Two weeks ago I had botox in my bladder. My reason was because of bladder spasms, I can’t release the external sphincter so don’t get leakage as such (unless I have a UTI for some reason). The spasms I have in my bladder are the kind where a small voice is saying “I want a wee, I want a wee, I want a wee” all the flipping time. And vibration makes it worse so travelling any distance is miserable. It’s like taking a child on a journey, and I don’t even have the satisfaction of telling it “you should have gone before we left home”, because I always do!!
I already use ISC because I can’t wee normally at all, I would’ve thought by now I’d have been able to at least reduce the number of times I use a catheter, but it’s still about 6 times a day. And because I’m constantly feeling like I want to go, I test my wee for UTI several times a week, sometimes twice in a day.
I was told that it can take up to two weeks for the botox to work and I’ve even read that it can take longer than that, not that I can understand why this could be the case. (You’d think it would work pretty quickly, but what do I know?)
If it really isn’t going to do the job, I don’t know what else I can do. I’ve tried drugs: Betmiga raised my LFTs, Vesicare gave me really swollen feet and ankles, Oxybutynin was a nightmare for dry mouth, especially combined with other drugs. It seems like my liver is likely to react badly to almost any new drug now so I don’t think I can try another.
Has anyone else had botox for bladder spasms? Did it work? How long before it took effect? Has it failed for anyone else? Has it in fact failed for me, or am I just impatient?
Alternatively, what else do people do when they have an over-excited bladder that has these kinds of spasms? Are there any alternatives that I’ve not thought of?
I have had it once but it didnt work. Next time going to have a stronger dose (300 instead of 200), but still waiting many months later for an appointment.
I’ve had botox three times now and it’s worked well for me. I do use ISC all the time, the urologist advised me to do it 6 times a day. How many times were you hoping to do it?
I do already ISC 6 times per day. It’s not the frequency of emptying that’s the problem, it’s the feeling like I want to go all the time. And I can’t tell whether it’s a genuine need to go or spasms causing the feeling. So I use a catheter and either there’s a dribble or a full flow. There’s no difference in the feeling.
I have been thinking, even if I had an SPC, I’d still be having the spasms, regardless of constant emptying. So for eg, Poll, you take Betmiga and Tolteradine to stop the spasms which come even though you’re emptying. So having an SPC wouldn’t help with my spasm problems. And I can’t take the drugs.
Think I’ll have to ask the urologist. And in any case, it may still work (crossing my fingers).
Hi, I feel very uncomfortable bladder wise today…had this awful feeling of wanting to go despite having an spc, plus betmiga and tolterodine.
Had a wetting accident this week. Oh it is a chuff when you`ve just had your shower, dressed etc and your carer has gone and you do it. Arrrghh! It is sooo bloody annoying.
But my spc is due for change on wed…every 4 weeks…and i get this urgency feeling when it is due.
We think and hope that after going through so many bladder problems, an spc will make life much better. I guess it does about 95% of the time, but that little 5% does throw all our insecurities and disabilities right in our faces and we get all upset all over again!!!
Hi Sue, A year later lol, ive just come across ur post. How u getting on? Our bladders sound related! I use ISU. Had my 1st botox in feb and helped for couple mths and worked immediatley. I had it last Thur and so far doing sweet FA gutted! Pray for a miracle over the next couple of days. Huh! Mel
So botox didn’t work. And the new urologist I saw said that it wouldn’t because in her opinion I don’t have a typical neurogenic bladder.
Then I tried something called Cystistat. This is an instillation that’s syringed into your bladder via the urethra. It adds a layer to the lining of your bladder that is already there. It’s a weekly thing. It’s supposed to help your bladder from feeling irritated by the urine that’s in it. After about 7 weeks, I was feeling a sort of burning urethra. So I stopped.
Then I had an SPC in March of this year.
My poxy bladder has continued its pattern of spasming. So I started taking Oxybutynin and suffered the dry mouth. It didn’t help much so I doubled the dose. It still didn’t help. I’ve recently tried Tolterodine, it made the bladder worse and made my ankles swell. I’ve also had several UTIs since the SPC.
I currently have a wound infection on my SPC site. This seems to be causing blockages of the catheter on and off. I’m not taking any bladder calming drugs because they don’t work. I am taking an antibiotic for the wound infection, but apparently the lab can’t isolate one single bacteria in the bladder. The only thing I know I don’t have is an e.coli infection.
Right at the moment I hate my bladder. I’ve had what feels like bladder spasms for about two years. I constantly feel like I want a wee. The only thing that’s saving me from complete meltdown is that my sphincters are still mostly holding up. They aren’t releasing the urine that is periodically backed up in my bladder. So I’m not incontinent.
I’ve been referred back to the urologist. I wonder if there’s anything I’ve not tried! If there is a miracle cure, I will be shouting its’ success in every way I can think of.
Sorry if all this doesn’t fill you with confidence Mel. Hopefully our bladders are not too alike!
Might seem a bit drastic but then again it depends how much it is a problem to live with; what about looking into a spinal cord stimulator - amongst other painful conditions, SCS’s have been used to treat interstitial cystitis, and chronic bladder pain. I believe a small device is implanted under skin to send mild electrical pulse stimulation to the relevant nerve fibres where your pain is felt which somehow blocks/masks the pain.
Hi feel for u Sue. Ive had v bad issues for bout 3years. Its just getting worse. I was on tolterodine and betmiga for a yr and half but took the plunge with botox in feb. When ive got to go ive got to, i hold myself (try descreetly through my pocket or with my handbag) its so disabling/sole destroying. At least like u i dont get leakage (yet) scpinter works. Botox stopped me being able to go naturaly for 6wks. In heinsite that was amazing. I could actually do school run or shopping without running into nearest cafe. It rules my life Ive had uti for 6wks,getin resistant against lots of antibiotics,nothings shifting it and i never get to see the same gp. My urologist is thinking of the next plan. Your v brave doing the SPC and its so cruel your still getting utis and now wound infection I had eye scan,fingolimob in pipeline. Was told today cysts were found in my eyes. And waiting scan to see whether ive got the hug or not. Going insane Argh. We could defo put the world to rites…x