Breaking the silence: Honoring the legacy and struggle of obstetric fistula survivors

May 23 marks the International Day to End Obstetric Fistula, a global call to action to both support and empower the women affected by this devastating condition. Obstetric fistula is an abnormal opening between the vagina and either the bladder or the rectum, leading to constant leakage of urine or stool. The World Health Organization (WHO) estimates that each year, between 50,000 to 100,000 women are affected by this injury. More than 2 million people live with untreated obstetric fistulas in Asia and sub-Saharan Africa.

Obstetric fistula is preventable. These injuries usually occur due to prolonged, complicated and/or unattended labor. Octavia Cannon, DO, an AOA board-certified OB-GYN, says child marriages and early pregnancy age are also major contributors.

The occurrence of obstetric fistula is closely associated with one of the primary contributors to maternal death: obstructed labor, or when the infant’s head is too big for the mother’s pelvis. When the uterus cannot contract properly, delivery stops, even while the baby’s head continues to press against the birth canal. This leads to the surrounding tissue eventually dying, creating a fistula.

Fistulas do not heal naturally, and tragically, the baby is often stillborn. In addition to continuous incontinence, women and girls who experience obstetric fistulas also often face stigma and shame. They are often excluded from their families and larger communities, which exacerbates their suffering. Only one in 50 of those affected ever receive treatment.

A historical look at the condition

While many affected individuals reside in other parts of the globe, Dr. Cannon notes that some women in the U.S. also have obstetric fistulas.

“Here in the United States, we are fortunate to not encounter fistulas as much, because we have access to health care for young women and girls, and we have physicians who are trained to care for these issues,” says Dr. Cannon. “But it’s so frightening. There are treatments, but depending on how long it takes for a patient to seek treatment—if they ever do at all—there may be additional complications that develop.”

As Dr. Cannon points out, the long-term effects of this injury can be devastating to both the affected individual and their family. Depending on the type of fistula that has developed, whether that be vesicovaginal, rectovaginal or one of several more, treatment methods vary. Bladder catheters may be used to heal a small fistula, but often, surgery is required for treatment. Surgical repair may be either from the abdomen or through the vagina. Physical therapy may also be recommended.

The history of obstetric fistula and its treatment are both long and dark. Obstetric fistula has afflicted women since at least 2050 BCE. Queen Henhenit was an ancient Egyptian queen consort, and a lower-ranking wife of Pharoah Mentuhotep II during the 11th dynasty. Her mummy showed the oldest evidence of obstructed labor (and a vesicovaginal fistula) after an extensive anatomical review was performed on her remains in Cairo in 1923. Hypotheses suggest that severe damage to the queen’s bladder and vagina occurred while she was giving birth, tragically resulting in her death.

Muslim physician and philosopher Avicenna recognized the relationship between obstructed labor and fistula development in 1037 CE, stating that the condition is incurable. In 1663, Dutch physician Hendrick van Roonhuyse published descriptions of the vesicovaginal fistula and even proposed the repair method of using stitching needles made of swan quills. It wouldn’t be until nearly 200 years later that the first vesicovaginal fistula was successfully closed.

Experimental treatment through enslaved women

John Peter Mettauer of Virginia wrote a letter to the Boston Medical and Surgical Journal in 1838 confirming that he had successfully closed a vesicovaginal fistula with wire sutures. However, J. Marion Sims, MD, is erroneously known as the first American surgeon to close a vesicovaginal fistula.

In the 1840s, three enslaved women who lived and worked on different plantations around Montgomery, Alabama, developed obstetric fistulas after childbirth. Enslaved women suffering from this condition were kept apart from others and were expected to live with the pain and humiliation of their injuries for the rest of their lives. The men who enslaved these women wanted to find a cure and sought the medical advice of Dr. Sims. They ultimately “leased” the women to Dr. Sims for six months, granting him complete control over their bodies.

