learning the hard way

THE GIST OF IT

In 2007, after my third high risk pregnancy, I had the Essure device implanted. Essure was touted as really safe, very easy, FDA APPROVED and sounded like our best option for permanent birth control. My logic was that I could no longer have children so I was okay with this safe, relatively simple procedure.

First problem is that the procedure to implant the coils did not go well.

The doctor perforated the uterus with her scope. Guidelines from the manufacturer say to end the procedure immediately if this happens. She did not.

From op notes, she had difficulty with visibility. She successfully got the first coil in the right Fallopian tube.

She had difficulty placing the second coil in my left Fallopian tube, having to try two times. It’s very important that this is done cautiously and not continuing if too much force is required. It is most likely that she struggled with this and the likeliest scenario is that she caused either a perforation in the Fallopian tube or the coil never was positioned properly. It migrated out of not only the tube, but out of my uterus entirely.

I had a lot of pain after the procedure and called the doctor about this but we didn’t have a follow up until I had a post procedure test called an HSG 3 months later.

The HSG showed that the tubes were both scarred up but the left coil was not in the Fallopian tube.

The guidelines states that if a coil has migrated, it is to be removed immediately as it could cause a perforation or damage to other organs. My doctor did not do this. She was satisfied that the tubes were scarred up and left the migrated coil in my body.

When I look back through my google calendar — and I got really tired at the 8 year mark — I had columns that took up three pages (for two years I had two columns, my doc appointments and my mom’s), they all began shortly after Essure was implanted. My mom had cancer and was living with us, in our care, we had three young kids, Andre starting his career and working all the time, that I didn’t have any clue that this could at all be connected to Essure.

Fast forward . . . Essure has been removed from the market. We were the last country to remove it.

Netflix did a documentary on Essure, The Bleeding Edge, that revealed that thousands of women were having horrible reactions to the Essure device. A Facebook page support group has been formed that has over 42,000 women that are having the same laundry list of symptoms that began after having Essure implanted. These symptoms, for many women, seemed impossible to have been caused by the device so for years women went to endless doctor appointments that ended with frustration — no definitive answer for why they were experiencing the following issues (here are just a few):

Uterine pain, back pain, neck pain, hip pain, swollen joints, bloating, unexplained itching, hair loss, diminished vision and hearing, tinnitus, weight gain, autoimmune issues, tingling in hands in feet, IBS, fatigue, etc. The list is incredibly long — these are just a few. It was too coincidental that all of these women ranging in age from 20 - 40+, after having this device implanted, all were experiencing the same symptoms.

The documentary shed light on the fact that the Essure device had a very quick approval process. For an elective device for women that was in its design created to never be taken out, there were scant trials done and it was rushed through the FDA process and given a preemptive status (meaning patients couldn’t sue if this caused problems down the road). The approval hearing was wrought with questions (what if there are allergic reactions was one of them) that were left unanswered, with the final statement regarding these inquiries by the panel being, “Well, we’ll see in ten years.”

The problem:

Essure is made with nickel, (Nickel allergies are very hereditary — my mom had one, Ella has one and I’m pretty sure I do too — had a piercing that was infected forever) a very common allergen, especially to women. It is also made with PET (synthetic fibers) that creates the inflammation in the Fallopian tubes. It turns out both of these materials have caused systemic inflammation, setting off the autoimmune system to be in a constant battle within a woman’s body — thus all of the similar symptoms listed about.

Women who have made the connection and are informed on the Essure issues (and experiencing them), women like me who have spent years not feeling well, in chronic pain, trying dozens of medications and therapies for relief, are having the devices removed.

The best case scenario is when the coils are still in the Fallopian tubes and a hysterectomy can be done — making sure not to fracture the device and getting all of the PET fibers out.

My situation is complicated because the coil that migrated, in imaging, is now outside the uterus, and is located adjacent to my rectum. We are hoping that it has not become embedded in the colon and the biggest concern is removal that gets all of the PET fibers. I will need surgery with both an ob/gyn for a full hysterectomy and also a general or colorectal surgeon to remove the other coil. This is a new problem and there are not a lot of surgeons familiar with the removal of this device. Some women have had to have 4 or 5 surgeries because the device fractured or the PET fibers were left behind.