Today I want to share something a bit different with you. This is my story of having Essure sterilisation, it’s rather long but as anyone who has suffered through essure will tell you, the whole story needs to be told…
In April 2008 I saw my GP to request sterilisation after 14 years on Depo Provera with weight gain and loss of libido. I was concerned about the long-term use of the injection and wanted a permanent solution. At the age of 32 my family was complete, and my husband on chemotherapy for a brain tumour he had suffered with for 10 years.
In May 2008 I was seen at Birmingham Women’s Hospital and options were discussed. I chose essure because they assured me it was a quick, relatively painless procedure, and would not require general anaesthesia, which I feared having.
On 31st July 2008 I went in to the day ward for my procedure. I was due to be one of the first in that morning and was told I would be home by the afternoon. I was given local anaesthesia for the procedure to be performed and as soon as they began I was in agony, I was given gas and air as I screamed. Then I threw up and passed out from the pain. When I came to they finished the procedure despite me still screaming and crying in pain. I was given morphine for the pain it was so bad and had to be taken back to the ward in a wheelchair. The morphine knocked me out for a while, but it also made me violently sick and every time I woke up I was doubled in agony again, threw up and had to have more pain relief. I spent the whole day on the ward, I just wanted to go home. The doctor came to see me and explained that as the procedure had not gone well he would get me back for a HSG (hysterosalpingogram) confirmation test to ensure the coils were located enough to provide tubal blockage, he said that as they had completed over 1000 successful implants they no longer did this test unless there was a problem because they knew that essure was successful in usual circumstances, which as mine was not one of those I would need to test to check. At one point, I got up to say I was ready to go home, but collapsed and threw up again so they wouldn’t let me go. Much later in the evening after some pain relief I managed to hold my nausea enough to leave, but instantly threw up once I was outside. Family gave me a lift home as I didn’t drive at this time. I spent the next week in bed in pain.
The implanting doctor wrote to my GP stating that I had “…found the procedure very painful due to the atrophic changes that were extensive. She even found the local anaesthesia partially affected. As a result, she had a partial insertion of her left essure device with 11 coils trailing on that side with 6 coils on the right side. The right side was within normal working parameters by the left side is not completely effective. However, I have made arrangements for a hysterosalpingogram to be done in 3 months to assess if the fallopian tube is truly blocked…”
While waiting for the HSG I had very heavy, very long periods, after 14 years with nothing due to depo this was extremely depressing. Friends and family had also started commenting that I was like a different person, my behaviour had altered beyond being depressed, I was having erratic mood swings and even started drinking, which as a tee-totaller since for many years was not like me at all.
In October 2008 I went for the HSG, they attempted to perform the test without local anaesthesia and I fainted. They said they could not risk attempting further as they were not equipped for needing to admit someone and it was clear they could not perform the test on me without local anaesthesia. They wrote to my GP to say they would get me back to try again with local anaesthesia.
In February 2009 I was seen in the gynaecology clinic, still not having had the HSG and was advised on alternative methods of contraception, such as Copper IUD or Mirena IUD until this had been done. I was unhappy and went to see my GP two days later, I did not wish to have anything else put in me as I was still having a lot of discomfort and heavy bleeding. I explained that I was worried that the essure was causing my problems, I wanted to know where it was, and that given the local anaesthesia had not helped during the implantation it might not work for the HSG. I asked if the essure could be removed. The GP called the consultant and he said essure could not be removed and they would administer extra local anaesthesia prior to the HSG.
My sex drive went through the roof, after years of no interest whatsoever I was wanting sex all the time, but my husband was unable to perform due to his chemotherapy and this just made me feel even worse about myself, him and life in general. On the plus side, I had lost 3 stone in weight in less than 6 months, going down from 11 stone before the procedure to just 8 stone.
In April 2009, my GP made a referral for mental health issues, over the past few months’ depression had gradually gotten worse. I had been self-harming and attempted suicide on several occasions. I explained to the GP that I felt my husband hated me and if he didn’t have his brain tumour I would leave him, I also felt that if I was given antidepressants I would take them all to overdose.
I finally had the HSG in May 2009 and was told that the essure had been successful in blocking my tubes, not that I cared any more, I really wanted them gone because of the pain but having been told this was not an option I just put up with it, it had been suggested it should be getting better by now.
In September 2009, my husband died of his brain tumour.
In March 2010 I went to see my GP after having been kept awake all night with pain in my left leg. It started with a sharp, stabbing pain in my groin whilst I was just sat watching TV, then I could feel cold, like ice running through my blood going down my leg. The pain was worse on the outside of my thigh and continued through the next day. GP found no lumps or swelling and I had sustained no trauma. It was noted ‘query Meralgia paresthetica’ a condition characterized by tingling, numbness and burning pain in your outer thigh when lateral femoral cutaneous nerve in one of your legs is being compressed.
