Silenced Suffering: The Historical and Contemporary Plight of Black Women with Uterine Fibroids

Fibroid Awareness Month – an annual observance to educate, inform, and raise awareness about uterine fibroids is observed annually in July. During the month, I couldn’t help but think about F.B. Our first encounter took place on March 7, 2019. I was a second-year doctoral student researching the history of uterine fibroids. F.B. was immortalized as a case study in the American Journal of Obstetrics and Diseases of Women and Children. When I first saw her, regrettably, my eyes were first drawn to her swollen belly rather than her face, exposed by her hiked hospital gown. A 39-year old Black female patient, F.B. – or, more accurately, her disease – was the subject of a clinical case report titled “An Enormous Fibroid Tumor of the Uterus,” written by Charles Bingham Penrose, a white, male physician and Professor of Gynecology at the University of Pennsylvania.^[1] Excavating and contextualizing this case not only reveals the longstanding association between Black womanhood and fibroids, but also lays bare the persistent dehumanization and neglect endured by Black women grappling with this ailment.

Penrose first shared this case with the College of Physicians of Philadelphia on November 19, 1896. F.B. visited him in October 1896 for advice on how to treat a massive tumor growth in her abdomen, which weighed 87 pounds, had an average circumference of 55 inches, and reached her knees when she stood. Their clinical encounter likely took place at Gynecean Hospital, which Penrose founded in 1888 as the first hospital in Philadelphia exclusively for women.^[2] The hospital’s professed mission – to serve all “poor women with suffering death written on their faces” and who required treatment for “acute surgical cases” – reveals F.B.’s socioeconomic status and the gravity of her condition.

According to Penrose’s report, F.B. first noticed a small tumor growing in her abdomen when she was 23 years old. It gradually grew until it began to rapidly increase in size when she turned 35. After detailing her symptoms and his assessment of her condition, Penrose diagnosed F.B with “edematous fibroid tumor of the uterus.” He described how he surgically removed F.B.’s fibroids, which despite having a favorable post-surgery assessment, resulted in her dying “suddenly and unexpectedly” only four hours after the operation. Penrose concluded the study by noting that the “most interesting feature of this case is the enormous size of the tumor” – not the factors leading to her untreated state nor her passing despite a promising postsurgical evaluation. As evidenced by Penrose’s flippant concluding remark that reduced F.B. to her disease, the archive, too often, erases and dehumanizes women like her. Dr. Saidiya Hartman, a professor at Columbia University specializing in African American literature and law, has remarked on the violence of the archive and its representation of Black women as types rather than individuals. In her seminal essay “Venus in Two Acts” (2008), Hartman describes how enslaved women are encountered in “exorbitant circumstances that yield no picture of the everyday life, no pathway to her thoughts, no glimpse of the vulnerability of her face or what looking at such a face might demand.”^[3]

We come to know F.B. as a medical spectacle. Penrose’s discussion of F.B.’s symptoms offers the sole instance in which F.B.’s subjectivity is evident. He notes that “she has suffered continually with abdominal pain” and “at present she complains of backache and disability.”^[4] Yet, even this instance allows us to only know F.B. through her suffering filtered by Penrose. And, just as quickly as it emerges, Penrose ushers in a contradiction when he notes that her “general appearance was good.”^[5] As a Black woman living in late nineteenth-century Philadelphia, F.B. was likely not a stranger to objectification and dehumanization. As described by historian Kali N. Gross, “discrimination permeated Black women’s lives” in the city.^[6] They faced limited employment opportunities and poor compensation, discriminatory housing practices, social bias, and racial prejudice.^[7] Further, they were excluded from prevailing definitions of womanhood, which centered on “gentility, virtue, domesticity, and motherhood.”^[8]

To consider how these forces shaped F.B.’s health condition and eventual medical encounter with Penrose should not be viewed as baseless speculation but, instead, as necessary contextualization. Yet, some might dismiss my charges by pointing to the purpose and nature of the late nineteenth-century clinical case report. A well-defined genre of medical writing, these case reports aimed to provide an objective account of the clinical encounter by providing demographic details of the patient, outlining the clinical course of events and, in the event of death, presenting autopsy findings.^[9] ​​More often than not, these reports aimed to record rare or exceptional medical cases.^[10] However, while the nineteenth-century case report professed to factually record an encounter between “doctor” and “patient,” in reality it often depicted an encounter between “doctor” and “disease.” The author’s perspective takes precedence, shaping how the patient’s disease is interpreted and presented to the audience. If we take Penrose’s account at face value, we fail to consider how the racialization of uterine fibroids may have contributed to F.B.’s untimely death and Penrose’s pronounced fascination with her condition.

