Risha Naidoo has been suffering from pain caused by her uterus since the age of 12 – but after almost a decade, her wish of having a hysterectomy has finally been granted.

Her grounds for wanting the procedure weren’t only physical. The marketing manager has no desire to have children of her own because she wants to share her love with children who don’t have parents, either through adoption or foster care.

“A lot of women and people with uteruses don’t want to have children and are comfortable existing within the roles that society views as the norm. There is absolutely nothing wrong with them wanting that,” said Naidoo.

How it all started

Naidoo started experiencing severe pain during her menstrual period when she was 12 years old. She described the pain to be so intense that she struggled to walk or stand up straight.

“After seeing a gynaecologist for the first time at 17, I was told that I had uterine and ovarian cysts. The prescribed contraceptives caused a ton of side effects like rapid weight gain, nausea, and unusual bleeding patterns. When I requested a hysterectomy from my doctor at the time, I was met with a firm ‘no’. After seeing a new doctor, I asked for a hysterectomy again and was met with laughter and a dismissive comment that I’m too young to think about it.”

Dr. Elna Rudolph is a sexologist and practicing sexual health practitioner in Johannesburg. She is the newly elected President of the World Association for Sexual Health (WAS). Rudolph explained that a hysterectomy is a surgical procedure that is performed to remove the uterus. She said that the most common reasons for women to get hysterectomies are due to medical conditions.

Uterine fibroids are non-cancerous growths of the uterus that often appear during childbearing years. They aren’t associated with an increased risk of uterine cancer and almost never develop into cancer.

Naidoo’s persistence pays off

She declined any further procedures for her condition because she felt that they provided minimal relief. Her requests to have a hysterectomy only gathered steam.

In 2016, Naidoo started experiencing constant pain in her uterus. A transvaginal ultrasound indicated that in addition to the cysts and endometriosis, she had also developed fibroids in her uterus, as well as, endometriosis on both her uterus and ovaries.

“I had to keep outlining all the reasons that I needed this procedure. I was not prepared to spend even more time, energy, money to preserve an organ that I would never use. My doctor explained her reluctance. She mentioned that I was still quite young and that she had seen quite a large percentage of women regret their hysterectomies or sterilisation procedures later in their lives. After all of this, I received a call from my doctor’s rooms asking me to come in to discuss consent forms. I don’t think I’ve ever felt so happy as I did after that call,” she said.

Naidoo had finally won the battle to have her uterus removed.

Living a childfree life by choice

Nonzuzo Mlangeni* from the North West said she was told to first seek permission before having a hysterectomy.

“At first, I was told I was too young to make such a big decision about my life. As if having children was not a big decision, which I still had the right to make.  My doctor then said it would be best if he could consult with my husband to give permission. I wished we had doctors and a system that was progressive in terms of knowing that women have a right to choose. We don’t need a man to decide for us,” said the 30-year-old.

Mlangeni currently works as a sales consultant for an investment company. She was 17 years old when she decided that she wanted to have a hysterectomy.

“I would like to explore the option of a hysterectomy further in the future. There are plenty of women that take care of other children that needed a mother’s love. We are mentors, we are aunts, we are sisters, we are teachers. Being a woman is not just about bearing kids but rather helping make the world a better and safe place for the kids already in it,” Mlangeni explained.

Absurd reasons given

She said a doctor once refused to perform a hysterectomy because she was unmarried.

“I have had a hard time. Most healthcare practitioners reckon a woman will change her mind. For me, that reason is sexist. It suggests women aren’t capable of making their own decisions regarding their bodies.”

Mlangeni wishes that procedures focusing on female sexual reproductive health were accessible at public hospitals and clinics.

From pillar to post

Thirty-year-old Gladys Theledi said she also had to give a number of reasons for a hysterectomy.

“I was sent from pillar to post, from a public hospital to clinic, and told that I couldn’t have one unless I get consent from my husband, have a minimum of two kids, or a medical condition that requires the procedure. After that, I decided to give up. I only recently discovered that some private hospitals don’t have such requirements. Although it is expensive, I am willing to work around that. I can start saving up for the procedure,” said Theledi.

Theledi is from Soweto and has been unemployed since 2018. She manages to land odd jobs doing research, cooking, and cleaning. She said healthcare workers at Baragwanath Hospital told her about the criteria for a hysterectomy a few years ago.

