16-YEAR-OLD RHIANNON, SERIOUSLY ILL WITH TOXIC SHOCK - AUGUST 2008
Hi Alice,
I am finally writing to you as I feel now that the past is behind my daughter Rhiannon. When she was 16 she became ill with flu like symptoms. She was away from home visiting her sister at Uni and fell ill. Her sister drove her home to us, only for us to find her semi-concious and yellow in colour. We took her straight to A&E where they thought she had meningitis. When they discovered she had a tampon in (which was only in for 2 hours) they thought it was TSS. It was. By this time she had kidney failure, was on full life support as she was no longer breathing on her own. Her body swelled and her hands and feet turned black. They told us that there was nothing they could do at this point as she was deteriorating faster than the medication was working. Then thankfully they offered a drug not used normally by children. We waited patiently for 3 days for any sign of improvement. At last she started to get better.
After another 5 days she was out of intensive care and on a High Dependency ward. Then 4 days later she was home with us on her 17th birthday. She lost the skin off her feet and lost some toenails. She also has slightly deformed feet and still cannot wear fashion shoes. All her hair fell out, and she lost part of her hearing in one of her ears. This all happened 18months ago and now she has just received 4 A's at A level, and in October she is off to Uni herself, her hair is back thicker, blonder and curlier. She has the world at her feet and we are the proudest parents in the universe.
Thanks,
Julie
Tampon Alert Campaign
Dear Julie and Rhiannon,
Thank you very much for your email dated 27 August 2008. I was so saddened to hear about Rhiannon's ordeal and so happy that she pulled through. I hope that she has fully recovered now.
Congratulations to Rhiannon on her exam success and hope that she is enjoying University.
I was very interested to read Rhiannon's story. It follows the typical TSS pattern, yet has some different aspects. It confirms what we have said about TSS symptoms starting after only 2 hours, (although the urban myth about a forgotten tampon still prevails).
As Rhiannon is at University, she may like some leaflets to pass on to her friends and Students Union. We can send a pack of 100 free of charge. Also, if she would wish to tell her story to a Women's magazine, we can give you some contacts.
Looking forward to hearing from you again.
Best Wishes,
Jenny Kilvert
TINA, AGED 49, MAY HAVE HAD TOXIC SHOCK TWICE - AUGUST 2008
Hello Alice Kilvert Tampon Alert,
I found your website because I typed some of the symptoms that I had yesterday along with the word 'period' into a web browser. I'm now okay but yesterday I was very very unwell. Aching all over like flu. Freezing cold extremities, shuddering with cold. I had to use two hands to hold a glass of water I was shaking so much. I was also nauseous. Later I became extremely hot and sweaty - that lasted all night. This situation had happened to me before 3-5 months ago also at a time when I was having a period and the symptoms that time also lasted around 24-36 hours. I was expecting to find something related to my age on the internet I'm 49 - but now I'm wondering whether I was on the brink of developing Toxic Shock Syndrome. I've always used tampons but not the high absorbency ones - until recently. My periods have become much heavier in recent months so I started using the highest absorbency - even then I need to change them every 3-4 hours. I wonder if I had a close call with TSS and my immune system got things under control. How many other women have had a close call and written it of as a 24 hour bug? Maybe that's something that could be investigated and publicised a bit more. If women recognise they've been having some sort of reaction maybe a full blown TSS can be avoided. I will certainly think twice before using the extra absorbent tampons again.
Thanks for your informative and helpful site.
Best wishes,
Tina
Tampon Alert Campaign
Dear Tina,
Thank you for your email of 27th August.
I am uncertain if your illness was Toxic Shock Syndrome. but it sounds like it to me. If it was TSS it will return if you continue to use tampons. I would suggest using a safer option as displayed on our website www.tamponalert.org.uk. I hope that you have visited your doctor and mentioned TSS (as most doctors would not be aware of TSS).
I agree that we should try to get the message across about what could be a 24 hour flu bug. You have just given me a great idea for the Theme for our 2009 National Tampon Alert Week. "If you are using a tampon - that 24 hour flu feeling could just be Toxic Shock Syndrome". I'll work around that idea, thanks very much.
Sorry for that digression. Please let me know how you are feeling now and particularly how you are feeling during your next period. Hopefully you won't be using a tampon (all-cotton tampons are safe, but may not be absorbent enough).
