This week, I will turn 46 years old. I started my family late in life. My first daughter was born when I was 35 and my second when I was 37. I considered my daughters to be truly miraculous (still do) as I had had several miscarriages prior. After I had my second daughter, I had one last miscarriage. I had also been having worsening periods. My doctor suggested a uterine ablation and I proceeded to have one. Since I had previously gotten pregnant while taking the pill and I have a latex allergy, my options for birth control were limited. Before the ablation, not becoming pregnant was convenient for various times in my life;now, it was essential. My doctor suggested the Essure implants. My husband and I discussed the information that we had been given and agreed that we did not want to expand our family further, nor did I want surgery, especially when such a simple and safe procedure was available.
I had the Essure device implanted in 2009. The procedure was done without issue. Actually, I was fascinated watching the coils being deployed. After the procedure was done, as I dressed, my doctor went out to the waiting area to speak with my husband and to give him the device card to hold onto for me. As my husband looked at the ID card, he noticed a warning that nickel was a component of the coils. He quickly called my doctor back and pointed this out stating ‘Robin has a nickel allergy. What does this mean for her?’. The entire office went into panic mode. I thought I was going to have to go from patient mode into nurse mode….my doctor did not look well. He was clearly distressed, as was the office nurse. Calls were being placed urgently to the manufacturer and to the hospital where both I and my doctor worked. The OR was notified that I may be brought in for an emergency hysterectomy. I literally stood there and laughed…it is ‘the nurse’s curse’ aka Murphy’s Law…if you are a nurse, chances are high that something will go sideways when you are the patient. After a very tense hour, a call was received from an allergist that informed us all that the typical reaction would be for scar tissue growth to occur more rapidly. Since this was the desired effect all appeared well. Three months later my HSG was done and proper placement and occlusion were confirmed. A happy ending in our minds.
Over the years, my health has steadily declined. I had been diagnosed with Fibromyalgia years before. It appeared that I was advancing in symptoms more rapidly than before with frequent exacerbation. My once beautiful and full hair was falling out in clumps. I was diagnosed with polycystic ovarian syndrome. I was placed on metformin for the PCOS and spirinolactone for the hair loss. As the pain and fatigue worsened and I became more depressed, antidepressants were added. I had been down this path before- post partum depression and a history of previous depression made this just another bump in the road. Over the years other medical issues cropped up with symptoms waxing and waning- multiple skin rashes so severe that I tore at my skin in my sleep. Short term steroids, antihistamines and topical steroids were prescribed. My migraines, sporadic before, were occurring more frequently and more severely. I began experiencing more complex migraines- once severe enough that I was brought to the emergency room where they treated me for what they thought was a stroke due to the neurological changes seen. I spent the day there where I underwent multiple tests, while my husband cared at home for our two young daughters. More trips to the ER happened over the years with abdominal, chest and pelvic pain that were all never clearly defined….always ‘unknown origin’ and follow up with your primary provider. As time passed, I would have flare ups and then periods of near ‘normalcy’- always tired and sore, often in a mental fog and needing much more assistance from my husband with the kids and the household. We were no longer spouses; we cohabitation and co-parented. Our marriage took an enormous blow. And always….it must just be worsening Fibromyalgia.
Recently, after experiencing the most awful lower back pain that wrapped around my pelvis and abdomen and requiring me to leave work early, I came home and cried to my husband. Although we have managed to work through the rougher times in our marriage, I was just so overwhelmed. I am overweight with a huge belly….I have been overweight before, but regardless of what my weight, this belly was ridiculous. It hangs over my pelvis and is a source of embarrassment. My skin on my arms, legs and abdomen were in various forms of healing from the constant scratching and the ever present rash. I was tired, as usual. And despite all of that, I continued to push forward. But this pain was putting me far past my tolerance for BS. And I did not want to go back to the ER for yet another pointless visit. It was an embarrassment both personally and professionally. I am still convinced that the only reason I am (barely) tolerated for those visits is that I refuse pain medication and I do not seek medications, merely answers. It has been a point of pride that they may label me as a hypochondriac, but they cannot label me as drug seeking.
Fast forward to this past weekend. My period was awful. Is THAT what all of the pain had been about??? Enough! It had been suggested to me nearly 1 1/2 years before that I may eventually need a repeat uterine ablation. It appeared that I had little choice left and I decided to begin researching if there were any known issues for women with Essure having an ablation. I knew that the coils extended into my uterus….. 4 struts on one side and 6 on the other.
And I found this page…..and the Facebook support page. I was in shock. Hundreds, no, thousands of women all experiencing the same issues that I had been enduring for the past several years. And there were many that had been completely healthy before the Essure procedure….still experiencing the same symptoms. And all experiencing the same ostracizing when seeking answers. I felt simultaneously relieved, happy, angry and hurt. The company had been notified on the day of my procedure that there was an issue. My doctor that did the implant certainly hasn’t forgotten that day. I have seen him since, both as a patient and in the hallways of the hospital where I work….and yet I have never been asked if I was having any issues. Why hasn’t anyone followed up with me? I know medical databases. I assist on implants of cardiac medical devices and the record keeping for them is very detailed. If there is ever an issue, I can quickly access a database containing patient information on which patients had that product implanted. Why had no one reached out to me???
The answer is as simple as it is sad….we aren’t ‘statistically significant’. Even IF (and aren’t they being gracious in believing we might be telling the truth about our maladies!)…..even IF all of the women here and in the various support groups are experiencing the myriad symptoms and disorders as we are reporting…..we represent less than 2% of all of the women that have undergone the Essure device implant. Therefore…. We simply do not matter. Not in the eyes of the manufacturer of this device- we are a nuisance. Not to the physicians that continue to provide the device as a safe and effective form of birth control- we are the ‘problem patients’…the crazy ones causing fear amongst other women.
Statistics such as this….are the most damaging to patients. It is fine if you are not counted amongst the statistically insignificant. Actually, as a nurse, I am very happy for you!
But if you are one of that 2%….which, in actual terms, number in the thousands….your life no longer resembles anything that it had before. Every aspect of your being….physical, psychological, socioeconomic, and even spiritual….have all been grievously impacted. And the long term effects are unknown and will probably remain so for a very long time. If we can’t get the medical community to admit that there is an issue, how are we going to get anyone to conduct research??
So, I will add my voice to the chorus of the others here. And I will strongly caution any woman to rigorously research all available options other than this device and this procedure before deciding on birth control or sterilization. If that woman is a friend or a loved one? I will speak in much more assertive tones. Because it may work out fine….you may be fortunate enough to reside firmly in the majority. But then again….you may be posting your own story here.
God bless all of my E-sisters….may our voices be heard…and may they that make such decisions on safety and patient advocacy actually listen to us.