May 23rd marked the United Nations International Day to End Obstetric Fistula. This condition is not well known in Europe and the US where it has been virtually eradicated for over a hundred years. However, it is estimated that more than 2 million women live with untreated obstetric fistula in sub-Saharan Africa and Asia and between 50,000 to 100,000 women worldwide develop obstetric fistula each year.
Obstetric fistula occurs during an obstructed labour, when the baby’s head exerts prolonged pressure on the mother’s pelvis causing tissue damage and creating a hole (fistula). This results in leaking of urine and/or faeces through the woman’s vagina. Obstetric fistula is a preventable condition that is closely linked to child marriage, early pregnancy and lack of access to adequate maternal care. Women suffering with fistulae often have limited access to emergency maternal health care due to economic and geographic factors. In some areas it is simply unavailable. In addition to incontinence, the possible damage to the pelvic nerves can cause paralysis in one or both of the woman’s legs, making it difficult to walk. Affected women also face risks of premature death from infection and kidney failure. Along the above suffering, in 90% of cases of obstructed labour the baby does not survive, which means the mother has to deal with the loss of a child as well as distressing internal injuries.
What is devastating is that approximately 80-95% of fistulae can be closed with simple surgery but knowledge about the surgery, access to healthcare and the cost of the surgery (around £250) make access to treatment very difficult especially for the poor rural women most affected by this condition.
“She was in labour at home for four days; the health centre was far away (one full day walk). On the fifth day they took her to the hospital in a hammock. The baby had already died; the nurses put their hand to pull the baby out, she was paralysed for six months. She stayed with fistula for six years.”
Obstetric Fistula Champion, Sierra Leone
FORWARD, an African diaspora women-led NGO founded in 1983, has been working to end obstetric fistula since 1998 with programmes in Nigeria, Tanzania and Sierra Leone. Our programmes take a long term and holistic approach and are informed by the needs of the communities we work with. Obstetric fistula was revealed to be an issue of concern to the girls and women we were initially working with on FGM and child marriage.
In addition to the morbidity associated with obstetric fistula, there are has severe social consequences for the women who feel shame and experience social stigma due to this disabling condition, as communities generally do not understand the cause. Many women with fistula are blamed for their condition and the loss of their baby and are often isolated and rejected by their husbands, families, and communities because of the smell.
“When she got fistula, she had a child but the child died and her husband abandoned her. He said that he cannot stay with the woman who made the bed wet. Her mother in law told her to go back home because her husband was not there anymore; ‘also you have killed our child, we have no money to buy you soap every day. You better go back home.’”
PEER Researcher, Tanzania
“My friend goes from village to village because when the villagers find out about her situation, she goes to the next village.”
PEER Researcher, Sierra Leone
The gap FORWARD is addressing the lack of re-integration interventions for women who have had obstetric fistula. The stigma from being incontinent and a wider lack of understanding in communities about the cause results in isolation from their communities. Once they are medically cured, the social stigma nonetheless can remain and women are often still shunned by their communities. Time must be invested following treatment to provide information, education and work prospects to restart their lives as well as support and counselling to restore their self-esteem, and to prevent a recurrence of the fistula should they return to their husband or remarry.
“When I arrived at my village from hospital they never believed that I have recovered, so they gave me an exercise to stand for an hour to see if I will get with the urine. It is hard for other people in our community to believe that fistula patients have completely recovered and because of this women still face discrimination.”
Obstetric Fistula Champion, Tanzania
Using participatory research, girls and young women affected by obstetric fistula are trained to be the researchers to conduct community based research on the prevalence and social factors around obstetric fistula. This insightful and personal research informs FORWARD’s fistula initiatives. In partnership with local organisations, we then aimed to remedy the social impact of fistula by providing post-treatment reintegration programmes which build confidence, provide leadership training and training in income generating skills.
In Sierra Leone and Tanzania, women are now going into their communities to act as fistula champions, signposting women affected by fistula to appropriate services and providing a support network for survivors. Our work in the diaspora is to amplify fistula survivors’ voices [by publicising the research findings], so they are heard on a national and international level, demanding improved access to maternal health care, increased availability of repair surgery and post-operative care. We are proud to support locally owned change, driven by girl and women led organisations, by providing financial and technical support to enable them to support girls and women in their communities.
Years of undertaking fistula programmes have taught us that it is not enough just to do repairs. The repairs must be a part of an intervention that targets many levels: the community level to increase understanding of the causes of fistulae, and to decrease the stigma and isolation that women with fistula face, resulting in a community acceptance of the women who have been repaired; a legislative focus to prevent girls being forced into marriage as children and a service focus so that girls who are pregnant as children are able to seek and access quality medical care specific to their needs. All this must be underpinned by a focus on the girls either accessing formal or non-formal education or being supported to undertake some productive business enterprise. If all this is done in a concerted way – this will ensure that FORWARD’s vision of no-girls left behind is realised.
“In the first place I was ashamed to explain my problem to others, I only ever thought I was the only one suffering from this sickness called fistula. I thought that when I explained my problem to anyone they will gossip or back bite me but this research and workshop has made me realise that I am not alone and that there are others like me and that this process will help other women too.”
Obstetric Fistula Champion, Sierra Leone
To find out more about Obstetric Fistula our reports are available online:
‘I used to cry a lot every night’: Voices of Women with Obstetric Fistula in Bo, Sierra Leone (FORWARD and Haikal Foundation, April 2014)
“Do not hide yourselves, you are not cursed”: A PEER Study on Obstetric Fistula, Mpwapwa, Dodoma, Tanzania (FORWARD and UTU Mwanamke, December 2014) An executive summary of the research is also available to read in Swahili.
Support FORWARD’s work with African girls and women! Text FWRD30 £5 to 70070