There is no unhappier sight than that of witnessing women constantly going through physical and psychological pain. It is nasty and haunting to listen to their suffering. These are women with obstetric fistula ailment.

You need to see what they go through each passing day to appreciate their hard life and agony. Their woes are easily noticeable on their innocent faces. A fistula patient symptomatically presents with involuntary leakage of urine or faeces, constantly soiling her underwear and emitting unbearable and disgusting stench.

Obstetric fistula is a medical condition in which a hole develops in the birth canal as a result of childbirth. This can be between the vagina and rectum, urethra or bladder of a woman resulting in the constant leakage of urine and faeces, a condition predominantly caused by prolonged or obstructed labour lasting more than 24 hours.

Fiona Atemo (right) the physiotherapy nurse at TWH talking to the former patients

Yes, that is what Margret Arago went through for 15 successive years! It is unimaginable, isn’t it? Arago, a resident of Abarilela sub-county in Amuria district recounts how she grappled with fistula coupled with stigmatization from her community, which made her attempt committing suicide.

She lived in loneliness, and could not even go to church for prayers or any village gatherings.   

She was 30 years old when she got married, but experienced four miscarriages and subsequently got fistula.

By the time she had surgery and was cured, she had clocked 47. Her chances of conceiving became very remote because she had reached her menopause!

As for Alice Agwang, a resident of Mukura sub-county in Ngora district, got fistula when she was 20 years old after a Caesarian delivery of her third baby.

Two days after delivery, Agwang started urinating continuously without control, day in and day out. Her husband sent her away, accusing her of smelling terribly. He even took away their two children from staying with Agwang; he never wanted anything to do with her.

Even Agwang’s own siblings abandoned her saying some bad people had bewitched or sent a spell on her. She stayed with fistula for 12 years before treatment. Today, Arago and Agwanga can reminisce their ordeal with nostalgia.

Margret Arago

“We demonstrate no single trace of our former ordeal after treatment. Thanks to the modern surgery that cures fistula.” They made this pleasant pronouncement recently during a two -days training for selected members of the Community Fistula Solidarity (CFS) groups from the Teso sub-region.

The training was organized at the Terrewode Women’s Community Hospital (TWCH) in Soroti, a health facility (TWCH) which was founded by the Association for the Rehabilitation and Re-orientation of Women for Development (TERREWODE), a national NGO that has collaborated with the Ugandan Ministry of Health campaigning against Obstetric Fistula for two decades.

35 former patients of obstetric fistula (survivors) were trained and graduated as activists and leaders of over 40 CFS groups supported by TERREWODE to sustain the campaign against obstetric fistula in Teso and neighbouring sub-regions of Lango, West Nile, Sebei and Bukedi, Busoga and Buganda.

According to the executive director of TERREWODE, Alice Emasu Sreuyange, the objective of the meeting was to reflect on the group's over 10 years journey contribution toward the elimination of obstetric fistula in Uganda and improve maternal health outcomes.

“We also wanted to brainstorm with the group members to identify and document best practices, and the gaps as well as rally consensus on strategies to accelerate efforts for responding and preventing obstetric fistula within their communities,” Emasu said.

Reintegration program

After being treated and cured, the fistula survivors are trained and reintegrated into communities as change agents to improve maternal health through sensitizing their communities about causes, prevention of obstetric fistula and treatment availability for those who have fistula. They are also empowered with entrepreneurship skills to become self-reliant.

Executive Director of TERREWODE, Alice Emasu Sreuyange addressing former patients of fistula

These fistula survivors are the success stories of TERREWODE who, after reintegration, set up groups in their respective villages and make use of the skills and knowledge provided by the organization, to produce music, dance and drama to sustain awareness and mobilize women with fistula to seek treatment.

“I cannot imagine how my life would be without this organization; probably I would have died long ago because there is no way I would have been cured. Even the mere thought of psychological pain would have killed me. To TERREWODE, I owe my life,” said Arago.

Today, Arogo owns a house in a trading centre in her village, which she built with the income from her catering business she started following the reintegration program. Arago is also the chairperson of the women in her clan, and the chairperson of Abarilela community Fistula Solidarity group, an achievement she owes to TERERWODE leaders' training.

Emasu said that since August 2019 when the hospital opened, they have treated over 600 patients. There are two resident gynaecologists who are assisted by visiting doctors from German and Ethiopia, and occasionally, the fistula gurus from Uganda.

The facility provides routine care for obstetric fistula patients with three dedicated theatre days, which has greatly contributed to the reduction of fistula case backlog in the country, although Emasu is quick to note; “there is likely to be a backlash in the number of cases due to the COVID-19 era.

“TWCH is one of the latest innovations we have introduced to freely treat fistula and improve maternal health. The battle against obstetric fistula requires everyone’s involvement, and the participation of survivors is important in sustaining community awareness about the disease,” she said.

Survivors of fistula learn tailoring during social reintegration training at TERREWODE

 For the last 15 years, TERREWODE has supported formation of the community solidarity groups with a membership of over 1,500 active survivors who are currently promoting maternal health across the three Regions of Uganda,” Alice said.

The hospital has fought fistula successfully and has tremendously reduced the backload of women living with fistula. Though there are no latest documented statistics, the number must have reduced from over 140, 000 women who were living with fistula before TWCH, the first fistula hospital in East Africa and the third in the continent.