I received the Essure permanent contraceptive implant in early 2011.  And so began a journey, and nightmare that led me campaigning for access to better information and treatment for women who experience injuries from medical devices. 

At the time, I was told the device would “just going to irritate the tubes into closing”, and was I allergic to nitinol?  I didn’t think so and went ahead with the procedure. I was given voltaren to take prior to the procedure. It was inserted like and IUD, and many believed it to be a form of IUD.

What I was not told, nor was anyone at the time that the actual mode of action was “this device is going to expand in the fallopian tube and then we’re going to give it a twist so it slices into your fallopian tube causing an injury, and these microscopic PET fibres are going to infiltrate that wound and cause an inflammatory response that will make the tubes fibrotic”. What happened to first do no harm?

No surprises that what was supposed to be a 15-minute procedure and walk out the door, turned into an excruciating forced type of labour procedure and I went into shock! Had there been some honesty, as some women in the US were later afforded, I would never have agreed to the procedure.  Nor would man others, and it would probably have been taken off the market a lot earlier.

A few months later I made the decision to put my career on hold to finally do my OE, but my health had other plans.  Over the following decade life became what I can only describe as an ever-worsening nightmare. I never did do that OE, and I’ve struggled to hold down a job since.

A few months after the procedure, I began experiencing palpitations and high blood pressure and was placed on cilazapril.

I started to experience extreme lethargy, persistent lower back pain, abdominal pain, irregular periods and unusual heavy bleeding, and I was diagnosed with fibroids.

I developed mastalgia and several breast lumps, presenting differently every time, resulting in having to endure multiple mammograms and scans.  At this time, I also began to experience sporadic, crippling pain. I later associated this with imaging and metal detectors, it was not like any pain I had experienced before, but I came to know it well when I needed future scans and X-rays.  It hasn’t happened since I have had the coils removed, nor have the lumps.

I was sent to a musculoskeletal specialist who could see no reason for my pain.

A cardiologist, who could see nothing wrong with my heart.  The cardiologist referred me to an immunologist.

The immunologist determined the cilazapril was causing oedema so they were thrown out.  It turned out my body was suddenly not coping with my usually mild allergies, and daily antihistamines, and nasal spray were added to my growing prescription list. 

I began bloating for no reason and it often felt like I was going into shock, I was tested for gluten intolerance, coeliac disease.  I changed my diet.   Turns out that’s a sign of device migration.

The more physically active I was, the sicker I would get. Exerting myself would set off severe lethargy.  I felt permanently foggy headed, as if I had a hangover all the time, became extremely forgetful and began to lose some of my cognitive function.  I would slur my words, was sometimes unable to cut up my food or feed myself, couldn’t comprehend tying shoelaces, I was constantly cold and was shaking all the time.  My feet were twisted, I was struggling to walk comfortably without padded soles in my shoes, I had no balance and experienced repeated falls and trips.

Fearing I was about to see off the last of my days in a dementia unit dying of some neuro disease, I decided that I wanted to get my coils removed before it took hold so that I could be spared the additional pain and bleeding I was experiencing and at least have some dignity in what I thought was the looming end of my life.

Deciding to go private to hurry the process along, I began looking for a specialist to remove the coils. What I discovered absolutely horrified me.

I learnt that the device had been recalled from the market three years earlier!

I made a whole new family that day, and learned that I was far from alone in my nightmare we call e-hell. 

I decided at least I probably wasn’t dying but now needed to fight for my life.

I learned that MedSafe had requested implanting specialists to monitor recipients.  No one told me, they didn’t tell anyone who received the device.

I wonder what my life would have been like if I had been spared some of those later effects, if I had known about the device then, instead of after I thought I was dying.

I had also been diagnosed with a vulval lesion that needed urgently removing. Due to the circumstances that I believed led to the neoplasia, I was booked for a hysterectomy.

Prior to surgery, I experience a uterine prolapse, and in a painful episode, discharged a rather sharp solid clot-type object. This was shrugged off when I presented it prior to undergoing a total abdominal hysterectomy to remove my coils.

My post op notes state that the surgeon could see the device in the tubes.  Pathology managed to slice my uterus into slivers and somehow not notice a 30cm piece of cheese wire, and a very definitely not intact device.  Diagnosis? Turns out I never had fibroids. I was diagnosed with Adenomyosis, a condition that occurs in women with Essure at a rate of 3 to 1 compared to women who do not have Essure.

Because no monitoring was done, no medical history has been taken, there was no help for me, or many others who have had their lives destroyed by this device.  Many of us believed that at the least ACC would investigate our full file from implant to extraction, but no one has done that to date.  ACC is only as good as the information a physician chooses to supply. If you don’t know, they don’t know.

There has been no post op physical rehabilitation, no financial support, no testing for heavy metal or toxic plastic poisoning, and very little understanding of what life with or after Essure looks like.  Removal is just the beginning of a long, and not always a full recovery for some, without remedial therapy or a detox pathway.

What I have learned is that although unusual, my story is not uncommon among Essure users, and nor is a deep mistrust of a system that so grossly failed so many of us.

Is it any surprise that many of us end up in the mental health system with a PTSD diagnosis?

Now, almost eight years after the device was recalled, many women are still unaware of the devices recall, and those who are aware have been gaslit, demoralised and ignored.  There has been no action to rectify the harm, or in fact, any acknowledgement from those that caused the harm, that harm has occurred or could possibly occur at any time.

How many women are living with this time-bomb unaware of the dangers they may face?

How is this acceptable medical care?  It isn’t.  There is simply no care in the medical system when it is that very system that has caused the harm.