A new Netflix documentary investigating the medical device industry ends on a particularly devastating note for Ana Fuentes, a single mother in California who received a permanent birth control implant when she was still married.
The film shows her struggling to make ends meet and searching for cheap hotels with her daughters after she loses the apartment. She can’t hold a job because she is constantly in the emergency room, in so much pain that she can barely walk to the entrance. In her final scene, she is visiting her daughters in a stranger’s home; the children eventually were placed in foster care.
Director Kirby Dick said that it was clear through his reporting that Fuentes and her daughters were extremely close, even after they could no longer live together, and he wanted to be sure that message was conveyed in the film.
In an interview with ConsumerAffairs, Fuentes provided more details about the domino-effect that the botched procedure had on her family.
Though Fuentes is pleased with how her story is validated and portrayed in the film -- she says she watched it three or four times after it aired -- her sense of betrayal from the medical community is still raw.
“It was really hard for me to accept that he didn't care about me,” she says of her doctor. “Because he took care of me with my last pregnancy and my last baby. I trusted him so much when he told me about Essure."
Before the procedure
When Fuentes agreed to be implanted with Essure back in 2011, she was living in an apartment with her husband and their four daughters in southern California. She took care of the girls while he worked. She received health coverage through Medi-Cal, the Medicaid program offered in California.
Fuentes recently had a baby and did not want more children. She asked about getting her “tubes tied,” the more common and older sterilization procedure. Her doctor told her it wasn’t a good idea because she had a family history of ovarian cancer.
He said a permanent medical implant called Essure was the better option.
Like thousands of other patients who have filed complaints to the Food and Drug Administration (FDA), Fuentes says she suffered sharp pains and heavy bleeding immediately after the procedure. The symptoms persisted.
She went back to the same doctor who implanted her. “He kept telling me it was in my head,” Fuentes remembers.
She would learn much later that her doctor had admitted to accepting thousands of dollars from Bayer via government disclosure websites. The financial incentives that device companies provide doctors are well-documented in the film and in medical research, but it wasn’t the only factor hindering her care.
As Fuentes recounts in the film, her doctor also blamed the fact that she was a Latina woman for the bleeding, claiming that they simply have heavier periods than other woman.
In an interview, Fuentes says she also remembers her doctor telling her that it had to do with "you guys [having] so many kids,” referring to Latina women. Fuentes’ recollection comes at a time when researchers are increasingly calling attention to racism and sexism in medicine.
Struggling through it
Sometimes she felt a jolt travel through her body when she plugged electronics into the wall socket. It was a strange, unsettling sensation. Like everything else that was happening to her, she didn’t have an explanation.
She never told her husband why she could no longer be intimate with him. They simply stopped talking about it.
“He just looked at me and he would walk away,” Fuentes recalls. The next year, he left the family without saying goodbye. Fuentes learned from her landlord that he didn’t pay that month's rent before fleeing. The landlord gave the family 16 days to pack their bags.
Trying to work
Fuentes looked for work when her older daughters were in school and slept with them at a homeless shelter or in their car in the evenings. She found a daycare center for her youngest child, still a toddler at the time, and worked three different jobs when she could. She took 900 milligrams of ibuprofen each day, but on some days the symptoms were still too much to handle.
One afternoon, while crossing the street with her toddler, the pain suddenly flared up again. She could feel blood soaking through her pants. She could barely make it to the other side of the street.
“People were just honking, calling me crazy lady, what are you doing? But I couldn't move. I couldn't walk. The pain was so strong,” Fuentes says, crying at the memory.
“I just kept walking slowly. Nobody got out of the car to help out or anything.”
On another day, while carrying a tray of food during her shift at a restaurant, she suddenly passed out. She asked coworkers not to call anyone and drove herself to the hospital. The restaurant cut her hours.
In 2013, Fuentes found the E-sisters, the activists who have convinced regulators to scrutinize Essure and who share their stories on a popular Facebook page called Essure Problems. It was through the women that Fuentes learned how common her symptoms were.
She consulted with new doctors thanks to the Medi-Cal coverage and learned that tubal ligation surgery isn’t actually dangerous for women with a family history of ovarian cancer, as her implanting doctor had claimed.
"I already felt betrayed, and then hearing all these options from other doctors, ‘You could have done this,’" she says, trailing off.
Like other women in the group, Fuentes learned that removing Essure is difficult and she that she would need a hysterectomy, followed by weeks of recovery in which she would not be able to work. Still, she relented and agreed to undergo the procedure in 2014.
She was recovering in the hospital when a social worker showed up and told her to find a home for the children. "I think the hospital reported me, because they asked me where I live, and I gave them my brother's address,” Fuentes says.
The social worker warned her to "find a solution or we'll jump in. Because you need to take care of your health.”
Through her church, Fuentes found a nonprofit that allowed her to keep her children with other Christian families. As the film shows, the families often invited her to visit the girls, even though they were not required to do so.
“All of the families have been a blessing,” Fuentes says.
Participating in the documentary was an easy decision. The E-Sisters told her that sharing her story would help other women.
Though the film ends with Fuentes leaving her children in foster care, Fuentes says their situation has become more stable since then. She is now reunited with her daughters thanks to a nonprofit program that assists with partial rent each month.
A GoFundMe page that Fuentes set up following the film’s release in late July, asking for $5,000 to cover living expenses, has since raised nearly five times that amount from people all over the world.
Still, medical expenses could quickly eat those donations away. Even after the hysterectomy, her symptoms remained.
Fuentes began losing her back teeth several years ago, and Medi-Cal insurance doesn’t cover dental work beyond regular cleanings. On a new doctor's advice, she underwent another surgery in March, this time to have her ovaries removed. He told her to wait at least three months before trying to work again.
“One day you feel like superwoman and the next day you don't want to get out of bed,” Fuentes says of the symptoms she and other women still live with. She is only 36-years-old.
Shortly before the film aired, Bayer took Essure off the market in the United States, the one country where it was still for sale. But Bayer maintains that the implant is safe. As the documentary shows, Essure is only part of the problem. The medical device industry generally faces a low barrier to prove that its products are safe before they can be used on patients.
Conceptus, the company that originally developed Essure, was not required to conduct long-term studies on the device. Little is known about what will happen to women like Fuentes when they reach middle-age and beyond. Fuentes says that her legs are covered in small red dots that didn’t exist before the procedure. She is also starting to lose her hair.
Because Essure is made from nickel, other women who are experiencing similar symptoms suspect that they have a metal allergy. Numerous women say that they were never tested for metal allergies before receiving the device.
“I just wish they could have done more studies on this,” Fuentes adds.