Don’t suffer in silence!

Lisa wishes she’d spoken to doctors sooner about her bladder issues as the solution has given her a new sense of freedom

As I sit down to write this wondering what to say, I realise how my reality could help other women like me. Women suffering from bladder dysfunction and being too embarrassed or nervous to talk about it. I was at that stage almost two years ago. I hadn’t quite got my multiple sclerosis (MS) diagnosis by this point, but I knew something wasn’t right.

I have relapsing remitting MS and it all started six years ago. This was the beginning of my MS journey. I had symptoms but what I didn’t tell anyone other than my parents was that I peed myself for the first time in the kitchen. The worst thing was I had no indication I needed to go and all I could do was stand there helpless.

The shame

I kept this to myself for such a long time and I think it was due to the shame I felt whilst being a patient in hospital needing a commode or bedpan. I’d lost all the sensation from my waist down and had to learn to walk again. Some people saw me as this young person needing help and assistance and couldn’t wrap their head around it. I could feel the judgement and it was shameful.

When I was discharged from hospital after four months, I still didn’t tell anyone about it. If I had to go out, I just wouldn’t drink at all in case I had an accident. I would bring a change of clothes everywhere with me – it was mortifying.

Bladder scan for MS

I kept this hidden for four years and I still don’t know what made me tell my specialist, but I did and I’m so glad I did. In my appointment that day I got given a bladder scan and he told me to go home and come back in the evening as he wanted to investigate.

I had to drink as much fluid as I could and not pass urine. I thought learning to walk again was hard, but this was torture and I failed miserably but I went back, and they compared my first scan to the second one I had and it turned out my bladder was expanding and retaining liquid. My brain wasn’t sending the signal to empty it so when it was full it would empty itself – it didn’t matter where I was.

I was told the best thing would be to self-catheterise and I broke down – yet another thing I had to learn, yet another thing wrong with me. I was referred to urology and when my first visit came along, I was so nervous, but it was actually the best thing I did. I was taught to self-catheterise and, to begin with, it was daunting, and hard to get right, but now it’s given me a new sense of freedom.

This year I’m going to my first festival in over six years because I don’t have the fear that I had before! It’s given me so much freedom and I wish I’d spoken up about this sooner.