Take care and Best Wishes,
Jenny Kilvert
AKTA MEANS "BE CAREFUL" OR "WATCH OUT" IN SWEDISH - JULY 2008
Hi Alice Kilvert Tampon Alert,
Got to read on your site today! And I was very chocked to read... that this actually can go on!!! The tampons... And the big companies continue to pump out their commercials... spending lots and lots of money to get their products to sell... and they do...
I have my self been using the menstrual cup since 1989 and my daughters got their cups when quite young...
In Sweden we do not have that many cases of TSS, but I do not know for sure how many!! What does the statistics say In general about the frequency of TSS?
I also want to ask if it is ok to translate some info from your site? I will of course refer to the original source.
Kindly,
Sami Anderberg
Owner of Pepplon.se (where I sell menstrual cups among other things)
Just wanted to make a statement that I feel that this is the right way to go... Awareness is the best cure for them who wander in the dark!
Tampon Alert Campaign
Dear Sami,
Many thanks for your email. I am very pleased that you have read our website and that you don't use tampons and use the cup.
I would be very pleased it you translate any information on our website for your use. I would also be very pleased if you would send us a copy of your Swedish Translation and allow us to post it on our website (in Swedish).
Statistics about TSS are not clear as it is NOT a notifiable disease. In the UK about 15 years ago, there was a voluntary system of reporting, as most blood samples were analysed at one laboratory. They said that there were 40 cases of tampon-related TSS and 2 or 3 deaths per year. In 2008, some people are still quoting these figures. Most hospitals now do their own blood analysis so statistics are not issued..
Thank you once again for emailing us. I hope this response is helpful to you.
Looking forward to hearing from you again,
Best Wishes
Jenny Kilvert.
COLLEEN'S DAUGHTER WAS ON HOLIDAY IN CALIFORNIA WHEN SHE GOT TSS - JULY 2008
Hello Tampon Alert,
My daughter, age 15, almost died on 25th June 2008.
She was hospitalized in ICU, for using Playtex Sport Tampons.
She is okay now thank God for incredible medical care and quick response.
Sincerely
Colleen.
Tampon Alert Campaign
Dear Colleen,
Thank you for your email. So sorry to hear about your daughter suffering from Toxic Shock Syndrome, but very pleased that she survived.
The tampon manufacturers say that TSS is very rare. This gives a false sense of security because if you get it, it can come on rapidly and have serious consequences.
You have probably read on the Tampon Alert website about the after-effects. The recovery time is usually quicker with younger women, but I'm sure your daughter will feel tired and will be short on energy for a couple of months. She'll need plenty of rest. She could be prone to other infections like coughs and colds for some time as her immune system will be affected. Her short-term memory could be affected too, but this usually recovers. Also she could be weepy and need lots of assurance, and could also be angry.
Some women suffer major physical damage, such as lost fingers and toes due to gangrene, and damage to organs. I expect by now your daughter will have lost the skin on her palms and soles. This is normal for TSS as the "shock" part of TSS is low blood pressure which leads to a lack of blood (and oxygen) to the outer-most parts of the body. She will also lose some hair, but this grows back again (although not always exactly the same).
Not a lot of people know much about TSS, even doctors. If you would like to contact other TSS sufferers please let me know. It's good to talk and compare notes. I hope our case studies and letters on the Tampon Alert Website help you to help your daughter to recover. I would be pleased to put your daughter's story on the website if you like. When you feel you can write things down please email me again. In fact, any time you want to talk please contact me.
Wishing your daughter a speedy recovery. Looking forward to hearing from you again.
Best Wishes Jenny Kilvert
Colleen replies:
Hi Jenny,
Thank you for your letter.
She is a little tired and the skin on her finger tips, scalp and eyebrows are peeling. I have not mentioned to her that she may loose her hair in a month or so. I do not want to worry her. She does not remember a lot of what happened because she became so sick - vomitting, rash, 105 temp, 20 something blood pressure and 150 heart rate. At first I thought she had the flu, but sensed something more as the day went on, thought maybe dehydration or kidney infection but never thought of TSS. It was my brother in-law that mentioned it to the emergency room staff as they were treating it as meningitis or something else. Thank God he did.
We were on vacation in California when it occurred.. She was extremely fortunate to have quick and very good medical attention. They put her on 3 bags of antibiotics for 48 straight hours in ICU. They identified each bag separately as the "Navy, Army and Marines" and said they were giving her everything they had. It worked.
