Shame and neglect, my fistula experience

Victoria Wanjiru, now aged 23, experienced loss of bladder and bowel control after giving birth at 19 years of age. Doctors said she had pelvic organ prolapse, in which her bladder, uterus, and rectum fell, making her lose control of her urine and stool.

Wanjiru recalls that after delivering, she had a tear that was stitched. She was told to sit and soak on salty water.

“There was something falling and I had to push it in. I didn’t know it was the bladder coming out.”

She had three surgeries to rectify functions of the uterus, rectum, and bladder at the Kenyatta National Hospital, but “after the surgery, I couldn’t eat or drink to avoid going to the toilet. I would wait the whole day for my mother to come and clean me up.”

Fistula comes with stigma and Wanjiru didn’t welcome visitors “as they could leave with a story that I smell and tell other people.”

Going to hospital for weekly check-ups using public transport became stressful episodes of being forced out of matatus by makangas “because I was smelly. People didn’t know I was sick.”

The stigma and isolation resulted in negative psychological self-appraisal, and she started secluding herself for fear of being judged. And even after surgery, drops of urine still leaked, forcing her to wear sanitary pads.

Fistula has made many African women live as outcasts, fueled by ignorance and lack of understanding of the condition.

This has spawned theories, with most communities accusing women with fistula of promiscuity, making them shun hospitals.

Fistula, which is caused by either an injury or surgery, can be between an intestine and skin, between the vulva and the rectum, with the commonest being around the anus.

Causes of fistula vary; from complications when giving birth, surgeries, radiation or cancer. The most common is obstetric fistula, caused by damage to the organs during childbirth

Dr Charlotte Polle, a Mombasa-based obstetrician-gynecologist and a pelvic floor surgeon, says men who undergo pelvic or prostate surgery are at risk of getting fistula.

A city lawyer who is a mother of two, had a vaginal fistula after giving birth to her second baby and a week later, she was discharging urine and could not hold stool.

The nurse in charge told her it was sometimes normal to release fluids after giving birth but “the discharge was not normal like during my first delivery,” she recalls.

“Stool was coming out of my vagina, and urine was coming out endlessly,” she said.

Medics at Kenyatta National Hospital told her she was suffering from recto-vaginal fistula, a condition that allows stool or urine to pass through the vagina.

“I was shocked. I didn’t know what fistula was. It was a traumatising experience. I had left the hospital with a sickly baby and now I was back to the hospital. I was depressed,” she says of the condition in which “a tear in my vaginal wall to the rectum became one hole. All the time I was uncomfortable, feeling itchy and getting infections.”

She isolated herself and avoided mixing with people at all costs. She even feared opening up to her family about her condition as “I kept changing sanitary towels often, I didn’t let anyone close to me because no matter how often you change them, you will smell because everything was uncontrollable.”

To make matters worse, her medical insurance declined to pay for her treatment, arguing that the cover did not extend to birth-related injuries.

“The surgery is a very painful procedure; the healing process too, because at the same time the rectum and the vagina have to perform their function with all that pain. Healing took almost nine months,” the lawyer explains.

She decried lack of awareness about the condition. “Fistula affects your sexual life. Most spouses feel like you aren’t taking care of yourself,” she says.

Low self-esteem is another battle that fistula survivors go through, and she says she healed easily by sharing her experience openly.

She gets inspired when she helps other women as she advocates for more funding to raise awareness and combat the condition, and also a policy to support women with fistula wherever they are.

bwaliaula@standardmedia.co.ke