While I was in the middle of uploading this feature to the blog, I noticed an email from Dr. Aruna Upreti in my inbox.
She wrote, “I too was planning to write on this topic, but you were quicker. I’m glad. Please help such women who are in such difficult circumstances.”
That made me happy. I replied to her as well.
We regularly get to read Dr. Upreti’s articles in the Nepali press. It’s not easy for a journalist to write about health. The reason: it’s a technical subject. And now, I’ll share a bit about how this piece came to be written.
Earlier on this blog, I had written about a trip I took with a team from the news agency Noor Images. These are the stories of the people I met and noted down during that same journey. Dr. Mohan’s comment — that we too should understand the stories of people that foreigners take away in audio, video, and photographs — seemed fair to me.
In fact, treatment for fistula is available fairly easily in the capital’s Patan Hospital and in BP Koirala Institute of Health Sciences in Dharan. Both are government hospitals. Whether the free or discounted treatment currently available will continue for the long term is not guaranteed. But for as long as the service exists, patients need to know about it and be able to reach it. They must receive the service.
Stories like this are often planned or sponsored, making them difficult to publish. Especially when such content is sent from outside the capital, editors on the desk ask a lot of questions. If sent as a regular news item, one might be asked — “Was this written under some fellowship? For which organization?”
I consider myself lucky that I didn’t have to face such questions. The reason: I had told Koseli’s coordinator colleague, Yagyash, about the subject even before I began writing. This was not written for any fellowship or organization. I was encouraged to write on environmental, bird, and wildlife topics — but after he said, “Alright, go ahead and write,” I still took some time before starting.
There’s no monetary motive in writing 'Fistula Life.' But after meeting women suffering from this disease, I felt — “May no one have to go through this.” After a journey of about a week, I wanted to collect and share the stories of the women I met — women living with hardship but also with resilience. This piece contains only a few representative stories. I believe these few women represent many others steering their lives while bearing the suffering caused by this disease.
We still haven’t been able to uncover enough such stories. On issues of women’s and children’s health, education, and social concerns, there’s much more to explore. This process will continue.
Below is “Fistula Life” as it was published in the middle pages of Kantipur Koseli on Saturday, Magh 3, 2071 (January 17, 2015). When copying the material online, I didn’t know how to adjust font size and spacing. So I’ve used the original copy I sent to Koseli. In publication, some lines were cut or edited — probably to remove repetition, irrelevance, or unnecessary parts. Let’s read it with that in mind.
The Main Story
After walking north along the Khahare Khola trail, you reach a small two-room hut — one living/sleeping room and a small kitchen. As you enter through the main door, the walls are full of photographs. The expressions in the wall portraits make life seem cheerful and lively. Nothing about Dharan-13, Amar Basti’s Bina Kathayat suggests that she has been living with a storm inside her heart.
“I’ve had five operations. Still not fully cured,” she said. “I live in hope… maybe, maybe not. Who knows?”
The 46-year-old Budhathoki (Kathayat) is a fistula patient. According to doctors, fistula is a condition in which stool and urine cannot be controlled voluntarily. This happens when the urinary tract or bladder develops a hole or tears.
For the 26 years she has been living with the disease, life has become “normal” in a way. There’s hope, but little confidence. After all, when an illness doesn’t heal the first or second time, it’s natural to start feeling that way.
My meeting with this tall, solitary woman of Amar Basti happened by chance. She was one of the subjects sought out by the international photo agency Noor Images for stories of people fighting illness. When their team offered to take me along, I got this opportunity. Bina was the first person I met on this journey.
Photographer Asim Rafiqui and videographer Pep Bonet took her portrait and video, while I listened to her story. Every person has a story, and the ways of expressing one’s experiences can seem similar — but when a woman stands alone without family support, she draws attention, especially if her struggle is unusual and exemplary. In Bina’s case, the “achievement” was surviving a quarter-century of life with this disease.
She recalled her days in Nirmalidanda VDC, Khotang, in eastern hills. Her cousin-sister died, and the widowed brother-in-law married Bina when she was 20.
