Obstetric Fistula Advocacy Group

24 years ago I gave birth to my second daughter in a private hospital in Brisbane, Australia and suffered a Vesicovaginal fistula (VVF).

During the pregnancy I bled continuously and at 37 weeks my Obstetrician decided to do an emergency caesarian when the bleeding suddenly worsened. My daughter was delivered but it was discovered that I had an extremely rare condition called Placenta Percreta – the placenta had grown through the entire uterine wall and attached itself onto my bladder and bowel. I had to have an emergency hysterectomy and lost almost all my blood, with blood matching and multiple blood transfusions. The mortality rate for this condition has been listed as being almost 30% – the entire pregnancy I had been a walking time bomb…  My compromised pelvis also resulted in my daughter being born with Club Feet requiring intensive orthopaedic intervention.

The night before leaving hospital it was discovered I was leaking urine after the catheter was taken out. By the six week checkup I knew something was wrong and subsequent tests confirmed that urine was coming out my vagina and I had a Vesicovaginal Fistula.

My Obstetrician found a surgeon Dr Judith Goh who in 2012 won an Order of Australia for distinguished service to gynaecological medicine, particularly in the field of fistula surgery, and to the promotion of the rights of women and children in developing countries. I had the repair when my daughter was 7 weeks old. By then I was wearing a permanent catheter strapped to my leg whilst looking after a newborn and 3 year old.

Whilst extremely common in developing countries such as Ethiopia and Congo, Doctors would have us believe that fistula is eradicated in developed countries such as Australia, America and the United Kingdom.

This is not true. In fact, Obstetric Fistula does occur in developed countries and the numbers are increasing, due in part to a drop in quality health care,  an increase in a prolonged birthing process and increased intervention. The repair was a success but as with any major surgery, it hasn’t come without a great deal of trauma.

Three years after the repair surgery, I was referred to a urogynaecologist, who immediately scheduled me for an exploratory – it turned out the fistula repair had left vaginal tissue in my bladder and my bladder was recognising the foreign tissue and trying to expel it. Laser surgery resulted in bladder tissue growing over it…the surgery worked, for now.

Words cannot describe what is like to be incontinent all the time, the humiliation of wondering if you smell and the fear that you will soil your clothing.  Always worrying where the closest toilet is.  In total I had to have five lots of surgery, antibiotics for five years and wore a catheter for two years.

For those of you who are new to this, I just want to say that there is light at the end of the tunnel…

I won’t lie and say that you will forget all the trauma, but you will come out the other side with a whole new level of respect for yourself. Even with all the health issues I still managed to get a Bachelors Degree and bring up two girls on my own, with no family support.

Whilst Dr Hamlin and her husband set up the Hamlin Fistula Hospital Ethiopia for women in developing countries, the reality is that women in developed countries are also suffering. They are suffering the same cruel fate but for very different reasons – 4th degree tears, surgical error or even as a result of Crohn’s Disease.  Because of the rarity of this condition and the fact that very few surgeons have the specialist experience in Obstetric Fistulas, women are having multiple surgeries that fail.

Statistically the more surgery you have to repair the fistula, the less chance you have of success.

At this point in time, an Obstetric Fistula is not recognised as a notifiable health condition in developed countries so we don’t know how many women are affected.  This website and associated Facebook page aims to change this. We want to bring this condition to the attention of the Australian Federal Government, the Australian Medical Association and ultimately the World Health Organisation via the United Nations.