“They called me Toilet Tracy!” – one woman’s MS bladder battle she finally won

Tracey Blamire finally found something to help with her MS bladder. Here she explains her journey

I was diagnosed with multiple sclerosis (MS) in May 2021. I saw a neurologist in January 2021 during the Covid lockdown after I lost the vision in my right eye and had optic neuritis. Prior to this, I’d been seeing doctors and consultants for nearly eight years, and I kept being told that there was nothing wrong with me!

From my experience as a personal trainer and biomechanics coach I thought the issues were related to my nerves and asked to be referred to a neurologist, but was kept being told, “No, your nerves are fine!”

I’ve had issues with my bladder for so many years that I can’t remember exactly how long it’s been. But it did get worse closer to having the diagnosis and probably also due to becoming peri-menopausal, where it became harder to hold my bladder, and embarrassingly I had quite a few accidents.

My husband and kids, who are now 15 and 12, have always called me ‘Toilet Tracey’, and whenever we went anywhere, I always had to use every toilet we came across. It got to the point where I have literally contemplated creating a ‘Toilet Tourist Guide’ and taking bathroom selfies as proof of my discoveries!

Medical help

I went to the GP around ten years ago about needing the toilet so frequently and desperately. I particularly remember because my son was about five and had started infant school and the not-very-friendly office manager there used to make rude comments to me about my toilet use. I would always use the toilet last thing before leaving the house and the school was only 5-10 minutes away.

My doctor gave me blood tests to check my kidney function. After these tests showed there were no issues, they then referred me to the hospital for a bladder ultrasound to check that I was emptying my bladder fully, which I was.

At the appointment with my neurologist, when he diagnosed me with MS, I discussed the bladder issues with him, and he referred me to an MS nurse who had done specialist training on bladder problems with MS patients.

On my first appointment, she did the ultrasound (I had to go in with a full bladder, which was so uncomfortable I could have cried!) so she could first see that my bladder was full. I then emptied my bladder and she checked with ultrasound that it was fully empty, which it was.

Her first recommendation was to cut out caffeine and then go back to see her in four to six weeks to see if that had improved my symptoms.

After going back to see her, having cut out caffeine completely, but still needing the toilet desperately and frequently, she put me on Mirabegron. This is prescription-only medication that works on the bladder muscles to increase the amount of urine the bladder can hold. I took 50mg of that from June to August 2021 but I stopped because I didn’t see much improvement, and it made me feel tired, sick and headachey.

Then the following March I had a breakthrough. I started taking Tolterodine, a 4mg modified release capsule each day. I noticed an improvement within a week! It’s really helped a lot and things are much better now which is a relief. I was getting to the stage where I couldn’t even take the dog out for a quick walk without the urgent need to pee.