Last Monday (17th) I had an appointment with a urologist at the Royal Salford. This was my first appointment with an actual urologist, previously I've only seen the incontinence team at Aberystwyth. I had been sent a booklet about what to expect which threatened fun tests such as a prostate biopsy and a flexible cystoscopy, neither sound fun.
It turned out to not be a series of scary tests but, rather, a long conversation and a medical examination. It seems that I've already exhausted quite a lot of the options such as medication and the urologist felt that doing things like bladder control retraining was unlikely to help due to my issues most likely being down to the MS, I agreed. As it's neurological rather than physiological it just wouldn't help, I can't physically stop myself from going and I don't tend to leak - it's usually all or nothing! I've also already done things like switch to decaff drinks most of the time. Most days I only have 1 real coffee and then switch to decaff tea n coffee, and plenty of water.
I explained that I'm pretty happy with what I'm doing now with the sheath catheters and using an intermittent catheter (ISC) before bed, it's working alright for me. Although I did also mention that the ISC before bed is becoming increasingly less effective. I'm now up a couple of times a night to go to the toilet and do now occassionally leak during the night.
She told me that the next level of treatment would be bladder Botox. This isn't something entirely new to me, I remember reading about it when I lived in Oxford - so 6 or 7 years ago. Although it was only available privately then. As an aside, that made me realise how long I've been dealing with bladder issues although it was nowhere near as bad back then. The idea is that helps to relax bladder muscle which helps to increase bladder size and reduce leaking. It also works on communication between bladder and brain. Sounds good. The obvious issues here are side effects and getting the Botox into the bladder. I agreed to the Botox, it works well for a lot of people although typically for ~6 months and then another course of injection(s?) is required.
How is it delivered?
Let's start with how the Botox is injected. It's done using a cystoscope (so a small flexible camera) sent up the urethra to see where to inject. This can be done using general, local or no anesthetic. I declined general as I don't want that at all, I'm unsure if I'll get local or none though - I'm OK with either. It only takes 30 minutes and then I can be on my way, sounds good to me.
There's always side effects aren't there? The main side effect that puts people off is losing the ability to empty the bladder. According to this booklet this doesn't happen for 93.5% of patients and, if it does, usually only lasts for up to 6 weeks. The solution to this is that the patient has to use intermittent catheterisation every 3-4 hours. For me, this is basically a complete non-issue as I'm used to doing it nightly anyway. Crack on, I say.
Overall feeling about this
I'm feeling generally optimistic about this, although the waiting list is pretty long so it won't happen for a while. Whilst the sheath catheters work they are a bit of a hassle and twice now I've had bags spring a leak, once when I was away from home for a couple of nights and didn't have a spare (lesson learned). It'd be nice to not have to bother with them and also not have to worry about sleeping away from home - I just wear the catheter through the night at the moment which is a) uncomfortable and b) still quite worrysome. We shall see and I'm remaining hopeful...