Patients are warned that IUDs can be 'uncomfortable.' But many say the pain is excruciating.

This picture taken on June 25, 2020 shows a doctor holding an IUD birth control device to put into a patient's womb at a clinic in Jakarta. - Indonesia is warning of a post-COVID-19 coronavirus epidemic baby boom that could see at least 400,000 more births than usual by next year as lockdowns cut access to contraception. (Photo by ADEK BERRY / AFP) / TO GO WITH Health-virus-Indonesia-population,FOCUS by Dessy Sagita (Photo by ADEK BERRY/AFP via Getty Images)
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Heather Williams walked into the doctor's office feeling confident and calm. She had researched the intrauterine device that her obstetrician-gynecologist was about to place inside her uterus: People online told her to expect "major cramping" during insertion, but she figured it wouldn't be worse than a period. As long as she took a few ibuprofen, she thought she'd be fine.

Thirty minutes later, Williams was lying on the cold tile floor in the bathroom at the doctor's office.

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"I don't think I'd ever felt pain like that before," she said.

Over the past three decades, the intrauterine device, or IUD, has been steadily gaining ground. In the early 1990s, 1.5% of U.S. women ages 15 to 44 used one; today, around 14% do, according to the Kaiser Family Foundation. Friends told their friends about it, who told their friends about it, said Stacy De-Lin, a gynecologist and associate medical director with Planned Parenthood, normalizing a method that was widely rejected in the 1980s, after an early iteration caused infertility and life-threatening infections. Placed inside the uterus for three to 12 years, with no room for user error, today's IUDs are more than 99% effective at preventing pregnancy. De-Lin herself uses an IUD, she said. Doctors use IUDs more than any other form of birth control.

Many OB/GYNs, including De-Lin, say they warn patients that the IUD insertion procedure might be "uncomfortable." In the first few weeks and months, they say, patients may experience some irregular cramping.

Related video: The surprising history of the IUD

But many IUD users describe pain that goes far beyond discomfort. Seventeen percent of women who have never had children and 11% of mothers say they experienced substantial pain that required pain management during the insertion process, including medication and other non-pharmaceutical methods, according to a 2013 study. Pain can occur no matter what type of IUD you have, De-Lin said, whether it's a hormonal variety, like the Mirena or Kyleena, or the non-hormonal Paragard IUD.

After the IUD is inserted, the pain should not be long-lasting, said Yesmean Wahdan, vice president of U.S. medical affairs for women's health at Bayer, which makes the popular Mirena and Kyleena IUDs. If patients experience severe pain that lasts longer than a few days, they should go back to their doctor, she added. (Paragard did not respond to a request for comment.)

In a recent callout, The Lily asked readers to describe their IUD experiences. Of the 131 people who responded to our unscientific study, a majority mentioned some kind of pain associated with the IUD, either during insertion or afterward. Some described pain that left them bedridden for days or sprinting to the bathroom to vomit. The IUD felt like "shards of glass" in her vagina, one woman said. Another described her experience as "hell on earth."

Many women described feeling ignored or overlooked by health-care providers who did not seem to take their pain seriously - and who failed to adequately warn them about what they should expect. Because IUDs are so effective, doctors often encourage their patients to try them and may be reluctant to remove them when people reach out with reports of pain or cramping, said Leigh Senderowicz, who studies sexual and reproductive health at the University of Wisconsin School of Medicine and Public Health.

"There are enough tales of discomfort that go beyond just taking an Advil or Tylenol that I think there should be more information available," said Danielle Petermann, a 48-year-old based in Cincinnati who has had an IUD since 2013. Her first insertion process was "harrowing," she said, leaving her in constant pain for a month and a half. And while she still recommends the IUD to friends, she said, "I think the pros get sung so well that people don't realize that it's not as easy as just swallowing a pill."

When Dani Macedo went to get her IUD in 2013, she said, she knew almost nothing about it. At the time, none of her friends had IUDs. "I'd seen commercials for the Mirena and read some general information online," said Macedo, now 30, based in Texas. "I thought it would be pretty interchangeable with the pill."

Macedo's doctor warned her that the insertion would hurt "a little bit," she said, and encouraged her to take two ibuprofen. Macedo wasn't concerned, she said.

"They say the same thing before I go in for a wax," she said.

The IUD insertion was more painful than breaking her arm, Macedo said. The severe cramps lasted about two days, she said - then her menstrual cycles got heavier and more uncomfortable. She had her IUD removed after five months.

Pain tolerance varies widely from person to person, said Siripanth Nippita, an OB/GYN at the New York University Grossman School of Medicine. People who have had vaginal births tend to experience less discomfort during IUD insertion, she said. But for any patient, Nippita added, severe pain is "not normal." If a patient was yelling or crying during the procedure or afterward - which happens very rarely, she said - that would raise a red flag.