The names of these three women, all teenagers at the time, are almost all that history remembers of the dozen enslaved women that Dr. Sims experimented on for years without their consent: Anarcha, Lucy and Betsey.

Lucy was the first of the three women to undergo an experimental operation at the hands of Dr. Sims. According to historical accounts, the operating room was full of other doctors, in attendance to watch the procedure without Lucy’s permission. Throughout the entire hour-long procedure, Lucy was fully conscious, as she had not received any anesthesia. As Dr. Cannon explains, at this time some people believed that Black people did not feel pain in the same way or as much as white people. Lucy later developed an extremely painful bladder infection, leading to much agony and distress. Her operation was deemed a failure.

Betsey’s surgery followed. She also did not receive anesthesia. Although she did not develop an infection, her injuries were not repaired, and her operation was considered a failure as well.

Next, Dr. Sims operated on Anarcha at least 30 times over the course of five years, and none of the surgeries resolved her fistula. When it became widely known that his surgeries on all three women were unsuccessful, Dr. Sims was deemed a failure and the three women were left in his care, as their enslavers thought they would not be able to work. After all of Dr. Sims’ other assistants quit, he trained Anarcha, Lucy and Betsey to assist during operations.

In 1849, Anarcha underwent her final operation. Using new tools and techniques he had developed, Dr. Sims finally healed Anarcha’s fistula, but due to many contradicting accounts, it isn’t clear whether she ever made a full recovery. Shortly after, Anarcha, Lucy and Betsey were returned to their enslavers and Sims went on to successfully operate on white women.

Anarcha, Lucy and Betsey are increasingly being referred to as the mothers of modern gynecology, and the legacy of Dr. Sims is slowly fading. However, his impact is still seen in modern medicine.

Empowerment through advocacy

Dr. Cannon says that prior to visiting the Smithsonian’s National Museum of African American History and Culture, she had never heard of Anarcha, Lucy and Betsey: “As I was walking around looking at the exhibits, I saw a Sims [vaginal] retractor. I use that in GYN surgery all the time. But I hadn’t heard of these three women.

“I just felt so much anger, and even a little bit of guilt. It makes you think about all the other instruments and procedures and all the other people who were experimented on,” says Dr. Cannon.

In 2018, a statue of Sims was removed from Central Park, following the 2006 removal of a painting of him at the University of Alabama Birmingham. On Sept. 24, 2021, the Mothers of Gynecology Monument was unveiled in Montgomery. The 15-foot statues depict Anarcha, Lucy and Betsey, standing as “a symbol of all of the enslaved women who were experimented upon in the quixotic pursuit of a modern ‘science’ of gynecology, by Sims and many others.” The monument further serves as a reminder of the ongoing racial disparities in health care today.

To address these issues, Dr. Cannon stressed the importance of educating both health care professionals and patients. Teaching women and girls about their bodies and about self-advocacy are small, feasible first steps. We can find empowerment in advocating for other women, Dr. Cannon says.

Breaking down the stigmas surrounding women’s health care, pushing for quality medical care facilities (both at home and abroad) and fundraising for lifesaving surgeries are other strategies that can prevent obstetric fistulas and additional pregnancy-related complications, including maternal mortality.

“Another reason why the story of Anarcha, Lucy and Betsey is so important to me is, as an African American woman, this is my ancestry. This is my history. This is my lesson to learn, and this is my legacy. And I want my part of this legacy to be the positive part: Educating people to break the chain—literally—and, as painful as it can be, continue to talk about it, and continue to spread humanity,” says Dr. Cannon.

In quoting the poem “Still I Rise” by Maya Angelou, Dr. Cannon recites: “Bringing the gifts that my ancestors gave/I am the dream and the hope of the slave.”

This International Day to End Obstetric Fistula serves as a poignant reminder of the ongoing struggle endured by women and girls around the world afflicted by this debilitating condition. Education, advocacy and empowerment are powerful tools that will hopefully reduce the number of women worldwide suffering from this condition and increase successful treatment of obstetric fistulas.

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