When I learned I had precancerous lesions on my cervix and that my doctor was recommending I remove them surgically, my reaction went as follows: One, muted panic. Two, I’m definitely going to die. Three, Wait, what does that even mean?

So I did what anyone in possession of an Internet connection in 2021 would do: I went online to do my own research. The Internet confirmed what my physician had told me: the procedure, called a loop electrosurgical excision procedure, or LEEP, is a common one, in which a heated wire is inserted into the vagina to remove the offending cells.

I also found a host of women complaining of unexpected side effects. One article, in Cosmopolitan, was particularly concerning, full of stories of post-LEEP sexual dysfunction from women who had fully healed, yet who were unable to orgasm, feel pleasure during penetration, or have pain-free sex.

I mentally rehearsed the discussion I’d had with my gynecologist. He hadn’t warned me about any of this, which worried but did not surprise me. He had seemed more concerned with protecting my ability to get pregnant, even though I had repeatedly told him I was uninterested in bearing children. With scant scientific literature available—studies on post-LEEP outcomes were mostly focused on the procedure’s efficacy in preventing cancer, as well as pregnancy outcomes—it felt impossible to assess whether these risks were real. Was I about to subject myself to a procedure that might save my life, but at the cost of one of the things that brought real joy to it?

*

The disconnect between our experiences with medical professionals and what women and people assigned female at birth (AFAB) hear from our peers has been a central concern for feminist health activists for decades. When it comes to understanding what’s going on with our bodies, who can we trust?

For much of the twentieth century, the health-care system overtly treated AFAB people as unable to make decisions about their own bodies. Contraception was not decriminalized in Canada until 1969, and limitations on abortion were struck down even later, in 1988. Birthing people often had to endure labour alone, without partners present, and without the freedom to decide on pain relief options. Many women were ignorant of even the basic anatomical realities of their bodies.

In the 1960s and ’70s, activists dissatisfied with the limitations imposed by a misogynist health-care system, regressive laws regulating their bodies, and chauvinist doctors began to organize. They formed self-help groups, opened community clinics, and ran underground abortion networks. They performed vaginal self-examinations using a speculum, a flashlight, and a mirror.

What became known as the women’s health movement was grounded in a belief in empowering women with access to information about their own bodies and their sexual and reproductive health that was being denied to them by licensed health-care providers. In the U.S., the Boston Women’s Health Book Collective published revolutionary health-education text Our Bodies, Ourselves in 1970. Inspired in part by that text, a Canadian group called Women Healthsharing launched a quarterly magazine, which ran from 1979 to 1993 with a mandate to “take health out of the hands of the experts and return it to our own collective and individual hands.”

“The media landscape for women’s health information and feminist health perspectives in particular was dismal” at the time, says Connie Clement, founding managing editor of Healthsharing and longtime public health activist.

Healthsharing featured a mix of experts and lay writers reporting from across the country. “We always tried to write for lay women and women who had training in health. And I think it was a huge success for us that we had nurses and doctors contributing and reading, and we had women who had no special knowledge,” Clement says.

The subjects of Healthsharing ’s coverage were wide-ranging. In the inaugural issue, collective members Madeline Boscoe and Kathleen McDonnell penned a piece exploring birthing options in and out of the hospital, in response to feelings of “powerlessness, ignorance, and alienation from our bodies and our surroundings” in childbirth. Multiple issues reported on the use of Depo-Provera, a controversial contraceptive with potentially serious side effects. One column crowdsourced health information from readers (“We are trying to find out more about cervical caps in Canada,” read one callout). Other stories, like a piece on the labour conditions of garment workers, looked at the wider social and economic status of women in Canada.

This kind of education was key to both the women’s health movement and to second-wave feminism more broadly, grounded in the belief that knowledge was a precondition for enacting social change. “The whole feminist health movement was trying to change the social context of women’s health, [and] the structural conditions that influence health,” says Clement.

While it may seem like we are lightyears away from people not knowing what their own vulvas look like, as I peruse archival copies of the magazine over 30 years later, I am struck by how many articles overlap with current hot-button topics. The desire to balance “expert” medical opinion with the layperson’s experiences, the critical questioning of controversial pharmaceutical solutions, the attention to broader social, economic, and political conditions: it’s all in those pages, and it can be bittersweet to see how many issues are still relevant today, a testament to how slow progress can be in these contexts, and how easy it can be to roll it back, especially when we forget what has come before us.

