What is Toxic Shock Syndrome (TSS)?
TSS is a rare but life-threatening condition caused by bacteria entering the body and releasing harmful toxins. Almost all cases of menstrual TSS (mTSS) are caused by TSS‑toxin type‑1, produced by the bacteria Staphylococcus aureus. These bacteria are usually harmless, often found on the skin or in the nose and mouth. However, if present deeper in the body they can enter the bloodstream and release toxins that result in tissue damage, organ failure, and sepsis.
TSS can affect anyone of any age, for example from post-surgery infection or burns, but it is mostly associated with tampon use in young women. The average age of UK TSS cases is 19 because young individuals lack adequate antibodies to mount a sufficient immune response. However, it must be noted that mTSS is not purely restricted to tampons, because other vaginal products such as menstrual cups and contraceptive diaphragms/caps all carry a risk.
Due to the growing global prevalence of tampon use, mTSS is becoming more common in developing countries. The worldwide prevalence is estimated at 1 per 30,000 and whilst there are no exact figures, it is estimated that there are 40 TSS cases annually in the UK of which two are fatal – half of these cases will be caused by tampon use.
Due to the sale of very absorbent tampons, TSS incidence peaked in the 1980s. Changes in tampon manufacture helped halt this epidemic and numbers have fallen since. Consequently, mTSS has largely slipped out of the mainstream media and awareness of its causes and symptoms have declined year on year, whilst data shows mTSS incidence is rising.
Symptoms of TSS
TSS symptoms vary, but can include:
- High temperature
- Flu-like symptoms
- Widespread sunburn-like rash
- Lips, tongue, and whites of the eye turning bright red
- Difficulty breathing
These symptoms start suddenly and worsen rapidly, they are fatal if not treated promptly. However, if diagnosed and treated early, most individuals make a full recovery. This highlights the importance of raising awareness of mTSS and its symptoms amongst young women, as this information could save lives.
Long-term problems after recovery can vary depending on TSS severity. Reversible changes to hair and nails, muscle weakness, and memory loss are common, whilst more debilitating effects such as chronic pain, fatigue, PTSD, and amputation can occur if there is a delay in treatment.
TSS treatment involves antibiotics for the infection or purified antibodies known as ‘pooled immunoglobulin’ taken from donated blood. In severe cases, surgery or even amputation may be necessary to remove dead tissue.
For those who recover, morbidity is high with 30–40% recurrence, therefore individuals who have previously experienced TSS should avoid future tampon use. Consequently, TSS can repeatedly impact healthcare systems resulting in increasing societal costs, as TSS patients have a 3-fold greater cost of care and length of stay for treatment.
Researchers from the University of Vienna have developed the world’s first safe and effective vaccine against TSS. The vaccine, found to be safe and effective in a clinical Phase I trial, was developed from a detoxified Staphylococcus toxin. A Phase II trial with a larger test population has now started and although it will take some years before clinical use, an upcoming vaccine against TSS is an exciting prospect.
The Need for mTSS Education
mTSS can be effectively treated. However, this is a preventable disease, therefore the focus now lies with education and raising awareness.
TSS and menstrual health have historically been taboo subjects, which has resulted in these important topics often being brushed under the carpet during sex education across schools nationwide. Currently, Relationships and Sex Education (RSE) guidance produced by the Department of Education covers the topic of menstruation, and the UK Government has its own period poverty task force improving accessibility of period products. However, both these schemes overlook educating young women using these period products correctly and safely.
The results of a recent study by Billion et al. have shown how most women do not follow one or more of the tampon label recommendations, and that knowledge of mTSS is extremely limited. Most of these women did not receive initial education regarding tampon use, instead of learning it from their mothers or self-teaching, this lack of education was linked to misuse practices and increased mTSS risk. This research highlights the need for accessible education in schools promoting safe tampon and period product use, allowing young girls to form life‑long healthy habits to reduce mTSS risk.
A Lack of mTSS Research
Since the 1980s and subsequent fall in TSS incidence, there has been a distinct lack of mTSS research and the clinical, microbiological, and toxigenic features still remain poorly described. Despite its low incidence, the disease remains of compelling interest for several reasons:
- Many features, such as the underlying mechanism of mTSS, are still unknown
- The prevalence of tampons worldwide and their increasing use in developing countries
- An array of new period products continually coming to market that each carry their own risk
- The increasing threat of methicillin-resistant staphylococcal aureus (MRSA) and global antibiotic resistance
Without scientific data to support the facts, rumours are perpetuated throughout the period product market. For example, a French lab recently demonstrated TSS bacteria can grow on all tampon products, despite many claiming cotton tampons are safer. They also concluded menstrual cups are riskier than tampons due to their shape and volume which introduces oxygen into the vagina, producing an environment for the bacteria to thrive, yet others protest the menstrual cup is a safer alternative.
The truth is due to a lack of research and available data; conclusions cannot yet be drawn with confidence. A report in 2015 presented the case of a Canadian woman who developed mTSS after using a menstrual cup, prior to this no research had been carried out linking cups to the disease. Experts also argue over the long-standing recommendations on safe tampon use, with conflicting opinions on low absorbency and frequent changing. The CDC recently expressed doubts over their data from the 1980s which led to warnings against wearing tampons for more than 8 hours. They stated that “no science was ever done to support this recommendation”.
This shows that for the past 30 years, inaccurate research has shaped women’s menstrual habits and highlights the desperate need for new and accurate data to come to light. Knowledge of period products, what risk they pose, and how this can be mitigated is not conclusively known. These uncertainties and visible gaps in research have a disproportionately higher impact on young women. If meaningful research takes place, this data can then be used to guide the production of safe period products, and pressure can then be applied to change government guidelines so that awareness of this fatal disease is maintained.
Although a rare disease, TSS kills, and cases are on the rise. The taboo nature of the disease over the decades has resulted in a lack of research, or when present, inaccurate and conflicting data. Consequently, little progress has been made regarding regulating tampon safety, monitoring the risks of new period products and providing a comprehensive education to young women on the risks of TSS.
Links to learn more
- For more information on TSS: https://www.toxicshock.com/
- Nancy King Reame reflects on her involvement with tampon safety and the TSS epidemic: https://link.springer.com/chapter/10.1007/978-981-15-0614-7_51–
- Lauren Wasser shares her first-hand experience with TSS: https://www.bbc.co.uk/sounds/play/w3cswlmt