“Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room.”

Barbara, a retired New York City elementary school teacher, is the Founder and Executive Director of IOWD. She’s an educator, author, lecturer and photographer who has worked in development projects for more than 25 years.

50-100,000 women worldwide develop obstetric fistula each year, but you don’t seem to hear a lot about it.

I’ll tell you why. Because it’s not pretty. It’s not sexy enough. Once Oprah did something so that was ok, but generally people don’t want to talk about women leaking urine or feces. Women hysterically crying because you can’t help them. What do you do, put that in the newspaper?

There is so much publicity about HIV, tuberculosis, malaria; children with facial deformities and sweet smiles, but there isn’t a lot of publicity about this. So most people don’t know what fistula is about. I certainly didn’t when I first learned of it years ago.

But when they learn of it, they’re shocked.

What is life like when you’re living with this condition?

Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room. They’re constantly washing their clothes. When they get undressed for medical exams you will see they’re wearing so many layers, plus plastic wrapped around them.

Some of these women have been living with a fistula for decades, and they’ll go from hospital to hospital looking for help. Some are so isolated they think they’re the only one with this condition. Often their husbands leave them; their friends; even their own children are repulsed. So there’s no physical touching. No one to hug them. No one to talk to.

You are completely alone. And that’s something that if more women in the world understood, then maybe more would pay attention. My God, they would gather, they would fundraise, they would support organizations that provide education and training and safe surgery.

There’s a nursing assistant you worked with in Niger, Mariama – she came to you with a fistula?

She was going to kill herself. She tried twice, but her mother stopped her.

Mariama had an arranged marriage at 15, got pregnant with a baby boy and went into obstructed labour. He died inside her, and she developed a fistula. She lived in the courtyard of a hospital in Niger, and we met her when she was 30.

In the exam room for the first time I saw that someone had given her a colostomy – I don’t know who, I don’t want to know who – and from a hole in her stomach she had a garbage bag. There was feces all over her, the smell was appalling. She was very much alone, and desperate. She wanted to die. Our doctors repaired Mariama and gave her back her life…and I have to tell you – she is one dynamite woman.

One night when we were at the hospital a catheter came out of one of the patients and there was no nurse, no doctor. So Mariama put the young patient in a wheelchair, pushed her all along the broken cement of the hospital grounds to the emergency room, demanding a doctor to re-insert the catheter. And then she put her back in the wheelchair and brought the girl back to the ward and stayed up all night with her.

You can share that story, because Mariama is remarkable. It shows what women can do for other women. Women who have nothing, still helping each other. Women who understand the pain and humiliation of fistula are happy to help their sisters.

Because unfortunately we know that surgery isn’t always safe.

Some of the women have been operated on before; you see what has been done and it’s horrible, it’s cruel, it’s immoral. Sometimes doing surgery is not the right thing to do, and people don’t understand that. You can’t fix every woman with fistula.

That’s why you need education. Fistula can be prevented – so can maternal mortality, child mortality, all the terrible infections… if you have access to antenatal care and safe obstetric surgery at the right time.

But in the meantime we have to counsel these women, tell them we can’t help them. We give them – which is a sad comment – two cloth diapers and waterproof panties that we make ourselves. When the diapers are ruined they’ll use rags, or whatever cloth they have. At least their clothes won’t be wet; at least the urine won’t leak down their legs.

But when women get access to safe fistula repair surgery – I wish the world could see that too. Last visit to Rwanda we held an outreach session for 70 fistula women, under a big tree at the hospital. About 15 had returned from our previous visit, all dry, and I cannot even begin to describe the explosion of emotion that ran through this group.

The women asked questions, expressed their frustration – and their amazement that there were others with the same problem. When the dry women stood up, they clapped, began to sing and then dance. There was hope. It was electric!

It’s all we need to know that we must keep returning to help and teach the local medical staff so that one day they will do theses surgeries on their own.

Tell us why unsafe surgery is our issue.

We take surgery for granted. But it has got to be available to every woman. It’s 2014! It is every woman’s right to have safe surgery offered to them. Women are the strength of every nation – in low-resource countries they carry the heaviest burdens. They deserve to have safe surgery, it must be provided for them. If women throughout the world stand together, we can help make safe surgery a reality for all.