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KAILALI, Nepal — She crouches, eyes squinting in pain, and drops the sickle with which she has been cutting grass since noon.
“I feel like a lump is slipping out of me,” Lakshmi Devi says hurriedly.
She clenches her fist and holds her belly tightly with the other hand; limping, she disappears behind the tall trees. A few minutes later she is back to slicing grass with dust-caked hands and says, “I pushed my uterus back in, it keeps slipping out. Sometimes it happens when I sneeze.”
Like 10 percent of Nepal’s 13 million women, Devi suffers from the painful and debilitating condition of uterine prolapse. The ligaments and muscles in her pelvic floor are too weak to hold the uterus, which slips into the vagina. The condition is often caused by overwork, not enough recovery time between pregnancies or pregnancy at a young age.
By sunset, she has carried more than a dozen loads — wood, water pots, cattle fodder, millet and dried cow-dung cakes. As the sky turns purple, she ushers the goats and cows into the sheds and takes her first break. A brood of hens runs loose and the smell of woodsmoke fills the spring air.
Sitting cross-legged in the courtyard of her mud-brick house, Devi stirs a pinch of salt in her black tea and, sipping it, says, “Five days after giving birth to my third child I was cutting crops and my uterus first slipped. Ever since, my back and lower abdomen hurts constantly; I feel heavy.” She looks much older than her 38 years, her face lined with wrinkles from age and hard living. Married at 15, she has six children and has had two miscarriages.
But engulfed by fear and shame, she kept her pain a secret.
“I was so scared my husband would find out about my problem. He won’t be able to have sex with me and he will get a new wife,” she remembers thinking.
A 2007 study by the Center for Agro-Ecology and Development reported that in Nepal, women with uterine prolapse are considered impure and isolated. About 32 percent did not tell anyone about their condition, of which 66 percent cited embarrassment as the reason for their silence, while 10 percent believed it was normal for a woman’s uterus to prolapse.
The pain caused Devi to be slow in performing household chores, and her husband repeatedly called her a “lazy buffalo.” Two years ago, she confided in an aunt, who took her to a health care post a few villages away, lest someone might see her and inform her husband.
“My greatest fear was that there would be only male doctors,” she says. But it was a female doctor who inserted a rubber-coated ring pessary, advising Devi to change it every few months for fear of infection. “It was like a rubber bangle and gave some relief. But I hardly get time to go for checkups and replace it regularly.”
There is very little data about the prevalence of uterine prolapse globally. In 1996, the United Nations Population Fund (UNFPA) estimated that it could affect 2 to 20 percent of women under the age of 45. This condition is more common among older women, post-menopause. In 2001, The American Journal of Obstetrics and Gynecology reported that the median age of women seeking treatment for uterine prolapse in the United States is 61 years.
But in Nepal, the condition is overwhelmingly affecting younger women, with tens of thousands of women in their 20s suffering from the most severe form of uterine prolapse.
According to a 2006 study by the UNFPA, one third of 600,000 women with uterine prolapse require surgery to strengthen the pelvic floor and tighten the walls of the vagina, or a hysterectomy. In less severe cases, exercise can strengthen the muscles of the pelvic floor, or a ring pessary can be inserted in the vagina to hold the uterus in place.
“It is absolutely true that uterine prolapse is a global issue, affecting women in many countries. But in Nepal a perfect storm of factors has come together to create a human rights crisis affecting hundreds of thousands of women and girls,” says Audrey Gaughran, Amnesty International’s director of global issues.
Gender discrimination, lack of access to health care and education, and decades of official neglect are some of the major causes for the high incidence of the condition in Nepal, she explains. According to a 2014 report, “Unnecessary Burden,” by Amnesty International, “gender discrimination is the cause and the consequence of uterine prolapse.”
“Women and girls are in essence denied control of their own bodies and lives. Many are unable to decide if or when to marry or have children, whether to use contraception or how many children to have,” Gaughran says.
Even during and immediately after pregnancy, many women work long hours doing hard physical labor, propelled by family and societal expectations, Gaughran says. “Ensuring that they are able to access quality health care during pregnancy is often out of women’s own hands; decisions are often made by male family members. There is also a lot of social stigma around uterine prolapse.”
