Hysterectomy and Disability

A hysterectomy is an operation to remove a woman's uterus.

A woman may have a hysterectomy for different reasons, including:

• Uterine fibroids that cause pain, bleeding, or other problems
• Uterine prolapse, which is a sliding of the uterus from its normal position into the vaginal canal
• Cancer of the uterus, cervix, or ovaries
• Endometriosis
• Abnormal vaginal bleeding
• Chronic pelvic pain
• Adenomyosis, or a thickening of the uterus

Hysterectomy for noncancerous reasons is usually considered only after all other treatment approaches have been tried without success.

You can find more information on types of hysterectomy, an explanation of various surgical techniques including risks, and what to expect after hysterectomy in print and audio formats on the WebMD website.

The National Study on Women with Disabilities was the first to document significant disparities in rates of hysterectomy. Some of the women interviewed in the qualitative phase of the study reported a physician recommending that they have a hysterectomy to make sure they would never get pregnant. Conversely, a woman with cerebral palsy reported pleading with her doctor to give her a hysterectomy because menstruation was so difficult for her to manage.

Women with disabilities had a significantly higher rate of hysterectomy (22 percent versus 12 percent) than women with no disability. This finding mainly reflects the large difference in rates between young women with and without disabilities, as there was no significant difference in hysterectomy rates between the two groups among women who were age 35 or older. Our findings indicate that women with disabilities are more likely to have a hysterectomy at a younger age than are women without disabilities. Women with disabilities were more likely than their able-bodied counterparts to have a hysterectomy for non-medically necessary reasons such as birth control, personal convenience, or at the request of a parent or guardian.

A 2013 study by Rivera Drew (doi: 10.1363/4515713) examined data from the National Health Interview Survey on nearly 43,000 women aged 18 and older. She found that women with multiple disabilities experienced a 30 percent higher risk of undergoing a hysterectomy than women with no disability, and this heightened risk was concentrated at younger ages.

Some believe that eugenics and general perceptions of women with disabilities as asexual are responsible for the high rate of hysterectomy in younger women with disabilities.

The goals of eugenics have been described as denying women with disabilities the right to bear and raise children to prevent "biologically defective" women from passing on "their defective genes." Eugenics is used against women with disabilities by creating barriers to using obstetrical and gynecological services, sterilization, forced or pressured abortion, keeping men and women separate in institutions, injecting harmful contraceptives, taking away child custody, and turning down applications to adopt a child. Studies have documented that women with disabilities have been admonished for becoming pregnant or encouraged to have an abortion, despite evidence that most women with disabilities give birth to healthy babies.

In a study conducted with about 1,000 women with and without disabilities, women with the most severe limitations in function were the most likely to have had a hysterectomy. Women with disabilities were more likely than women without disabilities to have had a hysterectomy for a reason that was not medically necessary. Often, a healthcare provider recommended having the hysterectomy. In some cases, the hysterectomy was performed at the request of a parent or guardian. Sometimes the disabled woman herself requested a hysterectomy, however, so that she would not have to deal with difficulties managing menstruation or birth control.

Women with physical disabilities who are looking for a way to eliminate menstruation or reduce uterine bleeding look into endometrial ablation. This is a procedure that destroys (ablates) the lining of the uterus (endometrium) using a laser beam, radio frequency, electricity, freezing, or microwave. A small instrument is passed through the vagina in order to do this. The procedure can be performed with sedation or light anesthesia in an outpatient facility or physician's office.

In about half of the cases, women find that this procedure stops their periods completely. Others find that it reduces the menstrual flow so that it is much more manageable.

Although this procedure has fewer risks and a shorter recovery time compared to a hysterectomy, its effects are still permanent. To obtain more information so you can be prepared to talk with your healthcare provider about this option, go to the WebMD website.