How Botox gave me control over my MS bladder

21 February 2024

Botox syringe

With anxiety inducing trips out and a barely existent social life, Kirsty’s MS bladder issues were beginning to take over. Here, she takes us through her Botox journey to independence.

As far back as I can remember, I’ve always had bladder issues due to spinal damage at birth.

So, I’ve always been on medication. Roll the clock forwards to 2016 when I was first diagnosed with MS and things got worse. A lot worse …

The tablets I was taking stopped working and I started noticing my bladder getting angrier.

Cue needing to go to the toilet even more often, going from zero to bursting in seconds and only just making it in time. 

I was then put on Mirabegron and Solifenacin, which seemed to calm the symptoms down.

A few years later, I started having lots of accidents. This brought on heavy bouts of anxiety, especially when I was out and about.

I was referred to an incontinence team who prescribed me stick on pads for my underwear, however they didn’t provide me enough protection.

I often had to change my clothing. Anyone with mobility problems knows that’s a difficult task in itself, right?

My bladder was ruling my life.

I was planning days out around toilet locations.

Plus, I was only comfortable going out with people who understood what was happening, which only added to the isolation.

I decided I needed to do something to lessen my anxiety, so I found some ‘bladder pants’, which is what I call them to make them feel less childlike. Their official name is ‘incontinence underwear’. They hold in most of my accidents.

Next up, I invested in some washable bed pads to sit on. They’re amazing! I would even take them out with me to lay over chairs. They also offered some security at work.

But, it was still mentally exhausting having accidents. 

So, when a mostly remote job arose at my company, I jumped at the chance!

At my next appointment, my urologist suggested we try Botox injections in my bladder.

They said I would need to be able to self-catheterise, as my bladder may retain urine. I was shown how to do this by a lovely nurse, but I just couldn’t do it. I was worried that this might mean I couldn’t start Botox!

They agreed, however, that the positives of Botox outweighed the negatives. The day came for me to get my injections and I was so nervous!

It really wasn’t that bad, and I didn’t need any pain medication. My legs weren’t very happy though. With every injection came a sudden spasm!

They only gave me half of the ‘normal’ dose to reduce the risk of urine retention. I noticed a difference quickly.

I didn’t feel that ‘bursting’ sensation and I was visiting the lavatory less frequently.

Three weeks later, I went for a bladder check-up with a different team. Unfortunately, my bladder wasn’t emptying and I had over 600ml in it. The strangest part was that I didn’t even need the toilet!

They decided to fit a catheter, which I had for around a month. For me, it was uncomfortable and painful. 

Feeling defeated, I arrived for an appointment with the team who did the initial round of Botox injections. They took the catheter straight out as they said it wasn’t needed.

The Botox team advised me to go to the toilet every three to four hours. I never thought I’d have to remind myself to go to the toilet!

As a result of the treatment, my bladder is much better! I can go on long car journeys and drink as much as I want.

Gone are the worries about needing the toilet five times an hour.

Plus, I don’t have as many accidents anymore. I think I’ve had about two in the last four months, instead of accidents most days!

For me, Botox has been a life changer. I even get more sleep now as I’m not waking as often in the night.

For the first time in my life, my bladder doesn’t rule me.

My husband, family and friends have been so supportive, and I’m now much more open with people about my bladder issues. None of these things are my fault and I shouldn’t feel embarrassed by them or afraid to ask for help.

We’ve all got this – we can do it!