Actually there’s not really any useful update. I’m still waiting, and am pretty much at the end of my tether with soggy pads and damp knickers.
However, I’ve had the urodynamics test, that wasn’t as bad as I feared, but my bladder didn’t behave as badly as it does usually. Sod’s law I suppose.
I’ve also had my pre op assessment which was all good. I have the blood pressure of a teenager, so I must be doing something right.
So, I’m on the list as urgent. The pre op assessment lasts ten weeks apparently. We’re going on holiday for two weeks on 15th December- anyone willing to place any bets as to whether it’ll be done before then?
If not it’s going to be one suitcase for clothes and one for pads and catheters! Oh joy!!
Bloody blinking bladders. One thing you also need to know, that no one will tell you till later is that the Botox won’t kick in on day one. So even if you had it 3 days before you go away, it wouldn’t necessarily work until you got back home.
My urodynamics test didn’t show up any spasms either. But then it seems that I was misdiagnosed with overactive / neurogenic bladder (maybe?) and the botox not only didn’t help me, it may have made matters worse!
But then your incontinence should be helped by the botox even if the urodynamics didn’t show up quite what was expected.
I’ve now had my course of 6 installations of Cystistat. This is a substance that is ‘instilled’ into the bladder through a catheter that is supposed to reinforce the bladder wall and should stop the constant urge to go. So far it’s not been spectacularly successful. In fact so far it’s done pretty much nothing. I still spend almost my entire day wanting a wee. I’ve been trying to decrease the number of times I ISC through the day. I’m currently trying to stick to 5. But at least having had the botox, I know that regardless of feeling, I won’t be incontinent. I just spend all day uncomfortable, but dry.
I hope your botox happens soon, and I hope it kicks in very quickly. And that it solves the problem.
As for me, I’m waiting a month, having another Cystistat instillation and then deciding whether it’s worked or not. So far I’m thinking not. So then it will be another wait to see the urologist and see what’s suggested next.