I’m Helena and I have bladder and bowel issues.
There I said it.
It’s funny how after years of working for the MS Trust and being very open about my MS, it still makes me wince writing this down.
I interview people with MS and health professionals about all sorts of issues, but THIS one thing is still very hard for me to talk about.
Generally, I think we’re getting much better at talking about bladder and bowel problems. Although there’s a way to go, because the shame I’m feeling is still here.
Let me take you back to 2021.
I was on the train to the London Marathon which I was about to run and was desperate for the loo. The train was full to the brim, much like my bladder, so there was no chance to go there.
By the time I had walked to the marathon village, I was met by portaloo queues so long that I started to cry. The pain was so bad, and I was sure I was going to have an accident.
Luckily some people noticed the state I was in and let me go past. Phew deed done, and I felt a little better.
But half an hour later, I needed the loo again. And by the time I got to the start line, I was desperate all over. The whole marathon became a race to get to the next toilet. And I was in so much pain, I had to stop at St John Ambulance for painkillers.
At the finish line, I was a mess. I was in pain and exhausted and had leaked. I mean I had just run a blooming marathon, but my bladder issues left me feeling horrible.
Now, I fully understand that running a marathon isn’t something everyone does, and perhaps some of the issues were down to nerves.
But in the weeks after the marathon, the pain and the urgency continued, and my mood just dropped. I felt hopeless.
I didn’t want to run – despite loving it and feeling privileged that I can - because I worried it might all happen again. I was in a rather dark place, but as a glass half-full person, I tried very hard not to let these feelings shine through.
People would ask: “How was the marathon, did you love it?” And I would just smile and say: “Well!”
I did tell my closest friends and family what was going on, and they encouraged me to talk to my MS nurse. I still needed to have words with myself, even though I tell others there’s nothing health professionals haven’t heard before. But it’s just so hard to walk the walk sometimes.
My pain didn’t go away and I was up several times in the night, not really sleeping much and shattered all the time. The final straw was when I went to the loo five times in an hour of going to bed!
The next day I emailed my MS nurse asking for a referral to the bladder and bowel clinic. Oh yeah, I haven’t mentioned the bowel bit yet, have I? See I am still trying to wriggle out of it.
Even before I was diagnosed with MS, I struggled with constipation. Who knows, maybe it was a symptom all along? I eat lots of fibre and vegetables; on the whole I’d say my diet is healthy. But I still couldn’t go. It left me feeling horribly bloated and uncomfortable for days.
Back to running...
Funny how it can help with the bowels... Great, huh? But not while running! Mostly, I was lucky to have a toilet close by in a park or supermarket, but other times I’d be on a trail run when my constipated stomach screamed it was time to go. I have to admit visiting some bushes on occasion. It’s horrible and you feel really ashamed. Luckily the running community are a lovely bunch and if you ever start talking toilets, they’ll often share a poo-related story. It really helps to normalise things. Which is why I decided to share this, even though my brain is screaming that I’m oversharing!
So yes, I tackled both issues at the clinic. I wish I could say it was easy once I was there, but I struggled. My nerves got to me, and I babbled. I did end up with some sort of plan in place though.
The bowel irrigation system honestly changed my life. It meant I didn’t have to worry about running with a constipated stomach anymore.
Using it was a bit weird, until I got the hang of it. Now it’s easy. A nurse came to my house and showed me how it worked and called me afterwards to check how I’d got on. She kept following up for a few months as well.
Bladder-wise it’s been a trickier journey, and I am not quite there yet. To complicate things, I was diagnosed with Adenomyosis, which was unrelated to my MS. It turned out that the pain was actually caused by this. It’s managed with hormone treatment, and I feel happier and am in less pain now.
I still struggle at night and feel like my bladder doesn’t empty properly. I probably need to pull up my big girl pants and ask for another visit to the bladder clinic to address this too.
It’s true that I am not alone with these problems. Our research shows that six out of 10 of you find bladder and bowel issues impact your mental health more than most other MS symptoms. They can be a real hindrance for going out and living your life, worrying if you’ll find a toilet in time. It’s easy to see how these can bring you down and leave you feeling isolated.
I am sure many of you will have experienced similar symptoms or bowel incontinence too, so I hope that by putting this out there you can feel a little less alone. Because there are lots of practical solutions and treatments available if only you’d take that difficult first step of asking your MS nurse or GP for help. For me this was probably the bigger blockage (pardon the pun) of all.
