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It’s rare, but if it does happen to you, the effects can be devastating. So how much should we be concerned about toxic shock syndrome? Alexandra English investigates
We’re living in a period-positive moment. The tampon tax was abolished in January after an 18-year campaign by several organisations, including the publisher of this magazine, to have it removed; an influx of period trackers such as the apps Clue and Moody Month, and even your Fitbit, allow you to track everything from your mood to the intensity of your cramps to give greater insight into your health; initiatives such as The Period Project donate pads and tampons to homeless women; and Woolworths has partnered with the charity Share the Dignity to donate five cents from every sanitary item sold to help women in poverty. Our health is centre stage like never before, and yet, when it comes to menstrual-related toxic shock syndrome, women are still suffering — even dying — and most of us don’t know why.
We’ve all been there: you use a tampon, forget about it for a little too long (ironically, the magic of the little cotton bullets) and no matter how old you are, the voice of your mother and every PE teacher you’ve ever had comes booming into your head: You’re going to get toxic shock syndrome and you’re going to die. But the warnings about TSS have been simplified to the point that they leave out one crucial message: there’s more to TSS than leaving a tampon in.
For most women, their closest encounter with TSS is knowing a friend-of-a-friend-of-a-friend who had it. So mysterious is it that one of my friends tells me she thinks the condition is made up. She’s not alone in that. When I google TSS, I trip into a rabbit hole of Big Pharma conspiracy theories and conflicting science. Mostly, though, there are stories about women being hospitalised, losing limbs and dying from TSS, with an emphasis on how long they left their tampons in. This is perhaps the first and most terrifying myth about TSS: that something so banal (your mind slips) automatically leads to something so catastrophic (amputations, death).
It’s while I’m climbing my way out of this information vortex that I come across the story of Peyton Caples from Ventura, California, who survived TSS as a teenager, and decide to ask her about the reality of TSS. In 2013, when Caples was 15, she used a tampon after showering and immediately felt ill. “I got dizzy, nauseous and thought I was going to pass out,” she says. Caples didn’t see a connection between her tampons and feeling sick, so she continued to change them regularly throughout the week. “It got worse. I couldn’t eat. Everything hurt. I had a fever of 104 [40 degrees Celsius] that wouldn’t break.” Caples was taken to hospital after collapsing for a second time and was transferred to ICU. “I was put on all forms of life support except ventilation,” she recalls. “My kidneys, liver and heart were failing.” Luckily, an antibiotic kicked in and Caples started to recover. “I felt a lot better, but it hurt to walk. Since I’ve had toxic shock syndrome, I’ve developed tons of allergies, an autoimmune disease and asthma.”
Dr Rebecca Deans is a general and adolescent gynaecologist at Sydney’s Royal Hospital for Women, one of Australia’s leading hospitals. When I ask her where the TSS panic came from, she tells me it all started with a tampon called Rely, made by Procter & Gamble, which was introduced into the US market in 1978. “It was super absorbent and the idea was you could leave it in for your whole period,” she explains. While other products were made from cotton, Rely’s proud point of difference was its synthetic materials: polyester foam cubes and chips of carboxymethylcellulose (CMC) gel. While the company did extensive research on the tampon’s materials, not enough was known then about how the body’s bacteria would react to a foreign object. Women would leave these tampons in for longer, not knowing that the CMC gel acted like a petri dish for bacteria, while the foam cubes increased the surface area for proliferation. In a 2011 study from the University of Illinois, Dr Sharra L. Vostral wrote that in 1980, of the 890 known cases of TSS, 91 per cent were associated with menstruation.
The incidence of TSS began to fall after Rely was taken off the shelves, and while it was never sold in Australia, other super-absorbent products were implicated in the message that the tampon’s materials cause TSS. Welcome to myth number two. A deep dive into research on the relationship between tampon material and TSS brings up results that are — surprise! — conflicting.
Philip Tierno, professor of microbiology and pathology at the New York University School of Medicine, has been researching TSS for 30 years and in 2016 told The Guardian, “There is no doubt that cotton tampons are the safest.” But research from the University of Lyon in France last year disputes this. The study, led by Gérard Lina, compared tampons made of cotton, rayon, viscose and a combination of all of the above to see if the bacteria multiplied and produced TSS-causing toxins. The results indicated that cotton isn’t inherently safer: it wasn’t the material but the amount of air between the fibres that seemed to increase bacterial growth. But in another turn, Brittney Davis, a TSS survivor who lives in Washington state in the US, tells me a synthetic tampon was implicated in her case, but not because of the components or how long she left it in. Rather, it was the sharp fibres that caused microscopic scratches, giving the bacteria easy access to her bloodstream. “I was in a medically induced coma that stretched on for weeks,” Davis says. “I had organ failure and was placed on dialysis. My chance of survival was 30 per cent.” Once she woke from her coma, Davis spent months in hospital, struggling through organ failure and pneumonia; she also developed a heart murmur and a benign pituitary tumour from the trauma. The damage to her feet was so severe that doctors initially thought she would be a double amputee. “I fought hard to keep as much of myself as I could,” she says. Davis lost part of one foot and her toes, and had to learn to walk again.