Having children not an option

“I’ve always wanted to be childfree ever since I was a little girl. I thought if I get married, and had a child, I would run away and leave it with my husband. As a child, I didn’t realize how cruel that would be, but it expressed my strong desire,” Theledi said.

Theledi said that she would carry different brands of condoms because men would come up with all kinds of excuses. She also uses contraceptives to prevent pregnancy.

“My previous partner admitted to me that he thought I would change my mind about having children if we got married. We had to break up because having children was a deal-breaker for me. In my current marriage, things work because we both don’t want children of our own. My husband is considering a vasectomy later this year since it’s easier for him to get one. When family members ask about children, we lie and say he is infertile,” she explained.

Theledi said that if she ever changed her mind about parenting a child, then she would gladly adopt.

Rights and ethical principles

Rudolph confirmed that it is much more difficult for women to get a hysterectomy than for men to have a vasectomy.

“Reasons for this include the cost and risk of the procedures. You could probably get a vasectomy done for around R10 000, while a hysterectomy can be between 50 and R100 000. For women, it’s irreversible and is a much bigger procedure because you need to blindly go into the abdomen, where there are vital structures that could be damaged. Whereas the scrotum, it’s an external organ, there is much less risk involved in doing a vasectomy. If a woman is considering this procedure as a form of contraception, then sterilisation for instance, will be significantly cheaper, with much less risk involved,” said Rudolph.

However, Rudolph stressed that the doctors considerations do not outweigh the patients’ right to have the procedure done.

Female sterilisation is defined as a permanent procedure to prevent pregnancy, by blocking the fallopian tubes. Rudolph explained that the traditional sterilisation procedure is done by putting a camera in through the belly button. Once two holes have been made, the fallopian tubes are identified before being cut off, burning the ends or tying with a string. The cut-out piece is usually sent into histology to confirm that they did cut the right piece. And so, they will do that on both sides. She said that a newly introduced method entails an injection through the vagina and the uterus, to close the tubes.

Particular medical condition required

Rudolph said medical aids don’t recognise contraception as an indication for a hysterectomy. The patient needs to have a very particular medical condition with a sickness in the uterus, like cancer.”

“The third declaration is the right to autonomy and bodily integrity. This states that everyone has the right to control and decide freely on matters related to their sexuality and their body. This includes the choice of sexual behaviors, practices, partners and relationships with due regard to the rights of others. Free and informed decision-making requires free and informed consent, prior to any sexually-related testing interventions. So, this means that if a patient was adequately informed and they still decide to go ahead with a hysterectomy, than it is absolutely within their right to do so. Whether the resources are available to do so, is another ethical principle that we have to consider,” she explained.

Distributive justice

She reiterated that every person has the right to make decisions about their own body, but has to be able to pay for it. She said the reluctance by doctors to perform the procedure rested on weighing the patient’s rights, the risk of the procedure, alternative methods, and distributive justice.

“If for instance, there is a waiting list of 100 women who have cancer in their uterus and there aren’t enough resources to remove their uterus. A woman who wants to use a hysterectomy as a form of contraceptive or other psychological reasons would have to wait. So, the indication for the surgery is something that a surgeon often has to keep in mind,” explained Rudolph.

Health vs harm

Rudolph said that there are health benefits post-hysterectomy. Although there are many other minimal and less invasive procedures to achieve these.

“There’s a scale that you have to weigh up as a doctor and consider how much a procedure will benefit the patient in comparison to the harm that it may cause. Not being able to have another child or a child at all can be a benefit for many women but the doctor may be worried about harming the patient, as with any other medical procedure. Another consideration is taking somebody out of the workforce for three to six weeks, where there are other contraceptive options available. With sterilisation, somebody could probably just take one day off work, and that then also hysterectomies involves the much higher risks for bleeding, infection, and for death.”

Transgender men

Rudolph said that public hospitals offer hysterectomies to transgender men as a part of their gender-affirming care.

“All the rights to one’s sexual health absolutely pertain to transgender men who have a uterus as well as those who don’t identify as either men or women who also have a uterus. They absolutely have the right to have their uterus removed. The government does offer that service. There is just an extremely long waiting list,” she said. – Health-e News