New implant illness doctors tried to dismiss: Fatigue, chronic pain, insomnia, even hair loss

The pain felt as if my life was leaving my body and no one could do anything to help me,’ says Ana Remigio, 45. ‘I had awful joint and muscle pain in my hands, wrists and toes, as well as terrible fatigue, headaches and pain in my breasts.

‘Sometimes I couldn’t get out of bed. I was desperate. When my daughter started to walk, I remember screaming in pain if she stepped on my foot even though she was tiny.’

Ana, who lives in North London with her husband, Joao, and children Sam, 22, and Jo, 12, lived with this debilitating pain for more than a decade.

Doctors proclaimed themselves at a loss to explain it — but, after reading about her symptoms online, she became utterly convinced that they were caused by her breast implants, so much so that last year she paid to have them removed privately.

Ana, a social media manager, had the implants inserted in 2001 and experienced no problems until after Jo’s birth six years later.

‘I breastfed her, which the cosmetic surgeon had said would be totally safe, but that’s when my health problems started,’ she says.

‘I was referred to a rheumatologist, I had mammograms and ultrasound scans which showed nothing.

‘I was told I was probably suffering the start of osteoarthritis, chronic fatigue syndrome or a reaction to some kind of past trauma.

‘Then, at one point, a young doctor turned to me and said: “Do you think about illness a lot?” ‘

Ana felt he was accusing her of making it all up.

‘I knew I wasn’t imagining it. I was so angry. I’d already had a baby, I knew what motherhood felt like and I knew what being tired felt like. This was on a completely different level.’

A rational and intelligent woman, Ana is one of thousands worldwide who say they are victims of a mysterious condition that they call Breast Implant Illness (BII).

They report similar symptoms — including fatigue, chest pain, hair loss, headaches, chills, photosensitivity, chronic pain, brain fog and sleep disturbance — which many believe to be caused by some sort of immune reaction to the presence of a foreign object in the body, and which, for many, cleared up once the implants had been removed.

The UK’s Medicines and Healthcare products Regulatory Agency (MHRA), is now receiving 500 to 600 reports of breast implant problems a year.

Yet BII isn’t a recognised medical diagnosis, and there are no tests to prove its presence in the body.

Instead, many doctors put the symptoms down to a combination of factors, ranging from separate autoimmune conditions to depression, menopause and what’s known as ‘mass sociogenic illness’, where stress and fear about the potential harm caused by implants lead women to believe, and quite genuinely feel, that they are experiencing terrible pain.

There’s no suggestion women are ‘faking it’ — but many experts believe their problems are psychological.

The British Association of Aesthetic Plastic Surgeons (BAAPS), for example, says in official guidance: ‘A small proportion of women who have breast implants self-identify as having a number of symptoms they believe arise from the presence of implants.’

And Graeme Perks, former president of the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS), said of one case last year: ‘If you feel better [after removal] I’ll believe you, but I have to say it’s in your head, it’s not in your breasts.’

There have been precious few major studies carried out to establish the facts. Last year, the U.S. Food and Drug Administration complained that implant makers had failed to complete promised studies or to follow patients’ recovery for long enough.

Ana finds this attitude towards the pain that blighted years of her life understandably very difficult.

She now feels she was given false information about the safety of her implants: ‘I did a lot of research and was told the implants had a lifetime guarantee, that it was impossible to rupture them and that if anyone opened my grave long after I was dead, all they would find would be my bones and the silicone implants. So I went ahead with the operation.’

But, in 2007, she started to feel very unwell. Then, in 2012, she found an online group for women who were worried about BII, many of whom said they were bedridden.

Ana initially felt her symptoms weren’t severe enough to qualify — but her health continued to decline until, in 2018, she felt she could no longer doubt what was happening to her.

‘My hands were so weak I struggled to open a jar or lift the kettle. The doctors didn’t believe me, my husband couldn’t pay the bills on his own; I was worried about what was going to happen to my family,’ she says.

‘I wrote to my GP to ask for my implants to be removed on the NHS. She hadn’t heard of BII, but she was sympathetic and sent me to a breast specialist.’

However, there, Ana says, she was repeatedly turned away. She even took copies of BII studies to appointments, but says her concerns were dismissed by consultants at London’s top hospitals.

There was no way NHS funds would be used to remove her implants, she says she was told.

NHS policy on removal varies across the country, although many trusts will consider operating only if there’s a significant problem, such as breast pain, rupture or infection.

Last year, the BAAPS called for women to be made aware of the controversy before having surgery.

Ash Mosahebi, professor of plastic surgery at University College Hospital, London, says: ‘I don’t think silicone causes autoimmune disease, but there’s some evidence [it’s associated with] these symptoms. The difficulty is that there’s no test. You can’t prove or disprove it.’

