Throughout this series on women’s reproductive care, we often identify women as people with biologically-female anatomy, such as a uterus, a vagina, and ovaries. However, we acknowledge that people with this anatomy identify as other genders, that having this anatomy does not necessarily mean a person is a woman, nor is it a prerequisite for being a woman.
The hysterectomy, or the surgical removal of a woman’s uterus, is an asset to modern medicine with a deeply problematic past. It is an extremely common, safe, and sometimes life-saving surgery used to prevent or treat a range of debilitating or lethal conditions, including endometriosis, uterine prolapse, and certain cancers. In fact, 1 in 3 American women will have a hysterectomy by the time they turn 60 years old.
However, the hysterectomy’s history is fraught, to say the least. It is at once a history of oppression, racism, and paternalism, as well as a history of liberation, feminism, and choice.
The hysterectomy has both been forced upon unconsenting women and withheld from women in need. For example, hysterectomies were used as a tool to sterilize women during 20th century eugenics campaigns, while at the same time, women who wanted hysterectomies were denied access because of their age, relationship status, number of children, or medical perception of their reason for needing a one.
“A Problematic Tension” – Enforcing and Withholding Hysterectomies
The Academy of Obstetricians and Gynecologists (ACOG) Committee on Ethics remarks that sterilization practices, including hysterectomies, “have embodied a problematic tension, in which some women who desired fertility were sterilized without their knowledge or consent, and other women who wanted sterilization to limit their family size lacked it.”
Women in need of a hysterectomy often face numerous clinical obstacles which can prevent them from receiving the surgery. For example, ACOG reports that some religiously-affiliated hospitals prohibit hysterectomies as a means of sterilization, based on “interpretations of religious doctrine.” This coexistence of Church and medicine effectively denies women the right to act upon their reproductive freedoms.
In addition, well-intentioned insurance provisions also present barriers to women wishing to undergo the surgery. The Medicaid consent provision states that a woman must wait a minimum of 30 days after signing a consent form before receiving a hysterectomy. Although the provision intends to safeguard against coerced hysterectomies, according to the ACOG, the Medicaid consent requirements often prevents women desiring a hysterectomy from obtaining the procedure in a timely fashion.
On the other hand, coerced hysterectomies and sterilizations were a major part of 20th century American reproductive care. Sociologist Heather Dillaway notes that “there are many, well-documented cases of sterilization abuse of African American women and girls in the South… Latinas in Los Angeles and in the Northeast United States… and Native Americans receiving care from the Indian Health Service… Women of color have been sterilized without knowing that the operation is permanent, after having given ‘permission’ while in labor pain or under various kinds of threats.” This history continues to impact the way American women, particularly American women of color, perceive and receive the surgery.
Exploring the Hysterectomy through History
Up until 40 years ago, the hysterectomy was frequently used as a tool to deny certain people their right to reproductive freedom. Forced sterilization targeted people of color, people of lower socioeconomic status, and people with disabilities or mental illness.
20th century state eugenic campaigns used hysterectomies and tubal ligations to prevent women with “undesirable” characteristics or conditions from having children in a perverse and misguided effort to “better” the human race. According to ACOG’s Committee on Ethics, from 1909 to 1979, public hospitals across the U.S. sponsored programs aimed at limiting the fertility of low-income women and women of color. During this time period, physicians performed over 60,000 forcible sterilizations.
In North Carolina, a Eugenics Board was created in 1933 to oversee forced sterilizations in the state. The eugenics program operated officially until 1977, making it “one of the longest running sterilization programs” in the U.S., according to Southeastern Geographer. From 1929 to 1977, over 7,500 North Carolina women and men were sterilized after “being deemed unfit to bear children due to their supposed intellectual capacity, mental health, or epileptic status.” North Carolina’s eugenics program also targeted specific, unwanted sexual behaviors with deeply racist roots. For example, in 1937, the eugenics board ordered a 38-year-old white woman to undergo a hysterectomy after giving birth to a mixed-race child.
In North Carolina’s ideal, eugenic society, there was complete separation between different races – enforced through sterilization.
