Six long months. Wow. I must say, it doesn’t feel like it has been that long but it sure has been an intense six months. Shortly after my last post of uncertain diagnoses, a plethora of pharmaceuticals, and a wavering sense of self-security, I had the random urge to google “Essure” and “lupus” together.
Doing so produced shocking results. I went through a couple dead-end results, but then stumbled upon a comment from a doctor in Newfoundland who was speculating on a group of women who experienced autoimmune symptoms (among many others) after having Essure implanted. This doctor denied any relationship, but Dr. Julio Novoa of Texas quickly shot him down. Dr. Novoa stated the following, which literally made my blood freeze:
The Essure device is designed to produce a chronic and PERMANENT inflammatory response. This response leads to a minimum extrusion rate of 4%. There is data to support the point that this chronic inflammatory response also becomes systemic in a significant number of women producing chronic symptoms similar to RA and Lupus.
I did a lot more research, and then stumbled upon the Essure Problems
page, which lists countless
symptoms. I was literally dumbfounded, staring blankly at my computer screen, blood frozen in my veins and goosebumps popping up on my skin. Every single symptom I was experiencing, from the development of a Vitamin D deficiency, to chronic and widespread pain, to debilitating fatigue, to the migraines… it all made sense.
But, it wasn’t that easy. There were two problems with my new discovery.
First, I didn’t know how to prove it. Unfortunately, the Essure product entered the FDA market with preemptive status, which means that they provided sufficient proof prior to approval and therefore they cannot be sued. Because of the FDA’s approval and therefore support, many doctors do not accept the relationship between the product and the symptoms. There’s enough evidence (17,000+ women in a group reporting these problems) to suggest a relationship, but there’s not enough evidence to support a causal relationship. Finding a doctor to even discuss removal was hard (luckily, the girls on this website have put together a nationwide listing of supportive doctors); my implanting doctor immediately dismissed any relationship when I called to make an appointment.
Second, removal posed a problem. This birth control works in an uncommon way. Essure coils
are inserted into the fallopian tubes, which produce the scarring response described previously by Dr. Novoa. Once scar tissue has formed and the tubes are blocked, pregnancy cannot (ideally) occur. The Essure coils and the tubes become one. Removing the fallopian tubes is obvious; but, the device also has PET fibers. Novoa described it best by comparing it to Velcro. If you attach Velcro to a piece of fabric, surely you can remove it later. But, fibers will always
remain in the Velcro. Because of this, I made the difficult decision to have a hysterectomy with bilateral salpingectomy. This means I had my entire uterus, cervix, and both tubes removed.
Making this decision, this big of a decision, was hard. There’s no way to really prove that causal relationship. There was also a couple possibilities with the Essure that I had to weigh:
- The Essure was mimicking autoimmune symptoms, and they would go away after removal.
- The Essure had nothing to do with the symptoms I was having. I just have an autoimmune disorder that has yet to be verified by blood work.
- The Essure served as the catalyst for an autoimmune disorder, and it won’t go away after removal. I’ll have to live with it for the rest of my life.
Making the decision to undergo surgery, take three weeks off work (which is all of my paid leave that I have saved up), miss my daughter’s first soccer practices of the season, and incur over $5,000 of debt in hospital bills was extremely difficult, but at the same time, easy. Even if there was no guarantee that I would be better overnight, I had to take that chance. I had to chance getting my life back, because I have completely lost it over the last year.
This was kind of the nitty-gritty about my journey with Essure, but I really want to take you on a deeper journey. This struggle has been way more than physical. I’m going to make this a multi-part post, and I promise I’ll post a follow-up within 2 or 3 days. 🙂