Fistula survivors share their experiences

Precious Sharon Namakula, 25, was born with fistula. When her father realised she had the condition, he abandoned her mother for another woman. For almost 20 years, she lived with the condition.
“When I got a scholarship at Seeta High School Mukono after performing well in primary, my mother had to rent [a house] near the school so that she could bring me clothes and disposable diapers to change frequently. It was a traumatising experience. You don’t know what it means to be an adolescent who smells all the time,” she narrates, amid tears.

Fortunately, with the help of a Good Samaritan, veteran artiste Halima Namakula, she underwent surgery. Sharon also received a full scholarship to Makerere University where she attained a Bachelor’s degree in Development Economics. She now works with a telecommunications company.
“My father turned up on graduation day and I chose to forgive him to encourage him to talk to fellow men,” she says.

Background
Fistula, according to the National Association for Continence website, is “an abnormal connection or passageway that connects two organs or vessels that do not usually connect”. The site adds that they can develop anywhere between an intestine and the skin, between the vagina and the rectum, and other places.”
Dr Paul Hilton, a surgeon at Kitovu Hospital in Masaka, says the most common type that affects women in Uganda is obstetric fistula, which is usually caused by neglected or obstructed labour.
“If the obstruction is constant and perhaps prolonged, fistula develops between either the rectum and the vagina, or between the bladder and vagina,” Dr Hilton explains.

While there are several avenues that can be used to curb fistula, victims continue to face stigma from society.
“We seek to put a stop to the isolation, shame and perhaps end fistula. One way we can achieve this is by encouraging men to stand by their wives,” Namakula, who is also the executive director of Women at Work International (WAWI), says.
It is against this background that in 2017, an annual arrangement was started to encourage men, parents and the public to put an end to the stigma and stand with the victims to overcome the condition.

The arrangement involves WAWI and Global Peace Foundation, with support from United Nations Population Fund (UNFPA), recognising men who have stood with their wives in the battle against fistula as fistula champions. Namakula explains that the decision to recognise men was reached because one of the most common problems fistula patients face is their spouses neglecting them.
Some of the champions and their wives tell their stories:

David and Joy Sekiryowa

David: “After seeking help from several people for eight years, we had to consult traditional healers. The situation was so traumatic that we would simply accept whatever solution anyone offered. Fistula is so terrible that I would not want anyone to go through what my wife and I went through. Everyone around us isolated us. Even after Joy underwent surgery, it took her time to believe that the condition was no more.”
Joy: My husband is such a brave and rare man. He has been patient with me ever since we lost our firstborn due to fistula. Thank God we now have a baby girl.”

Solomon and Patricia

Solomon Muwanga: “We have been married for 10 years. Five years into marriage, we were disorganised by fistula. The condition chased away our friends, and my wife felt isolated. I was advised to take my wife to India for further management of the condition, but I could not even afford to meet treatment costs in our hospitals. We finally received help and my wife was treated at Kitovu Hospital in Masaka. The condition was really unexplainable but all I can tell you is that it was traumatic.
Patricia: My husband helped me in my time of hardship when I suffered from fistula. He was always there for me. He never left me alone, took care of me and the baby. All in all, he’s a great husband and I give thanks to WAWI for being there for us through that time.”

Ivan and Lillian Ssentongo

Ivan: Although I blame myself for my wife’s sickness since I was away when she went into labour, my wife does not blame me, and the doctor explained to us that the fistula was caused by delayed delivery. The condition began two days after delivery, although it took us more than a month to realise it was fistula.
At first, we tried all sorts of things to get rid of the condition until we got frustrated and decided to live with the problem. Lillian was always worried and we both became confined in fear. We couldn’t tell anybody since the few who knew about it chose to isolate us.
Our house was always ricking with bad odour. My wife was always oozing urine and cried all the time. At one time, my wife was referred to a hospital in Nairobi, Kenya, but I could not afford the treatment costs. For the five years she had the condition, I would skip work when my wife needed comfort since she was far from her family and could not use public means to travel.”
Lillian: “I don’t blame my husband because he was away, working for the future of our family. I will never stop being thankful for my husband who took care of me for five years. At one point, friends deserted me and I chose to isolate myself. I would send visitors away whenever my husband asked me to come out and meet people. He didn’t give up on me until we got help and I got an operation at Mulago hospital. After I got well, we finally had a wedding to celebrate.”

Abubaker and Suban Kaluuma

Kaluuma: “My wife lived with the condition for seven years. We got married after university, despite opposition from our families. A few months later, my wife became pregnant at a time when we were struggling to make ends meet. When she got into labour, we arrived at the hospital too late.
By the time the doctor called me into the delivery room to see her, she was covered in blood, and the baby had died. In addition to this, she also got fistula, which caused her to bleed for seven years. I was earning peanuts and could hardly afford rent and other bills.
My wife continued to ooze blood helplessly. Even when we ran back to our parents for help, we didn’t get much. She needed a carton of pads every 24 hours, which was too expensive. Our ray of hope came when a charity organisation offered to take care of Suban’s treatment at Kitovu Hospital.”
Suban: “I lived in shame and I was always worried. I could not believe it when we got help. I lived with fistula for seven years, from 2005 to 2012. At first, we thought it was a curse from our parents because they never approved of our marriage. My husband always encouraged me that things would change one day. In all the seven years I suffered, my husband never left me alone. Sometimes, I thought he would run away while I was sleeping but he did not.”