My story: Surviving toxic shock syndrome (TSS)

Here, TSS survivor Phoebee Bambury shares her real story of contracting and getting diagnosed with TSS.

It’s important for every woman to know the symptoms of Toxic Shock Syndrome (TSS). This is a life-threatening, serious illness that develops rapidly.

What causes TSS?

TSS is caused by a type of bacteria called Staphylococcus aureus. This usually lives on the surface of around a third of people’s skin, without causing many problems. However, if the bacteria get inside the body and begins to produce toxins, it can cause life-threatening problems. TSS is usually associated with tampon use in women and girls. But, anyone can get it – including men. It can be from a variety of sources such as boils, burns, cuts and bites. Each year in the UK, around 40 people get diagnosed with TSS. Of this 40, around half of the cases will be because of tampon use. TSS is not associated with having ‘improper hygiene’ and you can never take too many precautions to avoid it.

Toxic shock syndrome (TSS) is something of a taboo subject amongst women and girls on their periods. A somewhat uncomfortable subject that is often brushed under the carpet during sex education talks during high school. It is often deemed something that will ‘never happen to me’.

Despite the signs and symptoms of TSS being written on the side of every box of tampons sold in the UK, women are still blissfully unaware of the dangers of the illness and how serious it can be.

My diagnosis with TSS

I was diagnosed with TSS in January 2017. I had a very high temperature around 9 pm the evening before I was admitted to hospital and had been feeling generally unwell for a few days. During the day I felt sick and had a terrible headache during the afternoon. It was painful to the point that I had to come home from university. I took some paracetamol and went to bed. I had been using tampons for about a week before this, as I had been having irregular and heavy periods. However, it had started to lighten so I went to sleep without a tampon. In the early hours of the morning, I woke up shivering uncontrollably and I was aching all over. After around an hour of feeling horrendously ill, and as though I was laying in a heap of snow with no clothes on, I decided something wasn’t right.

It would have been so easy to think ‘Oh I’m probably coming down with a virus, I’ll see if it calms down in a day or so’. But straight away TSS came into my mind. A family member told me about her niece who had died aged 16 because of the illness, so I learnt about TSS from a young age. I had always been careful with tampons due to this, never leaving them in longer than recommended. I always used the right absorbency and avoided sleeping in them if possible. On this occasion, I didn’t want to take the risk. I grabbed a box of tampons from the bathroom and looked at the information on TSS. I had several of the symptoms listed so I phoned 111, who told me to get straight to a hospital.

My temperature peaked at around 42 degrees

Emergency trip to hospital

Within 10 minutes of arriving, I was on a bed in A and E. They gave me a drip, took blood and had an industrial-sized fan on me. My temperature was 39.7 degrees, (even though I felt like I was in an ice bath). What followed were days of being very unwell. I had an extremely low blood pressure, a high temperature and rashes all over my body. I was being sick a hell of a lot and I was in agony. My face, my wrists and my ankles swelled up uncontrollably. My temperature peaked at around 42 degrees. At one point my heart rate was constantly at around 150bpm for around 3 hours despite me being led in the A&E department.

I had gained 5kg in just 2 days due to the swelling

I was taken to the Clinical Infections Ward. They weighed me and it turned out I had gained 5kg in just 2 days due to the swelling. The first few days were awful as, despite the hospital treatment, I began to feel worse. It wasn’t until  6 days after being admitted to the hospital that any signs of feeling better began to show. I was on IV fluids and about 6 different antibiotics for over a week. I was taking morphine every four hours for the pain. My food and fluid intake were monitored, as I had severe sickness and diarrhoea for the first 8 days of my hospital stay. There were serious concerns regarding my nutrition.

Recovering from TSS

Two weeks later I got to go home, accompanied by an array of medication to take for the next two months. These included steroids, anti-sickness medication, morphine and anti-inflammatory drugs amongst other things.

Thankfully I recovered, and as such, I am trying to raise awareness of the illness by sharing my experience. Since coming home from the hospital, I have mostly made a full recovery. There have been a few unpleasant side effects, such as my hair falling out and skin peeling off every few months. I also have very brittle nails. At first, I had extremely depleted energy levels and had to take two months off university to recover. But, I gradually began feeling better and now only have the occasional day where I have no energy or get sudden muscle weaknesses.

The Signs and Symptoms of TSS Include:

• a high temperature (fever) of 39C or above
• flu-like symptoms, such as a headache, chills, muscle aches, a sore throat and a cough
• feeling and being sick
• diarrhoea
• a widespread sunburn-like rash
• the whites of the eyes, lips and tongue turning a bright red
• dizziness or fainting
• breathing difficulties
• confusion
• drowsiness

If you have any combination of these following tampon use or any injury that causes a break in the skin, seek medical advice straight away. It just isn’t worth the risk. By knowing the symptoms and getting myself to a hospital quickly I prevented my TSS from becoming a lot more gnarly than it was, and possibly saved my own life. If sharing my story helps just one person spot the early signs of TSS then I’ll be happy”.

Thanks to Phoebee for sharing this very important story! Phoebee is a on a mission to raise awareness of TSS. As Phoebee mentioned in this post, TSS is a taboo subject, like many period related topics. It’s so important to speak out and support people like Phoebee who are talking openly about stories that can seriously impact health. If you’re ready to ‘normalise’ period taboo, join in our #TalkingPeriods campaign on Twitter and Instagram. Find out more here.