Essure: My journey so far!
Well my story begins back in 2012 after I had my last baby. I suffered so bad from post-natal depression that I was advised never to consider pregnancy again. I tend to suffer from low moods and having my last two babies one after the other really exasperated it. The pros wouldn’t outweigh the cons so to speak, it was simply too risky for me to have another as I had gotten to the point where even ending it all seemed possible. As a guaranteed safety net, my doctor suggested that I should think about having my tubes tied and at the age of 34 I had no problem agreeing as I was contented in the belief that I had all the beautiful children I wished to have.
Taking this into consideration my doctor referred me to one of the top Gynaecologists here in my home town in the West of the Republic of Ireland. When we met in 2012-13 to discuss tubal ligation he told me about the Essure procedure. It was explained to me that it was two titanium coils that would be fitted into each tube etc… I was not clearly informed of the fact that it had a Nickel alloy component and additionally I since believe that this information had been removed from the outer packaging of the product by the manufacturers in 2011; packaging which I did not see anyway as the doctor provided it on the day of surgery. During the consultation or prior to the procedure I was asked about allergies but under medical circumstances when you’re asked about allergies you presume they mean medicines, well I presumed so anyway.
However, when I was younger I could never wear jewellery etc that contained nickel or I would rash and blister, but considering the setting I was in this never once crossed my mind. I can’t say for sure I have a Nickel allergy, but I know if they had openly asked me about Nickel I would have told them what I did know. Furthermore, I don’t see why it should have entered my mind as, at the end of the day, I was told during the initial consultation that the coils were titanium. The doctor really sold me the product as he was explaining how much safer (ha!) and more effective it was than the traditional method. Furthermore, they idea of not having to go through an actual open surgery when I had three kids to look after and a job to go too enticed me even more. I was informed that I and a few other women would be the first to partake in the procedure in our local hospital. I truly had no problem with being one of the first as I had full respect for the professionals and their knowledge of the procedure thanks to their reassurances.
On the 13th May 2013 I went to have my Essure procedure done. After the initial consultation and acceptance of the procedure we were given the option to have a local or general anaesthetic and with the knowledge of it being a new procedure here in Ireland I thought, knock me out please. On the day the surgery was delayed by several hours as the reps from Dublin city had forgotten some of the instruments and had to travel almost a 3 hours drive up and down to collect them. Maybe that was my sign to go home but I desperately wanted to have the procedure over and done with and not have the fear of ever falling pregnant and going to hell and back with the PND. After the procedure I vaguely remember as I was coming out of the anaesthetic one of the nurses telling the other that I needed to be watched. This I wanted to query at a later stage but fact is, we put our faith in the hands of the professionals and way too often we don’t question or doubt their abilities and while they may make you comfortable and feel secure, it can also be an intimidating setting where you don’t wish to be seen as questioning their work or the procedures they carry out.
I think it would also be fair and true to say that I was in so much pain that questioning them wasn’t my top priority as I couldn’t think straight initially. For a few weeks after the procedure as my friends or husband would testify, I was in and out of crippling pain daily and the most severe headaches began. It felt like the pain was already taking over my life, I was exhausted daily whether I slept or not didn’t seem to make a difference. Years prior and for a week after my second child I had suffered what the doctors thought were cluster migraines, so each time I went to a doctor I said to them that even though it by and large had been years, that it must be them as they were often insufferable. Fact is, I had been hospitalised once years prior with migraines and yet, these headaches seemed so much worse, different even. They’d often get so bad my eye would swell with them to the point where on occasion I would be unable to open it or I attended a doctor or the ER once or twice for pain injections.
In addition to these aliments I slowly found myself suffering from more and more ailments, those which I couldn’t truly say I would have been prone to suffer from previously. For instance, prior to the Essure procedure I had spent a year trying to gain some weight as due to the severity of my post natal depression and the stress of it I lost several stone. Nothing I did and no amount of food made a difference, I just couldn’t gain an oz, to the point where I was sent to the hospital for tests and kidney scans etc to see was something causing the weight loss. But stress was simply the answer. Strangely however, almost immediately after having Essure implanted I began to gain weight. By the time I had my 3 month check up I had gained approximately 1 stone and all my clothes were gone up a size or two. I was bloated one minute and looked pregnant and not the next. Just two days after the procedure I had an irresistible itch all over my body, things you would initially yourself not even reconcile with the procedure. Within a week or two of having the procedure I started having difficulty breathing, wheezing, coughing, tingling skin, itches everywhere but no sign of a rash. I thought the breathing difficulty may have been asthma and told the doctor the same, because when I was younger I was asthmatic but I hadn’t suffered like this in many years and I ended up having the on-call gp refer me to the hospital.