The hysterectomy’s history is also particularly destructive for Black women living in the U.S. today, who are part of a community of women whose reproductive capacity and freedom has been historically exploited, oppressed, and denied. Sociologist Heather Dillaway aptly observes:
“Current cohorts of menopausal African American women live with the racialized history of their mothers’ hysterectomies, creating the potential for important attitudinal and psychosocial experiences between African American women and European American women in more recent times. Contemporary cohorts of African American women may fear or distrust medical institutions both because of the legacies of racial-ethnic discrimination that generations of women before them have experienced and the continued, implicit racial biases they perceive in their own patient-doctor interactions.”
Black women today continue to live with the heavy history of what reproductive medicine looked like for the women who came before them.
Identities at Risk for Harm
Although formal, state-sponsored eugenics campaigns no longer exist in the U.S., the hysterectomy is still used as a way to control women’s reproductive capacities. At particular risk are women with disabilities, women with mental illness, women who are incarcerated, and women of color.
Having a Disability
According to a review of NHIS data from the Integrated National Health Interview Series (1), women with two or more disabilities, defined as “difficulty in any domain of life… due to a health or physical problem,” were more likely to have a hysterectomy during their 20s, 30s, and 40s, versus women of the same age with no or one disability. Parents may be able to request a hysterectomy for their daughter in order to “eliminate menstruation and ease caregiving burdens,” a request the continues to divide medical ethicists.
This data suggests that having multiple disabilities puts a woman at higher risk for receiving a hysterectomy, and begs the question of whether all of these hysterectomies are justified.
Having Mental Illness
In addition, women with mental illness undergo higher rates of hysterectomies, and this is further amplified for women of color. A 2015 study (2) using a nationally representative sample women of reproductive-age in U.S. found that nearly 25% of American Indian/Alaska Native (AI/AN) women report undergoing a sterilization procedure, and almost 55% of AI/AN women report “poor mental health.” These rates of were significantly lower for non-Hispanic white women, non-Hispanic Black women, and Hispanic women. In total, AI/AN who had undergone sterilization were 2.5 times more likely to also have “poor mental health” than unsterilized AI/AN women – this suggests that indigenous women with mental illness are more often advised to receive hysterectomies or tubal ligations.
Incarcerated women continue to face unjustified pressure from prison-provided medical personnel and prison staff to undergo hysterectomies. ACOG’s Committee on Ethics reports that “coercive sterilizations were documented in California prisons in the same period in which there were calls to loosen restrictions on publicly funded sterilizations. Between 2006 and 2010, more than 140 incarcerated women were sterilized, with many reporting significant pressure from prison and hospital medical personnel to undergo the procedure.”
This phenomenon speaks to an opportunistic practice within the prison system where women denied of their basic freedoms while incarcerated are targets of further oppression through their reproductive care.
Lack of Wealth
Hysterectomy data also that women of lower socioeconomic status or women on public health insurance or no health insurance at all, are sterilized at a 1.4 times higher rate than more affluent women or women on private health insurance, according to ACOG.
Because none of these identities should innately require hysterectomies, the higher rate of hysterectomies among these populations suggests a difference in clinician counseling or guidance on sterilization procedures aimed at these groups.
Being a Black Woman
It has also been shown that Black women are often last to benefit from medical advancement, as demonstrated by an analysis of minimally-invasive hysterectomy procedures in North Carolina from 2011 to 2013 (3).
The study found outpatient hysterectomy procedures for Black women increased by 22% during these years, while the rate of hysterectomy procedures for white women remained the same. These results indicate a “race-specific catch-up phenomenon in the spread of minimally invasive hysterectomy… consistent with the hypothesis that minimally invasive hysterectomy may have been adopted more slowly for Black women than their white counterparts after its introduction in the early 2000s… [highlighting] a potential racial disparity in women’s healthcare.”
In addition, Black women are more likely to be offered maximally-invasive hysterectomies. According to the American Journal of Obstetrics and Gynecology, Black women “had nearly half the odds of receiving robot-assisted hysterectomy compared to whites.” Robot-assisted laparoscopic surgery is technique known to cause less trauma and result in less pain and faster recovery times, and unfortunately, Black women are often denied this option.
Since Black women have higher rates of conditions at risk for undergoing hysterectomies, such as uterine fibroids, Black women are more likely to need the procedure during their lifetime than white women. However, Black women are also part of a community of people that have been historically sterilized without consent, denied timely hysterectomies, and more frequently subjected to invasive surgeries.
