First came the flu-like symptoms, then renal failure, before two heart attacks. It was 2012 and 24-year-old model Lauren Wasser was experiencing the life-threatening symptoms of toxic shock syndrome (TSS). Doctors gave her a one percent chance of survival, placing her into a life-saving, medically-induced coma.

“I woke up a week and a half later and had no idea what had even happened. They pumped me full of 80 pounds of fluid. I woke up hella fat. I’m obviously very tiny, so when I woke up I was really confused,” Wasser told me on a sunny morning in New York City. “From there my feet were on fire and gangrene set into my right leg and my left foot. There was no option. I had to amputate my right leg.” In 2018, her left leg had to be amputated as well.

“I was in a wheelchair for eight months with no right leg. They had to shave my head. My whole identity was completely stripped from me. I had to really rebuild from inside-out,” Wasser says.“I tried to commit suicide, I almost took my own life because I didn’t know that I would ever be what I was. I didn’t think I would ever be loved again. I didn’t know if anyone would ever look at me again.”

But now, nearly a decade later, Wasser has golden prosthetic legs—she also plays basketball and is training for the New York City Marathon. She considers herself very lucky.

Wasser is a survivor of tampon-induced toxic shock syndrome, a condition caused by an excess of Staphylococcus aureus bacteria in the body, which can produce a deadly toxin in the bloodstream. TSS first pierced the American imagination in the late 1970s, after a slew of young women across the United States became deathly ill. By the 1980s, TSS was infecting the population at about a rate of 6 in 100,000 people.

Scientists had realized that high-absorbency tampons, with synthetic chemical agents, were responsible for the uptick in TSS reports. In 1980, the Center for Disease Control reported that 91 percent of TSS cases were associated with menstruation. This led researchers to study the issue where they could, but it wasn’t until a few years later that TSS became the subject of political frenzy. The Boston Women’s Health Book Collective, along with other consumer advocates, lobbied the US Food and Drug Administration (FDA) to recall a high-absorbency tampon line by Tampax. They were, of course, met with resistance in Ronald Reagan’s America, where deregulation was sacrosanct. (I like to imagine a surly Saint Reagan ambling around the Oval Office, arms akimbo, bitching about the creation of a Tampon Task Force, decrying its regulatory evils.)

With slight advancements and regulation in the feminine hygiene industry, the infection rate has declined to about 1 in 100,000. Still, the average woman uses 16,000 tampons throughout her lifetime. Each year people spend upwards of 2 billion dollars on menstrual hygiene products and yet there are significant and worrisome research gaps in our understanding of tampon safety and usage. In prior years, the federal government sought to regulate tampon packaging (clearer labeling, for instance, was one concession manufacturers made in the 1980s). And yet, as no efforts were made to regulate tampons themselves, the appearance of substantive regulation and research has provided consumers with very little knowledge of what they are putting into their bodies. Dioxin, for instance, is a highly toxic chemical compound that exists in trace amounts in tampons—and yet, the FDA relies on corporations to accurately self-report dioxin levels in tampons, with no external oversight.

Research is integral to the battle to keep corporations honest on the consumer’s behalf, but on the science side, the stigma of menstruation is responsible for the imbalanced ratio between people prone to TSS and research committed to understanding it, according to Sharra Vostral, author of Under Wraps: A History of Menstrual Hygiene Technology and Toxic Shock: A Social History.

The average woman uses 16,000 tampons throughout her lifetime. Each year people spend upwards of 2 billion dollars on menstrual hygiene products and yet there are significant and worrisome research gaps in our understanding of tampon safety and usage.

“When a situation is seen as a stigma or a debility, especially in the 19th century, why would epidemiologists or physicians want to research it when it wouldn’t help promote their career?” Vostral explains. “The problem of menstruation, as a socially stigmatized bodily function, has made it difficult for people to study the issue historically.”

