The Real Story Behind Women Getting Off Hormonal Birth Control And Misinformation

The Washington Post recently published an article called "Women are getting off birth control amid misinformation explosion," which describes how women are increasingly walking away from hormonal birth control because of side effect concerns. And that these concerns are the result of misinformation being fed to them by TikTok influencers and the political far right.

By Dr. Sarah Hill6 min read
Unsplash/Reproductive Health Supplies Coalition

In the article, the authors reprimanded women for having the audacity to question the wisdom of hormonal birth control, longing for the days when women would politely accept their birth control prescriptions from their doctors without asking any questions…because, apparently, this is what adequately informed, empowered women do.

Needless to say, there were a lot of problems with this article. It was condescending to women and dismissive of their side effect concerns (an issue we’ll return to). It failed to interview researchers in this space to get a balanced perspective on what types of side effects are actually possible with hormonal birth control. And it was conspicuously silent about the fact that women have every right to question having their concerns dismissed by a medical system that has routinely trivialized and ignored their needs. Women experience adverse reactions to medication and other forms of medical treatments twice as often as men, and 8 out of 10 new prescription drugs (80%) are regularly pulled from U.S. markets because of unanticipated side effects in women. We also live in a medical system in which it is de rigueur for women to experience diagnostic delays for more than 700 different conditions – including heart attack, stroke, cancer, and Parkinson’s disease – because their concerns aren’t taken seriously by their doctors.

The Washington Post piece – in pushing all of this history aside to blame women for their side effect concerns – missed the real story. While it is undoubtedly true that there is misinformation on social media about birth control (as there is about any topic, and not all of the information about birth control on social media is bad), the idea that women might be misinformed about birth control isn’t the thing that we should all be talking about. The real story that we need to be talking about is that the field of medicine has been so dismissive of women’s healthcare concerns over the years – especially when it comes to anything having to do with our sex hormones – that women are having to turn to social media to look for answers. And this is pathetic. 

So, here is the story you didn’t get to read.

Side Effect Concerns Are a Global Issue

To start with, let’s talk about women’s relationship with hormonal birth control. Because far from being a love affair interrupted by fear-mongering influencers in TikTok videos, research suggests that women have long had a love-hate relationship with their hormonal birth control. A lot of women love it because it’s a safe, relatively inexpensive, and foolproof way to prevent pregnancy (I loved it for these reasons when I was on it). However, many of these same women also hate it because of their concerns with unwanted side effects. For example, research finds that nearly half of all women who go on hormonal contraceptives stop using them within the first year because of intolerable side effects. Side effect concerns are also a frequently cited reason that women resist beginning hormonal contraceptives in the first place. Importantly, these patterns are observed both in Western women, many of whom have social media access, and among women living in developing nations, many of whom do not. Globally, about one-third of women discontinue hormonal contraception in the first year of use because of side effects or health concerns, suggesting that these concerns are not a problem created by TikTok.

Globally, about one-third of women discontinue hormonal contraception in the first year of use because of side effects or health concerns.

Research also suggests that these concerns are substantiated. Women aren’t just “being hysterical” because they watched too much TikTok. Hormonal contraceptives can have an innumerable number of often unpredictable side effects on the body, a tendency that is the inevitable consequence of the way that hormones work in the body. 

Here’s a quick summary for those of you who aren’t in the know: The first thing you need to know is that when hormones get into the body, they travel in the bloodstream and get picked up by all cells in the body that have receptors for them. So, sex hormones – whether created by our bodies or the synthetic kind we take in a birth control pill – go everywhere that blood goes. And from there, they affect every cell in the body that has receptors that allow them to “hear” the message.

The other thing you need to know is that female bodies have receptors for sex hormones all over the place, including areas you might not ever suspect. This includes things like the immune system, the metabolic system, and all major structures in the brain. The reason for this is that almost everything that female bodies do has to change in the context of pregnancy, making it necessary for most of our body to “hear” messages from our sex hormones. 

When you have a body that is wired from head to toe for communication from sex hormones, then you’re going to get a lot of surprising side effects when you start monkeying around with women’s sex hormones. And we do. System-wide side effects are the norm when it comes to hormonal birth control. And although some of these changes are good (I think we can all agree that clearer skin, pregnancy prevention, and a reduced risk of ovarian cancer are each a plus), some of them may not be. For example, there is evidence that hormonal birth control use may be linked with hippocampal shrinkage, an increased risk of depression, and even changes in sexual desire and attraction to partners.

But doctors aren’t taught to think about things this way. They’re taught to exercise near-blind faith in what they read in the research literature, trusting as real only those side effects that they have seen research evidence for. And to assume that any side effects that they have not seen reported – particularly if they are only being reported by one or two of their patients – aren’t side effects at all. Rather, they’re something the patient is wrongly attributing to their birth control that actually has nothing to do with birth control at all. 

But there are a lot of problems with this.

