it was 10 shots inside there! I figured 1, maybe 2, but 10 was a definite surprise. Then the feeling that I was peeing knives for 24-36 hours afterwards wasn’t pleasant either (I drank so much water the last 48 hours that I feel like I’m going to float away but it did help with the pain).

But, I am happy to report that last night I went to bed, and I STAYED THERE. Fingers crossed it wasn’t a fluke. The doctor said I really wouldn’t notice too much of a change for a couple of weeks but I’m hoping this was the beginning of a wonderful life change.

Holy heck that hurt, though.


reck76
10 months ago

I’m very happy I found this thread! I am on a waiting list to get Botox in my bladder and I can’t wait! I have read mostly great reviews except from people who were not accustomed to self cathetering (I have been doing it for 2 years and it’s been incredibly helpful) I tried Vesicare and although it worked at slowing the urgency, the dry eye/crankiness/lethargy that accompanied it was not worth it.
Oh to have a full nights sleep and put an end wearing giant pads everyday all day!!
Best wishes to all 😊


isaacson72
9 months ago

1 month after the botox and I’d say it made the problem about 60-65% better, which is pretty good. I think the majority of nights, I go to bed & get up to pee (before I fall asleep) maybe once, sometimes not at all. So in that respect — the most important one — it did help! But I have other times when I seem to have to go every 10 minutes. When I drink a 16 oz glass of water, I swear I pee out about 100 oz within one hour. No idea how that can happen, but it does.

But all in all, after 1 month, I’d call this a success. I don’t care how many times I have to go during the day. It’s inconvenient to stop all the time at a bathroom, but my real concern was around bedtime and it has helped immensely for that.

Not looking forward to future shots of botox but I’ll cross that bridge later. 🙂

-Michelle


stumbler
9 months ago

@isaacson72 , I’m pleased that you’ve received some decent benefit. 🙂

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