Jennifer O’Connell: HRT’s story is one of global neglect and misinformation

These days, women in their 40s and 50s swap notes on hormone replacement therapy (HRT) as casually as Netflix recommendations. One night over drinks recently, a friend and her husband joked about how he doesn’t normally take much interest in her healthcare, but when he heard there might be a shortage of HRT a few months back, he offered to drive immediately to the North. A few weeks later, a politician heading into a radio studio temporarily forgot the researcher’s name. Bloody menopause, she said cheerfully, and a knowing grin went round the green room.

For those in the thick of it, however, there’s not much to crack jokes about. Hot flushes are just the bit that gets all the PR. Other symptoms include forgetfulness, crippling anxiety, a dank mood that settles over you and refuses to shift, skin that itches so badly you want to tear it off. Nights of sweaty, broken sleep. The sense of being slightly out of sync with the world: forgetful, by turns irritable, inexplicably sad or driven to incandescent rage by the sound of chewing.

The HSE website reports that symptoms can start seven years before your periods stop, during what’s known as perimenopause, and for one in 10 women, may last for up to 12 years afterwards. In case you can’t face counting, that’s two full decades of varying degrees of misery, though the average is more like (a mere) five to seven years. And those are just the symptoms you can sense. Under the surface, other, more ominous changes may be happening too. Women’s bones may be losing density. In those who have a genetic risk for Alzheimer’s disease, plaques may begin forming on the brain. The risk of cardiac disease increases. An American gynaecologist in 1966 described menopause as “women’s chemical castration” which is simultaneously ridiculously melodramatic and not nearly histrionic enough.

We now know it doesn’t have to be like that. HRT can level out the hormonal rollercoaster and may offer impressively rapid relief to a range of side effects, improving hot flushes and sleep disruption, and even some psychological symptoms. It’s worth saying there are other – medical and non-medical – ways to manage menopause. But for many, hormone therapy is the best answer. A friend’s mother, who is in her 80s, swears she will die with her HRT patch on.

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But she is a rarity, one of the lucky ones. For many of her generation, there were no patches, no gel, no respite, all because of a single study that we now know was seriously flawed.

HRT was merrily prescribed throughout the 1990s and early 2000s; at one stage it was the single most prescribed medication in the US. Some, only half glibly, suggested oestrogen was so beneficial it should be in the water supply, according to the New York Times.

We push back aggressively about misinformation about vaccine safety when it comes to Covid or the MMR vaccine. But there’s no such collective effort to set the record straight about HRT

And then in 2002, it suddenly screeched to a halt. The reason is depressingly familiar: a single study, part of the largest randomised trial in history to involve only women, which came to an abrupt early end after it detected elevated health risks, including invasive breast cancer, in participants, with no cardiac health benefits. Researchers running the Women’s Health Initiative (WHI) study, which involved 160,000 postmenopausal women, warned that “the adverse effects outweigh and outnumber the benefits”. The media went into overdrive. Before the results had even been published, it was case closed. For millions of women worldwide, HRT was all but over.

Two years later, another study was published which rowed back on some of those findings, but it wasn’t until 2020 that the WHI’s long-term results were published. These found a slightly increased risk of breast cancer incidence for women on HRT, but no increased risk of mortality. Women who started HRT before they were 60 had a lower risk of cardiovascular disease, as well as a lower risk of death related to cardiovascular disease and death from other causes. It was only at that point the flaws in the initial study were properly teased out – namely that it involved postmenopausal women with an average age of 63.2, who are both less healthy overall, and less likely to be still crippled by menopause symptoms than younger women. Small wonder the researchers concluded that the risks outweighed the benefits – but this news came too late for many.

[ ‘There’s too much talk about menopause? We’re just making up for the last 20 goddamn years when women suffered in silence’ ]

Even now, with discussion of HRT and menopause dominating every media platform, and menopause books and clinics popping up everywhere, misinformation and confusion abound. Some doctors remain reluctant to prescribe HRT. And almost no attention is given to the forgotten generation, those who were taken off or never prescribed HRT, and may be suffering long-term health consequences – including osteoporosis and dementia – as a result. Where is the outrage about this? Part of the reason for its absence is a high tolerance for women’s suffering, which would make more sense if it could be explained away with a reference to the Catholic grip on our health system, and the ethos which regards pain and humiliation as part of the package for women. But this is a story of global neglect and misinformation; of people not asking the right questions about women’s health. It is a product, too, of the legacy of paternalism, shame and stigma surrounding women’s fertility. Throw into the mix a vague cultural suspicion of medicalising a so-called natural process, and you’ve got a perfect storm.

We push back aggressively about misinformation about vaccine safety when it comes to Covid or the MMR vaccine. But there’s no such collective effort to set the record straight about HRT. A generation of women missed out on potentially life-enhancing treatment because of flawed science and sensationalist media coverage, and they deserve answers.