By May 2010 the mental health issues had gotten worse, my new partner had been cheating on me, and I on him. There had been several more suicide attempts and self-harm was a daily coping mechanism I no longer cared to hide. I underwent several months of psychotherapy assessment and in October 2010 I received a copy of the letter that had gone to my GP with the outcome of my mental health assessments and diagnosis of Borderline Personality Disorder. I would never have linked this to essure if it was not for several years later finding other women with essure who had been through the same changes in their personality and mental health resulting in the same diagnosis following the implantation of essure, with only mild or no previous mental health issues, I had previously had a few episodes of depression and mental health issues but nothing like as bad as since having essure. Whether essure caused this or not, it was definitely a contributing factor in my opinion.
In January 2011 I attended A&E with severe right side pain, but they could not find any cause. By this time my periods had settled into a somewhat regular pattern. I would have my menstrual cycle every 3-4 weeks, usually closer to 3 weeks which would be very heavy, lasting 4 days and with a lot of abdominal pain, but as this was now my ‘normal’ I accepted it. I was also suffering severe fatigue, such that I was unable to drive (having passed my test in August 2008) for more than 30 minutes without needing to stop and have a sleep break and I would need to have a nap at least once a day even when I was not working.
By 2013 my right side back pain was much worse and my GP suspected kidney stones. I was sent for a CT and ultrasound, both of which came back normal. So, I just learnt to live with the constant pain and fatigue because no explanation could be found for either.
During this time, I also had 3 Cervical cancer scares, with removal of pre-cancerous cells.
By 2016 I had gained weight, almost back to the 11 stone I was prior to essure, and my gynae problems and kidney pain increased to the point I had to go back to the doctor and insist on a referral to both the gynae team and kidney doctors. First, I was sent for an ultrasound which revealed that my right kidney was hydronephrotic to the point of being non-functioning. A hysteroscopy showed that there was no evidence of any endometriosis or other issues with my womb that would require the ablation they were insisting I had. It did however show that my essure devices had moved deeper into my fallopian tubes, with only the gold end of the right device just visible, and few coils trailing into the uterus on the left side.
At this time in want of an explanation for my gynae problems, that I was clearly not getting from the hospital or GP, I turned to Google, and for the first time the possibility of a connection with essure was bought to my attention as I searched for my symptoms and came across Erin Brockovich’s US website on the issue. I took this information to my GP, who had never even heard of essure and suggested I take it to the gynae doctor at my next appointment. That doctor practically laughed it off, but said she had no knowledge or experience of essure personally, but her colleague implants it, so she would discuss with them, but she was certain there was no way essure could be causing my gynae issues. I joined several Facebook support groups for women with essure and was horrified by the stories being shared on there, so many of which mirrored my own experiences.
I then went for a CT scan to investigate further the problem with my kidney and then saw a Urologist. The urologist said the kidney problem was congenital, and I argued how could this be so when my kidney was fine 3 years earlier, he made me wait whilst he obtained those CT scans as they had been done at a different hospital, and when I went back in he agreed it was unlikely that it was congenital having reviewed the previous scan. I raised the possibility of essure having anything to do with it, being unsure how close the fallopian tube is to the ureter that was blocked and had caused my kidney to become hydronephrotic. I explained about essure and my knowledge of the fact the devices had been known to migrate and penetrate the fallopian tubes etc. He knew the doctor who had implanted mine in so decided to discuss with him, and I was referred to him to continue my gynae care as I had by now decided I just wanted everything out of me.
In September 2017 I had a full hysterectomy with bilateral salpingectomy to remove the essure, and my right kidney removed, in a single operation. I’ve not seen the reports but apparently the pathology was good, and the doctors both reverted to the original opinion that essure was not the cause of my problems, stating the kidney problem was congenital and my gynae issues were just ‘one of those things’ no known cause. I still don’t believe this because since having this operation I have no pain, not only the gynae and kidney pain but also joint and muscular pain is gone, along with all my other problems, including things such as – itching, hair loss in clumps, bloated abdomen, fatigue, brain fog, and my sense of taste improved. I just feel alive again, my weight is coming back down (now 10 stone 6 months post op, so 1 stone lost) I feel fitter, healthier and happier than I have since before having essure fitted. I doubt I could ever fully prove that essure is to blame for my 9 years of hell, but as far as I am concerned it ruined my life from the moment they put it in me and I believe that every medical problem I have mentioned here was caused or at least contributed to by essure. I’m just glad I have made it out the other side and that this device can no longer be put in any other women here in the UK!
I have no legal recourse for what has happened to me, but many women are fighting to take legal action over what they have been through and one day, hopefully, Bayer will pay for the damage they have caused to so many women.
Are you affected by essure? Do you have a story you would like to share on my blog? Please leave a comment and I will contact you to share your story.
Find out more:
UK Facebook group – https://www.facebook.com/groups/UKessuresupportgroup/
Worldwide Facebook group – https://www.facebook.com/groups/Essureproblems/
UK Website – https://essureproblems.co.uk/
Erin Brockovich Website – http://www.essureprocedure.net