22 Jun 2018

'Breast implant illness': So many people don't believe what we're saying - Young NZ woman

5:03 pm on 22 June 2018

A young New Zealand woman believes her breast implants were making her sick, and thousands of others say they are having similar experiences - but the medical community says there is no evidence of the link.

Nikki Janes claims she suffered from 'breast implant illness'.

Nikki Janes claims she suffered from 'breast implant illness'. Photo: Supplied to RNZ

Nikki Janes, 29, claims that she suffered from breast implant illness - a term thousands of women around the world and some in New Zealand are using to describe symptoms they believe are from their breast implants.

Some of the symptoms they describe include chronic fatigue, memory loss, muscle pain and weakness, hair loss, limb numbness, tingling, skin rashes, a choking feeling, shortness of breath, headaches, depression, and swollen/tender lymph nodes - but it is not recognised by the medical community.

Ms Janes, who lives in the Gold Coast, said she had always wanted larger breasts and on her honeymoon in 2011 underwent breast augmentation surgery in Thailand.

"They were so cheap, they were only $3500, so I thought why not."

But after four or five years she started noticing symptoms that were making her sick and in the past year as she was making plans to go and travel, the symptoms got worse.

So she decided to do some research on what was making her sick and joined Facebook support pages.

More than 2000 people are part of a New Zealand, Australia breast implant illness support page.

And 44,000 people are members of the world support page called 'Breast Implant Illness and Healing by Nicole'.

"I started seeing people having a lot of same symptoms that I had."

The symptoms

One of the symptoms Nikki said she had was random white patches of hair.

One of the symptoms Nikki said she had was random white patches of hair. Photo: Supplied to RNZ

Ms Janes said she suffered from inflammation, bloating, chronic fatigue, brain fog (problems with memory, focus, and decision-making), white patches of hair and shooting pains.

"I was having a nap for at least two hours every day, I could just not stay awake," she said.

"When I exercised that was the worst, it would feel like my blood was boiling and I'd have pins and needles in my hands and feet and my lymph nodes would get really swollen and sore under my arm pits.

"I thought 'what's wrong with me, I'm getting old way too fast - something is definitely not right.'"

In November last year, she found out she had a ruptured implant on her right breast, after going in to the doctors for a check-up because of a lump in her other breast.

Ms Janes said after finding out about her rupture and doing research on the possible side-effects of breast implants, she decided to get them removed. She spent the $15,000 she had saved to go travelling on the procedure.

"I had to choose my health or my happiness to go travelling."

After her implants were removed, it was discovered that both her implants had been ruptured.

But Ms Janes said a lot of women on the Facebook support pages didn't have ruptures, so she believes most of her initial side-effects were from the implants.

"This year everything was worse, all the symptoms... I couldn't go out with my friends anymore, I couldn't function, I couldn't think straight, I had a lot of brain fog and couldn't even say a sentence fully and it's just horrible … you just feel like a stupid person."

Another woman who experienced similar symptoms, 33-year-old Michaiah Simmons from Auckland, said she had quite a lot of unexplainable symptoms after having implants put in as well.

Michaiah Simmons is speaking out about her experience with having breast implants to help other women make better informed decisions.

Michaiah Simmons is speaking out about her experience with having breast implants to help other women make better informed decisions. Photo: Supplied to RNZ

Ms Simmons had her first breast augmentation surgery done at 21 years old and had them in for 10 years up until 2016 when she got them explanted.

She said her worst symptoms were anxiety, heart palpitations, fatigue, memory loss, brain fog, aches and pains all over the body, tingling and numbness, losing hair and sensitivity to light.

"I had really bad memory loss and brain fog... I'd sit down to do some work or something and literally couldn't remember what I was meant to be doing for the life of me," she said.

Ms Simmons believes that the implants may not have caused all of the symptoms but that they definitely made them worse.

"I will one hundred percent hand on heart say that symptoms were either from the breast implants or they were made worse by the implants ... and has got better since I have taken them out."

'No scientific evidence'

Association of Plastic Surgeons president John Kenealy said there is no way to know for certain if the symptoms some women are describing are linked to their breast implants.

Mr Kenealy said scientific evidence doesn't support it.