As a result, Black women are forced to occupy an impossible space between a need for the procedure and fearful awareness of its historical usage; between trust of the provider and vigilance against medical malintent.
Why Do These Injustices Exist?
Numerous studies have shown that unconscious bias, particularly racial bias, continues to plague contemporary medical care. A 2000 study (4) showed that “implicit racial bias still affects how physicians see a patient’s intelligence, feelings of affiliation toward a patient, and beliefs about a patient’s likelihood of risk behavior and adherence with medical advice.”
For example, if a physician, even unconsciously, believes that a Black woman is less likely to adhere to a medical routine, they may recommend a long-acting reversible contraception first before recommending a daily oral contraceptive pill, without first considering the patient’s desires. Or, a doctor may believe that a mother with multiple children relying upon government-sponsored assistance should not have any more children, and thus suggest a sterilization procedure more quickly or firmly than for an affluent woman with multiple children.
Implicit bias can affect how doctors counsel patients on different conditions and treatments based on a patient’s race or other identifying factors. This practice results in care outcomes stratified among different communities of people.
What You Can Do
I recognize that as a white woman, any anxiety I feel relating to my reproductive care comes from a resistance to patriarchal or paternalistic medical practice, but I have never had to fear that my race will affect which therapies or treatments I am offered (or not offered).
If you are part of a community which has been historically denied reproductive rights and freedoms, listen to that history and respect the pause it may give you. For entirely justified reasons, many women are wary of any procedure that limits or ends their ability to have children.
Although the hysterotomy’s complex and problematic usage is a tragic and unnecessary part of women’s history, it continues to serve as an important legacy to remain protective of women’s reproductive rights. Where self-protection becomes dangerous, however, is when the weight of this history prevents women from seeking out treatments that could ultimately better, or save, their lives.
Despite the hysterectomy’s history, most doctors today genuinely want to help patients, and there has been a decades-long movement within obstetrics-gynecology to put the woman at the center of care. ACOG’s Committee on Ethics has articulated the Academy’s position that: “respect for a person’s bodily and reproductive autonomy and their full, voluntary consent and participation in the medical decision-making process, in their preferred language, must be paramount.”
A meaningful way to move forward from the U.S.’s heavy history regarding reproductive care, and respect the women who came before you, is for the women in your life and you to establish care with a medical professional who you trust completely, rather than turn away medical care entirely. Maybe this is a provider who shares your race or ethnicity, gender identity, or just someone you who makes you feel respected and listened to. This way, if a time comes when you want or truly need a hysterectomy or another definitive reproductive procedure, you can feel confident that your well-being is the doctor’s top priority.
The hysterectomy is a case study in the larger story of harm, and hope, in women’s reproductive care. It is a powerful, life-altering, life-saving tool that has been used to simultaneously deny and grant women freedom. We must continue to work toward a future where women will be able to approach their reproductive care with an informed perspective free from vigilance or fear of malintent, rooted in self-care and celebration of womanhood.
(1) Rivera Drew, Julia A. “Hysterectomy and disability among U.S. women.” Perspectives on sexual and reproductive health vol. 45,3 (2013): 157-63. doi:10.1363/4515713
(2) Cackler CJ, Shapiro VB, Lahiff M. “Female Sterilization and Poor Mental Health: Rates and Relatedness among American Indian and Alaska Native Women.” Womens Health Issues. 2016 Mar-Apr; 26(2):168-75. doi: 10.1016/j.whi.2015.10.002.
(3) Robinson WR, Cheng MM, Howard AG, Carpenter WR, Brewster WR, Doll KM. “For U.S. Black women, shift of hysterectomy to outpatient settings may have lagged behind White women: a claims-based analysis, 2011-2013.” BMC Health Serv Res. 2017 Aug 4;17(1):526. doi: 10.1186/s12913-017-2471-1.
(4) Van Ryn, M., and Burke, J. The effect of patient race and socio-economic status on physicians’ perceptions of patients. Social Science & Medicine. 2000 50(6), 813–828.
The title of this article is inspired by a quotation from Antionette Kerr’s (Women AdvaNCe, Co-Director) grandmother, who used this phrase to caution other women in her community from receiving unneeded hysterectomies.