*

I came of age in the 2000s, long after the era of the Women Healthsharings and vagina colouring books of women’s lib. I instinctively shied away from the diet-centric, fatphobic content in teen girl magazines. Thankfully for me, there was an entire ecosystem of feminist writing I could turn to online which shared both individual women’s experiences and fact-based reporting on our health. From blogging platforms Tumblr and LiveJournal to linchpin publications Bitch and Jezebel to private and semi-private groups of people with the same issues, for a while it seemed like the Internet could deliver on the promise of creating networks of knowledge in ways that mattered, filling the gaps where traditional media failed.

But by the time I was doing a deep dive on LEEPs, the online landscape had transformed entirely—in no small part because of social media, especially TikTok. The short-video sharing platform has become a major source for health information, especially for young women. In 2024, a survey study in the journal JMIR Infodemiology found a majority of U.S. women between 18 and 29 used TikTok for health information. Users post about vaginismus, birth control, orgasms, squirting, perimenopause, endometriosis, fibroids: I could go on. Some of these videos are created by health professionals, but many AFAB people post in the spirit of helping others through sharing their own experiences.

When I type in “birth control” on TikTok, the results are as follows: a “wellness”-focused woman encouraging natural planning, i.e. tracking your menstrual cycle to understand when you might be ovulating; a self-described nutrition coach listing ways the pill supposedly “robs us of our health;” and a sex educator responding to a question about birth control that doesn’t involve hormones.

In some ways, this knowledge ecosystem seems like an outcrop of the activist efforts of yore, grounded in information-sharing between peers and often using the language of increased bodily autonomy. Topics like hormonal birth control’s effects on the body are sometimes grounded in
legitimate concerns. Although these contraceptives are both considered safe overall and highly effective at preventing pregnancy, rare life-threatening complications can occur. There is research investigating the link between birth control and chronic inflammation that can lead to cardiovascular problems, blood clots, and mood disorders. Meanwhile, for methods like intrauterine devices (IUDs), for example, some report extreme pain during insertion, feeding into concerns that women and AFAB people’s pain is being dismissed by health-care providers.

More problematically, however, discussion online about birth control can quickly veer into right-wing misinformation territory, inflaming fears in an effort to get people to abandon contraceptive use altogether.

And in countries like a post-Roe U.S., where some states are increasingly implementing restrictive abortion laws, the stakes of an unwanted pregnancy can be high, says Dr. Jenny Wu. Wu is a medical resident in the department of obstetrics and gynecology at Duke’s School of Medicine; she studies women’s reproductive health information shared on TikTok.

“It’s a complex conversation to navigate with my patients, when they tell me they don’t want hormonal birth control and they want to do natural family planning in a state where we have limited abortion access,” shares Wu from her home in North Carolina, which in 2023 banned abortions after 12 weeks with limited exceptions. (Both surgical and medication abortion is legal in Canada and free to those with access to territorial or provincial health care.)

Wu says the level of misinformation propagated online about reproductive health is contributing to increased levels of distrust from her patients overall. This climate makes it more difficult for Wu and other doctors to have these conversations about proper gynecological care, but it also can mean people don’t go see her at all, don’t receive proper care, don’t get the contraceptives they need or access to screening tests to detect potentially life-threatening diseases. But mistrust of the health-care system, especially for at-risk populations, is nothing new.

*

Underlying the relatively recent phenomenon of online misinformation is the much longer, checkered history of gynecological medicine. In Canada, abusive medical practices like the forced sterilization of Indigenous women are ongoing. Meanwhile, many AFAB people and racialized people feel their symptoms are routinely downplayed or dismissed by health-care providers. It’s not hard to understand why some people would want to avoid the medical system altogether.

Tracey Lindeman is a longtime Canadian journalist and author of BLEED: Destroying Myths and Misogyny in Endometriosis Care. Endometriosis, in which tissue similar to the lining of the uterus grows elsewhere in the body, is notoriously under-researched, misunderstood, and underdiagnosed, which can lead to years of pain and suffering for those living with the condition.

“Endo is a super lonely disease, because you just feel like no one can really understand you and how much pain you’re in,” Lindeman, who lives with endometriosis, shares. For endo patients, frustrating repeated encounters with the medical system can feel more like gaslighting than care. In BLEED, Lindeman writes about asking her boyfriend to write a letter confirming that they didn’t want children in order for her request for a hysterectomy to be taken seriously. Another woman she speaks to experiences a pelvic exam so rough she files a sexual assault complaint; others still are denied referrals to a specialist or have their requests for pain relief dismissed.

Online groups can be a boon to these patients. There are thriving communities, like Nancy’s Nook Endometriosis Education on Facebook, with roughly 213,000 members, that offer a network of information and crucial support—and, just as importantly, the knowledge that those going through this are not alone.

