The Challenge of Living with Fistula

I have to put on heavy clothes. There are painful blisters and itching. I have to continue doing work and it causes increased dribbling of urine. Nobody wants to stay with me because of the smell.

—A woman from Bangladesh, as quoted in an EngenderHealth study

Without treatment, fistula often leads to social, physical, emotional and economic decline. Although some women with fistula display amazing courage and resilience, many others succumb to illness and despair.

The misery of fistula is relentless. In spite of one's best efforts to stay clean, the smell of leaking urine or faeces is hard to eliminate and difficult to ignore. The dampness causes rashes and infections. The cleaning up is constant, and pain or discomfort may be a continuous as well. The grief of losing a child and becoming disabled exacerbates the pain. The courage many women show in the face of these challenges is extraordinary.

The injury leaves women with few opportunities to earn a living, and many have to rely on others to survive, or turn to begging or commercial sex. In some communities they are not allowed to have anything to do with food preparation and may be excluded from prayer or other religious observances. Although many women with fistula have supportive families, the smell can drive even loving husbands and friends away. For many women, the profound social isolation is worse than the physical torment.

Everyone deserted me - my husband deserted me, my friends deserted me. I know I will never have a husband, I will never have a boyfriend, I will never have a baby. So I just live by myself.

—Fatmata from Sierra Leone, as quoted by BBC

The pain and loneliness associated with fistula is often compounded by a sense of shame and humiliation. In some communities, the condition is seen as a punishment or a curse for an assumed wrongdoing, rather than as a medical condition. The stigma associated with the condition keeps many women hidden away. Some go into deep physical and emotional decline and may resort to suicide. And because so many women with fistula remain marginalized and out of sight, many policy makers - and even some health providers - have failed to recognize the scope and severity of the tragedy.

Maigida ya yarda ni domin ina ciwon yoyo.
My husband threw me out because I was leaking.

Ciw ya sameka sai su kai ka su yarda kai.
If this sickness "catches you" they'll carry you out and throw you away too.

—From a Hausa anthem that builds group identity among women with fistula