Ending the Suffering in Silence

Discussing fistula openly can help reduce the stigma associated with it. And learning that the condition is treatable can transform the lives of those who had lost hope.

In many places, fistula is so misunderstood that there is not even a word that precisely describes the condition: it is referred to as simply the 'urine problem' or 'the childbirth injury'. Women with fistula have been called 'destroyed women' or 'she who is no longer a woman'. Correcting myths about fistula, and providing accurate information about its causes and cure, can help prevent it from occurring, encourage compassion for those who endure it and lessen the stigma that is often attached to it.

Many of the girls and women with fistula are isolated, with little news of the outside world. Those who do not find out that a cure is possible may become resigned, demoralized or deeply depressed. The knowledge that fistula can be cured can transform the lives of those on the verge of giving up.

Word of fistula treatment often spreads rapidly even in remote areas. By talking about her experiences, a woman who has been treated for fistula can motivate others to seek care as well. Some treatment centres are reluctant to advertise fistula repair beyond word of mouth because they fear having to send patients away without treatment.

A sisterhood of suffering

My father heard on the radio that I could be fixed, and he told me about it. If he hadn't been listening to the radio that day, I would still be leaking.

—a fistula patient in Uganda

Because fistula can be so profoundly isolating, many women derive great satisfaction from being with others who share their disability. At the Niamey National Hospital Fistula Pavilion in Niger, for instance, nearly 50 women with difficult cases lived for several years while waiting for treatment (many have now been successfully treated and returned to their homes). At the Pavilion, they formed a community where they cooked for one another, sewed and braided each other's hair - and lived without feeling ashamed. In other fistula wards as well, women form deep bonds with others who have suffered in the same way.

I will be able to go to church again. I will be able to help a bit in the fields. I will be able to go shopping and to go on the back of someone's bicycle - all the things that other people normally do.

—Rukia from Tanzania, as quoted by BBC

What the Campaign is doing

The Campaign is educating individual women and men, communities, policy makers and health professionals about how fistula can be prevented and treated. Ending the 'culture of silence' that has surrounded fistula is a major strategy for improving lives and mobilizing resources.

The Campaign has helped bring the issue to the attention of millions of people in the developed world. [see press clips]