Black women undergo hysterectomies at alarmingly high rates, but it’s not an easy story to tell

The stories began to sound eerily familiar. Young Black women, all suffering from fibroids, told by doctors the only solution for their suffering was a hysterectomy, the surgical removal of the uterus.

The suggestion often blindsided these patients. The shock turned some into advocates for their own health and for other Black women disproportionately affected by fibroids, benign tumors that feed off estrogen that can cause heavy bleeding and pain.

Fibroids are the leading cause of hysterectomies in the United States. Black women have higher rates of hysterectomy than white patients, especially in the South. I wanted to find out why. The answers were complex and rooted in a history that overlooked the pain of Black woman and undervalued their reproductive autonomy.

Women with fibroids often have to muddle through a health care system where different specialists perform different procedures and rarely work together. That means that a woman’s OB-GYN might suggest a surgical option and fail to mention less invasive procedures performed by a specialist in interventional radiology.

Some of the women who began by searching for the best treatment options for themselves moved into roles in which they advocated for better overall investment in fibroid research. The tumors are strikingly common, affecting a majority of white and Black women during their lifetimes. But Black women get them at younger ages and with worse symptoms.

Alabama is home to many Black women who live in rural areas with limited access to hospital care. I spent much of my time trying to reach these women using flyers and community organizations. However, many health advocates working in rural Alabama face a mountain of urgent health problems, from high infant mortality rates to diabetes and HIV. It was difficult to find groups focused on fibroids or hysterectomy rates.

Most of my efforts to reach women also crashed and burned. It can be embarrassing to talk about a condition that often causes heavy menstrual bleeding, and many people still avoid conversations about gynecologic surgery. In the end, I turned to a source I knew personally who had the experience of receiving an unnecessary hysterectomy for fibroids in her 30s.

I learned a lot about outreach journalism, and I think with a different subject, I could have reached far more affected patients with strategies such as fliers and online surveys. I probably spent too much time trying to find the perfect story: A woman from rural Alabama with limited resources for medical care. But the search for that voice led to several moving conversations with advocates who shared their own personal journeys with fibroid care.

Personal stories are key for stories about neglected diseases. Although some women might experience fibroids as an inconvenience, others face extremely serious complications that can include anemia and kidney damage. I was fortunate to find women who spoke with deep emotion about wrestling with the prospect of losing their fertility.

I also explored the deep history of racism in gynecology in Alabama. Some of the first surgical experiments by the “father of gynecology” were performed on enslaved women who received no anesthesia. Although efforts have been made to commemorate their contribution in sculpture, I wanted to have a broader discussion about how that legacy affects care today.

But first, it was important to ground this work in data about women’s health. I was able to get data from the Alabama Medicaid Agency on the number of hysterectomies by race. However, the local Blue Cross affiliate did not keep data broken down from race, so the data represented only a partial glimpse into the overall number of hysterectomies and other procedures performed in the state.

To gather more data, I turned to federal statistics about hospital-acquired infections. The U.S. Centers for Medicare and Medicaid Services requires hospitals to report the number of abdominal hysterectomies performed every year. They also report the same information for colon procedures. This data allowed me to compare per capita rates of hysterectomy to show that numbers are elevated in the South and parts of the Midwest.

The close relationship between hysterectomies and fibroids also prompted me to investigate the nature of fibroid research. It is a neglected disease that, until very recently, received scant federal research funding. Companies have been slow to develop and market medical treatments that could delay or reduce the need for hysterectomies. That’s one area that fibroid advocates have focused on as they raise awareness of the condition and its effects on women.

Since I found it so difficult to reach women affected by fibroids and hysterectomies, I chose to reframe the piece to focus on eliminating some of the stigma and elevating Black women who are working for change. In addition, I highlighted a promising initiative that could bring high-tech, less-invasive care to women who live far from the four cities where it is offered.

My mentor helped sharpen the piece by elevating some of the more emotional moments and quotes in the story. Research has shown that reporting about health disparities can make some people care less about the problem. The main lesson I took away from this reporting project was to find and elevate the most emotional quotes to help readers understand the weight of the decisions faced by these women.

• Make every effort to speak to as many patients and advocates as possible, especially when reporting on health equity and issues with stigma.

• Even if you don’t find the perfect source, this process will likely lead to many interesting and emotional conversations that can inform your reporting.

• Make sure you have the data to back up the anecdotes. Sometimes that information can be hidden in unlikely places. For this piece, I found a lot of information about hysterectomy numbers in federal data related to hospital-acquired infections. It would have been very difficult to find since Alabama doesn’t have an easily available source of hospital data.

• National advocacy groups proved to be more helpful to me than local health organizations because the groups working in impoverished parts of Alabama are overwhelmed with health needs and often focus on the most urgent problems.