Information for Teens


We hope that you find the following information relating to helping you people through the
process of having Mitrofanoff surgery supportive and helpful.

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Katie's Story

In early 2008, my life was turned upside down when I was admitted into hospital with Urinary Retention. At the time I had over 1 litre in my bladder but wasn’t sure where the pain was coming from, or why I was unable to provide a urine sample. It took about 12 hours for the doctors to successfully catheterise me, by which time my bladder had stretch quite significantly. 

Being just 18 at the time, I was mortified, but after a traumatic few days I was sent home to intermittently self-catheterise through my urethra. The pain I was getting from this was horrendous, and I was often putting of the urge to go because it was too painful to try. The catheters would often get stuck in my urethra, but before my diagnosis the doctors often assumed I was exaggerating this or I wasn’t using enough gel. But in 2010, I was relieved to finally be told there was a name for my condition and I wasn’t alone anymore. I was diagnosed with Fowler’s Syndrome and Urethral Segmental Myoclonus. 

After the initial relief of knowing what was wrong, I began to realise there wasn’t an easy fix to this. I had an emergency Suprapubic Catheter put in due to further retention, which caused no end of Urinary Tract Infections. I was admitted to hospital repeatedly for months on end with different infections, which were becoming more resistant to antibiotics each time. I realised I needed a long-term solution, to reduce these infections otherwise it would cost me my life. 

In late 2011, I had the Mitrofanof Procedure, which was the best decision I ever made. It hasn’t been an easy ride, and in the 2 years since then I’ve had about 6 revisions. For me, being without an indwelling catheter has given me my life back, in so many ways. I now make a real effort to go out and enjoy myself, I have lots of time to make up for; I really appreciate all the stuf I couldn’t do back when I was sick. 

I would like to let anyone who’s struggling know, life can get better! Keep smiling!!

Katie Dunton