Information for Men

Neville Parnell’s Story

I would like to take this opportunity to tell my story about living with incontinence and hopefully show that with the correct treatment and support, bladder dysfunction need not be life limiting.

Every child grows at different rates, some walk sooner than others, some talk sooner than others, some learn to read sooner than others. As a young child, I went through all the normal stages of nappies and potty training and in the daytime soon gained bladder control, the only big difference with me was that I never had a single dry night. I wet the bed every night, waking up in cold soaking wet pyjamas and bedding. From an early age, over the years my parents took me to see many doctors who tried medicines, alarms and other methods to try to stop the bedwetting, but none of them worked.

For me, I suppose it was during my time at primary school that I first began to realise the effects that nocturnal enuresis, the medical term for bedwetting, would have on my life. Suddenly I found myself doing something that would continue for the next 30 years - making excuses.

As a child I joined the Cubs and they were often going on trips. I used to think of any excuse I could, not to go. One year it would be my gran is coming to stay, the next year it would be we were going on holiday. Every year it was the same problem, just a different excuse.

Even in secondary school, I would find the same problems would arise again and again. The School would arrange skiing trips, all my friends would be going and I was desperate to go but the fear of being found out and the stigma attached to being “the boy who wets the bed” was too much. I would use yet another excuse –too cold for me, I don’t enjoy the snow. I even found a weekend job so that I could always use the excuse –I would love to, but I have to work.

With incontinence it feels like you are the only one and you have a secret you cannot share. But the fact is, this could not be further from the truth.

As I got older, the effect upon my life became greater, the bed-wetting problem was life limiting and affecting my quality of life more and more.
It was very hard to form any long term relationships. I would find myself having to make excuses all of the time and on the occasions that I was unable to make excuses, I would have to stay awake for fear of the embarrassment of wetting the bed. The odd night was manageable, but holidays were totally exhausting having to stay awake night after night. Even though I got engaged, I could never tell my girlfriend about my problem, so to me, hiding my problem was even more important than getting married.

Even my career choices have been dictated by my nocturnal enuresis. Training courses that would mean staying awake at night and working away were impossible.

Over the years, I saw many doctors and tried many different treatments but thinking back, I can never recall seeing a Urologist, especially during the earlier years.
How many people when they go to their doctor are asked about their bladder health? During routine visits the GP will often enquire about smoking, drinking, weight etc, but never do they ask about bladder health. So we end up with the situation where doctors don’t ask, and patients don’t tell.

My life suddenly changed about seven years ago when I sought the help of the Specialist Female and Restorative Urology Department at University College London Hospital (UCLH) who are world renowned in dealing with complex urological cases. After carrying out a number of tests, it was agreed that the best solution would be to carry out a series of operations to combat the problem. Initially an artificial urinary sphincter was implanted. After this had all healed and was functioning correctly, I was admitted into hospital for the second stage, which involved carrying out bladder augmentation to increase the size of the bladder and carrying out a Mitrofanoff procedure. Surgery went very well with no complications and after just a week in hospital I was allowed home.

A few weeks later it was back to UCLH to be taught how to care for the stoma, with the guidance of the specialist nurses, I soon managed to learn how to self-catheterise and carry out the bladder washouts.

From that day onwards I have been dry every night. The difference to my quality of life was huge. For the first time ever, instead of waking up cold and wet I was waking up warm and dry.

Even though I have undergone some quite complex surgery to correct my bladder control problems, due to the skill and dedication and support given by all at UCLH, having the Mitrofanoff procedure really has changed my life. For me the difference was not only at night but it also gave me a new lease of life, suddenly I found myself with more energy due to being able to have a proper, uninterrupted nights sleep.

Where previously I had begun to withdraw socially and emotionally, suddenly I found my confidence had returned and I was able to do so many things that I was not able to do before, nor ever thought would be possible.

The whole experience has inspired me to give something back and break down one of the last taboo subjects of the 21st Century. So in 2009, I spoke to Mr Jeremy Ockrim, Consultant Urologist at UCLH about setting up a charity to help others suffering from bladder dysfunction and between us we set up The Parnell Fund, which is now a charitable fund within UCLH Charities.

