My Story: Young Woman with Epispadias
by Olivia
Hi, everybody. My name is Olivia, and I have been asked to share a few of my experiences as a female who suffers from epispadias. To say I suffer from this condition now is probably a bit of an exaggeration, because my life is fantastic and I would never change it. However a few years ago I probably wouldn’t have thought the same thing.
I am 16 years old and I live in Queensland, Australia. I was diagnosed with epispadias when I was 3. My parents realized something was wrong when I couldn’t be toilet trained by that age, and I think I looked a bit different. I am not clear on all the details of the surgeries at that point, but I believe there were quite a few to try and gain some continence. My epispadias was severe, and my bladder neck was virtually nonexistent, which resulted in no continence for the first 8 years of my life.
I went to primary school in nappies, but that never stopped me from participating in anything, whether it be mucking around with my friends or playing any sport you could think of. When I was 7, I had a bladder neck reconstruction, which seemed to work for a short time, before it turned into an absolute disaster where I was worse off than when I started. My hospital stay was quite long, and I remember screaming in pain every night, keeping my poor parents awake and stressed out all of the time.
My great doctor and my family made the tough decision a year later to complete a bladder augmentation and a Mitrofanoff procedure, which would hopefully result in more continence with only small leakages. The pain of this surgery was the same as the last, except probably for longer, as my parents had to continually wean me off the urine bag for increasing periods of the time. I put them through a lot, because I was in pain and I just wanted a rest, so I would scream, yell, beg, or tell them I hated them just so they would leave me on the bag for a few more minutes. The first few months were excruciating for me as my bladder expanded—and probably extremely hard on all of my family, as every day they had to make the horrible choice to put their screaming daughter through more pain so that eventually my life would be better. I never saw this burden that my parents took on, as I was shielded by them and my own physical pain. However, through all this I still went to school every day for a short time and just told all my friends that the bag was full of apple juice, and they better not try and drink it, because it was mine.
Eventually I was off the bag, and my mum catheterized me day and night, before I took over after a while. This was probably a relief for all, but there was better news to come. My pediatric urologist never closed my urethra in case of emergencies, so small amounts of leakage were to be expected. However, 8 years on, I have never had one single drop of urine pass through my urethra since my surgery.
Since my big surgeries, my life has been normal and my epispadias is never even really thought of. My mum and dad have never made me feel any different from anyone else or my siblings, and I really owe my outlook to them. Unlike many other members of HEA, I do not see my epispadias as a burden, a hindrance, or something that had negatively affected my life. In truth, it has made me mature a lot faster and has opened my eyes to the fact that although I went through a lot, so many others are much worse off than me. I like the fact that I am a bit different, a bit special, and that there’s more to me than you see.
My life is really great at the moment, and I think in some ways I am luckier than most. I am on the Australian junior women’s softball team, I am about to start my last year of school as the school captain of the biggest school in my state, I have represented Queensland in two sports, and I have many promising career paths lying ahead of me. I will probably be in and out of hospital for the rest of my life with recurring bladder stones, but I won’t ever leave my fantastic doctor so I will probably be in the children’s ward when I am 30.
All in all, my epispadias has been a blessing in disguise because I think I am better for it. My family and I went through a lot, but that isn’t an issue and has never really even been made one, because I am a normal teenager who just catheterizes to go to the toilet.