I was very upset at having to deal with people’s disgust and disdain for me, so I decided to go and make a shelter and wait for certain death. The labor lasted for a week. The baby died in my womb. After the doctor took it out, I felt something leaking. I was living with my husband when I got this problem. He told me to leave, and he married someone else. So I took my daughter and came to live here in this condition. I have no married life. I don’t have a job, I don’t mix with people. I live here hidden away from others. This is not life. Death would be better than this.
This is the voice of Ayehu, a woman living with an obstetric fistula and featured in the PBS documentary series, Nova: A Walk to Beautiful. In the United States alone, a third of women experience pelvic floor disorder and nearly a quarter of women report having one or more symptoms related to pelvic floor disorder. The primary symptoms associated with a diagnosis of pelvic floor disorder are bowel incontinence, bowel strain and pain, urinary frequency, urinary pain and incontinence, urinary leakage, pelvic pain, genital pain, pain during intercourse, vaginal bleeding, vaginal discharge, and dryness. Yet, even in western nations the diagnosis and treatment is generally not discussed, feelings of sexual unattractiveness, embarrassment, and shame as a result of incontinence and prolapse arise, and sometimes symptoms are just tolerated instead of seeking out treatment. However, while there have been large population-based studies in the United States characterizing the prevalence rate of pelvic floor disorders, few studies have been published on the pervasiveness of pelvic floor disorders in low-income countries. I want to talk about the pelvic disorder symptoms that arise as a result of obstetric fistulas and address the following: what is an obstetric fistula, who is affected by the disease, how it occurs, how fistulas are treated, and what can be done to prevent the ubiquity of the condition. It is my hope that you not only leave this post with the knowledge of the tragedy of this disease but you walk away with the desire to incite change for those affected.
An obstetric fistula is an abnormal opening or hole between the reproductive tract and the urinary or anal tract or both that occurs in women after several days of continued or obstructed labor (Dangal et al., 2013). During the days of unattended protracted and obstructed labor, the head of the fetus sits against the bones of the pelvis cutting off the blood supply causing necrosis of the soft tissue of the vagina (Dangal et al., 2013). This leads to fistula formation, a hole between the vagina and rectum and/or bladder that result in incontinence of urine and/or feces. The most common causes of obstructed labor are a misalliance between the fetal head and the mother’s pelvis, the infant may be too large in relation to the pelvis, or the woman’s pelvis may be abnormal or underdeveloped (Tayler-Smith et al., 2013).
I started sleeping on the ground, because I was wetting my bed. For 10 years I lived like this. (Fikre from A Walk to Beautiful)
There are even more complications that arise from prolonged obstructed labor. These include lumbosacral compression referred to as “drop foot”, vaginal fibrosis, and stones along the fistula track due to dehydration because of a decreased intake of water either from a lack of access to clean water or trying to control incontinence by not drinking water (Dangal et al., 2013). Additionally, women with obstetric fistulas commonly suffer from infections of the skin, neurological and orthopedic injuries, kidney failure from increased infections, and infertility (Sagna et al., 2011). Likewise, it has been medically shown that a constant leakage of urine and feces can damage the vulva.
These women are not welcome in a general hospital. They can’t often get in because of the tremendous pressure on the hospitals for other more urgent things. Also they are not welcome because they’re smelling, and they are poor, and they are often turned away by the guard at the gate. This is really why we built the hospital. (Dr. Catherine Hamlin, Co-Founder, Addis Ababa Fistula Hospital from A Walk to Beautiful)
The emotion ramifications are equally severe. Women are plunged into social isolation and blamed for the death of the child and for their disease (Castille et al., 2014). The incessant odor that accompanies untreated incontinence leads to women being banished from their communities and families (Sagna et al. 2011). Obstetric fistula patients have a 30-60% marital abandonment rate (Dangal et al., 2013). Not only do women afflicted with obstetric fistulas experience a high rate of divorce, they also encounter sexual dysfunction, amenorrhea, and depression. In one study conducted in Ethiopia, Zeleke et al. found that fistula and pelvic organ prolapse patients had a 71.2 % depression prevalence with fistula patients comprising 97.3 % of the positive respondents for depression (2013). Indeed, women living with the obstetric fistula condition are experiencing a physical, emotional, and social perdition.
All but eradicated from western nations, this condition affects women in low-income countries who do not have access to basic health care services or necessities. The social and economic causes of obstetric fistula include a paucity of trained birth attendants, lack of available transportation if an emergency should arise during childbirth, the absence of adequate obstetric facilities, and ultimately extreme poverty. In one country case study of Malawi, women with obstetric fistulas had the disorder for a median of 3 years before seeking out treatment for a variety of reasons including lack of awareness of available treatment, scarcity of financial resources, fear of surgery, and cultural beliefs (Kalilani-Phiri et al. 2010). While ninety-nine percent of maternal deaths occur in low-income nations, those that survive complicated labor are left with bodily damage from the trauma and most often the devastating loss of a stillborn child (Dangal et al., 2013).
