We welcome Letters and E-mails from Toxic Shock sufferers and supporters. We feel that sharing information can be beneficial to all concerned. If anyone would like to make contact with anyone listed below, please contact us and we will ask their permission first. Since all emails and letters are confidential we will ask you if you want it posted on the site. We hope to be able to answer or help with your questions and concerns about TSS and tampons.
| TOXIC SHOCK SCARE FOR 14-YEAR-OLD ANGELA - March 2008 |
Hi Tampon Alert,
It took me quite a bit of time going through all the info and stories of your website, but I did. I am 14 years old and I sometimes wear tampons during my period. I’m very aware of TSS so I wash my hands before and after I change my tampon and never leave it in for more than 6 hours. But the stories on your website really scare me. I remember once 3 or 4 months ago I had my period and I was using tampons. I got what seemed like a cold and immediately freaked out. I told my Dad (my Mum was at work), and he said it probably wasn’t, but he took me to the Pharmacist’s anyway. Luckily they said it was most likely not TSS and I didn’t have itchy palms or random bruises. I am very happy to say it wasn’t TSS, just an unfortunate coincidence that I had a cold and my period at the same time. I hope I’ll never have anything like that again, it was SOOOOO scary!!!! I support tampons can kill and many people are not aware. We shouldn’t stop people from using tampons, but we can educate them.
Kindest Regards, Angela.
Tampon Alert Campaign replies:
Dear Angela,
Thank you for your email, I was very interested to read it. Yes TSS is scary, but if you know the symptoms and can take prompt action then the tampon user should be OK.
We believe that woman should have a free choice in the type of sanitary protection they use. However, as you rightly say, education is the key. We take risks every day. So as long as we know what we are doing then we are prepared. If women don't want to take the risk of TSS then they will use a safer alternative.
To reduce the risk of TSS women should use a LOW ABSORBENCY tampon and ALTERNATE tampon use with a safer option once per day (we think that using the safer option at night is the best system). As you probably know, younger women are more at risk of TSS because their immune system has not fully developed.
Best Wishes and thanks once again. Jenny Kilvert
Angela responds:
To Jenny,
Thank you very much for the fast reply. I personally think a pad is much more comfortable at night and it doesn't cause TSS. The only reason I wear tampons is because I play sport and I do dance. On days when I don't have to move as much I stick to the safer alternative. But I am interested to try menstrual cups.
Kind regards,
Angela
| LORI APPEALS TO TOXIC SHOCK SURVIVORS - February 2008. |
Hello Tampon Alert,
I came across your website today in the hopes of finding more about the after-effects of this horrible affliction. I too contracted Toxic Shock Syndrome in November 1982. I have since developed a very odd condition that I think just could have come from having had TSS. When I had it and was in hospital, my hands and feet burned and the skin peeled off. Now I have a constant burning sensation in my hands, forearms, feet, shins and calves. I have been to so many doctors, mostly neurologists, it is ridiculous. No-one has found anything at all. It is driving me crazy and I am searching for some kind of answer and most of all, some relief.
If there is a way to contact survivors of Toxic Shock Syndrome I would sure love to know.
Thanks very much, Lori.
Alice Kilvert Tampon Alert says:
CAN ANYBODY HELP PLEASE? Contact us and we’ll put you in touch with Lori.
| TSHEPI IN SOUTH AFRICA HAS SYMPTOMS OF TSS - December 2007. |
Dear Alice Kilvert Tampon Alert.
I live in South Africa and I’ve got symptoms of TSS. I would like to know if I should stop using tampons totally or what should I do?
Many thanks, Tshepi.
Tampon Alert Campaign replies:
Dear Tshepi,
Thank you for your enquiry.
I hope that you have stopped using tampons during this period. However, you need to be aware that if the toxins are already inside you, then if you feel worse, you must go to a hospital. (Don't bother with the local doctor as he/she may not know about TSS).
It's best NOT to be alone just in case you become worse, especially in your sleep. Ensure someone stays with you for the next 2 days, even if the symptoms don't get any worse.
My advice is NOT to use tampons containing rayon again. This includes all well-known brands and chain store brands. You can use all-cotton tampons or other alternatives shown on our website.
