As a working mother Claire Love suspected that she woke up at night with a headache because her life was so full.
“I got very little sleep anyway, so I just put it on the stress of all this,” says Claire, 41, a school assistant with special needs of Trowbridge, Wiltshire, who is married to Business Systems Manager Mat, 42, and has two sons Archie, 11 and Jack, both with special needs.
“Usually I didn’t even bother to take painkillers, because the headache wasn’t so bad and I don’t like taking pills unless I have to,” she remembers.
But after six months of almost nocturnal wake-ups and at the insistence of mat-gang Claire to her doctor.
In the weeks that followed, her life was turned upside down when doctors discovered what caused her headache – and why they only struck at night.
An MRI scan revealed that she had an meningioma, the most common type of brain tumor that affects around 2,000 people a year in the UK.
Meniomas form in the meninges – the outer layers of tissues that cover the brain. They cause nocturnal headaches because, depending on where the tumor is located, lying exert more pressure on the brain.
Although in general growing slowly and normally not being cancer -like (so it will not spread elsewhere in the body), without treatment an meningioma can cut out the brain to the extent, the loss of eyesight, personality changes, memory loss and even permanent paralysis.
Claire Love woke up almost every night with headache for six months before she was diagnosed
What is more, although the survival rates are relatively high (70 percent of patients live after ten years), between 10 and 20 percent die within five years, because the tumors can cause catastrophic bleeding in the brain, or a structure of pressure that irreparably damages.
And in rare cases an meningioma can become cancer -like.
“I remember swore aloud when the consultant said the word” tumor, “says Claire. ‘I went to the appointment for the scan results myself, because I was sure that there was so certain that nothing was seriously wrong.
“I was only 35. The doctor said it was very unusual for someone my age to have this condition.” (Most people with meningiomas are in the 60s – the risk increases with age.)
No explanation was offered after her diagnosis in 2019. Six years later, however, Claire believes that she knows what it caused in her case – the contraception JAB, which she lasted for more than ten years before she started her family in 2013.
Last year a paper reported in the BMJ that women who were called the same popular type of contraceptive Claire used-Depo-Provera for more than a year five times more likely to develop an meningioma than women who don’t use it. Claire read about the link via an online support group.
The JAB, also known as a medroxyprogesterone acetate (a synthetic form of the hormone progesterone), is given in the arm or buttocks every three months and works by preventing eggs from being released.
It has been available on the NHS for more than 40 years – GPS in England alone gives around 10,000 recipes per month. The most important advantage is that this means that women should not remember to take a contraceptive pill every day.
The BMJ study, by the French National Agency for Medicines and Safety of Health Products, analyzed data on more than 18,000 women in France who underwent an operation for meningioma between 2009 and 2018.
“Normally you would expect every 1,000 women aged 30 from the age of 30 to see four cases of meningioma by the time they reach 80,” says Dr. Simon Newman, Chief Scientific Officer at the Brain Tumor Charity.
“With Depo-Provera, this increases up to 20 cases per 1,000 women-Dus although it is still small, the risk is greater.”
After the study was released, British drug safety – the Medicines and Healthcare Products Regulatory Agency (MHRA) – shouted at the JAB manufacturer, a warning about the risk in Paillets for patient information.
Pfizer also wrote to NHS doctors last fall and insisted on them to stop women immediately to use Depo-Provera if they were established an meningioma.
Exactly how and why the tumor growth causes is not clear, but it is thought that it is due to exposure to synthetic forms of progesterone (progestogens) – about 70 percent of the meningioma cells have progesterone receptors on them, which means that synthetic hormones are more likely to bind them and make them grow.
Scans that show a normal brain, left and an meningioctumor. Between 10 and 20 percent of mening gap patients die within five years, because the tumors can cause catastrophic bleeding in the brain, or a structure of pressure it damages
More recent work by the same French researchers also found an increased 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 with Levonorgestrel (a kind of progestogenic) for five years or more 50 percent more risk of meningioma, although the numbers affected are still small.
In the meantime, although it is not clear how many women in the UK have developed a tumor after using the JAB, the matter of Claire is far from an isolated.
In May the mail reported that lawyers in the US are chasing a Class Action on behalf of 400 women who blame the injection of their tumors – and since that news, dozens of British women with their own stories have breaked feared that the same thing happened.
One said: ‘I have been working on this for eight years and was never informed of the risk. I have had terrible headaches for months and I just discovered that I have three meningiom tumors. ‘
Another woman from London, who had removed a golf ball size from her brain, said: “If I knew the risks, I would never have taken this. I don’t blame the NHS – it is the companies that make them that do not provide accurate information. If we are told that these are possible side effects, we have the choice to take it or not but we have never had that option. ‘
One law firm, which asked not to be identified, said that at least 200 women in the UK had been in contact in the last 12 months.
Separately, Chaya Hanoanjee, director of London’s law firm Austen Hays – who specializes in class actions – said it is also investigating the grounds for a possible British case against Pfizer.
“We try to identify people who have been affected,” she told good health. “The big question is whether the manufacturer was aware of the risks before the BMJ paper in March 2024, but no women warned who were on the Jab.”
The Depo-Provera Contraceptive JAB has been available for more than 40 years on the NHS all in England GPS gives around 10,000 recipes per month for
Pfizer UK refused to comment on good health about whether it was aware of the increased risk of meningioma before the BMJ paper was published.
Dr. Newman says that there is other evidence that the growth of meningioma can be fed by natural hormonal fluctuations – especially peaks in progesterone seen when a woman expects a child.
“Pregnancy seems to increase the growth rate of meningioma cells,” he says. “And that means that women are twice as likely to get it as men.”
Claire’s diagnosis was only the start of her test.
Within a few days she underwent an operation of 15 hours, with surgeons removed her entire forehead to gain access to the tumor. Afterwards she developed an abscess in her skull.
“My head filled with pus in the wound and started to swell from the inside,” she recalls. “I had to undergo more surgery to wash the wound.”
But the infection destroyed the bone in her skull. To give it a better chance to delete by having more air circulated in the cavity, Claire lived ten months without forehead bone – only a low skin cover where it should be. Nurses visited her daily at home to inject antibiotics to clean 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 damage.”
A third operation followed to replace her forehead with a permanent metal plate. But even that wasn’t the end.
“Two years later, in 2021, I had an attack in my sleep,” she says. “I was rushed to the hospital, where doctors brought me to an induced coma for three days because the attacks would not stop.”
She was then diagnosed with epilepsy-a direct consequence of the damage of the brain and brain and will be anti-displacement medication for life. She also has counseling for post -traumatic stress disorder.
Claire says she is undecided about the pursuit of legal steps, because she “cannot say with certainty that Depo-Provera has caused my meningioma.” Instead, her focus is on warning other women on the dangers.
‘The tumor has ruined my life – I am a shadow of my former self.
‘I still have a scan in December and I am already starting to fear whether the tumor could have returned. I am only young, but I am always worried about my future and my children. ‘
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