SOKOTO/JOS/KADUNA, NIGERIA - Every morning, Asma’u Muhammadu removes the wet sheets from her bed and sets them out to dry. She opens the door to let in the fresh breezes that will air out the smell of urine in the mud-walled room. Along with the sheets, she brings out wet rags she uses to line her inner garments.
"I am dealing with yoyon fitsari. I don’t know when the urine pours out from my body until I see it leaking down the sides of my legs," says the 27-year-old woman.
Yoyon fitsari is the term used in the Hausa language to describe vesicovaginal fistula (VVF), a medical condition in which a hole between the birth canal and bladder leaves women unable to control their urine. Women with a hole between the birth canal and the rectum, rectovaginal fistula (RVF) experience uncontrollable leakage of stool. Some women have both VVF and RVF.
Some women are born with fistula, which is rare. Other causes include injuries sustained during pelvic surgery and hysterectomies, inflammation and infections in the genital area, and sexual violence.
But the leading cause of fistula is prolonged and obstructed labor. In Nigeria, between 400,000 and 800,00 women are currently living with fistula.
The World Health Organization describes fistula as “the single most dramatic aftermath of prolonged or neglected childbirth,” and estimates more than two million women live with fistula worldwide.
Young marriage only partly to blame
Nigeria has the world’s highest occurrence of obstetric fistula and the Nigerian government says early marriage is largely to blame. Often, the bodies of young wives are not physically prepared for childbirth.
Muhammadu was married at 12 years old and had her first pregnancy at 15. She labored at home for two days before going to the hospital, but it was too late.
"On the fourth day, I gave birth and my baby wasn’t alive," Muhammadu said. Her mother also has VVF fistula. They take care of each other.
But health workers say other cultural factors contributing to the high occurrence of fistula need to be addressed and focusing on early marriage oversimplifies the problem.
"I think we should de-emphasize the issue of early marriage as far as a direct cause of VVF is concerned," says Dr. Bello Lawal, a fistula surgeon and the chief medical director at the Maryam Abacha Women and Children Hospital, the only one in the northwestern state of Sokoto that performs fistula repair surgeries.
"There are some traditional practices whereby a surgical procedure is carried out on a woman who is supposed to have a condition known as goriya, which is supposed to be a growth in the private part, that is supposed to be removed by the traditional barber, and in the process, they usually cause damage to the bladder or they cause damage to the rectum, and that can lead to recto-vaginal fistula or vesicovaginal fistula," Lawal explains.
Traditionally in Hausa culture, barbers are called to remove goiters, remove enlarged tonsils, perform male circumcision and execute yankan gishiri, similar to female genital mutilation.
Goriya is said to be a tumor-like blockage of vaginal tissue, but Dr. Lawal said, "There is no tumor. Most of these cases, which we call goriya, are usually psychological cases." Goriya is a form of the pseudoscience that has led to millions of women developing VVF.
The practice is also performed in cases of infertility.
Lack of skilled doctors
Many women have had several failed fistula repair surgeries. Due to the stigma, most of them say their husbands divorced them. Dozens of former fistula patients live at the back of the Maryam Abacha Women and Children Hospital. They say they cannot go back home to face humiliation in their communities.
Only about a dozen doctors in Nigeria are skilled enough to perform the intricate fistula repair surgery, like Dr. Sunday Lengmang, a surgeon at the ECWA Evangel VVF Center in Jos.
Lengmang is considered one of the most skilled fistula repair surgeons in the world and the Evangel VVF Center is the only hospital in Nigeria that performs urinary diversion surgeries to handle complex fistula cases.
“Fistula affects the poorest of the poor in the poorest countries of the world," he said, adding that this means the doctors working in this area must be highly motivated.
"But apart from that, we also have the issue of the difficulty in finding doctors who have the skills,” he said.
With about 12,000 new cases reported around the country each year, the 14 Nigerian hospitals that perform repair surgeries are only able to handle about 5,000 operations, leaving an enormous backlog. USAID’s Fistula Care Plus says about 200,000 women in Nigeria are waiting for fistula surgeries.
Hospitals mostly rely on funding from outside of Nigeria. Donations fund the Evangel VVF Center, where surgeries are free of charge for patients. At other facilities, patients bear some of the cost of the surgery, which is about $300.
In her remote village, Muhammadu says her husband has stayed with her, despite her condition, and she is content. He has told her not to go the hospital for treatment since the fistula has not affected her ability to have babies. She has two daughters.
She wants the fistula to go away, but says it is “destined by God to happen that way.”
This reporting was supported by Code For Africa, a data journalism initiative.