Then as time passed I started loosing hair (which thankfully has stopped), suffered at different points with weak limbs, sinus infections repeatedly, swollen glands numerous times, chronic headaches as I said that lasted for weeks on end, irregular and very heavy strange menstrual cycles. For example, I’m currently on my third period in 4 weeks. This past week or two alone, I found myself passing what can only be described as what appeared to be clumps of flesh. The bleeding would be bright red one day and alternate to almost black with what looked like grit in it the next. I’d pass clots of all sizes and often I’d experience a strange smell from them. I even ended up taking a pregnancy test last week as when my belly would swell it actually move, my belly button was popping in and out as my husband and I stood there looking at it with horror. It was so like when I was pregnant and my babies would move around, I actually made a video of it to show my gyn as I said to my husband, he’d probably never believe me. My periods could go on like this for what felt like forever and then they’d settle back into a normal pattern for a while. Then came the bruising, the slightest bang and I’d bruise, funny thing was, you’d nearly have to beat me with a wooden stick before the Essure procedure to make me bruise, I just rarely ever did. Even this I took pictures of, I realised that in time if I was ever to pluck up the courage to speak out that I should have something to show them, you can’t show the internal physical or physiological pain we suffer but I knew I could at least show examples of some of the external ailments, like the bruising and swelling.
Often, I’d walk around daily or lay in bed at night and all I could hear was my heart pounding, it was like a clock in a silent room, and you just couldn’t get it out of your head once you heard it. I went to the doctor at one point to ask him to check it because I really was beginning to think that some day I wouldn’t wake up. I was at the point where I had myself convinced that I would have a heart attack, that slowly I was on my way out. He did and ECG and noted sinus tachycardia, speeds and slows, mild murmur, seems flow related he wrote in the notes. For weeks at a time I’d literally become an insomniac and since the Essure procedure I suffer from anaemia on and off and fairly regularly have to give in and get Cosmofer infusions (iron drip) administered at my gp’s office. This is a completely new occurrence to me outside of pregnancies. Recent blood tests showed my ferritin levels are low, my thyroid medication which I had been on for almost 8 years needed to be doubled a while back, my cholesterol became high which it never had been prior to Essure, I was more and more exhausted, bloated, suffered lower abdominal and back pain, often to the point where I’d lay on my bed and cry. Because whether I stood up, lay down, sat down, bent over, it just didn’t matter, I couldn’t kill the pain. Shortly after the procedure I started suffering with tinnitus where my ears wouldn’t stop ringing, strange things would float around in my vision yet when I’d get an eye tested nothing would show up, my vision apart from the floaters was fine.
In addition to all of this, since I had the Essure done 2.5 years ago it wouldn’t take much more than two hands to count the amount of times I’ve been intimate with my husband, as I started suffering with Coital pains and Dyspareunia. It got to the point where it just wasn’t worth it as the pain would be immediate, felt like it was deep in the lower abdomen, like somebody was twisting my inner parts or trying to rip them out. It would last for 2-3 days afterwards and I just couldn’t take it. Additionally I started getting dizzy spells, even what felt like vertigo, I’d be standing there and something would move towards or away from me and it wouldn’t be till I’d jump out of my skin with fright and people would look at me that I’d realise nothing had moved. But I’d have this awful feeling of movement, floating almost. Later I began fainting on and off to the point where while minding my two youngest (3 and 4 year old) at home alone, I fainted, bashed my head and split it open requiring stitches and a visit to the doctor. Who upon examination and bloods at the time couldn’t find an explanation for it.
I was so upset due to the fainting, as when I came around and looked at my phone to see what time I had messaged my friend at (as that was last thing I remembered) and compared it to the current time, I realised I was knocked out for up on 40 minutes. The guilt was overpowering as I just kept thinking, what if something had happened one of my kiddies. I felt and often did and still do really, like a failure to my kiddies, always tired, irritated or anxious and I was beginning to feel like my body was falling to pieces. Every month that passed seemed to bring about another illness or symptom. Ones that I’d never really suffered from prior to the Essure implantation, yet on many occasions I was afraid to mention it to my doctor. I felt like I should start paying rent to have a seat in his waiting room as I was going in and out so much, yet I wasn’t going in half enough. I wasn’t able to constantly tell him that I’m suffering from this, and this and this, I thought the man would think I’d lost my mind. I couldn’t bring myself to ask him if Essure was at fault, as I’d done this in the early days and been dismissed. I’d indirectly and believe un-intentionally been made feel like a fool for even thinking of asking such a question. Because as far as my doctor was concerned at the time, ‘Essure appeared to be a great procedure and alternative for women’! Irony is, now that I’ve finally plucked up the courage to say enough is enough and tell him everything I’ve been suffering from, he actually told me that he doesn’t think he has even one single patient outside of myself that had the Essure procedure done. Originally and for the last 2 years since my 3 month check up I learnt very quickly to ‘put up and shut up’, after all, I was the medically uneducated one.