I am so very sorry for your daughter as I cannot imagine how one copes with such a loss.
Thank you again for writing to me, as the information is very helpful and comforting. I truly appreciate it.
Sincerely,
Colleen
CLAUDIA WAS ON A SKIING HOLIDAY IN CANADA - FEBRUARY 2008
Dear Tampon Alert,
Hello, my name is Claudia and I have just suffered from Toxic Shock Syndrome. I had all the usual symptoms but one of my friends had flu so I assumed it was flu. I am feeling a lot better now and luckily the hospital knew immediately what it was. I was just concerned about my hair falling out? Do you think it will and if so how much. I did recover quite quickly. At the moment my hands and feet are peeling. My type of person is strong, but I have asthma and mild eczema. Will it also effect me having babies when I'm older? I'm 18 years old. I was just wondering for some general advice and also am I likely to get it again, can I use tampons again. Sorry for all the questions. Thank you,
Claudia.
Tampon Alert Campaign
Dear Claudia,
Thank you for your email. You must be going through turmoil at the moment so I hope I can put your mind at ease and answer your questions.
1. Hair falling out. This can vary, but it always grows back. It usually starts to occur a month or two after a TSS experience. But it doesn't happen to all sufferers. If it does happen to you, you will notice it gradually as you brush your hair. It is believed to be caused due to "shock", when the blood does not circulate effectively to the body's extremities and so is starved of oxygen for a while. It all depends on how long the "shock" lasts. In your case, as TSS was recognised quickly, you may not suffer this after-effect.
2. The skin on palms and soles peeling is another after-effect caused by shock. It should get back to normal soon, but keep a look out for further infections as the skin layer has been damaged.
3. Having babies. There seems to be no problems with fertilisation. A few years ago, a 17 year old young woman in Sheffield had severe TSS and now she has 3 lovely children.
4. Can you get it again? Yes if you use tampons containing rayon (i.e. all the common brands). It is highly recommended that you use alternative sanitary protection, e.g. all-cotton tampons, towels, cup or sponge. The latter 3 can be re-useable. See our website for examples www.tamponalert.org.uk
If you think back to previous periods, you may recall that you could have suffered some of the early symptoms of TSS. It may have been coming on for some time. TSS is caused by the reaction of Staphylococcus aureus bacteria and rayon, which forms a toxin, gets into the bloodstream and poisons the body.
I would be very grateful if you could tell me more about your episode of TSS please. When, which symptoms, which hospital, what happened in hospital, which brand of tampon did you use, what are your after-effects, etc.
I can send you a pack of free leaflets if you like. They make it easier to explain TSS to your friends and you may wish to tell other people about the danger of tampons. Also if you would like to talk to another TSS sufferer I can put you in touch. It's good to talk!
Looking forward to hearing from you again.
Best Wishes Jenny Kilvert - for Alice Kilvert Tampon Alert
JOAN IS CONCERNED ABOUT A LOST TAMPON - SEPTEMBER 2008
Dear Tampon Alert,
I think I may have a tampon lost inside of me. I have a foul odour during sex. I bath and it goes away. I am embarrassed to go to the Doctor's. Is there some kind of drink or something to make it come out?
Joan
Tampon Alert Campaign
Dear Joan,
Thank you for you enquiry.
I can assure you that it is unlikely that you will get Toxic Shock Syndrome from having left a tampon inside you, since you would have had the TSS symptoms by now. However, you need to have the cause of the smell investigated and removed. The tampon will still be in your vagina as it can't get past your cervix and into your uterus.
I'm afraid there isn't a drink that you can take. You have to see a medically qualified person to investigate it. This does not have to be a doctor. Is it possible for you to see a nurse at a nearby clinic? This sort of thing happens quite frequently, so don't be embarrassed. Doctors and Nurses understand. But please have it looked at as soon as possible as it will only get worse.
Please feel free to email again if you wish.
