Overactive bladder and Urge Incontinence – My Story

Overactive bladder and urge incontinence do not just affect older people. Caroline Mills was only 25 when this distressing condition started. It would take many years – and a huge amount of determination – before Caroline had effective treatment with specialist bladder surgery.

“I was 25 when it all started. An urge to go to the toilet would come and I wouldn’t be able to hold on. I would wet myself and it wasn’t just a little – I would empty my whole bladder and become drenched. I remember on one occasion being at a Westlife concert at the NEC. The queues at concerts are always terrible and I stood there knowing I wasn’t going to make it. You feel so embarrassed and upset.

“It started quickly and was immediately quite severe, so I went to see my GP. I was just told that I had an overactive bladder and was given exercises to do and a chart to fill in. Nothing changed and I went back to my GP surgery several times, always being told it was not serious and all I needed to do was to retrain my bladder. In the end, my husband came with me so that we could ask for a referral to a specialist together. By that stage, I was so upset that I ended up in floods of tears but finally, I got the referral that I needed.

“In hospital, I had a test called urodynamics which showed my problem was very severe and I was then sent for a week of bladder retraining. It was the worst week of my life. I had to stay in hospital and together with a 70-year-old woman, urinate into a bed pan and measure everything I drank and emptied. But the middle of the week, I was desperately unhappy and it was clear that the approach was not working. The doctor said I needed to have an MRI scan and that was how, at the age of 28, I found out that I had multiple sclerosis.

“It came as a huge shock – no-one had mentioned it or suggested that it could be the cause of my incontinence. My auntie had MS and died young, so I knew what the condition could mean for the future.

“After the shock of the MS, there was still no answer to my incontinence. I was then given Botox injections and at first, they did work. I had eight sets of injections, spaced about six months apart. But the effect wore off and the last two treatments had very little benefit at all. I was prescribed some medication which helped to slow things down. I could take one when I was going out, but it was dangerous to take them too often. There was really no effective solution and I was back to square one

“My consultant left and Mr Belal took over my care and I felt that he really wanted to sort things out. We discussed sacral neuromodulation but after further tests, Mr Belal explained that my condition was too severe; it wouldn’t work. He asked how I would feel about an operation called bladder augmentation, which involves taking part of the bowel to increase the size of the bladder. I also had a long discussion with a specialist nurse about it – they explained that it was a big operation and it would take time to recover. By this time, my son Hayden had been born and was coming up to his first birthday. I knew it wouldn’t be easy recovering from a big operation and looking after a young child, but I needed a long term solution. Tests showed that if things carried on as they were, I would be at risk of damaging my kidneys.

“I was told to expect to be in hospital for two weeks after my operation. But surgery went well and I asked whether it was possible for me to return home and be with my family as soon as possible. Because I was recovering well, Mr Belal allowed me to leave after six days in hospital. Overall, it took about seven weeks to fully recover and get back to normal. The hardest thing in the early weeks was not being able to pick up Hayden.

“I came home from hospital with a catheter, but as soon as it was removed two weeks later, I was completely dry. It was absolutely brilliant – it is hard to put into words what a difference it made. I could enjoy going out with my husband and my friends again – before surgery, I’d got to the point of hardly going out at all. I was free from carrying around large pads every time I left the house and free from worrying all the time about being caught out and embarrassed.

“I have to self-catheterise in order to empty my bladder. Not being able to go to the toilet ‘normally’ might seem like a big price to pay, but to me, it is outweighed by being dry. I had so many years of severe incontinence, it really isn’t a major problem and it is certainly worthwhile in order to finally be dry.

“Fortunately, I have not been much affected by MS. If I am out shopping for a long time, my legs can get shaky and I tend to trip up quite easily, but those are the only symptoms and when I notice them, I know it is time to rest.

“People say I’ve been very positive and strong through it all. I’m very aware that incontinence can get you down – you worry about being embarrassed and so you go out less and you can lose your confidence. My advice would be to seek treatment and be persistent. I had to go back to my GP several times and it took years to find a long term solution but I am so glad that we got there in the end. It has made such a huge, positive difference to my life”