Hoping you keep well. Best Wishes Jenny Kilvert
| NICOLE HAS TOXIC SHOCK SYNDROME TWICE - August 2007 |
Dear Tampon Alert,
I am a 20 year old who is a victim of Toxic Shock Syndrome. I went through two bouts of TSS and never want to endure that kind of pain again. The first time, the doctors couldn’t figure out what it was. I was hospitalised for ten days, went through kidney failure and was in a critical condition on my first night in hospital. I felt like a science project, with tubes and needles and all kinds of equipment sticking out of me.
Basically, I have a job as a Flight Attendant and wearing pads would make working extremely uncomfortable. I was wondering if using organic cotton tampons on heavy days only, and changing them frequently, would still put me at high risk of getting TSS again.
Any advice or information you could give me would be wonderful.
Thank you, Nicole.
Tampon Alert Campaign replies:
Dear Nicole,
Thank you for your enquiry. So sorry to hear that you have suffered with Toxic Shock Syndrome.
All-cotton tampons are safe. However, as all-cotton tampons are not as absorbent as main brand rayon tampons, they are slightly larger. This means on heavy days they could also be uncomfortable. You may need to change more frequently. You may also like to consider menstrual cups or sponges as seen on the Tampon Alert website, “Alternatives” page.
Once you have had TSS, it is quite easy to get it again as the body's immune system has been damaged, and takes a couple of years to get back to normal. So I strongly recommend that you don't use tampons containing rayon again (i.e. main brands and supermarket brands).
Your kidney failure will probably need to be monitored. You may feel ill if you eat too much fatty food, sugary food or alcohol. Typical after-effects of TSS are peeling of skin on palms and soles, hair falling out in clumps (but it does grow back again), short term memory loss, being prone to infections, tiredness and emotional distress.
I hope that this information has been helpful. Looking forward to hearing from you again.
Best Wishes Jenny Kilvert
| DEHYDRATION AND CERVICAL DILATION – PRECURSORS TO TSS - June 2007 |
Dear Tampon Alert,
I would be very grateful if you could post my research paper on your website. Twenty six years ago I made an important discovery relating to the female human body. I was employed by Battelle Pacific Northwest National Laboratory working on a project regarding abortions in Washington DC.
My research showed: That TSS in women is always initiated by nausea, vomiting and diarrhea resulting in dehydration; That severe dehydration results in dilation of the cervix up to 2 cm and that rapid dilation results in lacerations along the cervical canal; That the lacerations are essential to provide a path for the Staphylococcus bacteria to have access to the body; That the lacerations cause large quantities of prostaglandin which is carried into the body and results in additional nausea, vomiting and diarrhea; That additional dehydration results in further damage to body tissue causing more prostaglandin to be generated; That large doses of prostaglandin will cause the blood to thicken and blood pressure to drop and explains most of the other symptoms of TSS all the way to death.
Further, Sir John Vane, in 1982 concluded that ASPIRIN will attack prostaglandin anywhere in the body, which implies that the proper treatment should be to administer antibiotics AND ASPIRIN.
Richard Tokarz.
The FULL Research Paper has been posted on our Research Page.
| MICHELLE FROM WISCONSIN HAD TSS IN JUNE 2007 |
Hi Tampon Alert,
My name is Michelle. I'm from Green Bay, Wisconsin. I'm recently an ongoing survivor of TSS. I was diagnosed in late June of this year. I'm still dealing with the outcome. I was wondering how I could get my story out for people to read. Thanks for your website. It has been so helpful and inspiring to me and my family.
Sincerely, Michelle
Tampon Alert Campaign replies:
Dear Michelle,
Thank you for contacting us. Sorry to hear that you have suffered Toxic Shock Syndrome. I hope you are well on the mend.
To get your story out is not easy, as a young TSS sufferer in Wisconsin (Alexandra on the AKTA website) has found out. I had contacted several women’s and girls magazines in US with her story and not even had an acknowledgement. However, I would suggest that you draft a 300 word account of your story and send it with photographs to as many magazines as possible. They like things like “I nearly died” and “my family feared the worst”. Also on a more positive note “I wouldn’t want this to happen to anyone else”. If a magazine takes it up, a journalist will want to interview you and take more photographs. They will want your story to be their “exclusive” (in their magazine only). My view is not to agree to it being exclusive so that you can tell everybody.