Best Wishes
Jenny Kilvert - for Alice Kilvert Tampon Alert
JENNIFER FROM MICHIGAN STILL EXPERIENCES HAIR LOSS DUE TO TOXIC SHOCK - JUNE 2008
Hello,
I found your organization while surfing google for more information on the long term effects of TSS. In Feb. 2006, I took myself to the Emergency Room with symptoms of what I had been told was a kidney infection after previous doctor visits. Well it turns out I had Toxic Shock Syndrome and I was hospitalized. My kidneys started shutting down, but I was lucky enough to be helped in time. They said that this was tampon related, but I had always been extremely careful to use them correctly. They claimed that maybe I had been predisposed to the bacteria growth, but I have no idea what that means and they never bothered to explain, not that my mind allowed me to think correctly.
After I was released, my skin pealed and my hair fell out at an alarming rate. I haven't had the energy or positive attitude that I had before and I go through horrible bouts of depression. The one question that no one has been able to answer is if it is normal for me to still be experiencing hair loss. Every year since then, at least, I have months where I loose up to 30% of my hair, sparingly. This time it seems to be worse. The worst part of telling people about my experience is the fact that they automatically assume that I don't practice good personal hygiene...it's a horrible experience and I don't think anyone should have to feel bad about it. Thank you for providing information for women/men that may experience this.
Sincerely, Jennifer
Tampon Alert Campaign
Dear Jennifer,
Thank you for getting in touch with us. I read about your TSS experience with great interest and hope that these words will help you.
To start with - it's not your fault. Even if you follow the instructions carefully, TSS can start within 2 hours. The bacteria, (Staphylococcus aureus) which is already in the vagina and is harmless, is suddenly in contact with rayon in the tampon. There is a reaction which produces toxins and it's this poison that permeates through the vaginal wall and enters the blood-stream. If the body's immune system is weak at this particular time, the poisons overwhelm the immune system and damage organs.
Predisposed means that your body has the environment for developing Toxic Shock. If this was true, you would have developed TSS the first time you used a tampon. However, on this occasion, if your immune system had been weakened by another ailment, you may have had a greater "likelihood" of developing TSS.
Tampons are NOT sterile (unlike first-aid dressings which are sterile). They are individually wrapped and sealed which gives the impression that they are sterile, but they are not. (Tampon manufacturers have told us that it would be too expensive to sterilise tampons).
Research sponsored by tampon manufacturers and also independent researchers have found that the highest RISK FACTORS are (1) HIGH ABSORBENCY tampons (ie containing rayon or other man-made fibres) and (2) CONTINUOUS USE during a period (best to alternate with a pad/sanitary towel). It would appear that leaving a tampon in too long is not a Risk Factor. However, if TSS starts to develop, the tampon should be removed immediately. So, when you read about a "forgotten" tampon it's usually because the user is probably semi-conscious and unable to remove her tampon AFTER she has become very ill.
You seem to have had some typical after-effects of TSS. The peeling of palms and soles is quite common. However the hair falling out is usually only on one occasion. Perhaps you should see a hair specialist to see if you need treatment or nourishment to stop it coming out again. The cause of hair falling out after a TSS episode seems to be oxygen starvation during TSS. The "shock" bit is synonymous with low blood pressure, when the body diverts all the blood to the vital organs and it is very restricted in the extremities of the body. (This is also why TSS sufferers sometimes have gangrene when toes and fingers turn black and may fall off).
Another after-effect is lack of energy. Most TSS sufferers find that this lasts for a year or two as the body needs time to recover from this massive ordeal, but it does get better. Some TSS sufferers have experienced short-term memory loss, but this gradually gets better, although not necessarily back to normal. Some sufferers have also had bouts of depression and emotional upset. I think this is normal following a near-death experience. Some sufferers have found counselling useful, but others have maintained contact with each other to talk things through. I would be pleased to put you in contact with other TSS sufferers, (both in USA and UK).
Many thanks again for contacting us. I hope you feel better real soon. Looking forward to hearing from you again.
Best Wishes,
Jenny Kilvert for Alice Kilvert Tampon Alert
COULD THIS BE TOXIC SHOCK SYNDROME? - MAY 2008
Hi Tampon Alert,
I just wanted to say a big thank you for providing this information on your website.
Tampons are things most ladies use and the truth is they don't know or forget about the impact that TSS has to not only the sufferer, but the family too.
The reason I looked at your website is I have been feeling horrid even before my period started. I wore slimming knickers the day before I started and felt like my insides were being squashed. Of course I removed them at night, but was unable to sleep because my insides were hurting and I was very much in pain.
The next morning I was unable to walk and was in severe pain. I though this was a result of me wearing the slimming pants, only to find I started my period, (so it wasn't my slimming pants).