Plastic surgeon Professor Jim Frame, of Anglia Ruskin University, says more research is needed. ‘We can’t say this condition doesn’t exist because we know there’s a large number of women who get better by taking the implants out, but all the publications on it have been in low-grade journals.’

Experts and manufacturers have already had to admit implants can cause cancer. Last November, a joint statement from three leading surgical bodies said there was a one-in-24,000 chance of developing a rare type of blood cancer called anaplastic large cell lymphoma from breast implants.

It’s the latest of many scares about breast implant safety.

In 2010, for example, French firm PIP was found to be filling implants with industrial silicone, making them more prone to rupturing.

Tests didn’t show any other serious health risks, but many women chose to have them replaced with medical-grade silicone ones.

Among them was Amanda Carter, 48, who’d had the implants since 2002 without issue. After the replacement in 2012, however, she rapidly developed severe symptoms that she believes were caused by autoimmune problems.

‘I put on 8 st and had to have half my thyroid removed,’ says Amanda, a former executive PA who lives in Durham with her husband, Darren.

‘I was in a very bad way. I had to have lots of rest every day and lost all ability to function normally.’

Chronic fatigue forced her to give up work, yet it took another seven years for her to link all this to the breast implants, which were removed last February.

‘I paid £2,000 to have them taken out by an excellent surgeon in Istanbul,’ she says. ‘Within three weeks, I wasn’t spending my days in bed any more. If there’s a common thread, it’s autoimmune disease.

‘We have 2,500 UK sufferers in our online BII group, but there are thousands more worldwide.’

It sounds compelling that so many women are convinced BII exists — but some doctors believe their symptoms are actually being fuelled by such internet forums.

Several studies have investigated whether BII is based in the mind, rather than the body. But results are frequently contradictory.

A report by Central Michigan University says the development of psychological interventions for women with breast implants warrants ‘serious consideration’.

Another school of thought holds that there must be some physical explanation for the symptoms — we just haven’t found it yet.

Specialists in autoimmune diseases have labelled the illness a type of Autoimmune/Inflammatory Syndrome Induced by Adjuvants (ASIA).

They believe breast implants made from silicone may trigger a major allergic reaction in genetically susceptible people.

Professor Yehuda Shoenfeld, of Tel Aviv University, says his research has identified nine antibodies he believes cause the syndrome.

The theory is now being tested on mice, and scientists hope to announce their findings in May, leading to a possible test for BII.

‘Powerful pressure groups [are] keeping these implants in use, but I wouldn’t recommend anyone puts them in their body,’ he says.

A major conference on breast implant safety is being held at Leeds Beckett University in June.

One of the speakers is Professor Jan Tervaert, who has studied implants for over 25 years. He, too, hopes to produce a diagnostic test in ‘three to five years’.

‘Our studies show women with breast implants have a 25 per cent chance of developing some form of autoimmune disease,’ he says.

‘We demonstrated in an analysis of 25,000 cases that the symptoms go away on explantation [implant removal]. That doesn’t prove [symptoms] are due to implants, but it certainly suggests it.

‘You have to ask, when do we stop using these things?’

While the medical debate rages, women who desperately need answers are being ignored.

Among them is 41-year-old former model Malene El Rafaey.

Malene, who lives in Esher, Surrey, with her partner, Oliver, 25, says she saw doctors ‘at least 20 times’ before having a £10,500 implant removal and breast lift in 2017.

Her problems began after the birth of her daughter, Skarlett, in 2010, five years after the implants were inserted.

‘Although I had been told I could breastfeed with implants, I couldn’t,’ says Malene, who is also mother to 20-month-old Mason.

‘I got horrific mastitis which was honestly more painful than giving birth. Then I developed eczema on my face.

‘My eyes were completely dry and itched all the time. It got worse and worse, almost as if I could feel my face swelling every time I touched anything.

‘I had lumps in my armpits, rashes on my face, arms and hands, and blisters all over my toes.

‘My breasts were incredibly painful and by 2017 I was sure I had cancer and was dying. I couldn’t believe this would be the rest of my life.

‘I think my implants were literally killing me, poisoning me. I have felt great since I had them taken out. Now I want to make sure other women know this is happening.’

Ana Remigio, too, believes it’s vital women are warned about BII — however it’s defined.

‘Women aren’t being told everything they need to know and many of them are being lied to,’ she says.

She had her implants removed last year at a private clinic. An examination revealed one of them was leaking gel from a large tear that had not been seen in scans.

Doctors say this isn’t necessarily harmful, though it can cause issues, for example if the gel forms lumps.

Ana still has some residual joint pain, but most of her symptoms disappeared almost immediately.

Amanda Carter says she believes repeated consultations with affected women will cost the NHS far more than the bill for simply removing implants on demand.

‘Implants went out of fashion a bit after the PIP scandal, but now they’re more popular than ever thanks to the Instagram generation,’ she says.

‘I think we’re going to see a huge increase in these issues.’