Toxic shock syndrome

[Mooma]

I'm recovering after being seriously ill with toxic shock syndrome. It started last month on the first day of my period when I was using tampons. I was aware of the advice about TSS and did not leave a tampon in for longer than recommended, yet still became ill. One of the hardest things is that I was dangerously ill and many people assume it was self-inflicted, ie they assume that I left a tampon in for too long. I wanted to share this because I thought if you followed the advice there was no real risk ( and it is very rare, only 20 cases in the UK each year in menstruating women, another 20 in men, women and children from things like infected insect bites).
When I became ill, I thought it was flu, and it didn't occur to me that it could be anything else, so please, if you get flu-like symptoms during a period, see a doctor immediately. Also, don't use tampons exclusively during a period, but swap for pads at times to give your body a break.
It is 4 and a half weeks since I fell ill, and I am still recovering. My parents have been staying and doing everything for my family, (4 kids) they have been superb. Today I ironed for the first time in a month, and it felt great!

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I've been advised not to use any sort of internal protection in the future. Is a keeper a sort of sponge? I've heard about something like that, but basically would be scared to wear anything inside now.
The main symptoms are muscular pains, headache, vomiting & diarrhoea. Read the leaflet in your tampon box as the info given is spot on. I just didn't make the connection, and it could have cost me my life, because I spent two days in bed, assuming I had a bad dose of flu, and by the time I was admitted to hospital, my kidneys were down to 25% of normal function and my liver was also compromised. The bacteria which triggers TSS is staphylococcus aureus, which is treatable (but only by a few antibiotics) but the problem stems from the huge amount of toxins produced by the bacteria which get in to the blood and poison every organ. As well as the above, I had a lot of breathing problems and needed an oxygen mask for 8 days.
I don't want to scare anyone, just raise awareness in the hope that others might be more alert. It usually affects younger women up to about 30, and since I'm 41, it just shows how young at heart I am!

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Dear Bloss, thanks for the reference. I've read the info on the keeper, and it looks very interesting as an alternative to tampons. I must admit, the thought of pads is not attractive, especially since I'm normally a very active person. Thanks too for your good wishes, Mooma.

Hi Mooma

Your experience sounds awful. A friend of mine had a much milder version years and years ago and hasn't used a tampon since.

I write for Femail at the Daily Mail - I'm also mum of two little girls. I think this is an issue maybe we should look at in the health section.
Or has it been done to death?
I don't remember seeing anything on it recently, but now Tampax are saying it's OK to leave them in all night so maybe that's not as safe as they're saying.

What do you all think? Shall I put it up as an idea?

Hi Rachel 1969, I thought I was aware of the symptoms of TSS, yet when I became ill during my period it never occured to me that it could be anything other than flu.(It's been doing the rounds amongst other mums at school). It might be worth reiterating the warnings - the tampon manufacturers certainly make things very clear in their leaflets. The problem was, I hadn't left a tampon in - the illness started the evening of the first day of my period, when I had used two or three tampons over the course of the day. By the next day, I had been so ill (d&v) that my period had stopped, so when I was taken into hospital, I wasn't using any protection, and because TSS is so rare, it took a while before they started to think that was what it could be. The rash I had made them suspect meningitis, so it was difficult to diagnose. The thing that made them really sure it was TSS, was that after about a week, the skin on my palms started to lift and peel, and it has now happened on the soles of my feet as well. Talk about baby soft skin!

Hi Mooma, glad you're feeling better, and thanks for the warning. It was something that was publicised a lot a few years ago, and Ive not heard of it for ages. Best wishes for your recovery!

Thanks for raising awareness Mooma and best wishes on your road to complete recovery.

Rachel1969, maybe you should think about including this in an article. I remember being told about it years ago and maybe reading about it in my teenage years, but I couldn't have told you any symptoms until reading Mooma's story. I'm a mag-a-holic and can't recount any recent articles in the glossies, so perhaps it is about time it had some coverage...

Ok - I'll suggest it to the health editor in the morning and report back ...

OK Mooma - I spoke to my health editor this morning who thinks I should do a piece on TSS in the light of what you're saying. Neither of us were aware that you could get it even if you changed your tampon regularly - the points you make have certainly changed our views of itand she thinks it's very important to get this across.
Can I interview you for the piece? The fact that you're still recovering makes you the perfect candidate.
You can email me direct at [email protected] if you want more details.
Speak soon
Rachel

I use a keeper. I bought it when I lived in the States. Been using it for about 8 years now. It's a great alternative to tampons and lasts for years so is very economical. On top of this it's a green option (nothing but 'human waste' is flushed down the loo). Perfect if, like me, you're not on mains sewerage.

