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Amy’s Story: Living with Overactive Bladder

Amy’s Story: Living with Overactive Bladder

23/09/2025

Amy’s Story: Living with Overactive Bladder (OAB)

Amy is a 30 year old high school teacher who lives in Newcastle.

Early experiences and childhood

I’ve had bladder problems for as long as I can remember. I never grew out of bedwetting and was taken to the GP when I was around seven years old. Unfortunately, I didn’t receive any meaningful support or practical advice from my GP. For a long time, my mum would carry me to the toilet at night and this became our normal. I remember other parents doing the same when I went to sleepovers.

As a child, I was very embarrassed and never spoke to my friends about my bladder. It became something I just lived with. On a residential school trip at the age of sixteen, I distinctly remember my mum having to speak to my teachers before I left about how they could support me and my teacher had to discreetly change my bedding for me every morning.

When I saw various GPs, they never gave any indication of what could be causing my bladder leakage and my mum and I were never told about any possible interventions that could help. I was never offered a bladder alarm or medication like many children were and we weren’t even told about incontinence pads as a way of managing the situation at night.

University years and first steps toward diagnosis

At university, the issue became even more difficult to manage. I lived in halls and had to use the laundrette frequently, which I was very self conscious about. During my time at university, I learned to set two alarms during the night to wake myself up to go to the toilet. I didn’t know about incontinence pads and used sanitary pads instead, which were terrible for my skin and not designed for bladder issues.

At the end of my first year at university, my mum contacted the GP for me, as I was too embarrassed to do this myself, and I was referred to a urology team where I grew up. I completed a bladder diary, but the urologist told me I must have filled it out incorrectly as it couldn’t possibly be correct. It was frustrating as I knew I had measured everything properly. That experience left me with no positive memories. I wasn’t asked to repeat the diary and was referred to pelvic floor physiotherapy. I found it very uncomfortable and felt it wasn’t tailored to someone of my age. I didn’t continue with it and just muddled along.

Getting a diagnosis

In 2019, when I was 25, I went to the GP for something unrelated. The doctor was so kind and understanding that I felt comfortable also mentioning my bladder issues. The doctor was brilliant and really took the time to speak to me. I was referred to a urogynaecology service, where I was given medication and referred to a pelvic floor physiotherapist. I saw several physiotherapists over the years and they were all amazing. They were approachable, never made me feel embarrassed and tailored my treatment to someone of my age. Unfortunately, the process was interrupted by COVID. However, I was ultimately referred to a urologist and within a month of being referred, I received a diagnosis of Overactive Bladder (OAB). It was a huge relief to finally have a name for what I had been experiencing for my entire life and I’ll never forget that phone appointment. I’d prepared myself for another battle and had written a whole list of notes before the appointment, but I didn’t need to look at them once.

After the diagnosis, when I thought back, I realised I had actually been experiencing bladder issues in the daytime as well as at night. Even as a very young child, I had always been anxious about where the nearest toilet was and when I could go to the toilet, especially when I was out of the house. I think I had been managing by not drinking properly during the day.

Being treated for OAB

Since receiving a diagnosis, I’ve had excellent care. I’ve tried lots of treatments that unfortunately haven’t worked for me but I’ve been fortunate to have a consistent nurse and urologist who are incredibly supportive and haven’t given up on helping me.

My latest treatment has been a sacral nerve stimulator (SNS). For me, this has worked brilliantly during the day. I don’t experience any pain from the device (most of the time I forget it’s there) and I recovered well from the surgery. Now, my bladder is the best it’s ever been during the day.

Unfortunately, night times are still difficult. I either wake up having wet myself or wake up several times in the night needing the toilet. This really impacts my sleep and overall wellbeing but there are still things that we can try and I’m really hopeful that this will get better in time.

Knowing what I know now, I wish I had pushed harder for a second opinion earlier. I cannot speak highly enough of my current consultant and nurse. They know me as a person and that makes a huge difference. I feel comfortable asking questions and being honest about how I’m feeling. I also think that it is really important to try and have a consistent GP if you are able to, as I have found having a supportive GP who knows me has been really helpful.

However, it’s really frustrating to think that if I had received better information and treatment when I went to the GP as a child, things might not have progressed this far. Throughout my early twenties, I was often labelled as a young, anxious female, which led me to question myself and wonder if they were right.

I also think that it is really important to approach new treatments with an open mind. It is really easy to be swayed by the experiences of others, especially if they are negative, but everyone is different and what doesn’t work for someone might work for you.

Impact on my life

As a child, I didn’t like staying away from home and was so embarrassed about my bladder. Even now, I always have to think ahead when I’m travelling or out and about. People joke that I over pack, (which I do, I like to be prepared for all eventualities!), but it’s also partly because I need to take extra clothes. I’m reluctant to go abroad and haven’t done so in many years and I find that the unpredictability of my condition sometimes makes it hard to look forward to things.

Sleep deprivation also has a real impact on my general wellbeing and is one of the things that I have found the hardest to cope with.

Looking ahead

Now, I’m very open about my condition. I have nothing to hide and don’t feel embarrassed anymore. If there had been more awareness and representation of younger people with OAB when I was younger, things might have been different. Also, when I look at information and resources, they are often aimed at older adults, but people of all ages experience bladder leakage. I want to share my experience as a younger person so that others can see they’re not alone and hopefully access the treatment they deserve.

Great North Run

In September, Amy and her friend Lucy, will be running the Great North Run for The Urology Foundation. Read more and support their journey here.

Find out more about Overactive Bladder

For more details about Overactive Bladder CLICK HERE. The Urology Foundation is calling for positive change in the way OAB is managed. See more information about what we’re calling for HERE.

Download resources on managing bladder leakage on our resources page HERE. This includes: