Did common contraceptive cause Claire’s brain tumour at just 35?

As a working mum Claire Love presumed she was waking up with headaches at night because her life was so full-on.

‘I was getting very little sleep anyway, so I just put it down to the stress of it all,’ says Claire, 41, a special needs school assistant from Trowbridge, Wiltshire, who is married to business systems manager Mat, 42, and has two sons Archie, 11, and Jack, nine, both with special needs.

‘Most of the time, I didn’t even bother taking painkillers, as the headaches weren’t that bad and I don’t like to take pills unless I have to,’ she recalls.

But after six months of almost nightly wake-ups – and at Mat’s insistence – Claire went to see her GP.

In the weeks that followed, her life was turned upside down as doctors discovered what was causing her headaches – and why they only struck at night.

An MRI scan revealed she had a meningioma, the most common type of brain tumour that affects roughly 2,000 people a year in the UK.

Meningiomas form in the meninges – the outer layers of tissues that cover the brain. They cause night-time headaches because, depending on where the tumour is located, lying down puts more pressure on the brain.

Although generally slow-growing and not normally cancerous (so it won’t spread elsewhere in the body), without treatment to cut it out a meningioma can squash the brain to the extent it causes vision loss, personality changes, memory loss and even permanent paralysis.

What’s more, although survival rates are relatively high (70 per cent of patients are alive after ten years), between 10 and 20 per cent die within five years, as the tumours can trigger a catastrophic bleed in the brain, or a build-up of pressure that damages it beyond repair.

And in rare cases, a meningioma can become cancerous.

‘I remember swearing out loud when the consultant said the word “tumour”,’ says Claire. ‘I’d gone to the appointment for the scan results on my own as I was so certain nothing was seriously wrong.

‘I was only 35. The doctor said it was highly unusual for someone my age to have this condition.’ (Most people with meningiomas are in their 60s – the risk increases with age.)

No explanation was offered after her diagnosis in 2019. However, six years on, Claire believes she knows what may have caused it in her case – the contraceptive jab, which she took for over a decade before starting her family in 2013.

Last year, a paper published in the BMJ reported that women who used the same popular type of contraceptive jab Claire was on – called Depo-Provera – for more than a year were five times more likely to develop a meningioma than women who don’t use it. Claire read about the link through an online support group.

The jab, also known as medroxyprogesterone acetate (a synthetic form of the hormone progesterone), is given into the arm or buttocks by a doctor every three months and works by preventing eggs from being released.

It’s been available on the NHS for more than 40 years – in England alone GPs issue roughly 10,000 prescriptions a month for it. The main advantage is it means women don’t have to remember to take a contraceptive pill at the same time every day.

The BMJ study, by the French National Agency for Medicines and Health Products Safety, analysed data on more than 18,000 women in France who underwent surgery for meningioma between 2009 and 2018. The numbers developing meningioma while using the jab were significantly higher than in women not on it.

‘Normally, out of every 1,000 women aged 30, you would expect to see four cases of meningioma by the time they reach 80,’ says Dr Simon Newman, chief scientific officer at the Brain Tumour Charity.

‘With Depo-Provera, that increases to 20 cases per 1,000 women – so even though it’s still small, the risk is greater.’

After the study came out, the UK drug safety watchdog – the Medicines and Healthcare Products Regulatory Agency (MHRA) – called on the jab’s manufacturer, Pfizer, to include a warning about the risk in patient information leaflets.

Pfizer also wrote to NHS doctors last autumn urging them to immediately stop women from using Depo-Provera if they were diagnosed with a meningioma.

Exactly how and why it triggers tumour growth is not clear, but it’s thought to be due to exposure to synthetic forms of progesterone (progestogens) – around 70 per cent of meningioma cells have progesterone receptors on them, which means the synthetic hormones may be more likely to bind to them and make them grow.

More recent work by the same French researchers also found a heightened risk with some – but not all – types of oral contraceptives that contain progestogens.

Their data, published in the BMJ last week, found women who took forms of the Pill made with levonorgestrel (a type of progestogen) for five years or more were 50 per cent more at risk of meningioma, though the numbers affected are still small.

Meanwhile, although it’s not clear how many women in the UK may have developed a tumour after using the jab, Claire’s case is far from an isolated one.

In May, the Mail reported that lawyers in the US are pursuing a class action against Pfizer on behalf of 400 women who blame the injection for their tumours – and since that news broke, dozens of British women responded with their own stories, fearing the same has happened to them.

One said: ‘I’ve been on this for eight years and was never informed of the risk. I’ve had terrible headaches for months and just found out I have three meningioma tumours.’

Another woman from London, who had a golf-ball sized growth removed from her brain, said: ‘If I knew the risks I would never have taken this. I don’t blame the NHS – it’s the companies that make them that don’t give accurate information. If we are told these are possible side-effects then we have a choice to take it or not – but we never had that option.’

One law firm, which asked not to be identified, said at least 200 women in the UK had been in touch over the last 12 months.

Separately, Chaya Hanoomanjee, managing director at London law firm Austen Hays – which specialises in class actions – said it is also investigating the grounds for a possible UK case against Pfizer.

‘We’re trying to identify people who have been impacted,’ she told Good Health. ‘The big question is whether the manufacturer was aware of the risks before the BMJ paper in March 2024, but failed to alert women who were on the jab.’

Pfizer UK declined to comment to Good Health on whether it knew about the increased risk of meningioma before the BMJ paper was published.

Dr Newman says there is other evidence that meningioma growth can be fuelled by natural hormonal fluctuations – particularly spikes in progesterone seen when a woman is expecting a child.

‘Pregnancy does appear to increase the rate of growth of meningioma cells,’ he says. ‘And that means women do seem to be twice as likely to get it as men.’

Claire’s diagnosis was only the beginning of her ordeal.

Within days she was undergoing a 15-hour operation, during which surgeons removed her entire forehead to access the tumour. Afterwards, she developed an abscess inside her skull.

‘My head filled with pus inside the wound and started to swell from the inside out,’ she recalls. ‘I had to have more surgery to wash the wound out.’

But the infection was destroying the bone in her skull. To give it a better chance of clearing by letting more air circulate in the cavity, Claire lived for ten months with no forehead bone – just a layer of skin covering where it should be. Nurses visited her at home daily to inject antibiotics to clear up the infection.

‘I looked like an alien,’ she recalls. ‘I had to wear a special helmet if I left the house, to protect against any damage.’

A third operation followed to replace her forehead with a permanent metal plate. But even that wasn’t the end of it.

‘Two years later, in 2021, I had a seizure in my sleep,’ she says. ‘I was rushed to hospital, where doctors put me into an induced coma for three days as the seizures would not stop.’

She was subsequently diagnosed with epilepsy – a direct result of the tumour’s damage to the brain – and will be on anti-seizure medication for life. She is also having counselling for post-traumatic stress disorder.

Claire says she is undecided about pursuing legal action, as she ‘can’t say for certain that Depo-Provera caused my meningioma’. Her focus is instead on alerting other women to the dangers.

‘The tumour has ruined my life – I’m a shadow of my former self.

‘I’m due another scan in December and I’m already starting to have anxiety about whether the tumour could have returned. I’m only young, but I’m worried about my future and my children all the time.’