- Fertility & Reproductive Systems
One Woman's Painful Experience With Essure
What is Essure?
According to information found on the Essure website, “Essure is a surgery-free permanent birth control procedure that works with your body to create a natural barrier to prevent pregnancy.” Many women have made the choice to have Essure because it promises a quick recovery time (returning to their normal activities a few days after the procedure is completed), and no hospital stay.
The Essure device is actually two small coils that are inserted into a woman’s fallopian tubes during the surgery. This is done under ultrasound, and many patients are awake. Patients are advised to continue with an alternate method of birth control for three months. At the end of three months, a hysterosalpingogram (or HSG test) is done to ensure that enough scar tissue has formed around the coils to sufficiently block the tubes.
Since its release in 2002, many doctors have recommended Essure as an improved form of permanent birth control for women. Patients are warned that Essure should be considered permanent, as it will not be able to be removed once the coils are in place.
One patient took the advice of her doctor in the year 2004. Her name is Susan, and she decided that after having two children, and getting pregnant for both of them while on the pill, she was ready to be finished having kids. Her second pregnancy, in particular, was a difficult one, so when her doctor encouraged her to get Essure, she quickly agreed that it was the right choice for her.
Unlike many patients, Susan’s Essure coils were implanted while she was under general anesthesia. She followed up three months later with the HSG test to ensure that her tubes were sufficiently blocked. She was told that everything was in place.
Are you considering Essure?
After reading about Susan's experience with Essure, how do you feel about the procedure?
The symptoms begin...
From 2005-2013, Susan began seeing a different doctor. He, like many doctors, was unaware of any of the potential problems that Essure can cause.
It wasn’t long after Susan had the procedure done that she began to experience strange symptoms. She would have frequent, intermittent pelvic pain that her doctor was unable to explain. Her periods began to get very heavy, sometimes lasting as long as 10 days, and they were irregular as well. She would have a period every 21-42 days, and the bleeding was accompanied by clots of various sizes and colors; some were as big as a quarter.
Other symptoms Susan experienced included intense itching on her scalp and behind her ears. At times, she would scratch so much she would cause scabbing in these areas. In 2008, she lost her sense of smell, and her sense of taste was dulled so much that she used multiple scoops of garlic on her vegetables before she could taste anything at all.
Mentally, Susan began to struggle with a type of “brain fog” that never seemed to go away. She had a difficult time completing her own sentences, and it was common for her to walk into her kitchen and be unable to name her appliances. For example, she would look at her refrigerator, and refer to it as, “That big thing over there.” Memory loss became the norm for Susan, and it wasn’t long before her suffering became so intense that she had to quit her part time job.
Her first day at home after quitting her job was spent taking a long nap. Before long, that became her routine. Every day when her kids would go to school, Susan would sleep. Before she quit her job, she would frequently pull into her driveway after work, and take a nap in her van. As a stay-at-home mom, Susan would volunteer at her kids’ school and worked a little with the PTA, but her fatigue and other symptoms made too much volunteer work difficult, if not impossible.
As time went on, other symptoms began to surface. In the year 2012, Susan began experiencing a sharp pain in her pelvis. It was almost as though she was being poked with a toothpick, or stabbed with a pencil. Bending over to pick up a laundry basket was out of the question because it hurt too much. She also developed a spot in her vision, bloating, a strange fluttering feeling in her uterus, and tremors in her hands. Her hair began falling out in clumps, which was alarming for Susan, but she assumed it was a part of getting older.
Even so, Susan rarely complained. Her fatigue and her pain kept her from attending many of the sporting events her children participated in because she could never be certain that she would be comfortable sitting down. Rather than seek out the answers to the many burning questions she had about her symptoms, Susan chalked it up to being a busy mom of two children.
Red, itchy scalp due to Essure
- Less than 700 women were tested with Essure prior to FDA approval. Their tests were done before the 3-year mark.
- Essure is PMA protected, which means that no one can sue the company for compensation.
- From 2002-2012, 450 adverse reports were filed with the FDA.
- In 2013 alone, there were 500 adverse reports filed.
A glimmer of hope...
On Mother’s Day, 2013, Susan happened across a Facebook group called Essure Problems. She found some very enlightening information that was shared by other members of the group. Many of them mentioned that they had similar symptoms. All this time, Susan thought that she was the only one, and she never attributed her symptoms to Essure. After reading through many of the women’s stories, it became clear to Susan that her real problem was Essure.
