Imagine having to always think about where to sit that will not easily display a patch of urine afterwards; Whether it will rain or shine so you can hang all your beddings out to dry, what to wear because all your clothes are soiled, who to have a simple chat with because all your friends stopped visiting, where to buy food from because the market vendors are afraid of you, or whether you will be welcomed at the party. Obstetric fistula forces such decisions into a woman’s life on a daily basis, making life difficult and draining.
Often the result of prolonged and obstructed labour without access to timely, high-quality medical treatment, obstetric fistula is a hole between the birth canal and bladder and/or rectum that causes uncontrollable flow of urine and/or stool. And with it, shame, isolation, stigma and abandonment.
A UNFPA-supported project is giving women their lives back through prevention, treatment and rehabilitation of survivors. With funding from the Embassy of Iceland, the Survivors Treatment and Obstetric Fistula Prevention (STOP) project has held five surgical camps in in eastern Uganda since July 2024, two of them at Buyinja Health Centre IV in Namayingo District, which has the highest prevalence of teenage pregnancy in the country: a predisposing factor for obstetric fistula. A total of 115 survivors were treated and reintegrated into their communities between September and December 2024.
‘Coming out of hiding’
While pregnant, Justine Auma, 22, in Mutumba A Village, Mutumba Sub County, religiously attended all her antenatal visits and even had three ultrasound scans. However, after 20 hours of active labour, Justine got a rectovaginal fistula, a hole between the birth canal and the rectum, and she leaked both stool and urine uncontrollably.
“Even children kept away from me,” Justine says, her face falling from the memory. Josephine sought help at four health centres to no avail. “I started hiding from everyone. I didn’t want to eat or drink anything, and I just wanted to die.”
She lost about 15 kg in the process. Six months later, when Justine heard a radio message about the UNFPA-supported fistula surgical camp, she mustered all her willpower and went to Buyinja Health Centre IV in Namayingo District. Though she soiled herself on the motorbike ride, the hope of wholeness kept her going. The surgery was successful, and she returned dry.
“Now I sit well with my friends,” she says with a gentle laugh, “I no longer check the back of my clothes or my seat.”
Justine also has become a self-appointed advocate for obstetric fistula care and has so far referred five other women for treatment from her village alone.
“They were hiding like I was and I encouraged them to come out. I tell them fistula is just a disease and is treatable.”
The Assistant District Health Officer in charge of Maternal and Child Health in Namayingo District, Joyous Mwogererwa while noting the immense stigma around fistula, emphasizes the need to bring it out in the open, normalizing its prevention and treatment as one would for malaria.
“This would greatly reduce the need for rehabilitation and restore survivors’ self-worth,” she says.
From five washes a day to once a week
Florence Awori was 18- years-old when she got pregnant with her first child. After labouring for more than a full day, Florence had a caesarean section that left her with three punctures to the bladder, causing her to leak urine uncontrollably. Her parents sought help in three different districts, to no avail.
Over the next 20 years, Florence had to wash her clothes and bedding up to five times a day while also grappling with loneliness and stigma. Several market traders refused to sell her and even advised her parents to abandon her.
“They would spit whenever I passed by,” she says with a cringe.
Since her surgical treatment in September 2024, Florence only does laundry once a week at her home in Namaganda A Village, Mutumba Sub County, Namayingo District. Her parents, who exhausted nearly all their land, cattle and possessions to seek treatment for her, are planning one more expense; a thanksgiving party.
“We are thrilled to have our daughter back and want the community to see what we knew all along,” says her 70-year-old father, “Florence is a normal person again.”
Julius Twesigye, the STOP Project Manager at Marie Stopes Uganda, one of the UNFPA’s implementing partners, underscored the importance of integrating mental health and psychosocial support (MHPSS), noting that health and community workers are receiving training on MHPSS to enable survivors to recover comprehensively from not only physical but also psychological effects.
One month after the operation, Florence chose to attend business and other skills classes under the STOP programme. She plans to start a business so she can now look after her parents.
“I can now do what everyone else can do,” she says with a resolute look.
