OPINION

IT TOOK approximately 15 years after its initial release for the Essure contraceptive device to be removed from the Australian market.

Years of women being ignored by doctors. Years of victim blaming. Years of activism, including campaigns by personalities of the likes of Erin Brockovich. But this didn’t happen ‘back in the day’.

The Therapeutic Goods Administration (TGA) issued the ‘hazard alert’ late last year, reminding us that even with today’s scientific advances, we might be wise not to take glossy marketing at face value.

Pharmaceutical giant Bayer was under the spotlight again recently for yet another one of their devices, the very popular intra-uterine contraceptive, Mirena. And when I say ‘popular’, I mean it has almost become trendy.

A spokesperson from Bayer told me that almost one million women have had a Mirena IUD fitted in Australia, with millions of women using them worldwide. It is so popular that if you dare speak against it, be prepared to get a whole bunch of women who have it, love it, defend it and place the blame squarely on the victim and the error of their ways.

Last week, Sunshine Coast mother Shannon Hubbard told of her horror of near-fatal blood-loss from her Mirena which has left her unable to carry any more children. She underwent three emergency surgeries and ended up in ICU, her surgeon telling her she almost died.

“I’m devastated and I don’t know how it’s going to affect me,” she told Nine. “I’m only 25, I had lots of years ahead of me and it’s been taken away. I can’t stop thinking now that this small decision almost cost me my life.”

It is this decision that I also grapple with. An infection that developed in my uterus had me presenting to emergency two years ago unable to talk, walk or be touched. It was like my body shut down. Bleeding and fatigued, I exhibited weeks prior to this and was considered ‘normal’ by my GP (spotting is an expected side-effect) and thus was left untreated, despite the risks associated with Mirena and pelvic inflammation disease.

Mirena is a foreign object to our bodies, so when an infection develops, it is much more serious. But no internal examination was conducted in emergency despite my mentioning the Mirena. Instead I was checked into a pain management hospital for fibromyalgia. It was only when I started bleeding after water-based physiotherapy that an obstetrician was called in to examine me. He said the Mirena had to be removed immediately.

My story is by no means an anomaly. There are many Australian-based and international Facebook groups of women who claim to have been affected by the Mirena. Failed by their doctors and governments, these women have turned to each other for support. One such international group has over 4000 members.

Unable to find answers from the doctors around me who insisted the Mirena had nothing to do with anything, I checked myself out of hospital and went online for help. The gynaecologist had recommended I take the contraceptive pill after the Mirena removal but women in the group spoke of allowing my body to regulate and cleanse itself. I took comfort in women who had had similar experiences and followed tips on how they overcame things.

I had been three years into having a Mirena when all this happened. Mirena was recommended to me by my gynaecologist to treat my painful periods. She told me it was safe. Although I am 90 per cent back to normal, that 10 per cent remains unhealed, a part I can never get back, because I made a decision I wish I never did. I have fibromyalgia now and I don’t know when it will flare up next.

Just like the Essure, women were not taken seriously for so many years, we, the Mirena sufferers, continue our fight to be heard by doctors and regulatory bodies such as the TGA.

It is not good enough that we have to turn to Facebook for health advice. It is not good enough that doctors ignore us. It is not good enough that I spent countless hours submitting a case to the Australian Health Commissioner only to have my case closed because it was found that the clinical care provided by my GP was appropriate in the circumstances. None of this is good enough.

But it is a surprise? Especially when a recent report found that companies such as Bayer sponsor events attended by medical professionals. The report, which was published on the ABC late last year, was quickly refuted by The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), which strongly supports the long-acting contraceptive.

“The figures of adverse events quoted by the ABC demonstrate how uncommon any major complications are — affecting less than one in a thousand women,” the media statement said.

But what the RANZCOG are forgetting is that the ABC report only included complications reported to the TGA. My case was not reported because none of my doctors considered it caused by the Mirena.

Associate Head in the School of Health, Wellbeing and Social Care at the Open University in the UK, Dr Lesley Hoggart, specialises in reproductive health. She recently published a report: The contraceptive implant: understanding how experiencing side effects may challenge bodily control and lead to removal.

“I think more research does need to be done in Mirena,” she told news.com.au. “I do not have research evidence on side-effects; in general practice the risks are not accurately described to women and women often rely on information from family and friends.”

In a statement to news.com.au, the TGA said: “The TGA actively keeps the safety of products such as Mirena under review and as part of this work we regularly monitor the scientific literature for new and emerging information on medicines safety topics and will continue to do so for Mirena.”

Bayer said: “Mirena continues to have a positive benefit-risk profile as assessed by global surveillance and health authorities around the world, fully aligned with what was seen during the clinical development program that formed the basis for the product’s approval.

“The adverse event profile of Mirena is clearly acknowledged in the product label.”

Koraly Dimitriadis is a freelance writer. Follow her on Twitter: @koralyd