Fistula, a Triple Tragedy: The Scourge Destroying Women’s Lives and Dignity

My recent visit to the anti-natal care -Outpatient Clinic in Mulago National Referral Hospital was so revealing. I purposely wanted to know more about fistula and its management. Over 25 women (some where fistula patients) sat on a queue waiting to see the gynecologist. I picked a conversation with Sarah Amongin; a 21-year-old fistula patient from Pallisa district. Amongin was here to seek treatment for a fistula injury she sustained in 2010. “This was my first pregnancy, I labored for two days and when I was rushed to Mbale hospital I had a caesarean section/birth, unfortunately the baby was already dead and they also removed my uterus which was completely ruptured,” she emotionally told me with a haggard look in her eyes. “I was told that I can never be able to bear children anymore. It was after they removed the catheter that I realized that I was leaking urine and feces.” Sarah suffered a triple tragedy; she lost her baby, her dignity, and also her economic independence. She had to leave her job as a shop attendant since it was so inconveniencing to be around people. Sarah’s husband could not bear the smell any-more; he abandoned her and married another wife. Though fistula has been eradicated in countries where quality obstetric care is available, in Uganda it is an all-too-common result of the health risks of childbirth.

Obstetric fistula is a condition that very few people know about. A fistula is an abnormal hole , after prolonged and obstructed labor, between a woman’s birth canal and bladder and/or rectum that causes her to leak urine and/or faeces uncontrollably. Most fistulas are caused by childbirth lasting more than 24 hours. The pressure of the baby’s head can injure the tissue in the birth canal creating a hole between the birth canal and the bladder or rectum. The hole in the birth canal causes continuous and uncontrollable leakage of urine, faeces or both. Fistula can also be caused by violent rape or other forms of sexual violence. The woman is left with chronic incontinence and, in most cases, a stillborn baby. The smell of leaking urine or feces or both is constant and humiliating, and survivors often face social seclusion and abandonment. Left untreated, fistula can lead to chronic medical problems, such as ulcers, kidney disease, and nerve damage in the legs thus disability.

Worldwide, 3.5 million women are reported to be living with a fistula condition. In sub-Saharan Africa alone, between 30,000 and 130,000 of women giving birth develop fistula each year (UNFPA). In Uganda, the maternal mortality ratio is as high as 435 per 100,000 live births, and a woman has a one in 18 lifetime risk of dying from complications from childbirth. In comparison, this figure falls to one in 2,400 in Europe. The United Nations Population Fund (UNFPA) estimates that for each woman who dies in childbirth, 15-30 more who survive are seriously impaired and disabled from childbirth-related complications, such as fistula, in less-developed countries.

Statistics from the World Health Organisation also show that obstructed labour occurs in an estimated five percent of live births and accounts for 8 percent of maternal deaths worldwide. It is estimated that more than 2 million young women live with untreated fistula in sub-Saharan Africa and Asia. It should be noted that the available statistics may be lower than the real numbers since the affected women tend to live in fear, stigmatization, silence and isolation. With access to skilled maternal care, such labour can be predicted, identified and treated. The persistence of fistula is an indication that health social systems are failing to meet the needs of women during pregnancy and delivery.
There are several reasons why fistula remains a threat to so many women worldwide. The first is simply a lack of quality obstetric care. The vast majority of these women live in resource-poor countries like Uganda, and tragically, nearly all of these injuries could have been avoided if timely and competent obstetric care was available, accessible, and affordable. In Uganda, where about 2.6 percent of women of reproductive age have experienced obstetric fistula (every one in 40 women); with more women in rural areas reporting fistula as compared to those in urban areas (UBOS, 2006); this means about 200,000 women are living with the condition with about 1,900 new cases annually, yet less than 3 percent have sought care. Whereas an accumulated 4,337 fistula cases that have reported to a health facility are still waiting for repairs in Uganda, only 1,500 fistula patients get a surgery every year. It is worth noting that only 59 percent of women in Uganda give birth with assistance of a trained health worker, compared to over 99 percent of women in the U.S. who have a trained attendant present. Without maternal care, when emergencies develop, women suffer severe consequences. Adolescent girls are particularly at risk for obstetric fistula and face a risk of maternal death two to five times greater than that faced by women in their twenties. There is evidence that delaying pregnancy until after adolescence may reduce the risk of obstructed labour and obstetric fistula. Sixteen million adolescent girls give birth each year, with almost 95 percent of those births occurring in developing countries.