"It's human nature to look for a reason for anything that happens to you in life and that's the normal thing, women will look and say 'why am I different from another woman, oh I've got breast implants therefore they must be the cause'."

However, he said things like breast implant-associated anaplastic large cell lymphoma (a cancer of the cells of the immune system) has only just been recognised in the last five or so years.

Mr Kenealy said symptoms that are often associated with breast implant illness cover a huge variety of different and various and for the most part vague symptoms.

"If you look in the general population [the symptoms] are actually quite common and therefore it's quite conceivable that a woman by chance will have breast implants and will have these symptoms because they were going to have those symptoms anyway."

He said the finger has been pointed at breast implants for 30 or more years and that a lot of research went on in the late 80s and early 90s trying to establish whether or not any of the symptoms were linked to breast implants, and science failed to find an association with them.

The figures

ACC figures obtained by RNZ show that between 1 July 2013 and 14 June 2018, ACC made cover decisions for 234 claims related to 'breast implant' - 155 were accepted, and 79 declined.

The top five types of claims that ACC accepted was for infection, haematoma (a sold swelling of clotted blood within the tissues), ruptured implants, prosthetic damage/failure and seroma (a pocket of clear serous fluid that sometimes develops in the body after surgery).

The top five primary injuries for accepted claims (a seroma is a pocket of fluid that sometimes develops after surgery).

The top five primary injuries for accepted claims (a seroma is a pocket of fluid that sometimes develops after surgery). Photo: Supplied to RNZ

This table shows the leading reasons claims are declined.

This table shows the leading reasons claims are declined. Photo: Supplied to RNZ

In a statement to RNZ, Medsafe group manager Chris James said: "Saline and silicone breast implants have similar risks. They include breast pain, changes in breast sensation, internal scarring, implant leakage or rupture and the need for further breast surgery."

Medsafe also said information about the risks of breast implants is available on their site.

In New Zealand, it is not known how many New Zealanders get breast implants or explants each year because there is no system for tracking them.

But in Australia there is a breast device registry that records information on surgeries involving breast devices, such as breast implants.

"Currently, there are no plans by the Ministry of Health to establish a register for breast implants at this stage," Mr James said.

'Probably 90 percent of the side-effects are gone'

Nikki with her mum in hospital just before she got her implants explanted.

Nikki with her mum in hospital just before she got her implants explanted. Photo: Supplied to RNZ

Three months after having her implants removed, Ms Janes said she felt much better.

"Physically I feel amazing, incredible … probably 90 percent of the side-effects are gone."

"I don't have bloating, puffiness, I don't have to nap any more, the lymph nodes have gone away, I don't have pins and needles, and pretty much everything is gone."

But emotionally it had been a rocky road.

Ms Simmons also agreed that after having her implants taken out, that she had seen a lot of the symptoms started to slowly disappear.

One of the first things she said she noticed after the explant surgery was that she could see colours really clearly and that her sensitivity to light had improved.

"I'd been living with this dark cloud over my eyes," she said.

"I also lost a bit of weight … turns out I had a lot of inflammation all over my body which was the body's reaction to having these toxic foreign objects in there."

She also said she was almost 100 percent back to being able to focus on work.

'So many people don't believe what we're saying'

Ms Janes said the fact that some of her symptoms disappeared after having her implants removed showed the illness was real.

"So many people don't believe what we're saying and I just think how is that not proof enough?"

"I think some people think we're deluded to be honest and people are trying find something to blame it on. Like, yes, some things might not be related to breast implant illness, but when you look at everyone having the exact same symptoms I just think it has to be related surely."

Ms Janes said her surgeon was very understanding when she asked for her implants to be removed.

"He said 'it's your body, your health and I understand it because I've had so many girls come in recently with the same thing'."

Ms Janes said she hopes by telling her story, more women who are experiencing side-effects from breast implants will come forward, so that it can spark more research to be done.

Ms Simmons said that when she got breast implants there was not enough information out there about it and that she hopes by speaking out she will also encourage other women to make better informed decisions about getting the surgery.

"I'm not saying to people to not get the surgey or anything like that, I'm saying hey be aware this is my experience and are you willing to take the risk?"