It is widely quoted that 2 million women worldwide are affected by obstetric fistulas. This is an estimate given by the World Health Organization (WHO) in 2006. However, most of the available data comes from treatment facilities and not from population based studies (Rushwan et al., 2012). Due to the social isolation and the shame associated with the disorder, the true extent of the problem is greatly unknown. With husbands, families, and communities rejecting them, women suffering from obstetric fistulas often do not remain in their household making data collection all the more difficult. Difficulties also arise when determining gynecological morbidities because of the hesitancy, secrecy, and sensitivity of discussing female reproductive disorders. The annual occurrence of fistulas is estimated at 50,000 to 100,000 worldwide but some put the yearly prevalence of obstetric fistulas at over 200,000 (Castille et al., 2014). Another study placed the annual estimate of women coping with obstetric fistulas between 30,000 and 130,000 in sub-Saharan Africa alone (Biadgilign et al., 2013).
If I get cured and go back home, I would like to dress up like my friends, walk like my friends, live a normal life like my friends. (Almaz from A Walk to Beautiful)
Treatment of fistulas usually results in surgery after a trial of urinary catheterization takes place. In some instances, even with surgery continence is not achieved and the woman has to have subsequent surgical repair. The rate of success of operation is reduced with each surgery (Castille et al., 2014). In the article “Impact of a Program of Physiotherapy and Health Education on the Outcome of Obstetric Fistula Surgery,” Yves-Jacques Castille and colleagues (2014), examined whether health education and pelvic floor physical therapy could decrease the number of surgical failures and improve functionality for women after their initial surgery. The researchers found that simple intervention on health education post-operative care and follow-up physical therapy improved healing and reduced incontinence. Additionally, pelvic and abdominal wall training by a physical therapist before surgery also led to improved outcomes for women (Castille et al., 2014). In a country case study of Burundi, Bishinga et al., found that surgical repair breakdowns occur after the 6 month period because of the lack of follow-up care compromising long-term successful fistula closure (2013). The authors of the study entitled “High Loss to Follow-up Following Obstetric Fistula Repair Surgery in Rural Burundi: Is There a way Forward?” suggest that after surgical repair patients should be monitored to ensure long-term success and this could occur through addressing women’s transportation needs to the treatment center and financial needs to secure this transportation (Bishinga et al., 2013). An unrelated study accessing obstetric care in Burundi calls for a multifaceted approach to treating the disease (Taylor-Smith et al., 2013). Instead of the common surgical fistula camps that rely on resource-scarce surgical supplies and are often unprepared to address the surgical needs of women who have complex fistulas, Taylor-Smith et al. developed a comprehensive program in Burundi that included access to post-operative care, physical therapy, and social and economic counselling (2013). The authors published their findings in an article entitled: “Obstetric Fistula in Burundi: A Comprehensive Approach to Managing Women with this Neglected Disease” (Taylor-Smith et al., 2013). Their center, while still in need of vital resources such as urodynamic stress incontinence assessment post-surgery, seems to prove effective with a fistula closure rate of 87% at the time of discharge (Taylor-Smith et al., 2013).
In order to prevent obstetric fistulas, women globally need better access to prenatal emergency obstetrics and cesarean care in combination with family planning, education, economic development, and gender equality (Castille et al., 2014). Alongside preventative measures, women who are currently suffering with obstetric fistulas need greater access to adequate surgical repair. Examining obstetric fistulas in Uganda, a country that has one of the highest incident rates in the world, Sagna et al. found that the women that were placed at the greatest risk of developing obstetric fistulas were young, aged 7-19, lived in rural areas, and delivered at home (2011). Furthermore, the husband and in-laws play a role in determining care for the disease because women often have to obtain permission for care and medical fees (Sagna et al. 2011). In a cross-sectional study performed in Burkina Faso comparing urban and rural women with fistulas and published in the journal PLOS One, Banke-Thomas et al., explain that while knowledge of prevention, cause, and treatment of fistulas were low in both urban and rural settings, women in the rural areas were three times less likely to have knowledge on how to prevent a fistula from occurring (2013). What the authors found was that, while structural improvements in the health system are needed, as equally important was education because even primary education seemed to reduce the knowledge gap pertaining to obstetric fistulas (Banke-Thomas et al., 2013).
The impact of living with an obstetric fistula is severe—physically disabling, emotionally and psychologically disrupting, and socially isolating. The disease of obstetric fistula has persisted as veiled and deserted from public attention as the women that suffer with the medical condition. These are the most marginalized women in the world. The truth is, just as suffering from widespread chronic pain is out of one’s hands, being born into a region without access to the most basic of health-care and experiencing pregnancy complications is out of an individual’s control. The women having to assume the burden of living with a preventable and treatable fistula usually live with the physical and emotional consequences of a fistula the remainder of their life. This is a human rights issue and one that embodies gender, region, and economic concerns. L. Lewis Wall, in a 2012 editorial, asserted that the fact that the pervasiveness of obstetric fistulas remain in the 21st century is a glaring indictment of the world’s failure to present the most rudimentary of reproductive care to people who require it the most. What exactly is glaring back at us? In the most honest of terms: it is you or me.
Watch the full documentary. It is worth it.