Ahmed Obaid (former Executive Director, UNFPA) once remarked “Obstetric fistula is a double sorrow because women lose their babies and also their dignity.” These women live in shame, isolation and embarrassment that they are unable to control their bodily functions, they are constantly soiled, wet, and they smell. Their pain and humiliation may further be complicated by recurring infections, infertility, and damage to their vaginal tissue that makes sexual activity impossible and may lead to paralysis.

These women are often rejected by their husbands and excluded by their families and communities and usually live in abject poverty. In addition to causing physical torment and social exclusion, fistula has a third devastating effect; economic disaster. Fistula victims are blamed by society for their condition, and, unable to earn a living, fall deeper into poverty and hopelessness. Many of these women are ignorant that the condition can be repaired, and their shame is compounded by the common misconception that fistula is caused by witchcraft. Marginalized and shunned by society, the voices of women with fistula are rarely heard and less reported. The victims live a life of depression, because they believe fistula is incurable.

In a discussion with Honorable Sylvia Ssenabulya Nabidde - Woman Member of Parliament for Mityana (also Chairperson Network of African Women Ministers and Parliamentarians- Uganda Chapter and also Champion for Population and Development), she recognized that fistula is a silent predicament that develops because of either a delay in deciding to seek care caused by community or socio-cultural factors, by being unaware of the need for care, or warning signs of problems; a delay in reaching a health-care facility, perhaps because of transport problems, distance or cost; and a delay in receiving adequate care at the facility. But also lack of or inadequate knowledge about facilities for fistula repair in this Uganda. Although surgical repair can cure most cases of obstetric fistula, poverty, social stigmatization, widespread misconceptions about the condition, and inadequate access to surgical facilities make treatment a nightmare for most of these women.

“As parliament, we are now advocating and engaging more for interventions to prevent and manage maternal morbidity. Prevention is critical to fistula elimination. Women who have the problem need surgical treatment then post-operative care,” Honorable Sylvia Ssenabulya stressed.

In Uganda, most of the hospitals are unable to repair fistulas because of a lack of surgeons trained in the specialized procedures required. Most fistula victims tend to go from one hospital to another without finding adequate care or even resort to using local traditional medicines and often end up losing hope and get resigned to their fate. In a country with a population of nearly 34 million, only 20 Hospitals and about 40 doctors offer fistula treatment. Hon Sylvia Ssenabulya Nabidde stresses the need to adequately equip and staff designated fistula treatment hospitals with what is required to perform these operations. “As government there is need to prioritize, focus and take on fistula prevention and treatment seriously. Most of the fistula operations conducted are mainly conducted in private hospitals such as Kitovu Hospital in Masaka district and those that are performed in government hospitals are mainly performed by visiting surgeons and this means that they are irregular and sometimes not affordable” She says.

The African Women Ministers and Parliamentarians Network in 2008 observed that cases of obstetric fistula were on the increase due to inadequate political and financial support. The then Chairperson of the network in Uganda, also former Woman Member of Parliament- Kayunga district, Honorable Sarah Nyombi, once expressed concern about fistula treatment that is only available during annual or bi-annual missions of visiting surgical teams. She also articulates that more needs to be done to upgrade health facilities, provide equipment and supplies and team-based training of medical personnel. The doctor population ratio of one to over 24,000 is unacceptably high (WHO).

However, it is not only lack of quality obstetric care that leads to fistula. Other risk factors for fistula have socio-cultural roots. Ugandan communities are still dominated by cultures and norms (social and religious) that increase the risk of obstetric fistula. In Uganda, societies are patriarchal and women usually lack the social power to make choices for themselves about health care and pregnancy. The husband is the one who decides important family matters; even when it is about a woman’s own health. Birthing decisions are often made by the husband or mother-in-law, who may support traditional practices. Socio-cultural beliefs and practices that glorify women who endure labour pains and deliver at home as strong, is a contributing factor. Therefore, lack of empowerment and autonomy affects the time when health care is sought, because women need permission from their husbands, or their in-laws to go to a health facility, which delays emergency care.