Susan underwent blood tests and ultrasounds, and every test came back normal. She knew that her doctor didn’t understand the various side effects of Essure, so she decided to return to the doctor who did her coil placement procedure in 2004.
Upon arriving at his office, Susan was stunned to find out that they no longer had her medical records. Even though it had only been eight years, Susan’s records had been destroyed. When she met with the doctor, he wasn’t sure he believed her that he had been the doctor to do her placement. He asked, “Are you sure I did your Essure?” His tone was mocking, and Susan began to get angry. She explained the issues she had been experiencing for the past eight years, and she talked to him about the Facebook group she had found.
The doctor refused to listen. He told her that there was no possible way that she could be experiencing problems with her Essure coils after so many years. The appointment ended abruptly with a referral back to Susan’s primary care doctor.
Susan was shocked at having been dismissed so easily. She understood why all of the women in the Facebook group felt the way they did. It felt horrible to have a doctor not listen to you when you were suffering so badly. She reported back to the women in the group after her appointment, and they immediately encouraged her to get a second opinion.
In August 2013, Susan was examined by a different doctor. She was given two choices after the examination was completed:
Do nothing and suffer
Have surgery to have the Essure coils removed
A mix of emotions filled her after she met with the doctor, and she made an appointment for a month later to give herself time to talk about the options with her husband. Susan also needed time to process the information she had been given.
She returned to her next appointment, this time bringing her husband along. It was surreal, but she agreed that she would have the surgery to remove the coils. Perhaps she was in denial that they were even the problem, but the more she read about the other women on the Essure Problems Facebook page, and the more she read their stories, the more prepared she became for her surgery. The doctor they met with assured them both that he had performed similar surgeries on five other women, and they all claimed to have the same symptoms Susan had. Afterwards, however, they all improved.
For the first time in a long time, Susan began to feel hopeful.
During the surgery to remove her coils, Susan was later told that one of the coils was no longer fully within her fallopian tube. The other coil was in the tube, but it was pressing painfully against the tube wall. Neither of them looked the way they had when they were inserted. One of the coils was completely unravelled, and it appeared like a tangled web inside of her tube. Supposedly, Essure contains PET fibers, however, those fibers were nowhere to be found.
This is just one story of the many women who have suffered, and who continue to suffer because of Essure. Why has there been no five year study conducted on this product? The FDA approved Essure after the device was tested on less than 700 women after they had them inserted for less than three years.
Essure is a PMA-protected device, which means that those who have been harmed by it cannot sue for compensation. This fact should be broadcast on the Essure website, and it should be placed on every Essure brochure. The FDA and Bayer, the company that owns Essure are beginning to look at adverse reports, no tests have been developed to determine whether or not Essure is what has been causing problems for the many women who suffer from various symptoms. Bayer claims to be updating their website and their brochures, but there is so much more that needs to be done.
When will radiologists begin to get trained so that they know what to look for when performing tests on women who are experiencing pain? When will doctors get trained so that when women come into the emergency room, or into their offices, they’ll be able to properly diagnose their patients with Essure-related symptoms? When will medical databases get updated so that primary physicians can properly diagnose? Why are women not being warned about the potential for a nickel allergy? Why has there been no further research by anyone other than the manufacturer?
Perhaps the bigger question is, why did Essure get approved in the first place?
Rashes are common with Essure patients
The battle is far from over
At three months post-op, Susan found herself feeling better than she had felt in a long time. She began to think clearly again, and her symptoms either improved or disappeared completely. She currently mentors the hundreds of women who flood the Essure Problems Facebook page every day, desperate, and searching for answers. She tells them to be sure to document everything. It’s absolutely vital that they write down their symptoms, and that they record when they began, and the severity of them. She encourages them to seek out a second medical opinion, and even a third medical opinion when necessary.
The work of the women in the Essure Problems Facebook group, and the Essure Problems website is far from over. However, they’re working hard to get the word out about the dangers of Essure. Many women come to the group seeking information before they get the procedure done, and most of those women choose an alternative form of birth control.
From 2002 to 2012, there were only 450 adverse reports made that involved Essure. In 2013, there were 500 adverse reports made, alone. Clearly, women are becoming more aware of their rights, and they’re learning how to fight back against the FDA. Susan’s story is important, and if it even saves one woman from going through years and years of pain and mental suffering, it was worth telling.