Healing beyond surgery: Women fighting fistula reclaim dignity, lives

Agnes Asiko developed obstetric fistula just three months after the birth of her third child, a condition that stripped away her comfort, confidence and freedom.

Asiko, from Luanda in Vihiga County, would leak constantly, soiling her clothes and enduring the daily humiliation that came with it.

Simple acts such as sitting, walking, or leaving her home to attend church or go to the market became unbearable.

Like many women living with fistula, Asiko carried the burden in silence, caring for her children while battling stigma and isolation. Still, people around her noticed.

“Apart from my husband, I faced rejection and cruelty. Neighbours whispered that I was cursed back home. Some complained of a foul smell. Slowly, visitors stopped coming to my home. I was left alone in deep pain,” she recalls.

But her deepest wound came in March 2021, following the death of her father.  She longed to travel to Tanzania for his burial, but her condition made the journey unimaginable.

“How could I travel when I was soiling myself all the time?” She posed during an interview with The Standard.

“Sitting for long hours was impossible. I lacked money, dignity and support.”

Affording even a single diaper was a struggle, and no one stepped in to help. “I was a farmer, producing vegetables for sale, but when I got fistula, I lost my market, making it hard to earn a living,” she recalls.

At the time, her husband was working far from home. Fortunately, her supportive husband helped her seek surgery at a private facility in Eldoret

Asiko lived with the condition for four months, a period she describes as the most trying of her life.

Today, The Standard meets her at Kenya Quilts for Empowerment, where she sensitises women about fistula, saying lack of awareness fuels the stigma and discrimination faced by survivors.

“I delivered successfully, only to develop fistula. This is a condition no woman would wish to have, but the world remains unkind because many do not understand it. Women are therefore forced to suffer in silence,” she says, describing her corrective surgery as “a resurrection”.

Asiko’s story, like many others, mirrors the physical, emotional and social toll of fistula.

Fear and shame 

Eighty-four-year-old Irene Alivitsa’s journey with fistula began quietly, hidden behind fear and shame.

She spent nearly two years struggling alone, waking up to find herself soiled, too embarrassed to share her ordeal. 

Eventually, a friend visited her at home and linked her to Kenya Quilts for Empowerment, which facilitated her travel and surgery at a private facility in Eldoret.

Before surgery, she was placed on nutritional support to strengthen her body, as she was weak.

A doctor who reviewed her revealed that she had developed fistula following childbirth.

Alivitsa is a mother of ten children, though only four are alive.

“Child bearing was a normal procedure done at home. We did not have hospitals, so I delivered my babies by myself and cut the umbilical cord on my own.

“All was not smooth, however, because at times I endured long, exhausting labour as some babies were big,” she recounts.

Despite these challenges, Alivitsa has found ways to support herself and regain a sense of normalcy. 

She participates in community training, helping others while cultivating vegetables and engaging in small business ventures such as selling omena and vegetables in the village as income generating venture.

She recalls her past years fighting fistula, saying her initial episodes were confusing, and it took time before the severity of her situation became apparent.

“I did not know I had fistula, I would just find myself leaking. Leaking fades a woman’s dignity,” regrets Alivitsa.

On her part, Caroline Nafula, from Busia, faced her own battle with fistula following a severe abdominal complication.

In 2019, she experienced excessive bleeding and was referred from Busia Referral Hospital to Bugiri in Uganda, where doctors diagnosed a uterine problem and removed her uterus, a procedure that resulted in fistula.

After undergoing surgery in Eldoret in 2020, she has since healed and slowly reclaimed her life.

“I did not develop fistula during childbirth, but after surgery. I began leaking urine. I am so grateful that successful surgery restored my dignity,” she says.

Her journey was not only medical but social, marked by stigma and isolation from her husband, who restricted her movements.

Prolonged labour 

Dr Anthony Wanjala, an obstetrician-gynaecologist and obstetric fistula surgeon, explains that female genital fistula is an abnormal connection between the bladder and the birth canal, or between the rectum and the birth canal, resulting in uncontrolled leakage of urine, stool or both.

The most common cause is prolonged obstructed labour without timely access to a Caesarean section. Obstructed labour may occur due to a small pelvis or a large baby.

“In prolonged labour, the foetal head becomes lodged in the birth canal, compressing the bladder or rectum against underlying bones, cutting off blood supply. This leads to tissue death and the formation of a hole, resulting in fistula,” explains Dr Wanjala.

Surgical misadventures can also lead to fistula. These iatrogenic fistulas occur when a surgeon inadvertently injures the bladder during pelvic surgery such as Caesarean sections, hysterectomy (removal of uterus), myomectomy (removal of fibroids) and cystectomy (removal of cyst).

Such surgeries, he says, may be complex or performed by inexperienced practitioners.

Other causes include sexual assault, trauma such as falls or road traffic accidents, and cancers such as cervical or vaginal cancer, often due to radiotherapy. However Some fistulas are congenital, meaning a patient is born with the condition.

“Female genital fistula is not only a physical disease. It has huge mental, psychosocial and economic dimensions. Treating fistula requires addressing all these aspects equally,” Dr Wanjala observes.

He notes that continuous leakage of urine or stool leads to stress, depression, stigma and social isolation.

“The stench causes women to be shunned or to hide from others. They stop going to the market, church, chamas, weddings, funerals and other social functions,” he says.