If you would like to contact other TSS sufferers please let me know. It’s good to talk and compare notes.
Best Wishes Jenny Kilvert.
| DESPERATE CALL FROM MAGDA IN LOS ANGELES - May 2007 |
Hi there,
It’s 2 am in Los Angeles and I don’t have anyone to watch my sleeping daughter, otherwise I would go to the emergency hospital. Yesterday, during an annual physical examination, my doctor found a retained tampon. I’m not sure how long it’s been there. The doctor took a culture to make sure there was no infection, but I’m told I need to wait a week for the results. I began my period later in the day, then later in the evening, I developed a headache. I took some advil around midnight and when I woke up just now, I vomited. I’m hoping that I can get a response from you as I know it is early morning in the UK. I would like to know if I should go to the Emergency Room now, or wait until morning when I can take my daughter to school? Thanks in advance for your response. Magda.
Tampon Alert Campaign replies:
Dear Magda,
Sorry that I've only just seen your email this minute.
The retained tampon would NOT be responsible for Toxic Shock Syndrome. Your body's immune system would have protected you from that.
However, if you began another period yesterday and used a tampon, you may be getting a reaction to the new one. Headache and vomiting are symptoms of TSS. If you are developing TSS you will probably have a high temperature by
now, aching muscles and dizziness - possibly a watery diarrhoea. You may be developing red skin rash. If you are getting these symptoms then go immediately to hospital. If you are not getting these symptoms then call a friend and ask her to call and see you this morning to make sure you are OK. (The reason I say call a friend is because only two symptoms may not be TSS. If it is TSS, then the friend will help you if need be).
So, if you are still using a tampon, take it out and use an alternative. I recommend that you don't use tampons again (unless it's made of 100%cotton).
Please let me know how you get on.
Best Wishes, Jenny
Follow up:
Hi Jenny,
Thank you so much for your thoughtful reply. I fell asleep after writing you. I awoke just now feeling perfectly fine.
Finding that retained tampon was a horrifying shock and prompted me to begin researching on line, which is where I found your website. The stories are scary! I guess the reason I became concerned was that so many of the poor women who fell victim to this, started out with relatively minor symptoms and the danger progressed so quickly. This episode has been a huge wake up call for me to the potential dangers of using tampons. I will make the switch to 100% organic cotton.
I will take your advice and speak to a friend to make sure there is someone to check on me later in the day, just in case! Thank you so much for the website and the education it brings. I looked at many different websites trying to get a feel for whether or not I was displaying symptoms, and your website was by far, the most informative as it includes the real stories of what women went through at the onset.
You are doing a valuable service!!!
All the best,
Magda
| “COULD THIS BE TOXIC SHOCK SYNDROME?” - April 2007 |
Dear Alice Kilvert Tampon Alert,
I have just been on your website and read about Toxic Shock Syndrome. Last week my 22 year old daughter was very ill. She started with flu-like symptoms for about 2 days. After that she was vomiting and could barely walk. I took her to the local a&e where she had blood tests that showed abnormal liver function. She was admitted to hospital and they said that she had a viral infection. Her symptoms were abnormal liver function, sore throat, low blood pressure, severe aching of the whole body, red and sore tongue, a red rash on her feet and hands and blood and protein in her urine. She was on a period at the time and was using a tampon. Is it possible she could have had toxic shock syndrome?
Kind Regards, M.
Tampon Alert Campaign replies:
Yes, I’m very sure that your daughter has had Toxic Shock Syndrome and I hope that she is recovering now. As you will see from the website, recovery can take some time and has unusual after-effects. By now she will have had peeling palms and soles, but this recovers quite quickly. Later there will be some hair loss, but this grows back too. She will be prone to infections (coughs and colds) for up to a couple of years, as the TSS toxins have affected her immune system. There could be some organ damage (temporary or partial permanent) and this should be kept under review, (you mention liver). She will feel weak for quite a while and may have some short-term memory loss, but this does get better after some time. She will need plenty of rest and support.
Please e-mail or phone me whenever you need to.