She adds that their research shows that some Nepali ministries were more interested in “passing the buck” to others than in dealing with the problem head-on.
When Chandrawati Mahato’s uterus prolapsed after the delivery of her second child, she thought it was her fault. Her mother-in-law said there was no cure for her condition. Mahato, 42, had a surgery a few years ago, after suffering in silence for 23 years.
“Women don’t support each other. Uterine prolapse is such a big problem and women are suffering in silence; they hide their condition and are ashamed. Women who are known to have it are looked down upon; some smell because of urine leakage, and even women say that you did something bad so you deserve this,” she says.
A human rights issue
Manju Devi Yadav, 27, vividly remembers giving birth to her second child, when she developed uterine prolapse.
“The baby wouldn’t come out and the birth attendant tried to push it out with her feet on my abdomen,” she says. Despite suffering severe pain and bleeding after her child’s birth, she stayed alone in a cowshed, following the tradition of Chaupadi prevalent in the far-western and midwestern regions of Nepal. During menstruation and childbirth, women are believed to be unclean — that their impure touch can bring doom on family, community and domestic animals — so they are exiled to huts and caves. During those six days, she was allowed to eat only porridge made of black sugar.
“I went to a [health] camp in a village nearby but they told me that I was too young to have my womb removed, so I was left without any help. I am in constant pain,” Yadav says.
Aruna Uprety, a Kathmandu-based doctor and women’s health rights activist, calls the neglect of uterine prolapse a human rights violation and says there is “too much medicalization.”
“I am a doctor, and I don’t call it a medical problem. If it were, it would have ended with surgical intervention. But women continue to suffer even after surgery. Prevention, awareness and removing the risk factors can solve the problem,” Uprety says.
In 2008, a public interest lawsuit filed by women rights activists led the Supreme Court of Nepal to call uterine prolapse a “human rights issue” and criticized the government for inaction and lack of coordination between government ministries.
But six years on, Uprety says, little has changed.
“The government gives out tenders; small local organizations lured by money take up the job of doing surgeries. It is like butchering women. The doctor conducts 20 to 30 surgeries in one- or two-room clinics and leaves.” There is no post-surgical care and often women have to walk four to seven hours to return to their homes immediately after the surgery, she adds.
Since 2008, the government of Nepal has been providing funds to support surgeries for uterine prolapse, with 26,000 surgeries conducted in two years. Each surgery costs $186, while ring pessaries are available for $3, and most of the treatment is conducted in temporary surgical and screening camps rather than institutional centers or hospitals. In 2010, the government conducted 14,041 surgeries and treated 7,000 women with nonsurgical methods. The target is to perform 40,000 surgeries a year.
Women’s advocacy groups have criticized the government for depending too much on surgeries and not taking care of prevention, and the practice of holding surgeries in health camps has been discontinued; now surgeries will be held in medical institutions.
At the Ministry of Health and Population, Shilu Aryal, chief of the Safe Motherhood section of the Family Health Division, says that starting next year, surgeries will be conducted daily in all medical institutions instead of health camps, and they are training health workers in remote areas so they can provide better reproductive health services and awareness. Starting in July of this year, they will distribute 10,000 silicone pessary rings, which is a less invasive treatment option.
“We focus on treatment and surgery, but other departments are working towards prevention, especially removing discrimination,” Aryal adds.
The UNFPA reports that 80 percent of the women who went through surgery for uterine prolapse say they “lost hope in life.” Of the women surveyed, 88 percent said the condition was caused by physical violence by their husbands and 72 percent believed they had it because they satisfied their husbands’ desire for sex.
Even so, many women with advanced uterine prolapse are still waiting for surgeries. Kesaria Rokka, 28, in Achham district, says angrily, “First they asked for my husband’s consent, which was so hard to get. But now they are saying after the monsoons, we will have a camp.” Her uterus is protruding from her vagina and she has to take antibiotics to fight ulcers and infections.
Asked what she thinks caused her condition, she says, “The doctor said too much hard work, too many babies too soon. But I think it is my bad luck.