“They married me in Jestha (May/June), and by Bhadra (Aug/Sept) he had already married another girl as my co-wife,” she said. “I was expecting a baby in Chaitra (March/April).”
Her eyes brimmed with tears as she recalled the past. That day she had gone to the forest to collect fodder and firewood when severe abdominal pain struck. She returned home with the load of grass, but her condition worsened.
“I didn’t know how childbirth happens. The health post was far. My family members were ignorant,” she said. “By the third day, the baby’s head was partially out. In the village, when cows can’t give birth, men pull the calf out. A man like that came and pulled my baby out — and threw it away. After that, the pain was unbearable. I became gravely ill.”
She lost control of both urine and stool. Her lower body became paralyzed. The family neglected her. News reached her maternal home. Relatives came, thinking she would die.
“They cried, saying ‘she will die.’ But my sister came, called a porter, and took me to my mother’s home,” she said.
It took eight months before she could leave her bed.
“I began crawling slowly using my hands and knees,” she remembered. “That year, after my sister married, only my father and I were left at home. Mother had died young. My brothers had gone abroad for work years ago.”
Villagers had heard that obstructed labor could be treated at Mission Hospital in Okhaldhunga. Father and daughter made the journey on foot for a day to reach the hospital.
“A foreign doctor examined me there,” she said. “He said it was a serious disease — the bladder was torn — and wrote a referral to Patan Hospital.”
But for a poor family struggling to eat, the treatment was beyond reach. She began cooking for her father while living at her maternal home.
Two years later, someone in the village told her treatment was available in Dharan.
“An Indian doctor there said the surgery would cost 20,000 rupees. I didn’t have the money,” she said.
She went to her brother’s home in Sijuwa, Morang, and stayed for two years — but he didn’t arrange her treatment either. Seeing her apparently healthy, though she couldn’t control urine and stool, her brother also refused.
She returned to the hills. Soon after, a woman from her village called her to Dharan to work in exchange for help with treatment.
“For ten years I worked for them — collecting firewood, cooking, looking after children — but they never arranged treatment. When I said my father was alone in the hills, I left their house,” she said. “Once, I even got a recommendation letter from the ward office for treatment, but the person reading it looked at me and said, ‘You’re trying to cheat us.’ I felt so hurt.”
She left that house and took shelter with someone in Amar Basti, Dharan. With 1,500 rupees she had saved, she opened a small vegetable stall in a rented booth.
A regular customer woman asked her one day why it smelled when she sat near her. When she told her problem, that woman’s brother-in-law, a doctor newly posted to BP Koirala Institute in Dharan, advised her to come for treatment.
This time, the doctors told her frankly: “It may heal, or it may not.”
By last year, she had undergone five surgeries — two in Patan, three in Dharan.
“The leakage isn’t as quick as before,” she said. “But until I can urinate and defecate normally, without leakage, how can I say I’m cured?”
The article then continues with similarly detailed, deeply human stories of other women — Radhika Rai from Okhaldhunga, Ranjana Devi Mehta from Saptari, Rita Devi Chaudhary, Dhanikumari Mukhiya, Sunita Devi Mahato — all of whom suffered obstetric fistula due to prolonged obstructed labor, early marriage, poor maternal care, and lack of timely medical attention. It weaves their voices with observations from doctors like Dr. Mohan Chandra Regmi at BP Koirala Institute, who stresses the need for awareness, early diagnosis, and prioritizing fistula treatment in health policy.
Treatment in Dharan and Patan is currently free thanks to UNFPA support, costing about 50,000 rupees per patient, but sustainability is uncertain. Each year about 500 women receive this life-changing surgery in Dharan alone — yet many still suffer in silence due to stigma, lack of knowledge, and distance from services.
***
(२०७१ माघ ३ शनिबार कान्तिपुर कोसेलीमा प्रकाशित सामाग्री यहाँ अंग्रेजी रुपान्तर गरेर राखिएको हो )
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