Best Wishes, Jenny
Follow up:
Dear Jenny,
Thank you for your reply. Yes, my daughter has had peeling of the palms, but not so much the soles, but they are very dry. She is now very tired most of the time and has a lot of aching in her muscles and joints. She is going to hospital next week for blood tests and liver function.
Kind regards, M
| “THE SKIN IS PEELING OFF MY FEET” SAYS ELIZABETH. - December 2006 |
Dear Tampon Alert,
It has been almost a month since my last period and for about a week, the bottom of my feet are peeling extremely badly and very thick skin is coming off. I also got my first migraine a few weeks ago. And now that I think about it, my shoulders and arms were sore for no reason last week.
I know these are all symptoms of TSS, but I have no fever, no dizziness, no rash no vomiting, etc. Should I be concerned that I have TSS. I always use tampons every month until the very last day of my period, even when there is not much need for them. Please let me know what you think.
Thanks, Elizabeth.
Tampon Alert Campaign replies:
Dear Elizabeth,
Thank you for your enquiry. Your symptoms sound strange if you have the beginnings of Toxic Shock. But it is possible that you have had Toxic Shock, so my advice is not to use tampons again (except all-cotton tampons).
The reason I said strange is because the first symptoms are usually headache or sore throat, high temperature and aching muscles. Then it's usually vomiting and/or diarrhoea. Then as the blood pressure drops, you get dizziness and confusion. The low blood pressure may then lead to skin peeling (palms and soles) a week or 2 later and then hair falling out in clumps a month or 2 later. In severe cases, the toxins affect the vital organs.
The peeling skin on your soles makes me think that you did have low blood pressure, but it's interesting that you didn't feel faint. But TSS is very strange, so it's possible you had it. I would recommend visiting your doctor so that he/she can examine your feet and prescribe as necessary.
TSS is caused by the reaction between rayon in the tampon and the bacteria Staphylococcus aureus. It produces a toxin which overwhelms the body's immune system. The damaged caused to the immune system makes it easier to get TSS the next time you use tampons containing rayon (the major brands). I don't know for sure if it was TSS, but if I were you, I would not use tampons (containing rayon) again. The major brands of towels appear to be OK, and our website (www.tamponalert.org.uk) has a piece on safer options.
Take care. Best Wishes Jenny Kilvert (for Alice Kilvert Tampon Alert).
| “I HAVE PAINS IN MY LEGS” SAYS AUDREY - December 2006 |
Hi there,
I had a baby 12 weeks ago and I am on my second period since then. I am using super Tampax and have a question to ask. I am experiencing an aching pain coming from between my legs and shooting right down my legs since my period started today. Could this be anything to do with TSS? I know it probably isn’t, but I just need reassurance as it is very uncomfortable.
Thank you, Audrey.
Tampon Alert Campaign replies:
Thank you for your enquiry and congratulations on the birth of your baby. The pain in your legs does not sound like TSS, but as the symptoms of TSS are so varied, it's hard to be sure.
However, a number of women have suffered from the full effects of toxic shock when using tampons again, shortly after giving birth to their 2nd or third baby. So my advice is to play it safe. Do not use tampons for the time being and see if the symptoms ease. Also, you must consult your doctor or the hospital if the pains persist. Do not put up with pains that give you cause for concern.
Super tampons present the highest risk of getting TSS because high absorbency is the No.1 Risk Factor. I suggest that you use towels for a while or all-cotton tampons, (see our website for Alternatives to Tampons at www.tamponalert.org.uk). Use alternatives for at least 6 months. If you go back to normal tampons, monitor your health and if there are any TSS symptoms, do not use tampons again. Tell your partner what you are doing so that he can keep an eye on you too.
I hope this is helpful. I would be grateful if you could keep me informed of your progress.
Best Wishes, Jenny Kilvert
Audrey's response:
Dear Jenny
Thank you very much for getting back to me so soon.
After sending the e-mail last night I decided not to use tampons for a while. Surprisingly since then the pains have gone away.
In relation to what you were saying about babies; the baby I have just had is my third.
The stories on your website are very scary and I have a younger sister who, due to very heavy periods, always uses super strength tampons. I will be making her aware of the possible dangers and to see what changes she can maybe make too.
Once again thank you for your quick response and I wish you well in your campaign to raise awareness about TSS.
Take care and hope you have a lovely Christmas! Audrey