Although I had never run before, I have been able to run a number of marathons and have completed some pretty daunting challenges including:

  • Running the Paris Marathon then continued running from Paris to London to run in the London Marathon the following weekend.
  • An extreme triathlon which involved seven days of running, riding and rowing all the way from Lands End to London.

I have also been able to go away and climb Mount Kilimanjaro safe in the knowledge that I would wake up warm and dry every morning, with no embarrassing
leakage. Waking up in the morning, in a tent on the side of a mountain looking down at the clouds where even the water in the drinking bottles has frozen during the night, may not be everybody’s idea of fun but to me, it showed how far I had come in my journey in living with incontinence.

Even through the torrential rain we all had to endure half way up a mountain in sunny Greece ensured we all got very cold and wet during last year’s Mount Olympus challenge. Hopefully this year’s Mount Etna Challenge will be a little kinder to us.

But for me, most importantly, this year I have met a very special person who I am able to share my life with without fear or embarrassment of wetting the bed.
All of this would have been unimaginable if it was not for the Mitrofanoff procedure.

Suffering from Incontinence also made me realise not only just how many people suffer from bladder control problems, but also how many people are like me and never talk about their bladder control problems.

It is estimated 6 million people in the UK suffer some form of incontinence.

In 2010, nearly 4.8 million Australians – comprising over a quarter of the Australian population aged 15 years or over, were living with incontinence.
In truth both of these figures will be much, much higher.

Urinary incontinence in men and women is a relatively common problem– regardless of their age, gender or cultural background.

Women are more likely to be incontinent than men – with the life stages of pregnancy and menopause a major contributing factor.

Often both men and women tend to ignore their symptoms and suffer in silence for many years, waiting on average 4 years before seeking help.

Sometimes masking a more serious underlying problem that can and should be treated.

But as common as incontinence is, men often appear to be more reluctant than women to seek medical help and advice.

The chances are that you have never met a man who admits to suffering from it. It’s not exactly a topic men are anxious to discuss after a game of squash or a pint down the local pub.

We need to overcome the barriers of embarrassment and awkwardness and encourage people to discuss bladder issues, not only with health professionals but also friends and family.

Neville

Jamie's Story

Hello, 

My name is Jamie Shannon and this is my journey.

I am a male who is 31 years old and have now had my Mitrofanoff for about 15 years. Here is just a brief outline of what I had done.

My problems began at birth. I was born with Epispadias, a rare condition which not many people have. I had a lot of reconstruction work done and spent a lot of time in and out of hospital. I don't really remember what I was like when I was younger, but I could not stop wetting myself till I was 10 years old. As you can imagine was not easy to deal with at the time. This is when I had a artificial sphincter put in to help keep me dry. It worked and was great, but then after a few years the complete opposite happened where I struggled to empty my bladder and then started to suffer lots of infections. I tried cathing urethrally and that was a complete nightmare and did not change the rate of infections. 

Then I had the procedure that has saved my life, the Mitrofanoff. It has really saved my life. My life is not perfect but the Mitrofanoff has allowed me to live a normal life, go out and have a social life. I work full time in a office and have had the same job for 12 years. Since the operation I have not had to have any redo's or revision's and am very happy with everything. Infections are down to for a year rather than for a month. I am not a very active person but that's not to do with anything other than pure laziness. 

The hardest thing that I have found about it all is the mental side. In 2011 I decided to do some research which is when I stumbled across Mitrofanoff Support (again another that has saved my life for a different reason). It was the bravest thing I had ever done and decided to join up. Up and till this point I had never met anybody like me and felt so alone. I was a very shy and quiet person who hated talking about it. I always thought I would be bullied and that people would judge me which now I know is far from the truth.

Mitrofanoff Support does a great job of bringing people together and holds some of the best events, getting to meet people and share your stories. I would even go as far to say some of my best friends. 

The year is now 2013, I am so much happier as a person, feel more confident and not so embarrassed anymore. I help out at Mitrofanoff Support events and this year have become a Organisational Committee Member. A place where I can make a difference and help people the same as me. I would even say it’s hard to shut me up about it. I would love people to know you are not alone and now there are plenty of people who can help you with the pros and cons, which I did not get when I was younger. People have Mitrofanoff for different reason and hopefully some of you can relate to my story. 

Jamie