Throughout college and graduate school, Vostral worked for the National Park Service as a park ranger, giving historical tours. Tourists predictably asked questions about everyday life in a historical context and inevitably asked what women did during that time of the month. (“What did women on the Oregon Trail do?”)

In the 1990s, Vostral began researching the social history of menstruation and, thus, feminine hygiene products. She found herself in the frustrating position of defending her choice research topic—even though her stakeholders included half the population. “There’s how many thousands of books on the Civil War? I think we can have one or two on women’s health and menstruation and the history of menstrual products.”

The first tampon was invented by Earle Cleveland Haas, a Colorado-based doctor whose wife, a ballerina, struggled to dance while wearing the bulky pads of the era. Haas obtained a patent for the tiny cotton technology in 1933 before Procter & Gamble began mass production of the modern tampon for American consumers under its newly-founded subsidiary, Tampax. Until the mid 1970s tampons were made entirely of cotton. In 1975, Tampax introduced Rely, marketed as a highly absorbent tampon but made with harmful synthetics, namely carboxymethyl cellulose and polyester. (Its slogan: “It even absorbs the worry!”)

“The problem of menstruation, as a socially stigmatized bodily function, has made it difficult for people to study the issue historically.”

“They certainly put out a product that was unique and different!” says Dr. Philip Tierno, Director of Microbiology & Immunology at New York University Langone Medical Center. Tierno, who looks like a clean-cut Santa Claus and possesses a wry sense of humor—“Dr. Germ,” he calls himself—has more than 40 years of experience in the subject, has been deposed in numerous court cases, and has advised on legislation related to tampon safety. “It turns out that there were problems that were unimagined because no one did any research. They didn’t look at the effect of the tampon on the vaginal vault with its myriad bacteria.”

Rely tampons created a new lane for super-absorbent tampons and the market became flooded with tampons containing synthetic chemicals, all of which failed to account for the homeostasis and pH levels of the vagina. One of the highly absorptive tampon ingredients, viscose rayon, is a synthetic chemical derived from natural sources (one of these natural sources, I’ve learned, is sawdust) that is still used in tampons today.

“Hopefully we can hold these companies that make [tampons] accountable. And make them safe for us,” Wasser says. “It’s wild. We’re in 2020 and this shit has been happening since the ’80s. Killing and injuring women.” Despite decades of TSS research, advocacy groups still struggle to lobby the industry—the biological complexity and risk factors associated with TSS aren’t so straightforward as to just be slapped on label packaging.

“This is a totally preventable disease.”

“People really don’t know that about their body until, as with Lauren, it’s too late.” Vostral explains. “It’s fascinating and complicated and that’s why the messaging is so difficult—it’s not a soundbite.”

How tampons induce TSS is indeed complicated. Staphylococcus aureus (staph), the culprit bacteria, is present in about 20 percent of women. Synthetic chemicals, as in Rely, can create conditions under which staph can germinate to produce a toxin, TSST-1, that leads to toxic shock syndrome. So one’s risk exposure to tampon-induced TSS is caused by a constellation of factors—including what type of menstrual product is used and for what duration, the existing presence of staph in a woman’s microbiome, and whether or not an individual has sufficient antibodies to fight off staph infections. “It’s sort of a yes-no flow chart,” Vostral told me. (I wasn’t sure if she was making a pun.)

To avoid TSS, Dr. Tierno recommends people use pads or 100 percent cotton tampons, and warns against sleeping while using a tampon, as people who use a single tampon over a long duration increase contraction chances (“Some people are late sleepers!”) There is also an antibody test now available, which will inform women of their resistance to bacteria that cause TSS.