It’s stories like these that (understandably) made women rethink tampons and opt instead for what seemed like a safer alternative: the silicone menstrual cup. Hello, myth number three. In 2015, doctors in Canada reported the first confirmed case of TSS from a menstrual cup: a 37-year-old woman who was using one for the first time. “Anytime you’re housing a pool of blood in your body in an area where there is bacteria, you’re increasing the risk,” Dr Deans says. Lina’s study also found that cups carry slightly more risk than a tampon because of the amount of oxygen that enters the body along with the cup. “Menstrual cups, cotton tampons and organic tampons aren’t any different to other tampons,” it concluded.
At this point, it’s easy to see why so many women are so confused. If leaving a tampon in doesn’t necessarily cause TSS, nor does it necessarily come from the materials in the tampon, and a cup isn’t a safer option, what is going on? Dr Deans comes to the rescue with a fact that should be shouted from the rooftops: to get TSS, the bacteria must already be in your body.
A quick science lesson: Staphylococcus aureus (Staph) or the group A Streptococcus (Strep) bacteria are usually harmless and it’s normal to have them on our skin. “It’s when it goes to a place in the body where it’s not supposed to be, or when it grows in one particular location that it becomes a problem,” Dr Deans says. In 95 per cent of menstruation-related TSS, Staph is the culprit. It goes out of bounds and releases toxins that cause your immune system to go haywire, shutting down organs in an attempt to preserve the heart and brain. It’s often referred to as ‘period disease’ because, for the bacteria to multiply they need a place to hang out, like a tampon.
Maegan Boutot, an epidemiologist and content writer for Clue, explains it this way: “A person without exposure to the bacteria won’t get TSS, but having the bacteria doesn’t mean you will develop TSS.” She says the elements needed to contract TSS are like a perfect storm: “You have to have a lot of the bacteria, the bacteria needs to produce the toxin and the toxin needs to enter your bloodstream at a high enough level to make you sick.”
These days, TSS is classified as a rare condition that affects about three people per 100,000 each year in Australia. Dr Deans footnotes that with the fact TSS isn’t a notifiable disease here, so the numbers of those incidences that are related to tampon use are unclear. In an ideal world, people who carry Staph would know they are at risk and could make better choices about their products, but, according to Dr Vostral, there’s no standardised check to see whether Staph is permanent or transient for some women. So how about vaccination? In 2016, researchers from the Medical University of Vienna’s Department of Clinical Pharmacology developed a vaccine. Dr Deans is doubtful it would be beneficial. “When you do a vaccine, you eradicate the bacteria from the entire body, which wouldn’t necessarily be a good thing. What’s bad for one part of the body is good for another.” What about the tampon monitor being developed by My.flow, a startup that, in 2016, unveiled a tampon that pings your phone when it needs to be changed? “Cool concept,” she says, “but everybody’s got a brain.”
So, is the panic about TSS justified? It depends. Yes, it’s real, but as long as you’re using tampons and cups correctly and keeping an eye out for symptoms, Dr Deans says you should be safe. This means using the lowest absorbency tampon possible and changing it every four to eight hours. She says it’s fine to sleep with a tampon in, as long as you insert it right before bed and take it out as soon as you wake up. As for cups, Lina’s study found that Staph can gather on them in the form of a water-resistant biofilm. To reduce the risk of reinserting a contaminated cup, have two on rotation so you can boil one while you use the other. Cups should be removed after a maximum of 10–12 hours. If you left in a tampon for longer than recommended and experience a high fever, vomiting, diarrhoea, dizziness or a flat, sunburn-like rash (usually on the palms of your hands or the soles of your feet), call your doctor and make sure you tell them where you’re at in your cycle.
While the condition is rare and the concern perhaps a touch overwrought, the stories of women such as Caples and Davis should not be discounted. Nor should we become complacent. The key is education. The Royal is the only women’s hospital in New South Wales with a gynaecologist dedicated to adolescents, which Dr Deans says is pertinent for young women who need to learn about menstrual health. And thanks to this era of period positivity, gone are the days of girls educating themselves solely via teen magazines; now they can get information on TSS straight from someone who has experienced it. “Social media has helped raise a ton of awareness for TSS,” Caples says. “I will get a message from a girl asking what she should do if she thinks she has TSS, and I’ve had people thank me for educating them.”
Dr Deans agrees. “In the past, we tended to cover up. We didn’t talk about periods, we didn’t talk about toxic shock, but there’s a medium now. Social media is fantastic for opening up awareness, as long as it doesn’t cause alarm where there doesn’t need to be any. Remember, there isn’t a surge of toxic shock at the moment.” So the state of play is: be alert but not alarmed? “Exactly.”
This article originally appeared in the May 2019 issue of Harper’s BAZAAR magazine