Female genital mutilation is one of the harmful traditional practices that increase the risk of fistula. In Uganda, the Sabiny and Pokot are the tribes that practice female genital mutilation although recently outlawed in Uganda. In its different forms, female genital mutilation results in impaired female genital tracts which ultimately endanger the health of the mother including fistula.

Other risk factors for fistula are teenage pregnancy (seventy percent of teenagers in Uganda give birth by age 19); illiteracy; poverty; and living in a conflict or post -conflict zone. While about 90 percent of pregnant women make at least one prenatal visit, only 59 percent births are assisted by a skilled health worker in Uganda, Women still face multiple barriers in accessing adequate care during delivery, including life-saving caesarean sections. Fistula is recognised as a maternal health problem but inadequate skilled health workers as well as lack of equipment, medication, and other supplies is a constraint in providing treatment to fistula victims. With 25 percent of Ugandans living in poverty, many women cannot afford the costs of an emergency caesarean section. Even where fistula repair services are provided, a fistula repair is financially out of reach for many Ugandans: the surgery averages 150 U.S dollars, plus more for transport and upkeep since the repair is not a one-time treatment.

The Ministry of Health identifies three delays in accessing maternal services: at home, to the health facility, and at the health facility. A research conducted by Engender Health on fistula victims reveals that two-thirds of the women faced multiple delays in reaching a facility with the necessary services to enable them to deliver safely. A famous African proverb says it all “A woman in labour should not see the sun rise twice”.

In 2007, the UN General Assembly adopted a resolution supporting efforts to eradicate obstetric fistula. In the Sixty-fifth session on the Advancement of Women, the General Assembly resolution 63/158 highlighted that “obstetric fistula is a devastating childbirth injury that leaves women incontinent and often isolated from their communities. It is a stark example of continued poor maternal and reproductive health services and an indication of high levels of maternal death and disability.” This called for efforts at the international, regional and national levels, including by the United Nations system, to end obstetric fistula. It recommended that efforts to end obstetric fistula be intensified as part of support for the achievement of Millennium Development Goal 5, on improving maternal health, including the strengthening of health-care systems and increasing the levels and predictability of funding.

Fistula in Uganda has come to light in recent years because of the efforts of partners in Reproductive Health especially the United Nations Population Fund, Population Secretariat and Ministry of Health, Engender Health and others working to raise awareness. Reducing maternal morbidity and mortality is a priority of the government, focused on addressing maternity-related care, antenatal and postpartum care, basic and emergency obstetric care, sexual and reproductive health needs of adolescents, and health information and education.

Improving access to timely obstetric care is the most important first step that can be taken to prevent fistula from occurring. Therefore among these priorities are plans to: Increase skilled assistance during delivery, lower the fertility rate, provide adolescents with appropriate, accessible, and affordable health services; reduce maternal mortality; increase modern contraceptive use; and upgrade health centers.

Education is another key step in the effort to end fistula. Scientific studies conducted on fistula show that socioeconomic characteristics of women such as maternal education, socioeconomic status, and place of residence have impact on the risk of fistula. The fact is that education directly improves an individual’s knowledge and ability to process information, regarding healthy pregnancy behaviors. And yet the economic independence of a woman has an effect on her ability to make decision about her health.

Many women and communities are not aware of the causes of fistula and that it is a curable medical condition. Over 70 percent of women can be cured with one operation and can resume an active and fulfilling life. Ms. Demita Nabyobo, the medical Coordinator at Reproductive-Health Uganda, stated “More fistula information through intensive media campaigns should be provided to rural communities, including where treatment can be sought”

Promoting the Village Health Teams in Uganda is crucial since they are first health contact in communities. VHTs provide basic health information to households such as maternal care including ensuring women know about fistula prevention, identify fistula victims and guide them where to go for treatment. The VHT concept is innovative and simple yet communities are able to overcome barriers to healthcare access based solely on their motivation to improve the lives of their people.

However, for the few fistula women who get the opportunity for a new life, it is just a drop in the ocean. As Uganda strives to reduce maternal morbidity and mortality by three quarters, prevention, treatment and rehabilitation of fistula victims should be top priority. Expressions from fistula victims, such as, “I am not dead, but I am not living” are so daunting. With more education and access to quality obstetric treatment, we can help fistula victims emerge from the shadows and live in dignity once more. We can stamp out this devastating yet completely preventable condition.

This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous new media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.