Top things to know
- Toxic shock syndrome (TSS) can be deadly, but it’s very, very rare. About 1 in 100,000 menstruating people will develop TSS per year in the United States.
-To develop TSS, you need to be exposed to the bacteria that causes it. If you don’t have the bacteria, you won’t develop TSS.
- The tampon brand that associated with cases of TSS in the late 1970s and early 1980s was taken off the market in the 1980s
- Healthcare providers suggest replacing your tampons every 4-8 hours, clean your menstrual cups, and wash your hands before inserting anything into your vagina
What is Toxic Shock Syndrome?
Toxic shock syndrome (TSS) is a rare but life-threatening condition caused by a toxin released by the bacteria Staphylococcus aureus and Streptococcus pyogenes (1,2). More commonly, we refer to these bacteria as staph and strep, respectively. TSS associated with menstruation and the use of menstrual products is usually caused by staph bacteria (3,4).
Why exactly TSS occurs is not very well understood. You need to have the bacteria to develop TSS, but just having the bacteria doesn’t mean you’ll get TSS. Some people have staph and strep bacteria naturally on their skin and in their orifices, such as the vagina and nose, but never have health problems due to the bacteria(4-6). Usually, an interaction between having the bacteria and some factor causes TSS.
For example, menstruation changes the pH of the vagina (6), making it easier for TSS bacteria to multiply. Alternatively, if a person has a staph or strep infection on their skin, the toxins released by the bacteria may enter the bloodstream through a cut or other wound and cause TSS. Children and young adults may be at increased risk of developing TSS (6,7), as their immune system is less able to control normal colonization of staph and strep bacteria.
Fortunately, TSS is rare. Estimates from 2000-2006 suggest the risk of TSS is about 1 in 100,000 American people who menstruate (7), and only 24 people were diagnosed with TSS not caused by strep (so presumably mostly by staph infections) in 2017 (8).
Although the risk of TSS is very low, there was an outbreak of TSS in the late 1970s and early 1980s that was linked to a specific tampon and to some tampon materials. During this outbreak, the risk of TSS was 6 to 12 times higher than it is now (3). Today we better understand TSS, and the United States government has put stricter requirements on tampon manufacturers for testing (6) and labeling, making tampons much safer.
The Toxic Shock Syndrome outbreak in the United States
TSS was first named in 1978 (4,6), but it entered the public consciousness in 1980 when an outbreak occurred in the United States. In January 1980, the United States Centers for Disease Control and Prevention (CDC) received reports that otherwise healthy young women were suddenly becoming sick with TSS (6,9,10). Between 1979 and 1980, 1,365 American women were diagnosed with TSS (3).
Initial interviews with people who had TSS led to the suggestion that menstruation might be associated with TSS, but more information was needed to figure out why these cases were suddenly happening. Researchers and physicians conducted interviews and multiple case-control studies to identify how women with TSS differed from women who didn’t experience TSS (9,10). Case-control studies compare people with a disease with people who don’t have the disease. In this situation, researchers asked women various questions about their behavior and health, including about their menstrual cycles and the menstrual products they used (6,9,10).
Ultimately, researchers confirmed the initial suspicions that TSS was associated with menstruation. They found that women with TSS were more likely to use tampons, specifically a tampon called Rely (6,9). This tampon was made of new synthetic materials and was supposed to be more absorbent than any other tampon available (6,9).
Although the parent company Proctor and Gamble tested Rely tampons, they were not required to be tested according to the standards of medical devices (6). This situation was not unique to the Rely tampon, however: all tampons released before 1976 were not subject to medical testing standards in the United States (6). Rely tampons were also not the only tampons to contain synthetic products, as many major companies were moving away from using all-cotton products in the 1960s and 1970s (6). After the initial outbreak, Rely tampons were pulled from the market in the United States (6).
After the major outbreak, the The Federal Drug and Alcohol Administration of the United States (US FDA) began requiring absorbency standards for tampons, which meant that descriptive words like “light”, “regular”, and “heavy” meant the same across brands (3,11,12). This standardization was met with pushback, both from tampon manufacturers and from researchers and medical professionals (12). Manufacturers didn’t like having to change their internal classification, while researchers began demanding improvements in tampon research, which had used saline (i.e. a salt and water mixture) as opposed to blood to define tampon absorbency (12).
Today, menstrual products are more rigorously tested and are safer than during the 1970s. Three synthetic materials, including the material Rely was made from, are no longer used (13).
Toxic Shock Syndrome causes and prevention
It’s still not well understood why menstruation and tampons contribute to the development of TSS. As mentioned, menstruation may increase the likelihood of TSS because the acidity of the vagina is lower during menstruation than during other parts of the cycle, making it more hospitable to the growth of staph bacteria (6). Tampons, including non-synthetics containing tampons (i.e. “all-cotton”), change the natural environment in the body. For example, tampons introduce oxygen into the vagina (13), which may help bacteria proliferate and lead to TSS. It has also been hypothesized that tampons, especially those with the now-banned synthetic components, may offer an ideal breeding ground for staph bacteria or may be digestible for bacteria and thus fuel proliferation (6).
Probably for all these reasons, healthcare providers generally recommend using the lightest-absorbency tampon needed, and regularly replacing a tampon every 4-8 hours (14).
Tampons are the most common factor in menstrually-associated TSS (15), but anything you put into your body poses a potential risk as it may introduce bacteria and/or oxygen. Very rarely, there are reports of people experiencing TSS after using menstrual cups and some contraceptive devices, like intrauterine devices (IUD) and diaphragms (4,16-19). It is important to follow general hygiene practices with any device you’re inserting into your body.
The best ways to protect yourself from TSS associated with menstrual products and contraceptive devices are the same general ways you can protect yourself from infection:
- Make sure you wash your hands with soap and hot water before inserting menstrual products or contraceptive devices and before checking your IUD strings.
- Regularly change your tampons and clean your menstrual cup and contraceptive barrier devices after every use.
If you’ve had TSS in the past, you should speak to your healthcare provider about which forms of menstrual fluid collection and contraception are best for you.
Although TSS is a very serious condition, it’s fortunately rare.
Toxic Shock Syndrome Symptoms: What you might notice
TSS associated with menstruation and menstrual products tends to be caused by staph infections. The symptoms of TSS from staph bacteria include:
- Changes to blood flow, such as dangerously low blood pressure (hypotension) and increased blood flow to the genitals and other parts of the body
- Rash and skin peeling on the extremities
- Massive organ dysfunction and failure
- Gastrointestinal symptoms, like diarrhea
- Muscle pain
- Neurological changes, such as confusion and loss of consciousness (2,4,6,9).
If a person is treated too late or if the colonization of bacteria is too strong, TSS from staph bacteria can result in death.
If you think you’re experiencing any symptoms of TSS, visit a healthcare provider immediately. The faster you receive treatment, the better your long-term prognosis.