Thousands of women say they have breast implant illness. What is it?

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How safe are breast implants?
WATCH: Breast implants come with risks. Here's a look at some of the issues – May 19, 2019

Every time Johnna Bryson sits up after lying down, she experiences sharp pain in her chest.

She says it feels like an “elephant is sitting on her chest,” and it happens whenever she reclines for longer than 10 minutes.

The 26-year-old had breast augmentation for medical reasons when she was 17, and, at first, the implants helped boost her confidence. But in the last year three years, things have changed and Bryson now believes her implants are linked to her health issues.

READ MORE: How safe are breast implants? Women warn of risks, share their symptoms

On top of severe chest pain, Bryson says she has decreased cognitive function and brain fog. She’s also experienced swelling on her left breast, fatigue and sudden weight loss and says she is constantly sick with viruses.

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When Bryson brought her symptoms to the surgeon who performed her augmentation in April, he laughed off her concerns: he refused to believe her ailments had anything to do with her implants, she said.

Since then, the nursing student has been going to appointments with specialists, looking for answers. She recently visited a new surgeon who has been taking her pain more seriously.

WATCH: Hundreds of women join class-action lawsuit against breast implants

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Hundreds of women join class-action lawsuit against breast implants

Bryson battles moments where she questions if these symptoms are tied to her implants — being a single mom and student can be exhausting — but the pain she’s in isn’t getting any better.

In fact, it’s getting worse.

“As it becomes more and more unbearable, I am doing everything I can to just have my voice heard,” she said.

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What is breast implant illness?

Bryson is not alone in suspecting her sudden health issues may be linked to her breast implants.

“Breast implant illness” is not an official medical term, but a term used — often by patients — to describe a constellation of symptoms believed to be caused by breast implants.

READ MORE: Allergan recalls Biocell textured breast implants worldwide

Symptoms include fatigue, joint pain, cognitive impairment, hair loss, headaches, chills, body odour, anxiety, brain fog, sleep disturbance, depression, neurological issues and hormonal issues, according to the American Society of Aesthetic Plastic Surgery.

“It’s a labyrinthine issue that I don’t think we have the science to prove or disprove currently,” said Dr. Nick Carr, a Vancouver-based plastic surgeon at Skin Works, pointing to research on the topic published by the U.S. National Center for Health Research.

“In my experience in dealing with women who have symptoms… that they attribute to their breast implants, there is no question they are suffering from a variety of complaints,” Carr said.

WATCH BELOW: Winnipeg woman wants others to be warned about breast implants

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Winnipeg woman wants others to be warned about breast implants

But there are currently no scientific tests that are able to prove or disprove the connection between these subjective symptoms and breast implants, Carr said. This makes it difficult for patients as well as surgeons to understand what’s going on.

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“Furthermore, these types of subjective symptoms are very common, and many — if not the majority of people — experience them at some time in their lives,” he added.

Complaints of being ignored

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Judith Coates is an Orillia, Ont.-based woman who runs a breast implant illness advocacy group. A breast cancer survivor, Coates had a textured silicone implant added after undergoing a mastectomy on her right breast.

READ MORE: Health Canada suspends Biocell breast implants due to increased cancer risk

Coates felt fine for the first six months after her surgery, but then started to experience what she describes as a host of symptoms, including chest pain, joint pain, blurry vision and difficulty breathing.

She also kept dropping things and says she lost feeling in her hands.

Coates says her surgeon ignored her concerns and maintained that her symptoms were not related to her implant. Unconvinced, she began researching breast implants online and discovered information about her type of implant, including health warnings describing the same symptoms she was experiencing.

WATCH: Autoimmune specialist calls for warnings on breast implants

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Autoimmune specialist calls for warnings on breast implants

Around this time, Coates also discovered Facebook groups of women just like her who complained they became sick after getting breast implants.

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“It was like the light went on for me,” Coates said.

Coates had her implant removed by a different surgeon in 2018. Her second surgeon was recommended by other women in a breast implant illness Facebook group.

The National Center for Health Research reported that by 2018, there were “more than 50,000 women reporting a range of symptoms they refer to as ‘breast implant illness’ on two Facebook pages: Breast Implant Illness and Healing and Breast Implant Victim Advocacy.”