There is a long, well-documented history of doctors discounting the pain of women, and especially women of color. As a gynecologist, De-Lin said she has a responsibility to acknowledge the pain reported by her patients: to listen deeply, and work with the patient to come up with a solution. If someone comes back to her office one or two months after an IUD insertion, reporting persistent pain and cramping, De-Lin would do her best reassure the patient that their reaction is normal. But if the patient reports particularly severe pain, De-Lin said, she would perform an ultrasound to check the placement of the IUD - and potentially remove it.

Tiffany Washington, 29, returned to her OB/GYN in Richmond, Va., a few days after she got her IUD. She had been hesitant to go back, she said: As a Black woman, she was used to medical professionals discounting her pain. But she didn't feel like she had a choice. The pain was so intense that she'd had to take two days off work that week, she said, unable to get out of bed.

As soon as she walked into the office, Washington ran into the nurse who inserted her IUD. "Back so soon?" Washington remembers her saying, as the nurse smiled and rolled her eyes.

"That made me second guess myself," Washington said. "I started thinking: How much of this is normal and how much is in my head?" When Washington's OB/GYN suggested that she stick it out for a few more weeks, Washington agreed.

Four days later, the pain had intensified. She went to her local Planned Parenthood to have the IUD removed, she said, wanting to avoid her regular doctor.

Valerie Johnson also saw a doctor who didn't seem too concerned about her pain, she said. After her IUD was inserted, she withstood "persistent" pain for five weeks before she went back to her OB/GYN for a follow-up appointment, reminding herself that some degree of pain was normal. The OB/GYN confirmed the IUD was still in place and assured Johnson that the pain would subside soon. If it didn't, the doctor urged her to come back in a couple of weeks.

The pain continued, Johnson said. When she finally returned to her doctor's office five months later, she was told they couldn't find the IUD on an ultrasound. Later, they were able to locate the device on an X-ray: Johnson's IUD had perforated her uterus and lodged itself in a fat deposit. Within a few days, she said, she was scheduled to undergo laparoscopic surgery.

"I tend to defer to the experts," Johnson said. "I wish I had been a stronger advocate for myself when my pain was dismissed."

Serious complications with an IUD are extremely rare, but they do happen, De-Lin said. Uterine perforations occur in approximately 1 case out of 1,000, according to the American College of Obstetrics and Gynecology. IUD expulsions are another, more common complication. Between 2% and 10% of all IUDs are involuntarily expelled in the first year, hanging out of the cervix or coming out of the vagina entirely. Patients are warned about "extreme pain" prompted by these complications on the labels of the Mirena and Kyleena IUDs, said Wahdan.

"Providers need to look out for things like perforation and expulsion. We need to make sure that isn't happening," she said.

After her insertion procedure left her lying on the bathroom floor, Williams's IUD dislodged inside her uterus. At first, she wasn't sure whether there was anything wrong. Then the cramping got worse, she said, and sex started to feel "like hitting an internal bruise."

Her OB/GYN determined that the IUD was "sitting low," Williams said. She removed it and inserted it again.

The IUD dislodged again 10 months later, Williams said. This time, the metal tip of the device was poking out through her cervix. When Williams called her doctor's office to ask what she should do, she was told she could "grab the strings" and try pulling it out herself.

Williams was stunned by how unconcerned the doctor seemed, she said. "Like, just tell me to go to the emergency room. I don't care how easy it is to pull it out." (In this situation, De-Lin said she would never tell a patient to try removing the IUD themselves. She would always counsel a patient to come in for evaluation and removal, she said.)

After her IUD dislodged the second time, Williams went off birth control entirely. For a year after that, while she was still dating her partner, they used the "pull and pray" method.

Despite the cramping and other potential complications, De-Lin said, the vast majority of her patients who use the IUD are thrilled with their experience. Patients will often ask her about a blog post or article they read about an IUD horror story. She always tells them the same thing, she said.

"There are many thousands of women walking around happy with their IUDs who typically aren't writing posts."

Patients need to feel seen and heard by their OB/GYN, Nippita said. She works hard to establish trust with her patients: If they aren't happy with their form of birth control, she said, she wants to make sure they feel comfortable coming back to her office.

"What I don't want is for someone to hate their method, stop using it, and drop off the face of the earth."

Nippita likes to have in-depth conversations with her patients, learning all she can about the gynecological and sexual histories, which can help her gauge their tolerance for pain. That information is crucial to helping patients understand how they might react to an IUD, she said.

Unfortunately, she said, those kinds of conversations aren't always possible: Most appointments only last 20 minutes.

This story first appeared in The Washington Post's The Lily publication.

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