A uterus can embody many things. For some women, it provides a sense of self, gender identity, and sexual prowess. For others, it signifies fertility and can even dictate a woman's cultural desirability. And still, hysterectomy continues to be one of the most common gynecological surgeries performed worldwide. [1]
But women are speaking out. Stories of psychological, social, and cultural stigmas experienced by hysterectomized women are surfacing -- many of which reveal the residual costs that have left some to question who they are now and how they can relate to the world around them post-hysterectomy.
"At the time, I had no idea what was happening to me," recalled Lise Cloutier-Steele, whose own hysterectomy and bilateral salpingo-oophorectomy at age 38 spurred her to write the book, Misinformed Consent: Women's Stories About Unnecessary Hysterectomy. "In my interviews, I was hearing the same things. A common thread between the hundreds of women I spoke to were feelings of betrayal. We weren't told what would happen after the surgery."
And experts agree. The experiences of women who undergo hysterectomy have not been given adequate attention -- especially in the area of how reproductive organs can provide a sense of identity to women.
"Gender identity is one of the most fundamental means by which individuals are recognized, both by others and by themselves," explained Dr. Jean Elson, Ph.D., MA, MEd, sociologist and senior lecturer emeritus for the department of sociology at the University of New Hampshire. "It is our core inner feeling of who we are as women, men, both, or neither."
In Elson's research, as discussed in her book, Am I Still a Woman? Hysterectomy and Gender Identity, she found that gender identity is produced through personal embodied experience. Depending on the culture and the individual, this gender identity could be affected if a woman experiences changes to her body. "Most women in my study found hysterectomy a crisis that prompted them to examine the connection between sexual reproductive organs and gender identity."
Although the uterus itself is only a fraction of a woman's gender identity, its presence -- or absence -- is part of how she relates to the world around her. This is especially true concerning her intimate relationships. The quality of relationships plays a significant role in whether a woman is able to maintain or reclaim gender identity after surgery. [2] Elson explained that romantic partners could either reinforce or calm a woman's fears surrounding the loss of sexual attractiveness post-hysterectomy.
"Sexuality is often a basic component of feminine gender identity," explained Dr. Elson. "Some respondents found they no longer felt they measured up to appropriate cultural standards for sexual attraction, including maintaining a youthful appearance, a slim figure, and physical flawlessness." Women who expressed concern regarding diminished sexual attractiveness were predominantly heterosexual. In addition, several women of differing sexual orientations perceived changes in their own sexual desire or response as a result of hysterectomy.
A woman's perception of losing sexual attractiveness is compounded when sexual dysfunction becomes a reality following surgery. Earlier this year, one study found that some women who underwent hysterectomy for benign reasons experienced sexual dysfunction and increased depression.
These findings sounded all too familiar to Ms. Cloutier-Steele. Depression -- due to loss of sexuality -- was a common finding in her interviews. "No one asked us what sex was like before the surgery. No one explained that if they remove the cervix, the vagina will be shortened. And for those women who enjoy deep uterine orgasms, you can't experience that anymore. It was devastating after the fact." Patient information such as this is crucial since factors such as sexual function are significant predictors of hysterectomy satisfaction. [4]
Sexual dysfunction can be damaging to women in the healthiest of relationships but can hold even higher stakes for those who live in patriarchal societies where childbearing is highly valued and a woman's role is to please her husband sexually.
"Most of the women I interviewed accepted strong cultural beliefs that motherhood is an essential component of women's identity," Elson explained. "Loss of reproductive organs created insecurity regarding gender identity for those women, including women who had already borne children or were past menopause."
This ideation is prevalent in Middle Eastern countries and corresponding cultures where a woman's value, social status, and self-esteem are linked to her ability to have children. Childbearing is perceived as a family commitment. [5] If a woman cannot bear children, divorce is justified. High rates of anxiety and depression have been observed -- even in menopausal women. [6]
In the Latin American world, women face similar hardships. Machismo, a concept of extreme masculinity and unquestioned authority, places women in a subservient role. In such cases, a woman's body is considered only for the enjoyment of men and changes to it, as seen with hysterectomy, can prove damaging to intimate relationships.
A study published in Health Care for Women International found that Mexican men who adopted the machismo role believed that without a uterus, a woman would be "incomplete, empty, her femininity adversely affected" and "she would have problems with her partner." Mexican women reported feeling anxious around a procedure that would threaten their role and that may cause men to leave and seek sexual satisfaction elsewhere.
This harsh reality is not one that exists solely outside the U.S. A qualitative study found that African-American women were aware of the social stigmas associated with hysterectomy in the black community. Several African-American women reported keeping their surgery a secret for fear of losing a partner and that family members warned them against hysterectomy because "they (men) won't want you." The authors pointed out that, historically, black males associated fertility control with feeling powerless, which may have contributed to some of the responses to hysterectomy.
It's undisputed that negative stereotypes exist regarding hysterectomized women, but it's important to note these views are not universal. In the aforementioned studies, experiences differed between women with "a continuum of responses from very positive to very negative." Several women reported feeling supported and that their partners "only wanted what was best for them." [8]
Dr. Elson stressed, "Women are different from each other in many ways, and do not react similarly to the same medical procedure."
As such, hysterectomy may be appropriate for some, but it's not for everyone. Researchers have emphasized how limited women's knowledge is in the area of their reproductive organs and, by extension, the consequences of their removal. [4] It's the responsibility of physicians to fill in the knowledge gaps. Women have reported their physicians recommending hysterectomy but no other alternatives.
"Women's free choice to undergo hysterectomy is really only constrained choice when there are a lack of appropriate alternative options." Dr. Elson clarified. "Women I interviewed often explained that they would have preferred less radical options if those had been offered. The power to choose is meaningless if women are given no alternatives."
And it's because of stories like these Ms. Cloutier-Steele is adamant that woman are completely informed. "It's the misinformation -- many women would not have surrendered to having these procedures if they had known. If a doctor's only solution is to open you up and take everything out, he's not the one for you. Find a doctor with the right skill," Cloutier-Steele admonished. "Ask questions and talk to everyone on both sides, but look for the facts as to how real women live without their organs."
ABOUT THE DOCTOR: Jean Elson has a Ph.D. in sociology, a joint master's degree in sociology and women's studies, and a master's degree in educational psychology. Her book, Am I Still a Woman? Hysterectomy and Gender Identity, has helped women and the medical community understand the complex interconnectedness of body and gender identity. She currently is Senior Lecturer Emeritus for the Department of Sociology at the University of New Hampshire. Areas of specialty include sociology of gender, family, women's health and illness, and sexual behavior.
ABOUT CLOUTIER-STEELE: Lise Cloutier-Steele is a communications specialist, professional writer and editor, and women's rights advocate. She's the author of Misinformed Consent: Women's Stories about Unnecessary Hysterectomy. By telling the stories of hysterectomized women, Cloutier-Steele has encouraged her readers to look beyond surgery. She's also author of the books Living and Learning with a Child Who Stutters and There's No Place Like Home. Ms. Cloutier-Steele has received a Canada 125 Award in recognition of her significant work within the community.
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