I was born with an ectopic bladder (Bladder Exstrophy or B.E), a prolapsed vagina, imperforated anus and my pelvic floor muscles and bone did not develop properly. Much of this region was malformed and exposed at birth.

I was transferred to a specialist Children's Hospital immediately after birth and was christened because there was not much hope of me pulling through. I had major surgery that day to make a new anus opening and due to my pelvic floor, doctors predicted I would be confined to a wheel chair for the rest of my life.
I came home after three months with my bladder still exposed and vagina prolapsed.

At 5 months old I had a colostomy put in place as doctors discovered my bowel was too narrow. At 7 months old had major surgery again to tuck my bladder back in which involved moving tissue and muscle from sides of my abdomen to close. From this I have very deep scar tissue. During this time I also had the vagina prolapse repaired. From 7 months old until the age of 10, I was in nappies.

At the age of 10 I had a Urostomy put in place to get me out of nappies, as my bladder had shrunk to the size of a walnut. Several tests were performed to see whether my bladder could be expanded via balloon cathedar, but nothing worked. The little bladder I had left proceeded to go into spasms and almost burst. It was the most painful experience of my life.

At 11 years of age doctors thought it was "too socially unacceptable" to have 2 bags at such a young age. Again, several tests were performed to reveal that I could function my bowels somewhat normally, but would have to endure painful bowel washouts to remain continent. I had to re-train my bowels for years which were a very scary experience. I hadn't ever sat on a toilet before the age of 11. To me, I found it really interesting.

From that point I had many more tests to see whether anything else could be done to make my life easier and more comfortable, but nothing could be done.

At the age of 12 I had a little cosmetic surgery and a belly button put in place, to make my appearance seem more "normal" as I had so much scar tissue damage.

At the age of 13 I went into counseling and Chronic Illness Peer Support and then after tended to ignore my problems for a few years as I suffered from depression.

Over the past 2 years I have had several major reconstructive procedures to try and correct uterine and cervical prolapses, but to this stage nothing has worked. I did not realize at the time, but I had been suffering these prolapses from around the age of 15. I thought my genitallia just looked abnormal and never proceeded to get advice about pain in "that" region. My recent surgeries have involved surgical mesh and souchers trying to hold my lower region "up", but since not having an adequate pelvic floor region, my uterus is coming down with age. I have been told I may have to have a hysterectomy which has devastated me.

Currently I am in wait for my next procedure which may involve either the hysterectomy or amputation of the cervix. The future is really unknown for me at this stage.

As for my Urostomy ("Binj"), her and I are coping quite well and have not encountered many problems. Due to so many past surgeries I have developed a severe allergy to latex due to over-exposure. I was also born with complete nerve deafness in my left ear.

Looking back I guess the reason I ignored my problems for so long was because I didn't want to deal with them and face life with so many obstacles. I had very bad family problems and ignored myself and my pain a little too much. My mother suffered from leukemia for many years and my father was diagnosed with dementia. I felt, in some ways, as though my problems did not matter. Except for school I withdrew from life and became quite anxious about the world "outside". I never let anyone really know my problems until at around the age of 20 when I could not function anymore. I quit University and broke up with my boyfriend of 5 years. I felt as though I was in a huge rut, and I didn't really have any answers as to why. I became bullemic for years, abused alcohol and prescription pain medication. Anything to take me away from what I was feeling about my problems, I almost killed myself many times in the process. It is only now that I am really starting to see the light at the end of the tunnel and am so thankful that I have found a group like this to vent my feelings too. All I have ever wanted was for someone else to say "I understand" and for me to know that they mean it.

I am hoping to have more corrective cosmetic surgery in the near future and am counting down the days to where I can work and live a normal life! My anti-depression medication is working quite well for me and I am intending on getting much more involved with Y.O.U (Young Ostomates United), a group of people (Victoria, Australia) aged 20-40 with ostomies. They have several local functions and I am very excited about what the future holds in that respect. I am also considering completing my University degree and going onto educating myself to become a Stomal Therapy Nurse or Counselor for Chronically Ill Children one day.

Currently my prolapses and constant pain don't allow me to work, exercise or have sexual relations. So at 24, I don't really feel like I am living, but I am trying to cope with it all as best I can. I am in quite a lot of pain most days, but take it in my stride and know that I have beaten most of the odds stacked up against me. As they say, the stronger the wind, the stronger the tree. I believe in that.