Down side is that you have to empty it and it can look a bit disgusting. I tend to only use public toilets that have sinks in them, when not at home, (such as the disabled loos ) when I'm using it as it's nice to have a sink to hand to rinse it out before reinserting.

OK enough information. I'll stop there!!

How scary Mooma - I hope that you continue to make a good recovery. I am so sorry that you got it but thanks for letting us know. I am dreadful about not changing tampons, so this is a very timely reminder not to be careless.
Where does the bacteria come from? Is it one of those ones that lurks inside us all the time and just gets out of control? Would it be safer to use an applicator tampons to avoid touching them before they go in? I must check out Suew's links but if anyone knows anymore about this, I would be interested to find out.

Dear Bugsy, I was advised that the bacteria live harmlessly in the throats, noses and vagina of some people (can't remember the percentage) until something triggers tham to multiply out of control. In this case probably the tampon is too absorbent next to the mucous membrane of the vagina wall, and causes it to alter in some way which then results in the bacterial infection.(Remember I was very ill and not particularly with it when all this was explained to me!!)
PLEASE PLEASE all you women who say you are careless about changing tampons, don't be! You would never leave your baby in a soiled nappy, I'm sure. And believe me, you do not ever want to experience this illness if you can avoid it. It is thankfully very rare and you probably never will but don't take the chance. Mooma XX

Rachel1969, I'm not sure about being interviewed - talking on Mumsnet is like talking to friends, but I'm not sure about a wider forum. It has been a bad experience and it's a bit soon. I don't have any problem with your using the information I've given here, provided Mumsnet don't object. I'm still finding it all a bit of a nightmare, that I could have died from something we all take for granted. MoomaXX

I hadn't used sanitary towels for 4 years (after birth of the little horror!), but yesterday I had a Mirena Coil fitted and was advised by my doc to use towels for the first couple of months. Haven't they got better over the years, managed to wear one yesterday as I had a bit of breakthrough bleeding after the Coil was fitted, without waddling about like a duck and continuously pulling at my jeans and pants!. Mooma, I am glad that you are getting better, I also think that sometimes with tampons they can be left in longer than we should, although I never have, and I have a lot of friends who have gone back to towels instead of tampons, a thought I've been toying with for a while. Hope you are on the road to recovery and good luck.

That's fine Mooma - I can't use info from the discussions you've had here, for the very reason you said - it was just you chatting among friends and not a formal interview. The only way i'd feature your experience would be if we had a proper chat on the phone.

I understand you don't feel up to it at the moment - if you don't feel comfortable with being interviewed i'll try and find someone else. There's probably a support group somewhere who'll be able to put me in touch with someone.
I'll let you know when it's going in though.
If you change your mind in the next few days just email me - no worries at all though if you'd rather not.
Do you feel any better today?

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Bloss, like you my sanitary ware choice is based on helping the environment. I use Natracare products but they are very expensive and I can only get them via the internet with a huge delivery charge or from a store some miles away. I would beinterested in using a keeper, where would I get one from?

Mooma, thank goodness you are on the road to recovery, best wishes x

Yes Bloss, I'll try and work that in.
Basically I need to find someone who's been affected by it fairly recently - interview them and a medical expert, and then do some sort of a box alongside the piece talking about these Keepers - I'll have to find out some more about them myself.

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Hi Bloss, thanks for the site info. Sorry everyone I know I'm on the wrong thread but to answer your question Bloss: 6.45! HURRAH! He awoke twice in the night and settled straight back down. Interestingly although he has had more sleep than usual in the last few days he slept for an hour this morning and an hour this afternoon also (usually he sleeps for two twenty min naps in the day). So, thanks for the advice.
Onwards and upwards...x

Mooma, so glad you are now recovering from what must have been a terrible time for you and your family.

I first knew about this about 10 years ago when on holiday in America as it was splashed over packets of tampons and since then I've been a lot more careful. When I was a teenager I used to use small tampons nearly every day because I couldn't stand discharge.

Looking in a packet of lilets last night there was a very small leaflet which told you all about it, but who bothers to look at this? I don't think this is good enough for them to just 'mention' it just because the risks are extremely low.