In March of 2017, 16-year-old Sara Manitoski died during an overnight school trip. This week, Canadian officials determined that toxic shock syndrome (TSS) related to tampon use caused her mysterious death, according to multiple reports.
TSS affects fewer than one in 100,000 people in the U.S., according to data from the Centers for Disease Control and Prevention (CDC). Although TSS is rare, it’s also serious, so it’s important to know the symptoms ahead of time.
TSS is a condition in which a toxin produced by some types of staphylococcus and streptococcal bacteria get into the bloodstream.
Staphylococcus is commonly found in the body (about 30 percent of us carry it in our noses), and group A streptoccocus is also commonly found on the skin and in the nose and throat. But because many strains don’t produce TSS-causing toxins, the bacteria don’t always cause problems.
“Certain strains have the ability to express that toxin, which leads to a hyper-stimulation of your immune system that can cause multiple organs to shut down,” infectious disease expert Amesh A. Adalja, M.D., senior scholar at the Johns Hopkins Center for Health Security, tells SELF.
Although we don’t totally understand how TSS is triggered, the current thinking is that, “given the right environment, the bacteria become opportunistic and seize the conditions in order to cause the disease when the time is right,” Deena Altman, M.D., assistant professor of infectious diseases at the Icahn School of Medicine at Mount Sinai, tells SELF. But, “a whole group of events have to happen in order to get TSS,” Dr. Adalja explains. “It’s not like everybody that has staphylococcus aureus on their skin has to be worried about TSS. It’s not an everyday occurrence.”
In the case of tampons, that often means that a tampon is left in for too long (like overnight), Richard Watkins, M.D., an infectious disease specialist in Akron, Ohio, and associate professor of internal medicine at the Northeast Ohio Medical University, tells SELF. This can create an environment in which the bacteria can grow on the tampon and produce a toxin that gets into the bloodstream, affecting your organs.
But you can also get TSS from skin infections, cuts, burns, and after surgery, according to the U.S. National Library of Medicine, which also states that fewer than half of TSS cases are now linked to tampon use. “Non-menstrual toxic shock syndrome receives less attention but can affect anyone,” Dr. Altman says.
It’s easy to chalk up any health issues you have during that time of the month to your period, but TSS has some pretty distinct symptoms.
“With toxic shock syndrome, a person will usually—but not always—have a rash, fever, and a change in vital signs,” Frederick Friedman, M.D., associate professor at the Icahn School of Medicine at Mount Sinai and director for both the Division of Obstetrics and the Division of Generalists in the Department of Obstetrics, Gynecology, and Reproductive Science at the Mount Sinai Health System, tells SELF.
Although your period may cause cramping or headaches, you shouldn’t have a fever. In general, TSS causes more of a flu-like illness, Dr. Altman says. “You can have cramps, but they won’t be localized to the lower abdomen like they are with a period,” she says. “You will have muscle aches throughout the body, along with high fevers and a rash.”
People with TSS also may have the following symptoms, according to the Mayo Clinic:
- A sudden high fever
- Low blood pressure
- Vomiting or diarrhea
- A rash that looks like a sunburn, especially on your palms and soles
- Muscle aches
- Redness of your eyes, mouth, and throat
Again, TSS is rare, but it’s serious enough that you should do what you can to prevent it.
There are a few things you can do to lower your risk, especially when it comes to tampon use. The first is to change your tampon frequently, at least every four to eight hours, the Mayo Clinic says. It’s also important to use the lowest absorbency tampon you can, Dr. Friedman says. The Mayo Clinic also recommends alternating between tampons, pads, and minipads when your flow is light, if you can.
Because TSS can quickly progress to shock, renal failure, and death, you shouldn’t try to wait it out if you have symptoms and suspect you may have the condition. It’s important to get to the emergency room ASAP, Dr. Adalja says.