…he told me all about Essure and how it could be done along with the ablation, how easy it was to do and how lucky I was that he was in on that particular day as he could do it.
In December 2016, I visited my GP as I was feeling increasingly rundown; she noticed that my tongue was pale and bumpy and suggested I may be anaemic and sent off blood tests which confirmed this. Later tests also confirmed that I was severely deficient of Vitamin D. I was given the maximum dose of each and was monitored until there was an improvement. The main cause of my anaemia was due to my extremely heavy periods, which were becoming heavier with every cycle and had caused me to leave work because of ‘flooding’ issues. The GP I saw referred me for an ultrasound scan and also to the Gynaecology department of my local hospital.
The ultrasound scan showed nothing untoward, which was reassuring, so when I had my appointment with Gynaecology, I was given a few different options. They were reeled off to me in a robotic, monotone fashion, as if it was something the doctor could recite in her sleep and I had to ask her to repeat the information as I hadn’t taken it in, which she did in exactly the same tone, using exactly the same word order (I even replayed the appointment back my mum this afterwards mimicking the doctor to a tee!): Novasure endometrial ablation was one of the options; the doctor mentoned that I could be sterilised at the same time and talked about an innovative way of doing it called Essure. She also mentioned having tubes tied or hysterectomy, and again reeled off statistics which really meant nothing to me. I was torn between having an ablation or having a hysterectomy and asked for some information on the different procedures as I felt bamboozled. I was given some leaflets but not all information was available. I asked if I could phone back once I had made a decision.
Since having our second child, I had tried various contraceptives, including the contraceptive pill, the implant (which made me extremely hormonal) and the Mirena coil, which caused me to bleed continously until I had it taken out around 4 months later. We knew that we needed to do something more long term but were unsure what. My partner meanwhile visited the GP to discuss having a vasectomy. He was told about all the risks in all their gory detail. He was obviously a bit reticent about doing it but had decided he was going to go back and be referred. After some discussion, and without doing any research (which I bitterly regret), I called the hospital and told them I wanted to go ahead just with the Novasure endometrial ablation.
An appointment was sent through for June 2017 and I read up on the procedure. The day of my appointment came and I was very nervous. My partner could not find a car parking space, so dropped me off and joined me later. Before he arrived I had my pre-op chat with the surgeon, who went through the consent form with me and asked questions, one of which was about contraception. I told him that my partner was wavering about a vasectomy and he told me all about Essure and how it could be done along with the ablation, how easy it was to do and how lucky I was that he was in on that particular day as he could do it. He made it sound so simple and straightforward, with very little side effects, and I thought, “Yeah, why not!”, thinking it woud save my partner the pain of a vasectomy and that I may as well get it all sorted today as I was there already.
I was asked general questions about my health, including allergies and told them the name of a drug I was allergic to, but stupidly did not mention hayfever, oral allergy syndrome (I had been under the Immunology department of the same hospital so in the back of my mind thought that if it was important that they would double check with my records anyway). I was told that the coils were made of titanium so did not think to mention that I react to nickel in jewellery. I then went into the waiting room, had second thoughts and tried to Google ‘Essure’, but there was no signal. My partner arrived and I told him what I was having done; he was concerned but I repeated back to him what the surgeon had said to me about the coils, selling it as a really positive procedure.
The procedure itself was uneventful; I was sedated and had no pain, although I do remember the feeling of heat from the ablation. When I came round afterwards, the surgeon came and gave me a little Essure card to keep in my purse in case I set off alarms at the airport! I went home with a heatpack the hospital had given me for the cramping and lay down.
I spent the evening reading about Essure and kicked myself for being so trusting.
When I felt a bit better, I decided to Google what I had had done to see what the recovery time would be. The Bayer black box warning was the first thing I read and I was horrified at reading the warning about those with an allergy to nickel. I wasn’t even told that the coils contained nickel; I would never have even considered having them had I known. I spent the evening reading about Essure and kicked myself for being so trusting, for making a spur of the moment decision and for being so stupid. When my mum phoned to see how the ablation had gone, I was so embarrassed of my own stupidity that I didn’t tell her about the Essure.
Novasure endometrial ablations and Essure should never be carried out at the same time.
The day after my procedure, confused and upset, I joined the Essure Problems support group on Facebook, who led me to the UK support group. I learned that, at the manufacturer Bayer’s recommendation, Novasure endometrial ablations and Essure should never be carried out at the same time. The more I read the more upset I became. My procedure was on a Thursday and the following Monday, I called the surgeon’s secretary to make an appointment to go and see him. I told her that I was allergic to nickel and needed to have the coils taken out. I spend the next few days collating files and papers and went to visit my GP, who had never heard of Essure. I broke down and wept as I tried to explain about not being fully informed about the risks, about how the two procedures should not have been done together and about how I was stuck with these coils, that I may be allergic to, for the rest of my life. I felt like I was being over dramatic but I was so scared. She told me that she was sure that the doctor would never knowingly do anything to cause harm and to wait and see what the hospital appointment would bring. She signed me off work for an additonal week as I was in such an emotional state; prior to this I had never had more than two days off sick before in my life!
A fortnight later I had an appointment at the hospital, which my partner attended with me; I was assured that the nickel was not an issue for most women, even those with allergies to it. I explained about my reactions and insisted that I wanted them removed. I also asked why the two procedures were perfomed together when they were not meant to be and got no clear answer to this. We were advised to wait three months to see if the ablation had worked before making a decision about tube removal or hysterectomy.
Last autumn I returned for my follow up appointment, again with my partner. I had developed a rash around my hair line and on my neck and was convinced this was as a result of Essure. I had had no periods or bleeding after the first two months, but did have fairly constant pelvic pain. After a long discussion, I opted to have a total robotic hysterectomy, along with bilateral salpingectomies to remove the Essure and my Fallopian tubes.
I am 11 weeks post hysterectomy; at the time of my operation, I had developed a pin prick rash all over my face, as well as the rash along my neck and hairline. It went within a day of the op and so can only be attributed to Essure. I was sad to learn that during the operation, widespread peritoneal endometriosis was discovered, along with bowel adhesions. As a result, I also underwent excision and diathermy of the endometriosis. I have kept my ovaries.
I have stopped beating myself up about my snap decision to have Essure, and am no longer angry at the lack of (and mis-) information given to me about the product. I consider myself to be one of the lucky ones; I had Essure for just over 6 months and my only side effect was an itchy rash. However, I wonder how it might have continued to affect me over a lifetime and I worry about the ladies who still have it.