Norti (name changed), was 29 years old when she went to a government hospital in Rajasthan, complaining of severe abdominal pain and white discharge. After not receiving proper treatment, she visited a private hospital where she was immediately asked to undergo a hysterectomy.
The doctor told her that there might be an infection in her uterus and in order to get rid of the problem once and for all, it is better to remove the uterus completely. Norti believed that she had no need for her uterus since she had already undergone sterilization. This was where I met Norti. At that time, I was initiating a program for online and telephonic consultation with doctors. The doctor who provided consultation saw the scans and diagnosis reports and convinced her to go for an alternate treatment rather than hysterectomy because it carried severe health implications which she was not initially aware of.
Norti's is not an isolated case. In the past decade, we have seen news of unwarranted hysterectomies from many states in India sending waves of shock and disbelief every year or two. Not only are these cases a gross violation of sexual and reproductive health rights, but in many cases, they have exploited the labor laws as well. Some women have been pressured into having hysterectomies so they can be hired as cane cutters without having periods to interrupt their ability to work. On the other hand, a recent investigative story brought to light the financial burden of these operations forcing many families into slavery. Many women have been unable to work after the operation and the cost has compelled families to borrow money at high interest from the money lenders.
The three different kinds of hysterectomies. Image: Scientific Animations
Most victims of these unwarranted hysterectomies are poor, illiterate women who are, in many cases, exploited by doctors. Doctors have been making decisions on the treatment without providing women options, consulting patient's preferences, or at times without even informing them. Too many of the women undergoing hysterectomies are not given accurate explanations for the cause of their gynecological issues or what the treatment procedure would entail.
For example, women should have information on whether doctors are removing only the uterus or the ovaries as well. In a study of 200 women who had undergone a hysterectomy, 69 percent of women did not know whether the ovaries were removed along with the uterus. This is particularly important because the removal of both the ovaries and uterus induces surgical menopause and can result in severe osteoporosis, cardiovascular and neurological disorders. The hospitals should train doctors to seek meaningful informed consent from patients at each step of the treatment process. They should be trained to work with patients irrespective of their literacy levels.
When women don't understand the procedures, they can't ask the right questions. If they can't ask the right questions, they can't give true consent to a procedure. In a study conducted by SEWA and London School of Hygiene and Tropical Medicine in Gujarat, almost 100 percent of women assumed that removal of the uterus would solve their health issue and that the organ is of no use other than during pregnancy. Other studies have reported that many women also believed the surgery would take away period pain and will increase the days of productive work. These misconceptions show us another important challenge: most of these women don't have a fundamental understanding of how their body functions and important roles of the reproductive organs. Such rural illiterate women can only be part of an informed and involved consent-based treatment process if we focus on the education of girls and women about their sexual and reproductive health and rights.
Educating women about their bodies will also enable them to exert their rights in many other areas, such as deciding on the kind contraceptive methods or which menstrual hygiene products to adopt. Too often, solutions are forced on them, and they lack options and knowledge to make an informed decision. The government and the organizations working on women's health should champion comprehensive women's health awareness with a focus on menstrual and reproductive health designed specifically for illiterate and semi-literate girls and women. I've seen countless girls and women in rural areas who, because of a poor understanding of early symptoms of gynecological problems, ignore their body's warning signs and visit doctors much too late. This delay makes them much more vulnerable to drastic steps, like unnecessary hysterectomies to get rid of the pain and trouble.
Women should be taught about their right to seek health information, including a second opinion in cases of invasive surgery. Ultimately, they should be made aware that they have full control over their body and they should only consent to medical decisions after having all the information. The community health workers such as the ANM and ASHA can be trained by gynecologists and health officials to play a key role in equipping the rural women with the knowledge and support in upholding their health rights.
The good news is that there have been a few steps taken in the right direction. Both the state and central governments of India have recognized the cases of unscrupulous hysterectomies as major medical malpractice after campaigns from various public health organization and medical bodies. This has led to the inclusion of data on a hysterectomy in the fourth National Family Health Survey (NFHS-4). The Indian Council of Medical Research is currently drafting stricter guidelines on the use of hysterectomies. The Federation of Obstetric and Gynaecological Societies of India has also launched a campaign called "Save the Uterus," which has been promoting the use of non-invasive procedures to treat gynecological issues and makes the removal of uterus the last resort. They have called for training doctors in these alternative procedures.
Women have long been shamed and suffered because of the culture of silence surrounding their bodies. The war on women's health and sexual and reproductive health rights, which has gained prominence in the US, is happening in India as well. In this war against women's health, bodies, and rights, the women at the bottom of the pyramid the ones who are the worst affected. It is high time that these girls and women are equipped with tools"such as access to the right information and understanding of their body"so that they make informed decisions about their own health.
The author is a medical researcher and the head of Women Wellness Initiative and Enriche health at the Barefoot College working with women and girls in rural India. She is a 2019 Aspen New Voices Fellow.