After Essure Side Effects, Illinois Mom Turns Years of Illness Into Advocacy

Theresa Ingram used to do flips in the pool with her children. A former gymnast, she was the mother who always had something planned, whether it was swimming, a trip to the zoo or an afternoon outside.

Now, she has to choose between saving her energy and watching her daughter play softball. On some days, even walking to the car feels like too much.

“I’ve never ever missed anything in my kids’ lives ever, and now I have to pick and choose what I do,” she told Drugwatch.

Theresa traces that change back to Essure, the birth control device she chose when she was 32. She’s now 46, and years of illness have left her grieving the life she had, but determined to help other women feel less alone.

With three daughters, Theresa and her husband knew their family was complete. Her husband offered to have a vasectomy to prevent further pregnancies, but he was a laborer, and time away meant lost pay.

“I insisted [on getting Essure]. I insisted because I didn’t want him to miss work,” Theresa told Drugwatch.

Essure was a permanent birth control device placed in the fallopian tubes, which carry eggs from the ovaries to the uterus. Tissue grew around the inserts, blocking sperm from reaching an egg. Placement did not require a surgical incision.

Her doctor described Essure as an easy procedure with a quick recovery and few side effects, Theresa recalls. She trusted the woman who had delivered two of her daughters.

Still, on the day of the procedure, Theresa cried. A nurse squeezed her hand and held it through the procedure.

Theresa recalled heavy periods, exhaustion and back pain that began after she went home. Within weeks, she returned to her doctor, worried something was wrong. She remembered being reassured that it was just her hormones acting up since she was getting close to her 40s. Then she tried to carry on as weight gain and unusual bruising added to her concerns.

“My body was telling me something was wrong,” Theresa said.

She tried exercising, eventually building up to eight-mile runs. But in 2017, pain during a run turned out to be a broken femur, or thighbone, after an initial diagnosis of a sprain. Recovery took about eight months, with much of it spent trying to get comfortable on the couch.

Later, she shattered her ankle and needed 13 screws, a rod and a plate.

Desperate for answers, she saw another doctor. This doctor urged her to remove Essure and told her it was linked to autoimmune diseases, she recalls.

“He was like, yeah, you have a lot of autoimmune disease going; a lot of inflammation,” Theresa said. “You know, you’ll get better if you have the hysterectomy … These coils need to come out of you.”

So, in December 2018, she underwent a hysterectomy, a surgery to remove the uterus, hoping for relief.

But she was still suffering from health issues, and her search continued at Mayo Clinic, where she says doctors diagnosed Cushing’s syndrome and a pituitary tumor. Cushing’s syndrome involves excess cortisol, a hormone that helps the body respond to stress. The pituitary is a small gland at the base of the brain.

Theresa describes years of treatment as the tumor returned, including further surgery, radiation and the removal of her cortisol-producing adrenal glands. She also reported several autoimmune disease diagnoses, conditions in which the immune system mistakenly attacks healthy tissue.

Her husband has stayed beside her through treatment and financial strain. But she remembers the toll on her children too, particularly seeing her endure months of vomiting and shaking after her first tumor surgery.

Theresa believes Essure contributed to her illnesses, though she acknowledges that a connection to her Cushing’s syndrome has not been scientifically established.

There haven’t been enough studies on Essure and autoimmune diseases, and study results are mixed.

A 2021 paper in Autoimmunity Reviews described 33 patients who chose Essure removal because of pelvic pain and other symptoms consistent with autoimmune/inflammatory syndrome by adjuvants (ASIA), a proposed autoimmune and inflammatory reaction to implanted materials. The authors suggested Essure could trigger this syndrome and recommended screening for symptoms.

A larger 2018 French study found no statistically significant difference in autoimmune disease risk between Essure and surgical sterilization at one or three years. Neither study establishes the cause of Theresa’s conditions.

The FDA listed complications linked to Essure such as persistent abdominal, pelvic or back pain, allergic reactions, unintended pregnancies and inserts moving out of place or puncturing the uterus or fallopian tubes. Some women needed surgery to remove the device.

In 2016, the FDA ordered an additional safety study and approved a boxed warning and patient decision checklist. In 2018, it restricted sales to providers who reviewed the checklist with patients and signed it. Bayer voluntarily stopped U.S. sales and distribution at the end of 2018, citing business reasons. By the end of 2019, Bayer asked for all unused devices to be returned.

Bayer faced thousands of Essure lawsuits from women claiming they were never warned the device could cause complications, including autoimmune disease reactions. In 2020, Bayer settled about 90% of nearly 39,000 filed and unfiled injury lawsuits for around $1.6 billion, while standing by the product’s safety.

These days, Theresa struggles to finish a load of laundry or cut fruit for her family. Her children and grandson keep her going.

She wanted to file an Essure lawsuit but says the statute of limitations, the filing deadline, prevented her from pursuing a case despite contacting more than 20 lawyers.

She has started a Facebook community and a petition and says she has met with Illinois state Rep. Jed Davis about possible legislation. She is also partnering with a filmmaker and writing a book.

In its first chapter, she writes about the emotional cost of illness. Reading an excerpt during her interview, she said: “There is something deeply isolating about living in a body that changes without explanation.”

Her story also makes room for the woman who keeps going.

“My voice was not always loud. It was earned,” Theresa read. “I’m still healing. I’m still learning, and I’m still becoming.”