Stigma, ignorance driving fistula cases in eastern Uganda

In Uganda's eastern region districts of Namayingo, Bugiri, Tororo and Busia, fistula is unfolding. The devastating health crisis, aka obstetric fistula, is shattering the lives of several teenage mothers.

Obstetric fistula is a hole in the birth canal caused by obstructed labour. The condition causes urinary and faecal leakage, abnormal vaginal discharge, tissue damage and kidney infections.

At Busia district's Masafu General Hospital Dr Emmanuel Tusiime, the obstetrics and gynaecology medical superintendent, reports two to three new fistula cases daily.

"We're overwhelmed. Last month alone, 85 mothers were detected with complications. The majority are teenage mothers aged 14 to 19,” Tumusiime says.

Judith Taaka, the midwife in charge of the maternity ward, attributes the rise to delays in seeking medical attention during labour: "Many expectant mothers rely on traditional birth attendants (TBAs), who often mislead them". This lack of access to quality maternal care has disastrous consequences.

Testimony

Rispah Nekesa, a 35-year-old mother of six, knows this struggle firsthand. After developing fistula during her sixth childbirth, she endured years of isolation and shame.

"I couldn't perform daily tasks or attend community gatherings," she says with a voice laced with emotion. Nekesa has finally sought treatment at Masafu General Hospital.

Fellow patients, Sicholastic Mugeni and Annet Natocho, share similar stories. 

Rispah Nekesa, a 35-year-old mother of six, knows this struggle firsthand. After developing fistula during her sixth childbirth, she endured years of isolation and shame. (Credit: John Musenze)

"Traditional birth attendants told me I'd deliver safely at home,"Mugeni says. Natocho adds: "We are often misled, but health facilities are the safest option." Both mothers now advocate for hospital births.

The United Nations estimates two million women live with fistula in developing countries, with 50,000 to 100,000 new cases annually.

Uganda's National Obstetric Fistula Strategy, launched in 2011, aims to prevent, treat, and reintegrate affected women.

Breaking the silence

Sayid Bwire and Peter Samuel, family men from affected households, speak candidly about the impact of fistula. 

"Domestic violence rises when women can't perform their roles,"Bwire says, while Peter adds: "Fistula affects entire families, not just individuals".

Tusiime says: "We need increased awareness and community engagement." Judith Taaka concurs, "Education is key. We must empower women to seek medical attention promptly". 

According to him, one of the most difficult challenges in treating fistula in rural Uganda is a lack of awareness and understanding of the condition among affected communities, healthcare providers, and policymakers.

“Many women are unaware that their symptoms are treatable or believe they have been cursed or punished for past sins, which causes them to delay seeking medical care and worsens their suffering.”

Furthermore, the stigma and discrimination associated with fistula create barriers to accessing care and support for affected women in rural areas.

At Busia district's Masafu General Hospital Dr Emmanuel Tusiime, the obstetrics and gynaecology medical superintendent, reports two-three new fistula cases daily. (Credit: John Musenze)

Misconceptions about the causes and consequences of fistula spread myths and misconceptions, resulting in social isolation, rejection by family and community members, and loss of livelihood.

As a result, many women suffer in silence, unable to receive the medical care and emotional support they require to rebuild their lives and reclaim their dignity.

Judith Taaka says in addition to social barriers, logistical and financial constraints make it difficult for women in Uganda's rural areas to access treatment.

Many healthcare facilities lack the necessary specialised equipment, trained personnel, and infrastructure to provide comprehensive fistula care, forcing women to travel long distances to urban areas for treatment.

Transportation, lodging and medical expenses can be prohibitively expensive for low-income women and their families, exacerbating disparities in access to care and perpetuating cycles of poverty and inequality.

A new dawn

As Rispah undergoes treatment, she's determined to rebuild her life: "I'll advocate for hospital births and fistula awareness".

In eastern Uganda, change is underway. With increased awareness, improved healthcare access and community support, the stigma surrounding fistula is slowly lifting.

Richard Mugahi, the health ministry's commissioner for reproductive health, advises mothers to seek medical care from hospitals rather than TBAs, as they can put mothers at risk. 

"85% of pregnant mothers can deliver normally, but how sure are you that you are not in the 15%. No mother should risk. Go for all the recommended antenatal services and deliver from a health facility," Mugahi said.