Have you heard of fistulas? Until last year I hadn’t. And if i’m really honest as i read about them in the book Half the Sky http://www.halftheskymovement.org/pages/book I half wished I’d never heard of them. You see once you know something you cannot pretend you don’t know it. Sometimes you can pretend to other people, but you cannot pretend to yourself. Its been imprinted into your brain. Forever.
So What is a Fistula?
“A fistula is a hole. An obstetric fistula of the kind that occurs in many developing countries is a hole between a woman’s birth passage and one or more of her internal organs. This hole develops over many days of obstructed labor, when the pressure of the baby’s head against the mother’s pelvis cuts off blood supply to delicate tissues in the region. The dead tissue falls away and the woman is left with a hole between her vagina and her bladder (called a vesicovaginal fistula or VVF) and sometimes between her vagina and rectum (rectovaginal fistula, RVF). This hole results in permanent incontinence of urine and/or feces. A majority of women who develop fistulas are abandoned by their husbands and ostracized by their communities because of their inability to have children and their foul smell. Traumatic fistula is the result of sexual violence. The injury can occur through rape or women being butchered from the inside. The aim is to destroy the women and the community within which the sufferer lives. Once committed the survivor, her husband, children and extended family become traumatized and humiliated. The Panzi Hospital in Congo is a pioneer in treating victims of traumatic fistula.”
How many women are affected?
“Because fistula affects women in the most remote regions of the world, an accurate count is very hard to achieve. The most common estimate is that 15-30,000 women worldwide develop fistulas every year, though some estimates put the number higher. Because most fistula sufferers are young women—many still in their late teens — they are likely to live with their condition for upwards of 25 years. By any estimate, there are hundreds of thousands of women currently living with fistula throughout the developing world. The world capacity to treat fistula is estimated at fewer than 15,000 fistula repair surgeries per year.”
This is beyond wrong. 100,000’s of women in the world today living with a fistula and only 15,000 per year with an opportunity for recovery. Unacceptable odds in a cruel sick lottery.
Facts are one thing but a person’s story is quite another. I read Nathi’s story among others on the Fistula Foundation’s website. http://www.fistulafoundation.org/whatisfistula/faqs.html their stories are harrowing.
Nathi* lives in Uganda. She was married at the age of 13 and two years later was pregnant with her first child. After enduring a difficult labor, Nathi lost her baby and was left with obstetric fistula, incontinent and leaking wastes. Her husband abandoned her and soon after, her family did, too. At 15, she was alone and scared.
Then, she found help – or rather, help found her. Through funding from The Fistula Foundation, an outreach counselor from The Association for the Re-Orientation and Rehabilitation of Teso Women for Development (TERREWODE) was able to visit her village and identify her as a candidate for fistula repair surgery. She was transported to Soroti Regional Referral Hospital in eastern Uganda and underwent a successful surgery. Healed, Nathi also received follow-up care, counselling and reintegration support.
Today, Nathi lives among other fistula survivors in a camp run by the organization named “I Have Been Delivered,” in a hut built by male supporters. Customs and traditional practices can make it difficult for a woman to own land in Uganda, but because these men donated this land, fistula survivors like Nathi – who have no home or family to return to – are able to live on their own. On this land, Nathi is growing food to eat and to sell, so she is learning to support herself financially. And she is supporting other women, sharing her story and telling every woman with fistula that she meets that it is possible to be cured and to feel hopeful once again.
*The patient’s real name has been changed to protect her privacy.
This morning as I thanked God for my pain-free pee, I remembered what I know about fistulas. I remembered giving birth to my sons in a free NHS hospital. I remembered that I was surrounded by trained professionals who cared for me and my babies. I remembered that I had access to medicine, equipment and expertise simply because of where I was born. I was humbled and so very very grateful and I remembered the women who I will never see, who are in unthinkable agony every day, facing humiliation and often worse because of their fistulas and I decided I would not forget what I now know, but that I would tell others, who would tell others and maybe somewhere along the line we’d stop telling and start sharing our resources so even more of these women could be healed. Today I cast a stone with the hope that it sends out ripples. So at the very very least we increase the odds in the cruel lottery.