Sara Manitoski died in her sleep on an overnight school trip last year. A coroner recently confirmed the cause of death was toxic shock syndrome.
Toxic shock syndrome is a rare, life-threatening complication of a bacterial infection. It can happen to anyone.
"Toxic shock syndrome is a situation where a particular bacteria, Staphylococcus aureus, colonizes in an area and releases a toxin," Dr. Alyssa Dweck, an OB-GYN in New York, told BuzzFeed News. S. aureus is typically the culprit, but another type of bacteria, group A Streptococcus, can also cause toxic shock-like syndrome or TSLS.
Either way, TSS is rare. Since the 1980s the annual rate in the US has hovered at around 1 per 100,000 people, according to the US Centers for Disease Control and Prevention (CDC).
Once the toxins are released by the bacteria, they can enter the bloodstream, triggering an immune response that damages other tissues and organs in the body. The symptoms include a sudden high fever, low blood pressure, and a sunburn-like rash covering the body, Dweck said. TSS can progress rapidly and lead to kidney failure, shock, sepsis, or death in a matter of hours after the onset of symptoms.
The bacteria must be present in or on the body for TSS to occur. S. aureus normally lives on the skin or in the respiratory tract, nose, vagina, and rectum and about half the population carries the bacteria without any symptoms or problems. Not all staph or strep infections will lead to TSS.
In 1980, there was a spike in cases of TSS among women who used a highly absorbent type of tampon for a prolonged period of time. However, TSS can happen to anyone, including men and children, and other risk factors include skin wounds, recent surgery, bone infections, the use of barrier contraceptives, burns, and taking medication that suppresses the immune system. About 50% of all reported cases of TSS are not menstruation-related, according to Dweck.
So why exactly is TSS linked to tampons and what does this mean for menstruating women?
Tampons are still safe to use and the highly absorbent ones linked to TSS in the 1980s have been removed from the market.
Tampons alone do not cause TSS. They are not contaminated with bacteria or toxins — these come from our bodies. "The bacteria has to be a natural inhabitant of the vagina, and it's something about the highly absorbent tampons or just having something in there for a long time that tends to predispose to those toxins being released," Dweck said. Younger women tend to be at higher risk.
After the rise of menstruation-related TSS cases in the 1980s, many manufacturers changed their ingredients, Dweck said. As a result, the number of cases of TSS have plummeted — which is partially due to increased awareness about TSS and better education about safe tampon use.
Today, the Food and Drug Administration (FDA) regulates tampons as medical devices and manufacturers have to meet strict safety standards. Most tampons are made from a rayon-cotton blend and they are totally safe to use. Some brands offer 100% cotton or organic tampons, but these do not differ in terms of safety or absorbency. There is no evidence that tampons containing rayon will increase your risk of TSS. It's really about how absorbent the tampon is and how long it's left in the vagina, Dweck said.
Besides, tampons aren't the only culprit. "Anything that's left dwelling in the vagina for a long time can increase the risk of infection, including TSS," Dweck said. These include menstrual sponges or cups, diaphragms, and condoms.
Fortunately, you can reduce your risk of toxic shock syndrome, which is treatable if caught early.
If you take a few simple precautions during your period, you can reduce your risk of developing TSS. "Use the least absorbent tampon for your flow, change it frequently during the day, and leave it in no longer than 8 hours — which is long enough to wear it during a full night of sleep," Dweck said. If you are bleeding heavily, change your tampons even more often.
Additionally, you should only wear tampons when you are on your period. "A lot of women will come in who wear tampons every single day of the month because they don't want discharge — do not do this," Dweck said. The risk of TSS is still there when you have something in your vagina for a long period of time — including menstrual cups.
In recent years, menstrual cups have been touted as a safer alternative to tampons, but new evidence shows they can also lead to TSS. So make sure to use your menstrual cup the same way you would use tampons, which means emptying it frequently and not leaving it in for long periods of time.
If TSS is caught early, it can be treated with antibiotics and IV fluids, Dweck said. So it's important to look out for symptoms. "If you have a rash that looks like a sunburn, or a sudden high fever and drop in blood pressure with an associated menstrual period and tampon, go to the ER or seek medical care immediately," Dweck said.