The Essure implants showed clearly on the screen and the nurse asked “what the hell are they?”

Hi. I’m Alison. I am originally from Worcester and now I live in Devon. I’m in my late 30s now and had Essure fitted in 2014. I haven’t got kids, I’ve never wanted children and nor does my partner, so sterilisation seemed like a better option than being on hormonal contraceptives until menopause. I created this website after getting to know other ladies who’d had far worse experiences with Essure than I did.

Before I moved down South, I spoke to my GP about sterilisation. At the time I was perhaps 34, and I knew that I didn’t want children. I didn’t like the idea of being on the Pill or having injections right up until menopause, and the idea of the implant makes me go a bit shivery. The doctor said I’d have to be counselled through the decision because I was young for permanent sterilisation.

That counselling never really happened – I think the most I got was another of the practice doctors asking me if I was sure, because it was irreversible. It was only when I went for a consultation prior to surgery that I was told about Essure. It sounded simple enough – plumbing work, really! I did ask what it was made of, and was told “the same things they use in replacement joints – surgical steel, nylon, things like that”.

Maybe for ladies who have had kids, it’s easier – but for me, the insertion was so painful I was screaming, and in the end, the consultant gave up and said we’d try again under a general anaesthetic. They wheeled me back to the ward, crying.

A month or so later, the insertion was done while I was knocked out, and apparently all was well. Not long after that, I moved to Devon, but when the appointment came through for the HSG (the scan that checks Essure is properly placed) I had no option but to head back up the M5 for it. My GP in Devon had never heard of Essure.

The HSG was also painful; I was in tears, but this can’t be done under anaesthetic because you have to move around on the table, so I had no option. The results were good and I was told Essure was effective. At this point I was quite happy.

A few weeks later though, I started to get pains. It felt a bit like period pains, so I ignored it. Gradually though they got worse, and I picked up a couple of cases of BV too, and thrush, and I began to stress out. My GP tested me for everything – I was clear, but I was given antibiotics “just in case”. By now the pain was also in my lower back. It felt like kidney pain – like they were hot, heavy little stones – so the GP suspected a urinary infection. Despite the antibiotics, it didn’t clear up, and a dip test showed nothing. Sex hurt – but then, I avoided it, just in case I had something infectious.

My GP noticed that the pelvic pain was mainly on the right side, and postulated appendicitis – but ruled it out thanks to a lack of fever. We were both baffled, and it was at around this point that I started to read up on Essure. The doctor had referred me for a pelvic ultrasound scan, but the referral could take months to come through.

Having done a bit of reading, and found the Facebook groups, I grew worried. I decided that rather than wait, I would pay to have a scan done privately. I went to a clinic in Exeter – it cost about £100. The Essure implants showed clearly on the screen and the nurse asked  “what the hell are they?”. I explained that they were blocking my fallopian tubes, that they were a new kind of sterilisation. She looked worried. “No way are those in your tubes,” she said.

 

Well, now I was really scared. I drove straight back home and to my GP, and handed in the scan photos with a request for an urgent referral to a gynaecologist.

Again, after consideration, I realised referral would take weeks, and I was worried that if these things weren’t in my tubes, that would be an infection risk. I’d had time off work thanks to the pain, and I would often spend evenings after work kneeling in front of the sofa, head in the pillows, crying from pain. I needed to get this sorted out, fast.

So, I paid to see a consultant privately, a man a colleague had recommended. He was pragmatic – he had heard of Essure, and of the bad press surrounding it, but was inclined to believe that it was all blown out of proportion. So I asked him what else would cause this level of pain, and did he see anything on the scans that would do it? He said no, the scans were in his view normal, and that the nurse at the ultrasound clinic had merely misinterpreted them because she was unfamiliar with Essure. Well, if the scans were clear, what was causing the pain? He said it could be endometriosis, but that the treatment would be the same – hysterectomy was the simplest option and he’d put me on his NHS list.

That was what I wanted. I asked if he could assure me that the implants would be removed intact, and retained. He said that although the laparoscopic hysterectomy he planned used a morcellator (basically, a tool for grinding up lumps so they come out easily!), he used it inside a bag, so there was no danger of debris being carried elsewhere into the cavity. He also promised that the camera would spot the devices first and he would remove them before the morcellator chewed them up anyway.

 In spring 2016 I had a laparoscopic hysterectomy at Exeter. The surgery went well – the surgeon said nothing seemed amiss at all, inside – and I healed fine apart from an infection in the largest wound, which took a little longer to heal as a consequence. I would be off work for 8 weeks – in the end I worked at home for the last four. I was lucky; my employers were not only understanding, but horrified. I offered to take the leave unpaid and they refused.

When I felt better, I started considering legal action. I had undergone major surgery, when all I wanted was to be sterilised! I went to one of the two firms who were handling Essure cases. They believed initially that I had a case. However they changed their minds after commissioning a report by another gynaecologist, who, working off only my medical notes, said that he believed that even if the risks had been properly explained to me, I would still have gone ahead with Essure.

That, to me, is insulting. He said that there could have been a case to answer for medical negligence, as there had been no counselling as promised, and the implanting hospital had used the wrong consent form. No mention was made about what they had said about the materials used in Essure – I suppose that’s my word against theirs. The report said that if I hadn’t been “unduly alarmed” my the nurse at the scan, I would probably not have blamed Essure – and that my pain was most likely due to the cessation of hormonal contraception. I found that disappointing – I’ve never had anything worse than mild period cramps. Incidentally – one implant was removed intact and disposed of, contrary to my wishes. The other was indeed morcellated.

But for a doctor who has never met me, to make the decision that even if I had been better informed, I would have taken an identical decision? I find that incomprehensible. I’ve given up on legal action now, so I am dedicating myself to raising awareness instead. I know that compared to some ladies, I’ve had an easy time of it, so I consider myself very lucky in that things could have been far, far worse.