During this period, diseases were racialized. This included reproductive tumors, which were used to reinforce racial differences amidst rising cancer death rates and the emergent concerns from white nativists that their race would fall victim to “race suicide.”^[11] In order to explain high rates of cancer among white populations, cancer was conceptualized as a “disease of civilization,” one that was seen as a negative consequence of white racial progress. Conversely, Black Americans as an “uncivilized race,” were perceived as “immune” to cancer. Instead, Black women like F.B. were prone to uterine fibroids since Black people were deemed unfit for civilization and literally degenerating. For example, writing in 1894, doctor Edward Balloch claimed that the presence of uterine fibroids proved that “dark-skinned races [differed] from the white race anatomically, physiologically, and pathologically.”^[12] Other late nineteenth- century physicians described uterine fibroids as “gross congenital malformations,” “anomalies,” and “perverted structural conditions,” reinforcing the idea that the Black female body existed in a state of regression.^[13] Consequently, the presence of uterine fibroids in “uncivilized” Black women was naturalized and physicians did not consider it a legitimate or serious condition. For example, Hardon argued that uterine fibroids did “not involve any danger to life, or even any serious impairment of health, except in a mechanical way.”^[14] This idea led physicians to largely ignore the severity of the fibroid tumors until it reached extremes – as may have been the case for F.B.

Contextualizing Penrose’s account does not bring us any closer to knowing F.B. – to gaining a fuller picture of her life or her hopes, challenges, or dreams. However, it does offer us a chance to situate F.B.’s experience within broader racialized medical discourses on uterine fibroids that inherently dehumanized Black women. This not only sheds light on the possible challenges she faced but also the silences that permeate Penrose’s account. It compels us to dismiss Penrose’s reduction of F.B. solely to her fibroids and, instead, legitimize her suffering and acknowledge there is more to her story – as symbolized through a colorful, artistic rendition of the original black-and-white photograph.

During Fibroid Awareness Month – and beyond – I remember F.B. because I recognize that the erasure of Black women’s struggles with uterine fibroids persist today. Uterine fibroids are considered one of the most common gynecological conditions, affecting nearly 26 million women between the ages of 15 to 50. They can cause heavy menstrual bleeding, anemia, infertility, miscarriage, or preterm birth, and can lead to hysterectomies. However, Black women are disproportionately affected. Over 80% of Black women will develop uterine fibroids by age 50.^[15] While 6% of white women aged 18 to 30 have uterine fibroids, the rate stands at 25% for Black women. This prevalence rises to 60% by age 35.^[16] Additionally, Black women are two to three times more likely than their white counterparts to “have recurring fibroids or suffer from complications.”^[17] Black women also tend to experience symptoms at an earlier age, exhibit “larger and more numerous fibroids,” and endure more severe menstrual bleeding.^[18] Finally, they are also more likely to experience delayed diagnoses, the least likely to receive treatment, and face a higher probability of requiring invasive surgical interventions.^[19] These disparities have been attributed to Black women’s increased exposure to social and environmental determinants of health and systemic racism.^[20] These forces leave them disproportionately vulnerable to “chronic psychological stress, adverse childhood experiences,” “lack of adequate access to healthcare,” and “environmental contaminant exposures like air pollution,” which are “associated with a higher risk for developing and experiencing severe symptoms from fibroids.”^[21]

Medical understandings of uterine fibroids have shifted since the late nineteenth century. Notably, however, its causation is related to racism – albeit in different ways. For Black women like F.B., uterine fibroids were seen as proof of their biological inferiority, a justification for their subordinate status in American society. Today, studies increasingly show that systemic racism influences the prevalence and treatment of uterine fibroids among Black women. Critically, however, Black women’s health struggles are not limited to uterine fibroids. For instance, they are more likely to experience pregnancy-related mortality and severe maternal morbidity.^[22] Further, their babies are two to three times more likely to die when compared to those born to white mothers.^[23] Finally, due to barriers in accessing sexual and reproductive health services, Black women also have higher rates of unintended pregnancy, sexually transmitted infections, and reproductive cancers. During Fibroid Awareness Month – and beyond – rather than relegating these stories to the margins, I seek to amplify them, not just to highlight the challenges faced by Black women in the past and present, but in the hopes of inspiring meaningful change.

Featured image caption: Courtesy Alex Green on Pexels.

Udodiri R. Okwandu

Udodiri R. Okwandu is a doctoral candidate in the History of Science Department and Presidential Scholar at Harvard University. Broadly, her research examines how scientific and medical disciplines facilitate the production of hierarchies of race, gender, and class in the United States from the late 19th century to the present. She explores these issues in her dissertation, which traces how medical understandings of maternal mental illnesses -- such as postpartum depression and psychosis -- have produced racialized and classist distinctions between "good" and "bad" mothers. Her work has been supported by various organizations, including the Consortium for History, Science, Technology and Medicine, Commission on Women and Gender Studies, Charles Warren Center for Studies in American History. In addition to being a doctoral student, Udodiri serves as a Cultural Sensitivity Consultant at Ancestry and a Racial Diversity, Equity, and Inclusion in Science Education (RDEISE) Research and Content Development Consultant at LabXChange, a free online science education platform. Outside of her studies and work, Udodiri is an avid concert goer, poetry writer, and fitness lover.

• Udodiri R. Okwandu

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