At 24 years old, model Lauren Wasser faced an unimaginable nightmare.
After an infection wreaked havoc on her body, causing multiple organ failure, she learned she would need to have her right leg amputated. This infection almost took her life when it triggered a scary condition known as toxic shock syndrome.
Over five years later, Wasser is speaking publicly about her experience. She’s educating others about toxic shock syndrome by talking about her daily pain and the decision to amputate her second leg.
Wasser’s story is significant, brave, and valuable not only because she survived the ordeal, but also because it has brought attention to a serious condition that hasn’t been in the spotlight lately.
For many adult women, toxic shock syndrome is something they haven’t heard much about for some time. Seeing this condition in the headlines again likely takes us back to our preteen years, when we first unfolded the educational pamphlet in our first box of tampons.
For some, it seems almost like a myth. We’ve all heard about it—maybe our mothers or aunts or health teachers warned us of the risk. However, because the condition is so rare, few people actually know someone who has experienced this devastating medical emergency.
It isn’t a myth, of course. Toxic shock syndrome is a life-threatening condition, and it should not be taken lightly.
What is toxic shock syndrome?
Toxic shock syndrome begins with a bacterial infection. This infection is most commonly caused by the bacteria Staphylococcus aureus, or staph. Less commonly, toxic shock syndrome can be caused by the group A streptococcus, or strep, bacteria. When there is an overgrowth of these bacteria, they release toxins that can cause “an immediate, exaggerated immune response,” per The Washington Post. This response can lead to “shock and massive tissue destruction, and possibly even death.”
The public largely associates toxic shock syndrome with the use of tampons. This is true in Wasser’s case—tampons were blamed for causing the infection and eventually toxic shock syndrome. This resulted in litigation between Wasser and tampon producer Kotex.
In the late 1970s and early 1980s, tampons were a major cause of toxic shock syndrome. Manufacturers were producing highly-absorbent, synthetic tampons, and this led to a spike in deaths among women. One of the biggest culprits was a tampon designed by Procter & Gamble known as Rely, which expanded after placement and turned out to be incredibly dangerous.
However, tampons are no longer widely blamed for toxic shock syndrome, says Amesh Adalja, MD, a fellow of the Infectious Diseases Society of America and senior scholar at the Johns Hopkins University Center for Health Security. In fact, only half of the reported cases of toxic shock syndrome are associated with tampons.
The most common cause of this condition is a staph infection, regardless of whether the infection was caused by a feminine hygiene product. Any staph infection contracted after a surgery or inside a wound puts women, men, and children at risk for developing toxic shock syndrome.
Toxic shock syndrome can also be caused by the aforementioned group A strep bacteria. Some women may already have this bacteria, sometimes a misdiagnosed cause of vaginitis, without realizing it. Women who have had cesarean sections or other gynecological procedures are also at risk, according to Courtney Martin, DO, attending physician in the Department of Gynecology and Obstetrics at Loma Linda University Children’s Hospital. Additionally, pregnant women in their third trimester are also at risk of developing group A strep-related toxic shock syndrome, as are their infants.
“Group A strep is an important cause of maternal morbidity and mortality, as well as infant morbidity and mortality,” she says.
Group A strep-related toxic shock syndrome is rare but devastating. During the third trimester, toxic shock syndrome caused by group A strep can be fatal for both mother and child, according to Martin.
What are the symptoms of toxic shock syndrome?
The symptoms of toxic shock syndrome may begin as any other infection according to Adalja, who points to fever and chills as common symptoms. Other symptoms can include nausea, abdominal pain, achy muscles, confusion, seizures, and headaches. You may also develop redness around your eyes or a rash on your hands and feet, according to the Mayo Clinic.
“Some people feel like they have the flu—general weakness, fatigue, fevers, chills,” says Martin. “In the gynecologic world, this could present like the flu with severe pelvic pain, uterine cramping, bad-smelling vaginal discharge, et cetera.”
Toxic shock syndrome can quickly turn a typical infection into a health emergency. As the toxin starts to make its way through the body, multiple organ failure can result.
