Still waiting

Hello and happy new year to you all. I’m still waiting for Botox on my bladder. I have an overactive bladder, but it doesn’t empty fully. Those of you who have followed this saga will know I’ve tried solefenacin, tolteradine, oxybutynin and betmiga. I also self catheterise. In October I saw a lovely urologist who told me he could fix this with Botox. At last I thought. He told me he’d put me on the list for urgent treatment. I had my pre-op assessment on 1st November, had urodynamics about a week later, I saw a consultant anaesthetist last Wednesday (because of a previous anaesthesia problem). She assured me I can have a general anaesthetic and said she’d write to the urologist and ask him to put me on the list. I thought I was already on the list! My pre-op assessment expires today. Maybe they’re hoping if they keep me waiting long enough I’ll change my mind and they won’t have to bother!

Aw knickers. Soggy ones at that. I can’t believe you’re still waiting Eve.

I really hope they get on with it. Have you tried speaking to PALS? It might be worth it. At least get you shifted up the queue a tiny bit. Why do they have to do it with a general anaesthetic? Is it your choice or theirs? I had it with a local, I’m wondering if that’s what’s holding it up.


The urologist says it’s because they inject the bladder in twenty places. The anaesthetist also says this is the best way. She also said they’d rather not do spinals on people with MS. Apart from this long wait I also wonder what happens and how long I might have to wait for it to be repeated.

How are you Sue?

Hi, I was offered botox for my bladder, but decided to try patches, which I don’t like now. They made me itch!

I’ve had no bypasses, except when on the loo, which don’t matter, for a good while.

So I decided not to have botox. But just a few minutes ago, I thought I was going to! Adjusted my belly and pipework and shifted the blockage!

I see the uro soon.

Sounds like you ought to be ringing your uros secretary!


Hello again

My botox was a local anaesthetic. So no general or spinal or anything else required.

However, as you know, the botox was worse than useless. So my new urologist (the old one retired) referred me for a 6 week course of weekly instillations of Cystistat. This is to reinforce the bladder wall. It’s mostly used for people with interstitial cystitis, or people who get a load of UTIs. The theory is that improving the bladder wall is a good thing for someone who’s constantly wanting a wee but who doesn’t have a typical neurogenic bladder or constant UTIs.

But. After 5 weeks of the Cystistat, in December, I had a feeling in the urethra like there was inflammation or an infection. Using a catheter has felt terrible. Afterwards I’ve still felt like I want to go. Sometimes it’s felt like burning. So I didn’t have the last instillation. I have no infection but still have the weird feeling in my urethra.

So I’m seeing the urologist on Friday. No idea what to do about it all. It seems like everything I try to do to improve matters goes wrong and I’m now in a worse place than I was last summer. I still feel like I need a wee most of the time. The urethra still feels just wrong. The only positive is that I’m not incontinent. But then my problem has always been the reverse of incontinence.

Will let you know … hoping the result of Fridays appointment isn’t another treatment that makes it worse again.