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Leigh’s Story

At least 4 days a week I was bed bound. Each morning, I woke wishing I hadn’t.

I am a mother to three boys age 16, 14 and 8 years old – and I am a wife, daughter and sister.

I had always been healthy, fit and slight figured. Always very energetic and sporty, and always a good working carer, until Essure.

In 2012 I was taken into The Royal United Hospital A&E in  alot of pain – several days of pain. My pain threshold is extremely high and so I kept going for as long as I was able. I thought I may have something like appendicitis, but I was shocked to find that I was actually pregnant and had suffered a ruptured ectopic pregnancy (despite having no periods and having the Mirena coil). Emergency surgery was done immediately and I was told I was lucky to be alive. My right Fallopian tube had ruptured and so was removed in surgery. Several units of blood were infused.

Previous to this. I had suffered a late miscarriage, and our youngest son was born premature and was in Nicu (intensive care) for his first month. So the emotional side of this, losing another baby, was hard.

Immediately after my ectopic pregnancy, I was suffering al ot with abdominal pain and left side pain. A haemotoma was found so I was seeing my GP regularly. It was then that the GP mentioned about Essure. The GP had been on a conference, and thought it was the answer to all my prayers. I was so worried about getting pregnant again as I had already been told I was lucky to be alive. I could not risk another pregnancy. So I agreed to met with the specialist consultant involved.

Essure really did sound wonderful. “In and out same day”, “Just a possible 48 hours of period-like cramping” and then the test three months afterwards. I was told it was highly popular in Europe where European women wander around looking radiant! Best of all – no risk of further pregnancy.

In June 2013, I went into RUH for my Essure fitting. Bear in mind I was only due to have one Essure fitted as my right fallopian tube had already been removed.

On awaking from the procedure, my Gynaecology surgeon advised me that due to the risk of pregnancy and the fact my right tube was a just a stub, she had fitted two coils “to be safe”!

The first few days went as advised. The period-like cramps were there, but I felt emotionally great. I was told no risk of further pregnancies and I’d be right as rain within a few days.

The periods started and continued for months. I attended my three month check and was advised the Essure had worked successfully and my tube – or tubes! – were blocked. The bleeding and abdominal pains continued, but I was assured it can happen and would settle in time, and that the pain was probably scar tissue.

On one occasion I recall, as clear as day (location, time of day etc) the bleeding and pain was so bad whilst I was out, I had to get to the customer toilets as the bleeding was running through me.  I realised I was suffering a miscarriage and had to discard down the toilet. However, this could not possible! I had been sterilised and advised my (left) tube and (right) stub was blocked. So again, I suffered in silence!

It wasn’t long before I became a frequent caller to my GP’s surgery, very odd things were happening to me and I generally felt extremely unwell. My weight gain and breast enlargement was obvious to the eye, but the heavy bleeding, clotting and abdominal pain and joint pain weren’t so obvious.  I seemed to just have to suffer in silence! My legs started to hurt so much I was struggling to walk, my hands and feet were twitching and my head felt a muddle. I was forgetful, unable to concentrate and felt like I was dying a little more, day by day.

I had several visits back to the gynaecology department, and scans. Not one consultant raised serious alarm about the fitting of the coils; I was constantly advised,  “no clinical evidence any of these symptoms have anything to do with Essure.”

By this time, I was unable to properly function. I wasn’t able to swim with the children, play tennis with them, go walking… I had become someone I and my family didn’t recognise and I was in daily excruciating pain. The fatigue was so bad, I was falling asleep all the time and only actually being awake, 4-6 hours a day. At least 4 days a week I was bed bound. Each morning, I woke wishing I hadn’t, as the pain was so intense and I felt a burden to my family.

In September 2017, after spending almost half the year bed bound and seriously unwell, I contacted my GP to discuss a hysterectomy to get the coils out. This is the only way to get them safely removed without leaving splinters.  My GP referred me directly to the NHS “choose and book” system as the previous gynaecologist had already said the coils were unremovable, that my age was against me for a hysterectomy and again that there was “no clinical evidence”.

Due to unforeseen circumstances, the only consultant I was able to see was due to retire in three weeks – so being as desperate as I was, I borrowed £7k and had the surgery a week later. The operation took place at Circle, Bath.

Choose and book advised me that there was a wait of around 18 weeks to see anyone else, and the “anyone else” would have likely been my original Essure surgeon anyway.

Immediately the following morning, I awoke and noticed NO metal taste in my mouth – and also immediately I was able to recognise the difference between fatigue and tiredness!

It was a week later that I received a call from the Royal United Hospital, inviting me in the following day. With absolute devastation and shock, my husband and I were informed that during my hysterectomy,a fast-growing cancer was found.

Since October 2017 I have undergone chemotherapy and radiotherapy as well as Bracci therapy. I am currently awaiting my update as to where I am.

The cancer I had was started with the HPV virus. All my smears were up to date and were all clear. The HPV virus is caused by auto immune disease, which I truly believe was brought on by the positioning in my body of the Essure device and the chronic fatigue it caused.

Despite finding out that there is now a Black box warning stating side effects that I was reporting,  I have not heard from my original gynaecology surgeon nor her team.  I was made to feel that I was a hypochondriac and going mad. I have lost six years of my life – time I will never get back – and now face my unknown future with cancer.

I have also recently been made aware that the Essure medical manual guidelines stated: No Essure be fitted to patients with fallopian tube issues. I only had one tube, and Essure was inserted into the stub of the other! Not to mention a history of ectopic pregnancy.

My medical problems since Essure, all raised over the years with my GP and logged in my consultations and with my gynaecologist:

Abdominal pain – sharp stabbing abdominal pains
Heavy bleeding and clotting
Debilitating fatigue
Brain fog – memory loss, no concentration
Extreme weight gain. 8.5 stone to 11.6 stone
Excess breast enlargement to include sores: 34D to 36H
Muscel and joint pain
Heavy legs (unable to walk)
Teeth splitting
Ringing ears
Hair loss
itching skin
metal taste in mouth
hands and feet twitching
Problems with my sinusitis
Low mood. Worrying thoughts

My annual sickness at work has gone from 1 annual sick day a year to 2/3 sick days a month!