In the late 1970s, Tierno’s wife was reading about a young healthy nurse who died from complications related to staph. An isolated death became a trend, in which otherwise healthy women were suddenly dying. The common culprit in these cases, the Center for Disease Control determined, was staph. Tierno had just finished his thesis on Staphylococcus bacteria. It seemed, to him, fairly straightforward: these highly-absorptive tampons were the cause of disease. After researching, Tierno confirmed his hypothesis and detailed his findings in letters to CDC, FDA, and Procter & Gamble. These tampons were turning vaginal vaults into “toxin factories.” (“I try to keep it in lay terminology so that everybody is on the same page,” Tierno tells me.)

The FDA and CDC wrote back, telling Tierno they could not devote funding to research such an issue. P&G replied, offering to fund Tierno’s research, but only if the company could quash inconvenient findings. Tierno rebuffed their offer.

“There’s more research done on the safety, I’d say, of coffee filters than a hygiene product that is so intimately associated with a woman’s body.”

In September 1980, the first recorded death was attributed to Rely tampons. Patricia Kehm, of Cedar Rapids, Iowa, an otherwise healthy mother of two, died after using Rely tampons over a four-day period. P&G denied the link between Rely and the surge in toxic shock syndrome cases (between 1978 and 1980 the CDC reported 1,600 cases). “Pat Kehm died because Procter & Gamble let her die,” Tom Riley, Kehm’s family attorney told a jury, which awarded the Kehm family $300,000.

Shortly thereafter, it surfaced that P&G’s own internal research proved a scientific causal link between its tampons (Rely) and incidence of TSS. In a Texas courtroom, P&G was accused of suppressing its own research. With mounting calls for accountability, tampon manufacturers began removing the most harmful chemicals from their products, with the exception of viscose rayon (sawdust, you’ll recall), which is still present in most commercially available tampons.

I asked Dr. Tierno if we should still be worried about toxic shock syndrome, given the decline in incidence rates. He nearly admonished me. “Yes, without question!” He exclaimed. “This is a totally preventable disease.”

Though Rely tampons were eventually removed from shelves, the consensus is that federal legislation is the only effective way to prevent TSS. And the fight for greater oversight that began with the Boston Women’s Health Book Collective in the 1980s is still being waged today.

All of this is how I found myself at Congresswoman Carolyn Maloney’s home on a rainy day in October. I arrived (sopping) at her Upper East Side townhouse and was greeted by a press aide who ushered me to the living room, which had been converted to a makeshift Zoom home-office. I waited while the Congresswoman put on her face. Staring down a troupe of several human-sized American flags, I wondered whether they were permanently stationed in the living room or if they were lugged out for special guests. Before I could reach a conclusion on the matter, Congresswoman Maloney greeted me in a sprightly fuchsia suit.

Congresswoman Carolyn Maloney photographed in her home in New York City. Photo by Alex Hodor-Lee.

Rep. Maloney, who has become near-synonymous with womens’ reproductive rights, has been working for almost a decade to pass the Robin Danielson Feminine Hygiene Product Safety Act (henceforth abbreviated to the Robin Danielson Act), named after a 44-year-old single mother of two who died after contracting TSS. A Democrat from New York, Maloney began working on the law in the late 1990s, introducing an earlier version of the bill in 1997, which Tierno helped to write.

In the late 2010s Maloney and Wasser teamed up to raise awareness around toxic shock syndrome, after Congresswoman learned of Wasser’s case. “I became interested in it because one of my constituents, a student, wrote me a letter, asking for information: ‘Was it true that tampons are associated with TSS?’ I started looking into it,” Maloney told me. “People who use hygiene products want to know what’s in them and know that they’re safe. Right now there’s no research being done on them. There’s more research done on the safety, I’d say, of coffee filters than a hygiene product that is so intimately associated with a woman’s body,” she pointed out.

Women’s issues are not a priority in Congress, she confessed. “The NIH should determine whether menstrual hygiene products that contain dioxin synthetic fibers and other chemical additives like chlorine and fragrances and whether or not they pose a health risk. We just basically want to give consumers the information they want and that they need. TSS is rare but deadly. We do not know the cumulative effects of exposure to these chemicals over time.”

