While it may sound a lot like a ‘crap boast’, one of the things that used to wow my friends was how quickly I could go to the toilet. I used to pride myself on my powerful pissing – I could be in and out of the bathroom surprisingly quickly thanks to my strong stream.

But this hasn’t been the case for several years. For a long time I put the issues I was having with weeing down to Baclofen, a muscle relaxant medication I used to take for my tics. But some tests I had a while back showed I had stress incontinence which meant my bladder leaked when I made strong movements, and having Tourettes means strong movements are something I have plenty of. Specialist physio to strengthen my pelvic floor muscles helped a bit, and I adapted by carrying spare pants and going to the loo at every opportunity.

This has all been relatively stable for some years, not improving when I stopped taking Baclofen, but not worsening either. Then, about a year ago I noticed this starting to change – it took me longer to go to the toilet and where once there had been a stream of wee there was now just a dribble.

I had more physio and a referral to a specialist Neuro Urologist (Neuro Uro for short). Although weeing was getting trickier I still considered it a fairly minor concern compared with my pain and fatigue. Then a few months ago my body ramped things up as it has a frustrating tendency to do, and my life now seems to be ruled by my bladder.

I need to wee much more frequently, and each time it takes longer because only a bit comes out. Last week I kept a record of how often I went to the loo and it was an average of sixteen times in any twenty-four hour period, including five times a night. I’ve been three times already since I started writing this post. I’m finding this fantastically frustrating, my sleep is being disrupted and everything else is taking much longer too.

Today I had a follow-up appointment with my Neuro Uro. He patiently explained the results of the most recent tests. It was complex and at times I struggled to keep up, but fortunately Fran was with me and she made notes and helped me to understand the issues and options.

I essentially have two problems: First, my bladder is very active, wobbling about on its own in what the specialist called a ‘troublesome’ way. I joked that given how much the rest of me moved it wasn’t a surprise if my bladder was wriggly too. The urologist laughed but pointed out that he hadn’t had many referrals form the Tourettes clinic so it was unlikely to relate simply to Tourettes.

The second issue seems to be that the muscles are weak, meaning I’m not emptying my bladder as well as I should, and this means I’m having to go much more often.
The doctor explained that the tricky thing about this combination is that treating one symptom is likely to make the other worse.

Between us we came up with a plan. It’s likely to involve a bit of trial and error because my tics are sure to add some extra challenges. I left the appointment with my head full of wee-based chat but also feeling optimistic that we were working towards a solution.

I’ll make sure I update you on my piss plan soon.