“LIVING 60 YEARS WITH OBSTETRIC FISTULA, I’M NOW OK”.

There are so many myths around fistula in our communities. Normally, women who are diagnosed with this problem face stigma and some endure shame and pain for the rest of their lives. The World Health Organization (WHO) estimates that, worldwide, up to two million women may be living with fistula. However, the stigma that surrounds the condition causes many cases to go undiagnosed and therefore untreated, sometimes for years or even decades. A lot of people talk about fistula but the general understanding of it is very limited and thus, we take a step back and ask ourselves: What is it really like to live with fistula? 

What is Fistula? 

Obstetric fistula is an abnormal opening between a woman’s vagina and her urinary tract or rectum, resulting in the leakage of urine, faeces, or both. This debilitating condition is most often caused by obstructed or prolonged labour, and is directly linked to early marriage and motherhood, FGM/C, and a lack of access to high-quality healthcare.  

Amref Health Africa’s Intervention 

Fistula being a crying out loud case for a lot of suffering women who are mostly scared of getting out and seek help, Amref saw the necessity of making an intervention and changing these women’s story to a better version. Amref Health Africa provides holistic care to women living with fistula in Tanzania. Working with local partners, we provide surgical repair, ongoing psychosocial support, along with entrepreneurship training and seed funding so that women can start up income-generating activities, boosting their confidence and helping them achieve financial independence.  

The women we work with are extremely brave: having survived physical and psychological trauma, many go on to work as ambassadors, supporting other women who are living with fistula and addressing stigma in their communities. 

Given that decision-making in all matters at a family and community level is predominantly made by men in Tanzania, it is important to involve. At family levels, men are the main decision-makers, including on key issues such as when and where to seek healthcare services.  

A woman who lived with Obstetric fistula since 1961 

Tabu Ngeleja is one of our very interesting beneficiaries: not just because of her age, but also her courage to live with her condition for decades. Tabu’s story begins with the fact that she got married in 1960 at a very young age and became pregnant instantly. Now seventy-five years old, Tabu Ngeleja lives in the Buchosa district of Mwanza region, and for the first time in many years she felt relieved after having a fistula repair surgery and is now in recovery stage. 

In 2020, an Amref outreach team from Mwanza visited Buchosa communities to raise awareness about fistula treatment and prevention. On this trip, they met Tabu, an elderly woman who had lived with fistula for almost 60 years. While talking to her trying to find out how her society reacted to her problem, with tears in her eyes, she recalled by saying… 

“They said to me, are you bewitched?”… she paused and added, “the society including some members of my family stigmatized me” – but people were wrong about Tabu’s problem. Tabu, like many other women in our communities, had no idea of the existence of fistula and did not believe that she could be treated as people said that she was bewitched.  

The most painful thing that women living with fistula end up having over the years is the total loss of self-esteem and confidence in themselves as women. Tabu said, “I am no longer beautiful enough to impress men to get married again, I am at home such as a statue why should I go now for treatment?”  She asked, “I lived with this problem since Tanganyika got independence [in the 1960s]. My son was the one who convinced me to go and get treatment, after he got education from the Amref outreach team, I could not believe my problem would be cured. He told me even his wife insulted him, saying that, “Your mother is urinating on herself, it’s shameful for us.” Tabu’s world was full of isolation and pain and nobody deserves to live such a life. 

Getting treated 

After learning about the available treatment options, finally, Tabu agreed to go to Bugando Medical Centre, where her fistula was successfully repaired. Tabu also benefited from Amref fistula program, she receives an ongoing psychosocial counselling, equipped with entrepreneurial skills, and introducing her to community support groups.  

With this support, Tabu has resumed her social activities, like attending church and community meetings. She is now an ambassador for fistula in her community, helping to combat the stigma that many patients do face. She is supporting herself by keeping sheep, using the skills she learnt during her entrepreneurship training. 

Amref understands that, when these women are cured, their economic stability is as important as their health and so the entrepreneurial program is an important element to them. 

When she was asked to give her message to women, Tabu advised that, “Women should not get scared, because after 60 years with the problem, I’m now OK”. With a wide smile on her face, she appeared cheerful and joyful. 

Amref Fistula programme is a partnership between Amref Health Africa UK, Amref Health Africa Tanzania, Magu Poverty Focus on Older People Rehabilitation Centre (MAPERECE), and Bugando Medical Centre, funded by The National Lottery Community Fund.

Since the beginning of the project in June 2019 to date the project provided 118/180 fistula surgical repairs, which is funded by other donor out of which, 114 already received entrepreneurship training and 105 provided with seed capital to start income generating activities as part of social economic empowerment. A few who did not receive seed capital had relocated from project area and cannot be easily reached.