“I thought, ‘I’m dying, there’s something horribly wrong but nobody will listen to me.'”
Malene El Rafaey was a successful glamour model who had contracts with FHM, Playboy and the Daily Star. She never felt her boobs were quite good enough though, so when she was 25 she decided to get breast implants.
At first she loved them but about six years later, she started experiencing some serious health problems.
“I couldn’t get out of bed in the morning, I couldn’t work, I just slept all day long,” Malene tells Radio 1 Newsbeat. She also developed multiple allergies.
“Body wash, my creams, I could literally have a piece of bread and I would be coming out in a rash. In the end I just stopped eating.”
Malene says she was suffering from what’s known as breast implant illness (BII). Hundreds of thousands of other women believe they have it too – the problem is, medical experts can’t agree whether it’s real or not.
But for the first time, Newsbeat has been told by three major cosmetic surgery associations they will be warning women about the risks associated with breast implants.
BAAPS, BAPRAS and ABS have told us in a statement the issue of breast implant illness, “should be discussed with women who are considering breast augmentation”.
They’re also updating advice leaflets to ensure patients have access to the latest information.
What is breast implant illness?
At the moment BII is self-diagnosed.
Symptoms reported by those who say they have the illness – mainly related to the immune system – are broad.
They include fatigue, chest pain, hair loss, headaches, chills, photosensitivity, chronic pain, brain fog and sleep disturbance.
BII is not officially recognised as a condition in the UK. BAAPS (The British Association of Aesthetics and Plastic Surgeons) says there is no scientific evidence to support a direct link between the illness and implants.
“If you feel better, I’ll believe you but I have to say it’s in your head it’s not in your breasts,” says plastic surgeon Graeme Perks.
“Any scientist would tell you if the illness is related to a problem with the silicone, it doesn’t switch off the moment the silicone implant is removed, and so that makes you very suspicious that we don’t know enough about what’s going on,” he adds.
Breast implants are still the most common cosmetic surgery procedure in the UK, with around 8,000 women a year going under the knife.
While most of those will have no problems, more and more women now say their implants are making them seriously ill.
Further research is being made a priority in countries including Australia and the USA where scientists say BII is a form of autoimmune disease – a condition where your immune system mistakenly attacks your body.
Prof Jan Cohen-Tervaert has spent more than 25 years researching it: “We have sufficient evidence to show breast implant illness is caused by breast implants.
“They can cause a foreign body reaction and you can see that the immune system is activated. What more proof do we need?”
The Food and Drug Association, which is the drugs regulator in the US, has recently called for warnings about the risks associated with breast implants to be put on packaging containing the implants. It also acknowledges women do have “symptoms that may resolve when their breast implants are removed.”
A common complaint from women who say they have BII is the lack of support when they seek medical advice.
Malene felt like she had no help, so turned to the internet.
“It wasn’t until a girl on Instagram told me about this group on Facebook and it was like, ‘oh my god I have breast implant illness, it’s my implants’. There was no doubt in my mind that’s what it was.”
Prof Jan agrees the UK is lagging behind other countries and is wrong for not warning patients about the risks of BII.
“Women have the right to know what they’re going through, so information is crucial.”
The Department of Health hasn’t responded to Newsbeat’s request for a statement – but the Labour former Shadow Health Minister Sharon Hodgson says women need to be taken more seriously:
“This is real. All of these women, their symptoms disappear once they have their implants taken out. That proves what’s causing their symptoms. Surgeons need to take a long hard look in the mirror and ask themselves why they believe it doesn’t exist because the evidence doesn’t lie.”
She’s calling for women to be told about the risks of BII before they sign a consent form to go ahead with breast implants.
The UK healthcare regulator, the Medicine and Healthcare products Regulatory Agency (MHRA) says: ‘We will always investigate where there are safety concerns raised about a medical device. We continue to work with European and international regulators, breast implant registries and experts to monitor issues and will take appropriate safety action where necessary.”
BAAPS, BAPRAS and ABS add: “The UK Plastic and Breast Surgery associations are closely involved in a growing international collaboration by the healthcare community to collect the information needed to find out more about breast implants and inform our patients. Our guidance will be updated in the light of new evidence.”
Malene was left in so much pain that she decided to have her implants removed. And she’s delighted she did.
“That brain fog that was sitting on top of my eyes had gone, my rashes were literally disappearing in front of my eyes. I don’t even care what size my breasts are, because I’m happy and healthy and I think ultimately that’s what all the women want.”