One woman's terrifying experience of toxic shock syndrome (TSS), as told to Katy Harrington.
I was on the second leg of a long-haul flight from New Zealand back to London; I was tired but that's to be expected, it’s such a long journey.
The first thing I thought was strange were my hands; they'd got really swollen and red and sore, but my ankles always swell up on a flight, so I sort of put it down to just being in a shit situation after two days' travelling.
When I got sick, it felt just like flu. I was shaking – not violently, but enough to know it was out of control. I felt unbelievably cold, I got sensitive to light and my bones were all really sore.
Then I started to feel nauseous. When I got home, I realised I was covered in a rash; it wasn't a dramatic rash, it was more like sunburn and was itchy. It was a little bit raised and I thought my skin had just flared up – with a lot of these things you go, 'Oh, long-haul flights...' and put everything down to that.
As well as the flu-like symptoms I had a headache and lower back pain. The only reason I thought I had TSS so early on was because when I went to the toilet to change my tampon, my vagina felt swollen and really quite sore; sore enough for me to know something was wrong.
I talked to my mum and dad on the phone and told them it could be something bad or it could just be something I picked up on the flight. My parents forced me to call the NHS helpline at about 2am. I told them what was going on and they called an ambulance – I didn’t even get a say.
When the paramedics came, I didn’t present as a particular risk. They said, "You have a temperature, you have a rash, it could be flu." They said if it was a weekday they would have just told me to go to the GP but because it was a Friday night at 3am they drove me to the hospital, no sirens blazing or anything.
I was mortified. I thought, 'Oh God, I have the flu and I've called an ambulance, I'm so embarrassed.'
Everything in me was screaming to go to bed, but I knew something was wrong. I said to my mum, "I don’t feel right," but then you know what women are like – we just tend to get on with stuff. I was at the end of my period, and didn’t want to make a scene. The scary thing for me was that it could have been so much worse if I’d made the wrong decision. That's why I think it's really important we talk about this – TSS is so rare but the consequences can be dire.
When I got to the hospital, I told the doctors I had a sore vagina. When I say 'sore', it wasn’t the outside, it was the inside – the soft, cushiony bit – that was really tender. So they did their checks and swabbed and said it looked fine... They weren’t particularly alarmed. They said, "You’ve kind of got the flu, but we don’t know what this rash is." Then a really good doctor who did the swab called the gynaecology team down, who were quite reluctant to see me because they probably thought it was flu, too. I think the NHS were fantastic, though; the staff were good and I feel really grateful to them.
They plied me with loads of antibiotics, which worked quite quickly. It took about two days for the whole fever thing to stop, then it's a matter of getting your fluids back up because you are so dehydrated. The rash lasted several days. I’m still itchy now, even though there’s no rash anymore.
After I got released from hospital, I was on 20 antibiotics a day, a shitload of drugs – that's when I realised how bad it was. I asked what would happen if I relapsed, and they said I’d go downhill immediately and be really severe so to get back to hospital quickly if that happened.
The weird thing, which I didn’t know about, is that about a week after you get TSS, the skin on your palms and soles of your feet all peels off. My hands started first – I’m talking like a shedding snake, it was disgusting. My feet started a week ago and they're still at the stage of being revolting so it’s not a pretty sight underneath my socks.
I called Mum and said, "Um, my hands are peeling, am I going to lose my hands?" She told me it's a common side-effect.
I asked the doctors about using tampons in the future and they said obviously not for a few months; after that they didn't say yes but they didn't say no either. It was more like "be careful" and "try and use alternatives", which is actually a life sentence because panty pads are the pits and you don’t realise how much freedom a tampon gives you until you can’t use it. So I'm going to invest in a Mooncup and see how that goes. I got those period knickers too but they’re only good at the end of your period.
I think I'll be fine but I can get it again; having TSS once doesn't make you immune.
Everyone asks, "How long was your tampon in for?" I’d used a tampon for maybe four to five hours at a time on the flight, so it wasn’t that long. The doctor said it's a combination of things – bacteria and germs, body temperature and maybe an abrasion on the lining [of my vagina] that I didn’t know about.
All the people I’ve told about it have been shocked because they think TSS is an urban myth, but it’s written on every tampon box. I don’t know where or why I read about TSS before – I could have been killing time while I was in the toilet and reading the side of the tampon box – but all I remember it saying is "fever-like symptoms". If I hadn't remembered that it could have been a very different 2018 for me.
This interview has been edited for length and clarity.
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