Mahoney again introduced the Robin Danielson Act in 2019, but couldn’t rally enough of her congressional colleagues to support the bill. I remembered what Vostral told me: we just need to de-stigmatize women’s issues; only then can we begin to normalize and mobilize. As I got up to leave, Maloney thanked me. She expressed worry that women’s periodicals don’t want to raise awareness around feminine hygiene (and the maelstrom created by their products) because they may offend pharmaceutical advertisers—and thus muzzle, presumably, editors and writers. At that moment, I wanted to stand in front of those American flags and salute Big Tampon with a middle finger. Instead, I silently gazed at the raindrops slowly trickling down her window pane.

“If men’s dicks fell off, this never would have happened to me. If Donald Trump’s dick fell off this would have been corrected real quick. That’s always what I say. It’s because we’re women. We have to fight for everything.”

I asked Tierno why there’s so much resistance to the legislation—he worked on the first and second versions with Maloney. He told me what Maloney’s politesse probably wouldn’t allow her to freely say, which was this: “If men had vaginas, the bill would have been passed. That’s for sure. There’s no doubt in my mind.” Lauren Wasser, in her own obstinate way, echoed Dr. G. “If men’s dicks fell off, this never would have happened to me. If Donald Trump’s dick fell off this would have been corrected real quick,” she told me as embraced her prosthetic legs. “That’s always what I say. It’s because we’re women. We have to fight for everything.”

Wasser is still fighting. She has returned to the modeling industry, emerging as the face of Shiseido; she has also featured in campaigns for Missoni and Fenty x Savage. Overcoming adversity, Wasser is fighting to expand our ideas about beauty and perfection: “I love that I’m creating a lane that doesn’t exist.”

For all of her resilience, it’s evident in speaking to Wasser that the weight of her experience, and the experience of many women who have battled TSS still anchors heavily in her mind. It’s also evident in speaking to her and Congresswoman Maloney that this isn’t simply about TSS. This is about recreating a world of fairness; tampons, viscose rayon, biocatalytic technology, and the Robin Danielson Act—they’re all indicative of gender inequity.

I asked Sharra Vostral if she thought cultural attitudes towards menstruation were changing. There was faint optimism in her tone. “I think there’s a generational thing. Millennials and Gen Z really want to be much more environmentally conscious, using menstrual cups, reusable pads and they’re very concerned about that.” She pointed to Rupi Kaur, a Canadian photographer and poet who went viral after her image of blood-stained sweatpants was taken down from Instagram; the tech behemoth adjudged it to violate its community guidelines. I pointed out Petra Collins’ controversial period tee and Sandy Kim’s photography to substantiate that attitudes are, in fact, changing. “There’s not the same socialization to stay quiet about menstruation or dismiss it,” she observed. “I think there’s a shift. It’s an incomplete revolution.” She told me I was the first male writer to interview her, which to her, signified some sort of progress. (“Or maybe you’re the second male reporter,” she quickly corrected herself.)

To Vostral, tampon technologies are simply efforts at “passing”—a term borrowed from the parlance of sociology, in which individuals are able to perform within social groups or classes undetected. When Dr. Haas’ wife advocated for a newer technology that would allow her to dance without fear of spotting or leakage, she was passing. In that way, the tiny cotton inserts are a metaphor: tampons designed to advance women, built with the blindspots (and inequity) of men’s thinking. Thus, the fight continues.

Lauren Wasser’s own fight is fueled by a limitless reservoir of optimism. I asked her if she ever feels embarrassed by the attention she draws as The Girl With the Golden Legs. “No, I love it,” she says. “Kids are always staring at me and pointing. I tell them I’m like a robot. And they say things like, ‘Mommy, I want a golden leg!’ It’s something that’s inclusive. It’s educating. It shows people: I’m no different than you.”

She paused, before adding: “There’s no reason I should be here—medically, or in general. This is my purpose.”