READ MORE: ‘They should be better warned’ — Canadian doctor on breast implant risks

Coates has since petitioned the Canadian government to look at the harm breast implants are causing to “thousands of Canadian women.” The petition, which was presented in April, asks Health Canada to investigate the links between implants and a rare form of cancer, as well as autoimmune diseases.

Power of social media

Coates’ experience has also made her a vocal member of a breast implant illness Facebook group. She says members often have been told their symptoms are “in their head,” or had their implant concerns belittled by doctors.

“I can’t tell you the number of women that join our group every week that say, ‘I just joined this group and I’m in tears because I’m reading all these posts and it exactly mirrored my situation.'”

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WATCH: Bowmanville woman claims her breast implants made her ill

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Bowmanville woman claims her breast implants made her ill

“It’s almost humbling to think that there are so many women that are looking for answers, but they finally found us.”

This sense of validation is also why social media has become a powerful tool around breast implant illness awareness.

A 2017 study on breast implant illness groups on Facebook found that members “often express frustration with plastic surgeons when there is a perceived dismissal of symptoms.”

One of the study’s authors, Dr. Ahmed Afifi, an associate professor of plastic surgery at the University of Wisconsin, said social media offers these women a form of support.

READ MORE: ‘I was on death’s doorstep’ — Winnipeg woman says breast implants ruined her health, her life

Afifi says that despite what is known and unknown about breast implant illness, the medical community should treat all patients with respect and listen to their concerns. He wants patients to feel they are being heard.

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“The medical community is examining this closely and… is taking this seriously,” he said of breast implant illness.

“We have no explanation at this moment of how the breast implants can cause any of the issues… However, we are listening to the patients and trying to find a connection. So far we can’t find any connection.”

What do experts say?

The conversation around breast implant illness is complicated, says Dr. Mitchell Brown, a Toronto-based plastic surgeon and associate professor of surgery at the University of Toronto.

WATCH BELOW: Textured breast implants may put your health at risk

Click to play video: 'Textured breast implants may put your health at risk'
Textured breast implants may put your health at risk

Brown, who has run a clinical practice for over 20 years, says the “vast majority” of women who have breast implants experience few adverse effects and are “healthy and happy.”

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Still, this doesn’t mean women are making breast implant illness-related symptoms up.

“I have certainly seen some women — a small minority — but some women over the course of my career who have had a significant constellation of symptoms that are unusual, difficult to diagnose and that they relate to starting sometime after having had a breast augmentation,” Brown said.

READ MORE: Alberta woman believes breast implants made her sick

“I think many people in the medical community feel that although it’s rare, there probably are a small subset of patients whose immune systems react to the insertion of the foreign material in a way that’s not particularly typical for most patients, and therefore they may become ill or unwell from their implants.”

There have been, however, recognized health risks associated with certain breast implants.

In July, Allergan recalled its Biocell textured breast implants and tissue expanders across worldwide markets, citing concerns over a rare form of cancer, after the U.S. health agency asked the drugmaker to pull the products.

The Food and Drug Administration found the use of these breast implants was tied to increased risk of a rare type of cancer known as breast implant-associated anaplastic large cell lymphoma (BIA-ALCL).

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Coates applauded the recall and sees it as a step in the right direction.

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“It’s really very encouraging to see that surgeons are looking for answers and that there’s hope on the horizon,” she said. “Maybe they’ll start looking into doing some clinical tests to check for breast implant illness.”

Removing breast implants

For Coates, removing her implants significantly improved her symptoms. She is happy with her decision and says she feels better than she did with the implants. 

Removing implants poses risk, Brown says, because unless you are confident your symptoms are a result of your implants, you may go through an unnecessary procedure.

Because symptoms like discomfort and fatigue are also associated with thousands of other health issues, Brown says, it can be difficult to attribute them solely to breast implants.

READ MORE: The Pill was legalized 50 years ago, but experts say we can still improve contraceptive access

If it is believed that implants are causing symptoms, however, removing them would ideally improve a patient’s condition, Brown said.

Bryson is unsure if she will have her implants removed, but with every health issue, she is more and more inclined to take them out. She is growing increasingly frustrated with her situation and just wants to feel better.

“There are so many mixed emotions for me surrounding breast implants, and these feelings go much deeper than what is seen on the surface,” she said.

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“They have the potential to change someone’s life in ways you can’t understand until after you’ve gotten them. They’ve changed my life, that’s for sure, for better or for worse… I’m still trying to figure that one out.”

— With a file from Reuters and Leslie Young

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