'We give the patients a voice': Online platforms offer support to people allegedly injured by medical devices

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After Amanda Dykeman gave birth to her third son, she had a medical device implanted to stop her from getting pregnant again.

Almost right away, she felt something was wrong.

"I bloated out to where I looked pregnant, I started experiencing migraines so severe they were debilitating, my regular periods then became irregular and full of clots," she told The Current's Anna Maria Tremonti.

The implanted device was Essure, a small metal coil that is placed in the fallopian tube. When scar tissue forms around the device and blocks the tube, it renders a woman sterile.

Dykeman, who lives in Iowa, said her doctor had billed it as a quick non-surgical procedure with no side-effects and no downtime — "perfect for a mum with three children."

But when her symptoms arose, she found groups on social media where hundreds of women were reporting the same issues.

"I was shocked because, like I said, my physician had made it seem like such a cakewalk, and when all these women kept joining and joining with the same symptoms, you kinda gotta put two and two together and realize there's something wrong with this device."

Health Canada warned of potential complications with Essure in 2016.

The Current contacted Bayer, the company that makes Essure, and received the following statement: "We were very sorry to hear that a patient experienced difficulties. Patient safety is Bayer's top priority and we remain strongly committed to women's health, an area in which we have long been a leader. The safety of Essure is supported by a robust body of scientific study data."

Bayer didn't create Essure, but it bought the company that did, 11 years after the device was approved for use.

Bayer voluntarily discontinued the sale of Essure in Canada for commercial reasons, but said its decision was driven by a decline in patient demand, and not a product recall. In July, the company announced in a press release that it will stop selling the product in the U.S. on Dec. 31, 2018.

In a press release, the company said the decision was "based on a decline in U.S. sales of Essure in recent years."

"Women who currently have Essure in place can continue to use the device. The benefit risk profile of Essure remains unchanged," the statement said.

Dykeman called Bayer's statement "a blanket response."

"At this point I just wish they would admit the issues," she said, "and the travesty that this has caused upon so many women, and take some responsibility for it."

Dykeman is now an administrator on the private Facebook group Essure Problems, which has 41,520 members.

A joint investigation by CBC/Radio-Canada and the Toronto Star, in collaboration International Consortium of Investigative Journalists, has found problems with approval and monitoring process for many medical devices, from pacemakers to breast implants.

People look online 'for someone like them'

People with health issues turn to the internet for two reasons, said Susannah Fox, a private consultant who previously worked at the Pew Research Center studying the intersection of health and technology.

One reason is "a quick second opinion, just to maybe check to see if this sounds right to Dr. Google," she told Tremonti.

The other is that scared or lonely people are looking online "for someone like them."

"People want to get that personal experience sometimes — whether it's something everyday or something very serious — that before they make this big choice, they want to find out what other people like them have done."

Dykeman said the Facebook group she administers is very careful not to offer medical advice: "None of us are actual physicians."

Instead the group offers contacts to doctors who have worked on the issue, and advice on how to report adverse reactions to the U.S. Food and Drug Administration.

Fox is an advocate for patients discussing their care options online, known as peer-to-peer healthcare.

It can help patients with "learning the vocabulary" to discuss treatment options with doctors, but also help them adhere to that treatment, as they have confidence that it's the right course.

The practice can also help doctors, she added, by letting them learn about a patient's "actual lived experience with a condition, the actual lived experience of a surgery" in order to help give better advice.

"The benefit is that doctors don't have to guess what it's like to live with diabetes, they don't have to guess about whether this surgery is the right thing.

People want to get that personal experience sometimes ... they want to find out what other people like them have done.- Susannah Fox

There is the risk that misinformation could be spread online, she said, but added it could be tackled by doctors engaging and sharing studies with accurate data.

She also pointed out a concern about "group-think," where an online community adopts one approach as the correct approach, even though it may not suit the needs of all patients.

Written by Padraig Moran. Produced by The Current's Julie Crysler and Danielle Carr.

• The CBC/Radio-Canada/Toronto Star investigation is part of a global media collaboration through the Washington-based International Consortium of Investigative Journalists. The ICIJ has investigated tens of thousands of medical devices and how they're made, approved and monitored by regulators worldwide.
• Learn more about your medical device by searching our database of Health Canada records.

The Fifth Estate investigates Essure, a permanent birth control device. Watch Unreported: The Essure Story this Sunday, Dec. 2, at 9 p.m. ET on CBC TV.