Many women, he adds, are divorced, separated or sent back to their parents, deepening their trauma and economic hardship, as most are financially dependent on their husbands.

Fistula repair

Treatment of fistula is through surgery.

Dr Richard Mogeni, an obstetrician-gynaecologist and chair of the Kenya Obstetrical and Gynaecological Society (KOGS) North Rift region, explains that fistula repair is a standard gynaecological procedure carried out below the umbilicus.

Before surgery, patients are counselled on the benefits, risks and available alternatives.

Depending on the type and extent of the fistula, surgery may be performed under general or regional (spinal) anaesthesia.

“The repair involves carefully preparing damaged tissue, sometimes refreshing scarred areas, before closing the fistula in layers using fine surgical sutures,” says Dr Mogeni.

He adds that most fistula repairs are successful, with success rates of about 90 per cent, except in complex cases. Outcomes depend on surgical expertise, the location and cause of the fistula, and the extent of tissue damage.

After surgery, patients are fitted with a urinary catheter to allow continuous drainage while tissues heal.

Recovery includes close monitoring and pelvic floor exercises, with healing assessed before the catheter is removed.

Beyond surgery, other essential services include psychosocial counselling and physiotherapy.

To prevent recurrence, women are advised to avoid sexual intercourse for at least three months after surgery, and future deliveries is encouraged to be through Caesarean section. 

Ministry of Health data shows that about 3,000 women in Kenya remain untreated.

According to the World Health Organization, between 50,000 and 100,000 women develop obstetric fistula each year, while about two million live with untreated fistula globally, mainly in Asia and sub-Saharan Africa.

The condition, the organisation notes, can be prevented through delayed age of first pregnancy, abandonment of harmful traditional practices and timely access to obstetric care.

To bridge gaps in care, Kenyan doctors have increasingly relied on medical camps to reach women in need of screening and surgery, given the multidisciplinary nature of fistula treatment.

“Fistula is a repairable problem, but in Kenya, there are many patients in need of services yet we have limited fistula specialists to do repairs,” says Mogeni.

Dr Wanjala adds that while some fistulas, particularly iatrogenic ones, should be repaired immediately, most are best repaired after at least eight weeks to allow tissue healing.

To reduce delays in seeking care, Dr Mogeni calls on the government to allocate adequate resources.

Poverty and inequality

“Fistula reflects deep systemic failures linked to poverty and inequality,” he says.

Most affected women live in rural areas or urban informal settlements, where access to quality healthcare remains limited.

“It is a sad reality that access to healthcare among the urban poor, especially in cities like Nairobi, is often worse than in rural areas. Stigma further prevents women from seeking care,” he adds.

While the Social Health Authority (SHA) has allocated some funding for fistula care, Dr Mogeni says treatment must be prioritised across both public and private facilities.

Counties such as Turkana and West Pokot continue to record high case numbers, yet access to specialised care remains low.

“We should not have fistula in this country,” he says.

Kenya currently has only 12 actively practising fistula surgeons.

Although national and county governments have shown support, resources remain stretched thin.

Several non-profit organisations, including the Fistula Foundation, Wadadia, Amref, Flying Doctors Society of Africa, M-Pesa Foundation, UNFPA and Jhpiego, have stepped in to supplement care.

Rose Waringa, Rotary Club Western Kenya Region Coordinator, notes that many rural women continue to live with fistula simply because they do not know it is treatable.

Lack of awareness, she says, allows cases to worsen, leaving women isolated and stigmatised without care.

“Some women develop fistula early in marriage. When husbands do not understand, marriages end, yet this is a correctable condition,” she says.

She calls for a stronger referral system and urges the government and partners to subsidise treatment.

Waringa also advocates for integrating fistula into Kenya’s community health strategy, with Community Health Promoters (CHPs) trained to identify and educate communities about the condition.

“Kenya has a good community health strategy. CHPs should discuss fistula during household visits, just like immunisation,” she emphasises.

She further notes that services should be taken closer to communities, for example, through medical camps, as many women cannot access facility-based care. 

Kenya Quilts for Empowerment is among the local organisations supporting women living with fistula.

Established in 2018, the initiative aims to restore dignity and livelihoods for women living with obstetric fistula, says Pamela Awinja, director of empowerment.

She took over the programme after the death of her sister, Norah Otondo, the founder and a Rotarian.

“In our villages, many women develop fistula during childbirth. Because of the smell and constant leakage, some are rejected and abandoned by their husbands and communities,” says Awinja.

This reality inspired Otondo to establish the initiative.

Initially, she focused on bringing affected women together not only for treatment but to remind them of their worth.

Women are identified through community health providers, who sensitise communities during church gatherings, funerals and household visits.

Those who know affected women quietly refer them to the organisation, which links them to hospitals for surgery, follows up on their recovery and integrates them into support groups.

“Within these groups, women share their lowest moments, encourage one another and rebuild their lives together. They are trained in quilt-making and small businesses, and they also operate chamas, helping one another sustain decent livelihoods,” says Awinja.

So far, Kenya Quilts for Empowerment has directly linked about 30 women to fistula repair surgery and supported more than 300 others through counselling, economic empowerment and community support.

Yet, Awinja says the work is far from over.

“There are still many women suffering in silence,” she says, emphasising the urgent need to reach deeper into communities and restore dignity to those living with fistula.