“What ends up happening that distinguishes toxic shock syndrome from other infections is that it really starts to involve multiple organ systems and causes them to fail,” Adalja explains. “You may have kidney failure, you may have low blood pressure.”
Adalja gives the hypothetical example of a patient who has surgery and contracts a wound infection. The symptoms begin as localized pain, redness, and drainage. Then, usually rapidly, the patient takes a turn for the worse.
“As the infection progresses and the toxin builds up, it will start to cause all of these other symptoms in other organ systems,” he says.
Treating Toxic Shock Syndrome
It is important that treatment of toxic shock syndrome is rapid, addressing the source of the toxin as quickly as possible to minimize the damage to the body. Delayed treatment of toxic shock syndrome can result in renal and liver failure. Untreated toxic shock syndrome can be fatal.
The course of treatment depends on the source of the infection, but all treatments have the same goals: to find the source of the infection and to eliminate it as quickly as possible.
“The general rule with any infectious diseases is that you have to control the source,” says Adalja. “Obviously, if there is a retained tampon, you have to take it out.”
If the source of the infection is a wound, treatment may include another surgery. Surgeons will clean the infected wound, doing whatever it takes to rid the body of the bacteria releasing the toxin.
Additionally, patients with toxic shock syndrome are typically treated with antibiotics. Antibody therapy, intended to trigger an immune response in the body by attaching antibodies made in a laboratory to the cells of the toxin, is sometimes used in combination with antibiotics, Adalja says.
Because of the severity of toxic shock syndrome and its widespread devastation in the body, patients are usually treated in the intensive care unit, says Adalja. This allows doctors to not only attack the toxic shock syndrome but also provide supportive care targeted at affected systems and organs.
“Suppose the toxic shock syndrome has caused respiratory failure, you might need a mechanical ventilator,” explains Adalja. “You’re going to need intravenous fluids.”
Preventing Toxic Shock Syndrome
In many cases, prevention of this scary medical condition is possible. Learning to prevent toxic shock syndrome depends on an understanding of the specific risks associated with the condition.
Preventing toxic shock syndrome caused by menstrual products requires avoiding highly absorbent products and avoiding extended use, according to Adalja. WebMD advises women to wash their hands before inserting or removing tampons, to change their tampons every four to six hours (or more frequently, depending on flow), to only use tampons during periods, and to store tampons in cool, dry places. Women should also wear pads on light flow days.
Women in the third trimester and newly postpartum mothers need to know the symptoms and watch carefully for them, says Martin.
“Make sure to have close follow-ups with your OB-GYN during your pregnancy and especially after delivery,” she says, emphasizing prompt medical attention. “Waiting even hours can cost a life. If you have any abnormal symptoms after you deliver, you must call your OB or go to labor and delivery.”
Prevention of toxic shock syndrome related to a wound infection begins with proper wound care. If you have a wound, you should carefully comply with doctor recommendations and watch carefully for symptoms. If you notice redness or hotness surrounding your wound, drainage, or you develop a fever, follow up with your doctor promptly. Waiting for symptoms to worsen could be incredibly dangerous or deadly.
Healthy Living, Without Fear
Toxic shock syndrome is a scary condition that can rob someone of their health—and possibly end their life. In Wasser’s case, it took both her legs. That being said, it is not common enough to justify living in fear of the condition.
“Although it gets a lot of headlines, it’s somewhat rare,” says Adalja. “It’s important to remember that the incidence has dropped over time.”
This drop is largely associated with changes to the way tampons are manufactured, something that was legislated after the rise in toxic shock syndrome among women in the 1980s. This means that women can choose to use tampons without fear and that women who are already using tampons don’t need to ditch them altogether.
Instead, women can be empowered to make confident choices about their menstrual health. When women understand the risk factors communicated by medical professionals and advocated by women like Wasser, they can take steps to prevent this frightening condition. When you are diligent about using tampons for short periods of time, you can rest easy knowing you are living a healthy life.