How is a medical procedure just like a flight on a budget airline? In both cases, we’ll sacrifice our comfort and happiness in pursuit of the bigger goal. We’ll end up feeling grateful for all the discomforts along the way, because they got us to where we are now. Yes, it was hellish, but the job’s been done. One major difference, though, is the moment you hit the tarmac, the misery of that budget flight is behind you. The pain of a botched medical treatment can last, however, forever.
That’s what many brave women told The Independent Medicines and Medical Devices Safety (IMMDS) review. It details the causes of three major scandals affecting up to thousands of women, whose health and wellbeing was harmed by “dismissive”, “defensive” and “arrogant” healthcare professionals and untested procedures.
Expectant mothers had taken Primodos, a hormonal pregnancy test which gave newborns deformed limbs and the livers of alcoholics. Epileptics on sodium valproate to allay seizures gave birth to children with developmental disorders. And for mothers with labour-induced problems such as incontinence (which affects 40% of new mums), synthetic polypropylene mesh was inserted into their pelvises. Life-changing problems caused by the treatment include organ damage, chronic pain “like razors in the body” and the very incontinence the treatment was purported to cure.
These women underwent such treatment because they trusted a medical establishment that, in return, refused to trust these women when they said they were in pain. Containing the most powerful, inimitable process of human science within their bodies, these women deferred to others’ navigation. There’s nothing wrong with expert help, the problem is when experts refuse to acknowledge their patient’s expertise. Unless women are respected by the medical establishment and women sustain their courage in speaking out, scandals like this will happen again and again.
Clinical research is still being conducted, disproportionately, on male bodies – women’s menstrual cycles make us too complicated to do tests on, apparently. That has to change. As for the medical treatment we put our trust in: unobtrusive smear tests are a possibility that must become reality. And what are the long-term side effects of the contraceptive pill? The same question applies to off-label drugs, given to us precisely for their side-effects. Take – or maybe don’t take – Metformin, a diabetes drug prescribed by GPs to some of the one in three women with polycystic ovary syndrome. Abortion should be decriminalised so it is truly a woman’s choice, and miscarriages should be officially recorded. IVF practitioners must start providing data on hormone dosages, so patients can get the treatment needed rather than whatever the private healthcare accounts team wants. Science has helped women have control over our reproductive function and facilitated the births of happy, healthy babies. But no human trauma comparable to labour happens without an inquest, and all new mothers should be offered postpartum debriefs and counselling. As for Black women, who are five times more likely to die in labour than white women, the government must commission research into this appalling statistic.
“Expertise is a responsibility that we’re willing to hand over to whoever hears our pain, and the medical establishment has a duty to show it’s listening.”
Sexist bias gets in the way of these interventions, though, and while the IMMDS review notes surgeons’ arrogance, it doesn’t delve into where it comes from. Could there be a link between the disregard of women’s pain and the fact surgery is (second only to neurology) the last old boys’ club of medicine? Only 12.9% of consultant surgeons are women. Whether this is down to prohibitive training structures, lack of mentorship, family-unfriendly working hours or on-the-job harassment, it’s a problem in need of more solutions. How can even the most skilled male surgeons know, deep-down, how their work will impact a female body? How can medical developments take into account women’s bodies when they’re more likely to present conked out on operating tables than alert at the meeting tables?
The burden of change should lie with the medical establishment. Culturally, though, today’s women need to feel confident knowing their own bodies. Writing off the victims of the three harrowing scandals as middle-aged mums whose bodies bear scars of the past alone, is not fair to them or us. Though their traumas are specific, the attitudes they face are either now, or sadly soon, familiar to so many women.
The body positivity movement has been instrumental in helping people of all shapes and sizes embrace their bodies, no matter how they look. Something similar needs to be said for the way bodies feel. From childhood, we have to get good at talking about what’s going wrong and what’s going right, inside and out.
Offering an alternative to the medical mainstream, it’s no wonder wellness – so often derided – has attracted so many women. Expertise is a responsibility that we’re willing to hand over to whoever hears our pain, and the medical establishment has a duty to show it’s listening. They’re the experts of bodies, but only we alone are the experts of our own flesh and blood. Medical intervention has long been built around mankind’s survival, it must now re-focus on women’s wellbeing. That’s a flight of fancy I’d love to take.
Sophie Wilkinson is a freelance journalist.