But health influencers hawking cures of dubious provenance and efficaciousness feed off the need of those who turn to the Internet to self-manage their health. Much of the content paints itself as “natural,” implying it is better than “chemical” remedies. Looking up videos about LEEPs, I immediately stumble upon an account that is selling a course on how to “naturally” clear human papillomavirus, which can cause cervical cancer. Another “plant-based health” account shares a video about how “chemicals” cause endometriosis and that you can heal it without hormonal or surgical intervention. These accounts are selling supplements, creams, and cycle trackers, all ways to supposedly take control of your own health or body.

Many of these solutions are obviously farfetched; others have a “science-y” veneer of plausibility about them. But for those people who have been ignored, traumatized, or abandoned altogether by formalized health care, these options may feel like the only solution.

“[The wellness industrial complex] is capitalizing on desperation,” says Lindeman. “People are desperate for help, they’re desperate for answers, and they’re not getting that help, and they’re not getting those answers the conventional way, and so they become really vulnerable to online influencers and online [gynecologists] who are proposing information that lets them maybe try to manage it themselves.”

Enduring racism and sexism in the health-care sector; traumatic personal experiences when seeking treatment; the explosion of influencers promising to help reclaim power over your own body: these all feed into one another so that AFAB people delay the treatment they need, suffer needlessly, and even die younger. We need ways to circulate accessible, evidence-based information, both from other women and AFAB people and medical professionals, which build momentum to tackle these much larger problems together, instead of isolating us even further.

*

A year after my diagnosis, I sat in a Montreal-area hospital, clad in a medical gown and socks, clutching a small piece of yellow paper. I didn’t feel like I had all the information I needed to make a decision about whether to have the LEEP, so I had scribbled down a list of questions for my doctor.

But I was called into the OR with no chance to speak to the doctor beforehand. Instead, I was ushered onto the operating table. As he applied local anesthetic to my cervix and inserted the wire into my vaginal canal, I asked him: “So… should I be worried about any sexual side effects?”

“No, no, I have never heard of this,” he replied.

With the loop still inside me, he rattled off what to expect post-surgery. In a daze, I heard the words “heavy bleeding.” “So a lot of bleeding afterwards is normal?” I asked. “No! Go to the ER if you start bleeding,” he repeated.

The whole thing was over in a matter of minutes. I stumbled off, the yellow paper crumpled and unused.

For a long time after the procedure, I felt confused and irritated at myself for not being a better self-advocate. I could have refused to undergo the procedure if I wasn’t satisfied with the level of information I had been provided. Why hadn’t I been able to say what was on my mind?

Sharing my story helped, because I started to realize just how common LEEPs were. It helped assuage my fears that I was necessarily on the road to cervical cancer. Reading accounts like those from Lindeman, who experiences doctor anxiety after a lifetime of poor medical encounters, helped reassure me that I wasn’t alone.

Is sharing stories online enough to take control of our health? In some ways, yes. The Internet has become a lifeline for many Americans seeking medication abortions. Lindeman says journalists pay attention to what is being said online and amplify concerns to a wider audience.

Meanwhile, after finding that the majority of videos about IUDs on TikTok mentioned pain, Wu shifted the way she practices: “I [now] offer patients something for pain before any IUD placement and really before any gynecological procedure.” In 2024, the Centers for Disease Control and Prevention, the United States’ public health agency, even updated its recommendations for IUD insertions to include discussions of pain management.

And in 2023, a year after my own LEEP, a study in The Journal of Sexual Medicine was published exploring healthcare providers’ limited knowledge of post-LEEP sexual dysfunction and the resources patients used to cope—potentially the first ever study to look at the difference in patient and health-care provider perspectives when it comes to LEEP treatment. It found that there was “misalignment” between the two and recommended not only further research into sexual dysfunction symptoms, but also better education and training for providers, and better support for patients who do have negative outcomes.

These are heartening indications that when you share your health experiences, people are listening. The question remains: how do we translate these types of discussions into improving health outcomes for all AFAB people—especially when research into health problems that affect us is still underfunded?

It starts with finding ways to pair networked knowledge with collective action, because the power of social media is ultimately limited. “It’s the personalization of systemic problems,” points out Lindeman. “[You’re] continuing to focus on what you can do as an individual, instead of attacking the systems that are responsible for such a deficit in care.”

Social media may give us the reassuring impression of solidarity. In reality, it is atomizing, incentivizing a competitive attention economy; a billion voices speaking over, but not always to, one another. The collectives of the women’s health movement knew that to build power, you must do it together, through communities of care.

Perhaps we have to start by relearning that lesson–even if it means tearing ourselves away from our phones.

JAC D.B. is a writer and editor based in Tiohtià:ke/Montreal. A science research communicator, jac is deeply invested in health-care accessibility, reproductive justice, and feminist history. She co-writes notyrgirls, a newsletter about youth, gender and culture.