My name is Kyla Rogers, I was born with complex urological and gynaecological problems which were not diagnosed until the age of eight.
I was incontinent day and night while growing up. I had various tests and investigation over the years and my kidneys where reimplanted at the age of three but the Urologist could not find a diagnosis.
The urologist started to question whether my incontinence was a behavioural or a bladder training problem rather than related to organic dysfunction with the urinary tract. From then after my incontinence was blamed on attention seeking and a dysfunctional family life as my parents were going through a divorce.
My parents had split up and were going through a divorce, so the urologist blamed my incontinence on family problems and attention seeking. We were referred to see a family psychiatrist and it was thought that regular visits would help me.
I started school, which was horrific. I was forever changing from my uniform into my PE kit. I would get through 20 to 30 pairs of knickers a day. The bullying had started, I was known as the girl who stank of wee.
My school work suffered due to my hospital appointments, the bullying, abdominal pain and general lack of interest.
I struggled at school due to abdominal pain, hospital appointments and general lack of interest. I have dyslexia which was not recognised in those days and was therefore not detected.
In 1990, when I was eight years old, the urologist retired. A new paediatric consultant from Great Ormond Street Hospital and took over my care. He diagnosed my birth defects. The Urologist informed us I had very complex urology problems and abnormal anatomy of the lower end of my uro-gential tract. This showed a wide opening of the urethra which was also very short. It was recommended that I have major reconstructive surgery to control symptoms.
Due to none of the minor operations working a decision was made to undergo the Mitrofanoff. On 21st July 1998 the urologist and gynaecologist carried out a lengthy nine hour operation in which they completely closed off the bladder neck, a pouch ileocystoplasty was formed to make a Monti-Bladder and Mitrofanoff Urinary.
I have now been continent for 13 years, I have had a few battles along the way, but since then the surgery has completely changing my life.
In June 2010 I founded a support group called Mitrofanoff Support. We speak to people both pre and post-operatively, we try to help them with their worries, fears and try to support them as much as we can. We do this by talking over the telephone, email, instant messaging and I visit people either at home or in the hospitals.
Mitrofanoff Support aims to hold regular open days, event / activity days, Coffee mornings and have a real sense of a Mitrofanoff community across the country.
As there is still such a glazed look when you say the word Mitrofanoff away from the centres of excellence Mitrofanoff Support aims to make the NHS as a whole aware of the Mitrofanoff and what it entails.
Mitrofanoff Support is also going to hold education and training days for the Medical Professionals to help give them a better understanding and broaden their knowledge.