‘There’s a lot of discussion about the side effects of contraceptives, but little research into what we actually mean when we talk about “side effects”,’ says Algera. ‘In my study, I identified the different ways in which contraceptive users and care providers acquire and substantiate knowledge about side effects.’

Interviews with contraceptive users, care providers and counsellors

Algera interviewed 17 contraceptive users and nine care providers. She also observed 11 contraception counsellors at work. ‘What was striking was that care providers and patients approach side effects fundamentally differently. Care providers think in terms of measurable risks of medical problems, such as thrombosis, headaches or nausea. By contrast, users often describe experiences that are much less concrete.’

What kind of experiences those are can be hard to articulate. ‘Many women say things like “I didn’t feel like myself” or “it felt like a fog cleared when I stopped hormonal contraception”. These personal experiences are far removed from what care providers recognise as side effects.’

Experimenting by themselves

In her study, Algera identified three ways in which women validate their side effects. ‘First, there’s what we call “somatic knowing”: an intuitive feeling that something’s wrong. In addition, women experiment by themselves, for example by stopping contraception to see if symptoms disappear. Finally, they seek affirmation from others, often through social media,’ Algera explains.

One of the study participants had suffered from vaginal yeast infections for years. Her GP said there was no connection with the pill, but when she stopped hormonal contraception, the infections disappeared. After starting a new relationship, she started taking the pill again, after which the infections returned. For her, this was proof, but her GP continued to deny the link.

Unscientific claims

Care providers have a different approach when it comes to acquiring knowledge about side effects. ‘They distinguish between scientific evidence and what they regard as “unscientific claims”. They have concerns about online misinformation and the placebo effect, which is when patients experience side effects because they expect them.’

Another approach

On the other hand, Algera saw that care providers often take another approach during consultations. ‘I call it “clinical experimentation”: care providers experiment with patients to discover what works. A practice nurse I observed during contraception consultations said: “We’re going to see what works together. We’ll try something and if it doesn’t work, we’ll move on to something else.”’

Negative consequences of denial

According to Algera, denying patient experiences can have negative consequences. ‘When care providers fail to recognise the link between a complaint and a contraceptive, it can damage trust. For example, one participant took medical advice less seriously.’

Growing gap between contraceptive users and care providers

This contributes to a growing gap between contraceptive users and care providers. More and more women are wary of hormonal contraception. Care providers see this as the result of disinformation, but this attitude may be inadvertently increasing mistrust.

Joint experimentation as a solution

As a solution, Algera advocates joint experimentation. ‘Caregivers and patients together experiment together and discover what works for the individual patient. This requires being receptive to the contraceptive user’s input in terms of knowledge and experience. It’s a process in which both parties contribute their expertise, without putting one form of knowledge above the other.’

Better communication

Algera hopes her study will contribute to better communication between care providers and patients. ‘I’d really like contraceptive users who prefer not to use hormonal contraception and professionals who provide contraceptive care to connect more. By engaging in an open conversation about side effects, it’s possible to narrow the gap between them.’