That's when I used a tampon and since then I've been in severe pain and had a fever. I've had a headache for three days and was only able to eat yesterday. All I had was two biscuits and this morning I've had diarrhoea.
I just need some reassurance that I'm not over-reacting and that it's period pain I'm suffering from rather than TSS.
Your advice in this matter is much appreciated.
Kindest regards
Jaya
Tampon Alert Campaign
Dear Jaya,
Thanks for the enquiry.
Your condition sounds complicated. It's unlikely that you have Toxic Shock as the pains began before your period. But if you are using a tampon now, my advice is to remove it and monitor your symptoms (see website for symptoms). If your condition does not improve then you need to see your doctor asap. If you get very drousy or semi conscious you need to go immediately to an A & E Hospital. Ensure some one is with you for the next 48 hours.
I don't want to alarm you, this is just a precaution. However your symptoms are somewhat severe, so I would call the doctor if you are not feeling any better by now (5.40 pm).
You are absolutely right about TSS affecting the whole family. I feel like a Toxic Shock sufferer myself, as tampons killed my daughter.
Please let me know how you get on.
Best Wishes Jenny Kilvert.
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
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
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
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
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
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
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
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
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
| Shakeira from Washington State - UPDATE - August 2006 |
Shakira had Toxic Shock Syndrome in November 2004, whilst using tampons. Her Story (see Case Study) finished as her hair was beginning to "fall out in handfulls". Now we bring you an update...
|
My hair fell out and I was completely bald by February of 2005. Over a year later it's grown back thick and healthy and curly! I had very straight hair before. It's taken a bit but I am off anti depressants and back down to the weight I was before being sick. I finally feel 'normal' again. I still have terrible scars on the backs of my ankles from the staph bacteria.. but it gives me the opportunity to share my story with any woman that asks.
I feel so strongly that women need to know the true risks of TSS and the symptoms that happen to many women that are not included in the pamphlet provided in the tampon box. I'm part of a MOPS group (mothers of preschoolers) and every year I try to share my story and the warnings about tampons with the new group of mothers. I came so close to loosing my life that I want to make sure no one ever is in the situation I was. Thank you for your website.. and please keep sending any emails my way. If there is any way I can help, please let me know!
-Shakeira
| EMAIL FROM TANIS IN ALBERTA, CANADA - March 2005 |
Hello, I've read your web page on Tampon Alert and found it very helpful. I didn't realize that TSS was such a serious condition. The way it's described on the leaflet in the tampon box makes it seem not so serious. Even though it says it can be serious, it doesn't really reveal very much.
I think that this issue needs to be made clearer to people. I myself have a heavy period, so I don't keep tampons in for more than 1 to 2 hours usually, and I usually only wear them if I have to walk somewhere. Otherwise I just use a pad.
I've talked to some girls who wear tampons all the time, even when they go to bed. I've told them time and time again to never do that because of the risk of TSS is definitely higher when you use them continuously throughout your period and overnight (more than 6 hours). They seem to think that it's not that big of a deal and that it's so rare it wouldn't happen to them.
I think that it would be very beneficial for the instructions in the box to clearly list the symptoms and to underline that overuse can be very dangerous. I suppose they don't really put a lot of emphasis on that because they want to sell their product. I think that they really need to change that. They should make it big and bold and VERY clear about what TSS is and what it can do to you.
I am also concerned that tampon commercials on TV are somewhat misleading too. They tell about how great they are to wear and such, but they don't say a thing about the dangers - not even in small text at the bottom of the screen.
Tampon Alert Campaign
Dear Tanis,
Thank you for your comments. We appreciate you taking the time to read our website. You are absolutely right that the warnings on tampon packs should be bolder. Some time ago we wrote to the tampon manufacturers in UK and Europe, and the UK Government to ask for improved warnings. We recommended placing a yellow warning triangle (as in health and safety at work) next to the warning already on the pack. (If tampon makers think that it's important to put a warning on the pack, then surely it's important to draw people's attention to it)! However, the tampon industry spokesman said that they didn't think that it would be appropriate.
We also think that that tampons should be a sterile product, just like first-aid dressings have to be. Currently, tampons are individually wrapped, but they are not sterile. The industry spokesman said that making them sterile would be too expensive.
Best Wishes, Alice Kilvert Tampon Alert