Why Doctors Dismiss Birth Control Side Effects 

To start with, there are many research studies on the effects of hormonal birth control that are published in journals that medical doctors don’t typically read. Most doctors are well-versed in the research presented in medical research journals (and this is the literature that serves as the foundation of their training), but they know less about research in other fields. So, if there is a study published in a neuroscience or developmental psychology journal demonstrating that hormonal birth control use has important effects on things like brain structure or developmental processes that have implications for mental health (which there are, see here and here), they are unlikely to see it. And, although this problem is not unique to medicine (science is notorious for having knowledge silos…and I am as guilty of having them as the next person), they can create a division between patients and doctors about what possible side effects are when it comes to a medication.

Secondly, many doctors have been trained not to take patient side effects too seriously unless the side effect has been demonstrated in research showing that there are significant differences between users and nonusers of birth control on whatever the outcome is. This means that for a doctor to take a woman’s side effect concerns seriously, the side effect must be present in most women, all of whom are responding in the same way to a particular hormonal intervention. Unfortunately, this rarely happens with something as complex and as heterogeneous in its effects as hormonal birth control. This is because the complexity of hormonal interactions in the body is far too person-specific for most women to have a one-size-fits-most response to hormonal contraception (see this paper I recently published for more evidence of this). Research finds that the same hormonal contraceptives can cause some women to lose weight, some women to gain weight, and some to have no changes in weight at all. So, trusting side effects as real only when they are sufficiently large and unidimensional in their effects to make the population average change (what we call the tyranny of averages) can often lead us to wrongly dismiss patterns that are going to be highly person-specific.

The absence of evidence that hormonal birth control causes unwanted side effects is not evidence that those side effects don’t exist.

The fact is, there are a lot of side effects that women experience from their hormonal contraceptives that are not accounted for in the research literature. Hormonal effects in the body are notoriously messy and heterogeneous in their effects. And there is not enough research being dedicated to understanding the wide range of ways that these effects can change women’s bodies and psychological experiences. Many times, the lack of evidence demonstrating that hormonal birth control has meaningful effects on women’s experiences (what we usually call side effects) is just an artifact of the fact that one has bothered to ask the question.

For example, despite sex hormones being instrumental in directing post-pubertal brain development, there has been almost no research on the lasting impact of hormonal birth control use on adolescent girls’ brain development. So – given the absence of evidence showing that teens going on birth control experience disruption in brain development – many doctors routinely prescribe hormonal birth control to teenage girls for issues as minor as acne and nuisance period cramps. But is this wise, when it would be nearly impossible for this type of hormonal change not to have an impact on the organization of the brain? The absence of evidence that hormonal birth control causes unwanted side effects is not evidence that those side effects don’t exist.

Women Deserve More and Better Options

So, here is the story that you didn’t see in The Washington Post: When doctors are being trained in a way that makes it routine practice to dismiss the concerns of women because (a) the concerns don’t affect the majority of women (they almost never will) and (b) they assume that absence of evidence is evidence of absence (which it is not), women are going to be relegated to social media for their answers about birth control.

The fact is that women’s concerns with birth control have been completely ignored for too long. And it’s about time that we started speaking out about it. Change is needed. Although there are many wonderful doctors out there who listen to women and take their concerns seriously, there are also plenty who do not. These doctors need to learn to take their patients’ concerns seriously, even if they are not experienced by the majority.

The bottom line is hormonal birth control changes women’s sex hormones, which means that it changes women.

And as scientists, we need to do more to help create new and better options to offer women to help them manage their fertility. It is estimated that only 2% of annual sales revenue from contraceptives gets funneled back into research and development geared toward finding new and better ways to prevent pregnancy (whereas for most other products, this number is closer to 20%). This is unacceptable and suggests that we have been far too complacent with the options that we currently have available.

The bottom line is hormonal birth control changes women’s sex hormones, which means that it changes women. And even though there isn’t enough research for us to know all of the ways that this is true, we know enough to know that it is true. And women need to be able to talk about these concerns with their doctors. It’s a proud moment for women that they have stopped being okay with whatever their doctors give them and feel brave enough to ask for something better.

There has been a decline in pill usage in the U.S. in the last 15 years, suggesting that women are walking away from birth control in greater numbers than ever before in recent history. But the answer to ensuring that women can protect themselves from unwanted pregnancies isn’t to shame them because they were looking for answers. Or to needlessly politicize an issue that is far too important for politics. The answer is to listen to women’s concerns and provide them with more options. Women are not the problem. Social media isn’t the problem. The problem is that women’s doctors are not listening to their concerns and there aren’t enough alternative options to offer them. Let’s work together to change that. We need to do better for women.

Dr. Sarah E. Hill is a Professor of Psychology, the author of “This Is Your Brain On Birth Control: The Surprising Science Of Women, Hormones, And The Law Of Unintended Consequences,” and the lead science advisor for 28 Wellness. With nearly 100 scientific publications and half a million dollars in research grants to her credit, Dr. Hill has become an authority on evolutionary approaches to psychology, health, and women.

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