TikTok is being flooded with birth control misinformation. Is it stopping women from taking it?

TikTok has become a hotbed of birth control misinformation, with videos accumulating millions of views in which women blame their IUDs for pelvic floor dysfunction, autoimmune conditions, liver failure, and other conditions. In one video, the text reads: “I cannot believe my ‘for you’ page today. Every video is of a girl getting autoimmune/cancer from her IUD. Why did we pop birth control like candy because doctors told us to?”

Virtually all American women have used some form of birth control at some point in their lives, most commonly female sterilization, oral contraceptive pills, and long-acting reversible contraceptives like intrauterine devices (IUDs). These forms of birth control each carry risks, but doctors say they are sometimes taken out of context on social media. In some cases, users have falsely said that birth control can lead to infertility or cause abortions.

Misinformation for various medical treatments circulates far and wide on the internet, and some doctors are concerned that the true risks of birth control are being misconstrued and might make women get off it when there are fewer options available for unintended pregnancies as states move to restrict abortion access after Roe v. Wade was overturned in 2022 with the Supreme Court’s Dobbs decision.

“We want to respect our patients and not make decisions for them,” said Dr. Jenny Wu, an OB-GYN resident at Duke University who studies how birth control is discussed on social media. “We are really having to address these questions around mistrust and distrust with hormonal birth control while living in a state where we have much more limited access to abortion care.”

“IUDs have so many other benefits besides just contraception,” Wu told Salon in a phone interview. “Yet I worry that with all this negative content online, it’s hard to talk about those other things that are beneficial about an IUD.”

In a study Wu published earlier this year in Obstetrics and Gynecology, videos on TikTok tagged with “#IUD” were more often negative than positive, with nearly all of them discussing pain or other side effects. In updated 2022 guidelines, the American College of Obstetricians and Gynecologists (ACOG) said that misperceptions and “exaggerated concerns about the safety of contraceptive methods are major barriers to contraceptive use.”

Whether social media is causing a significant portion of the population to get off birth control is unclear. In another study published in Health Communications in September, researchers found that women who interacted with these posts reported intentions to stop using birth control, suggesting posts do have an influence on viewers, said study author Emily Pfender, an associate fellow at the Leonard Davis Institute of Health Economics who studies women’s health and social media.

“My experimental research shows that when people perceive an influencer to be more credible, both with having greater expertise and trustworthiness, they’re more likely to intend to use a less effective, nonhormonal method,” Pfender told Salon in a phone interview. 

According to a study in JAMA Network Open, the use of all contraceptive types except vasectomies declined among the U.S. population between 2019 and 2022 before increasing post-Dobbs. Reports since then have shown more women are choosing to get sterilizations, use birth control pills, or IUDs. And an analysis by The New York Times earlier this year found the number of women who picked up prescriptions for birth control pills increased by roughly 7% nationwide between 2018 and 2023. 

Nevertheless, misinformation is affecting some women, even if not the majority, and doctors anecdotally told Salon they are increasingly seeing women who are concerned about the side effects of their birth control pills. In a study by the Society of Obstetricians and Gynaecologists of Canada, more women reported side effects like weight gain and headaches from hormonal birth control methods in recent years, and these side effects often led to discontinuation. In the study, one-quarter of women who discontinued hormonal birth control methods stopped using birth control completely instead of switching to another method.

“The top reasons people are discontinuing hormonal contraception is because they are saying that it negatively impacts mental health, they want to be more ‘natural’ and use less synthetic hormones, and because of a whole host of side effects,” Pfender said.

Online, many of the women sharing their experience getting off birth control promote the “natural rhythm” method, which involves timing sex to align with the non-ovulating part of the menstrual cycle. However, data suggests this method is far less effective in preventing pregnancy compared to birth control methods like the IUD or the pill, which each are close to 99% effective.

“Planning is hard because it requires tracking your cycles, and not everyone has regular cycles,” Wu said. “And there are all those privacy concerns with period tracking apps.”

Despite their dark origins of being tested in low-income Puerto Rican women, birth control pills have been credited as being key players in the women’s liberation movement because they helped women take their fertility into their own hands. They have only gotten safer since they were first marketed in the 1960s. Today, 14% of women between ages 15 and 49 are on the pill and about 10% have an implant or IUD, according to national data from the Centers for Disease Control and Prevention (CDC).

Yet, according to a review published in 2021, many women reported wanting to regain control over their bodies as the reason for getting off birth control, indicating the pendulum of personal choice that began in the 1960s with the introduction of the pill might be showing signs of swinging in the other direction, at least for some.

Today, many women report not being informed of the risks of birth control pills or the IUD, which can lead to mistrust in the medical system when some of these risks are realized. In a 2022 study by KFF, just 30% of women reported that they were adequately informed of all of the risks and information they needed to know about their birth control method before getting on it. 

Birth control pills with estrogen do carry a slightly elevated risk for blood clots and stroke. While some studies have also linked hormonal birth control pills and IUDs to an elevated risk of breast cancer, other studies have shown these methods can actually reduce the risk of endometrial or ovarian cancers. These nuanced discussions of risks should always occur between patient and provider before selecting a birth control method. 

Even though the risks for most birth control pills are low, they can seem more common when they happen to someone a patient knows. It’s unclear how much information circulating on social media plays into decisions about birth control, but generally, stories can sometimes move people more than a statistic can, said Dr. Jonas Swartz, an OB-GYN at Duke University. Yet it’s important to keep in mind that people who post about their experience online are also more likely to have an extreme experience, either positive or negative, he said.

“When I was a resident, people were more often getting this information from friends and relatives, and oftentimes you talked about how effective a particular contraception type was or what the bleeding profile was and someone would say, ‘Well, I don’t want that one because my cousin’s friend had a bad experience with that,’” Swartz told Salon in a phone interview. “I think the difference now is that people see these anecdotal bad experiences on social media and those play heavily into their decision-making.”

In some cases, increased visibility online has helped shed a light on underrecognized women’s health issues. In recent years, women have posted videos of their faces contorting in pain during an IUD removal or insertion to demonstrate how painful they are. As a result of this increased attention, the CDC recently updated its guidelines to recommend offering women more pain management options during the procedure.

“Social media can be negative because there’s not necessarily vetting of the quality information, but it can also be really positive because it democratizes who can provide perspectives on different types of contraception,” Swartz said.

Regardless, people are increasingly turning online for information as distrust in public health increases. After all, it took a flood of videos showing painful IUD insertion procedures for professional organizations to change their guidelines and take women’s pain seriously. In general, women’s health research is underfunded and U.S. mothers, particularly Black mothers, die at a higher rate in the U.S. than they do in any other high-income country.

Health disparities create a vicious cycle of medical mistrust that can prevent people from seeking help in medical establishments. Without that support, it makes sense that many would do their own research online. But for more than just birth control, it is becoming increasingly difficult to disentangle the truth from the deluge of information one comes across on the internet every day.

“We’re attuned to this balance between respecting our patients’ wishes but also keeping them safe,” Wu said. “I’m really hopeful that our generation of gynecologists are really thinking about these topics, and hopefully will change the conversation. Hopefully, we will be able to rebuild the trust that has been lost with a lot of our patients.”