“I recall bawling in a gynaecologist’s office – begging him to perform a hysterectomy. I told him I never want children: never have done, never will do. Why didn’t he listen?”
The constant pain, vomiting and loss of consciousness that Izzy – then 17 – experienced due to endometriosis was unbearable, and seven years without successful treatment meant that she needed an out. She asked for the only thing she saw as an option: a full hysterectomy. But her doctor said that was out of the question. “According to him I was too young to decide what was right for my body and my emotions were affecting my judgement.”
“He went on to insult me further, suggesting that my future partner may want a child with me and to have a hysterectomy would take that away from them,” she says. She was told the same thing when she sought a consultation from a private surgeon. “I was fortunate enough that my family were willing to help me pay to visit a private gynaecologist,” she explains. “But yet again, I was told that despite being a legal adult, I was still too young to decide what was right for my body … Every medical professional I met with over the years prioritised my fertility over my physical and mental health.”
“Endometriosis deeply affected my quality of life,” Izzy, now 22, tells Refinery29, explaining that her condition negatively impacted her education, her job and her social life. Her grades were slipping, she was unable to go to work and her mental health was strained because of the consistent pain. Despite all of this, she describes feeling “reduced down to her uterus” – as though her ability to have children was all that mattered.
Struggling with mental health problems is common among endometriosis patients, one in five of whom also have a diagnosis of depression and almost a third of whom live with anxiety. Despite this prevalence, current data shows that the management of mental health of patients with gynaecological conditions is poor, chiefly because doctors don’t know how to bring up these conversations. A study in 2014 – one of the few to look into the intersection of gynaecological conditions and mental health – confirmed that people with some of the most common gynaecological conditions, including polycystic ovary syndrome, premenstrual syndrome and chronic pelvic pain, are likely to struggle with their mental health as a direct result of their condition. The same study found that gynaecological health professionals lack the confidence or skill to ask questions about these issues so vital discussions about wellbeing and the treatment of mental health problems go unspoken.
Faye Farthing, communications manager at Endometriosis UK, told Refinery29 that nobody suffering with endometriosis should be dismissed or made to feel that their pain isn’t valid because the treatment they want could affect their fertility. “For those with endometriosis where fertility is not a concern or priority, people shouldn’t feel that they have to battle for treatment and support,” she explained. “There is a societal taboo, and often expectation, that women automatically want children. Within certain cultures and communities, this taboo and expectation can be even more prevalent, which makes living with menstrual health conditions like endometriosis that may affect fertility all the more difficult and complex, or if women decide they don’t want children at all.”
A recent report by the All-Party Parliamentary Group (APPG) on Endometriosis showed that Izzy isn’t alone in feeling let down by her medical team. Forty-six percent of the 10,000 endometriosis patients who responded to the survey found their GP(s) unhelpful or very unhelpful when it came to the support of gynaecological health problems, and 32% found their gynaecologist(s) unhelpful or very unhelpful.
At 18, Rachel was in the same situation as Izzy, having severe endometriosis which caused pain that impacted every area of their daily life. At the start, they were given anti-inflammatory drugs to manage the pain but it simply increased over time. Rachel explains that this pain, and the lack of treatment, made them “suicidal with no way out of it seeing as it wasn’t being treated, [so they] asked for a hysterectomy.”
The doctor refused because it would mean that Rachel would not be able to have biological children. But they do not want biological children. Still they were refused a hysterectomy on the grounds of fertility, as their doctors prioritised their ability to procreate over their pain.
At the end of their tether, Rachel sought support from a private medical team who carried out surgery to remove the endometrial-like tissue that causes so much pain in sufferers. Yet not all of the tissue was removed because they, too, wanted to preserve Rachel’s fertility.
Even after the surgery, Rachel knew something was wrong. They begged for more investigations. It transpired that they had ovarian cancer, ignored and unfound for months because of the risks to their future fertility and hypothetical foetuses. Now cancer-free, Rachel is furious about the ways in which gender norms harm so many, and can put your life at risk.
“It’s a massive imposition to assume that a person with stereotypically female anatomy wants to have kids,” they told Refinery29. “When you’re a cis female, it’s seen as your only purpose to procreate. My only purpose in my life is not to have babies but when I was told I needed to prioritise that over my health, it was crushing to my mental health.”
“It’s very difficult to have a mutually respectful conversation with a medical professional who ignores your desires,” they added. “I felt like I couldn’t make a choice for myself and that they believe I’ll one day wake up and realise that I always wanted biological children, even though that has never been the case.”
National Institute for Health and Care Excellence (NICE) guidelines note that there are often endometriosis patients who do want to preserve their fertility but that equally, it is not of concern to others. Fertility should therefore be part of the discussion between a patient and their medical team when deciding how best to manage their condition. However, this decision is often ripped from the hands of patients, with doctors deciding what is best when it comes to prioritising the preservation of fertility.
Faye agrees. “It’s important that healthcare practitioners have an open discussion with patients and take into consideration their personal situations and priorities and that people with endometriosis don’t feel that their treatment is determined or compromised by their choice to not have children,” she explains.
At 25 years old, Morgan wanted to undergo the female sterilisation process. She has never wanted to have children and had tried every form of contraception – describing each one as “not a good fit” – culminating in an IUD that became displaced. She also has a variant BRCA gene, meaning she is at high risk of developing breast cancer. Despite all of this, Morgan says that her doctor didn’t agree that she should go forward with the procedure.
“I had been confident in my choice to be childfree prior to those health concerns but was still denied,” she explains. “Regardless of my reasons, I think as an adult it is a reasonable request. It felt like my doctor was reducing me to my ability to reproduce with little regard for my own mental/physical health … They also asked what would happen if I met a man down the line who wanted children, which felt like my only worth in a future relationship was my ability to reproduce. It was dehumanising.”
In a bid to reach a position where she couldn’t get pregnant, Morgan’s partner had a vasectomy. She reports that he was never asked if he had a partner, if he’d want children or what would happen if his partner – current or future – wanted children. He simply asked for the procedure and got it. Morgan tells Refinery29 that although she is happy he was able to have the vasectomy, it “really highlighted the gender discrepancy in medicine”.
More and more people are opting out of having children, leading to a remarkable drop in birth rates: in 2019, there were 640,370 live births in England and Wales, the lowest number since 2004. What’s more, a recent survey of 2,000 cisgender women showed that the social and economic effects of the pandemic are making people shift their future plans away from having children. Yet judging by the accounts of the women I spoke to for this piece, doctors might not always be honouring that decision.
Dr Amy Blackstone, author of Childfree by Choice and a professor in sociology at the Margaret Chase Smith Policy Center at the University of Maine, told Refinery29: “What’s shocking to me about this is how many doctors seem to simply refuse to believe women. Not providing the treatment that women seek because you believe you know better than them what is best for them not only infantilises women but is just one more way that women are denied their right to choose for themselves whether, when or how many children they will have.”
There’s a lot that goes into the decision to have – or not to have – a baby. One has to consider economics, future planning, family set-ups, the impact on a career, and more. However, regardless of what underpins a woman’s reproductive choices, they must be her choices and hers alone. And no matter what, a woman’s pain should never be dismissed because of a child she may or may not choose to have.