At one point back in early 2014 I think it was, I was so bad and felt so helpless and in a desperate attempt to find out what was wrong with me I chose to foolishly stop my lifelong medications. I knew in my heart it wasn’t the problem, it never had been, but I was so desperate and so close mentally to the end that against everything I believe in I even gave up on the medications that help get me through life physiologically. Even though I struggled through my pregnancies, especially my last one, when I had to reduce my daily medications for my baby’s sake, stopping them for the one and only time ever seemed worth the risk. I couldn’t prove to anyone else that everything that was happening to me was because of the Essure, but in order to get through it and keep the fight up I needed to prove it to myself. I struggled through a few months without them and physically nothing changed, mentally I deteriorated even more and I had to restart my medication. I stupidly and dangerously never even told my gp or husband that I had stopped until I was ready to restart and until my gp realised I hadn’t been collecting my prescriptions. I didn’t tell my gp because then I would have had to have the same awkward attempt at a conversation about Essure being the problem. I already felt stupid and inferior from prior dismissals, I didn’t want it again. But it was just further proof for my own personal sanity that all that there was to blame and is to blame, is and was Essure. Essure was the only thing in my life I had changed when everything started going wrong physically. You begin to feel so unwell both physically and mentally as it’s one symptom after another that you even begin to doubt yourself, you begin to question your own sanity. But when up on 30,000 women have gradually come together over the years arguing and putting forward the same or similar symptoms and all resulting from the time the received their procedure, that becomes the time to rebuild your self belief and confirm for yourself what you (I) knew from the beginning.
We often tired to make a laugh of it, my husband and I, he’d tell me regularly that ‘I had become an old crock’! Sad thing is, he wasn’t wrong, I felt like I had aged 20 years. I was struggling and still am to find what’s right with me rather than what’s wrong with me. But last week I’d had enough, exhausted, felt like the life was being drained out of me, so tired of bleeding, headaches, abdominal and back pain, that was it, I decided I was contacting my gyn and my doctor. I didn’t really care if they believed me or not, I just wanted them to fix me, to take these horrible things out of my body and stop it all. As I know in my heart of all hearts it’s the Essure. It all began from when I got it and I want it all to end with getting rid of them. I had originally tried to quiz my gyn at the 3 month check up about my symptoms, I mentioned one or two, mentioned the headaches and the weight gain, but he told me that in fairness, when putting in the Essure he didn’t inject calories. By god did I feel foolish, ignorant even. I was actually embarrassed as I thought this doctor is going to think I’m crazy. So as I said, ‘I shut up and put up’, but not anymore. He did a quick Ultrasound (even though I must admit I was expecting the confirmation test to be done using dye and an x-ray) and said that the tubes were blocked.
I decided finally, I give up or I fight. I have three beautiful children, a husband, family and friends all worth fighting for. So I went on a search, I found my gyn’s professional Facebook page and afterwards his email address and I sent him a message stating the facts, the truth, that this thing inside me was causing just way too many problems and I had to be fixed. In fairness to him, he did send me a very nice apologetic reply and he’s since given me an appointment for this coming Tuesday. An appointment which I pray will lead to the end of my misery and the removal of this device. I am at the end of the day only 37 years old, I’ve three beautiful children whom I can’t always enjoy because of exhaustion and illnesses or just feeling all round miserable, I got the procedure done to ensure I’d never go through hell again and to ensure I’d be safe from pregnancy and the PND effects as I wanted to be a good mum and wife. This has sadly been a very difficult task for me to see through since I’ve had the Essure procedure done as generally I just don’t feel like me, I feel like ‘an old crock’, one who was on many occasions ready to give up.
But not now, now I’m taking control of my own health, I’m not going to hide away in constant silence, I’m going to tell my gyn and I’ve already told my gp this week the hell I have been through and am going through, all thanks I truly believe is due to the Essure (the only this it ‘essure’s is misery and pain). The sooner Bayer gives up and removes the product from the market the better. If it were a faulty part of a car, it certainly wouldn’t take the better part of 30,000 customers to complain to have it recalled from the market. Yet we as women are crying out for help, all 30,000 and lord knows how many more, for how many years trying to be heard. It’s a genuine disgrace, a wrong done to women, wives, mothers, daughters of this world. Bayer should be ashamed and so should the FDA for so easily allowing such a device onto the market without proper and appropriate testing. I hope whoever reads this, understands the pains we Essure women are and have gone through, and that for those of you who may have considered having the procedure that you think again about it. Take it from all of us Essure women, it is so not worth it!
Strangely enough, I have looked for the essure.ie website since for information here in Ireland, but it seems to have vanished. Subsequently, I did notice 4 minutes after my gyn saw my private Facebook message that he went back to the original post advertising Essure as now available in Ireland (day before or after my procedure) and posted this “Update: Bayer; the company supplying Essure has decided to withdraw this product from the market in the Republic of Ireland; Essure is still available in Northern Ireland and UK” in the comment box underneath it. Why it was withdrawn and why the comment only went up after my messages of complaint about the product, I would be eager to know and understand. I am at the same time delighted to know that it is off the Irish market and hope that it is taken off the market worldwide.