Case Studies

27.

Lucy's mother Caroline says: My 14 year old daughter Lucy has been very ill twice in the last two months. Her symptoms included severe vomiting, diarrhoea, fainting, skin rash, muscle pain, bloodshot eyes etc - over a week in November (2008), and then again 4 days this month. Each time has coincided with her period, and she started using tampons around this time.

Our concern is that we did try to get assistance for Lucy when she, my husband and I, were all in great distress over her condition. She could not get to the toilet without assistance, and immediately lost consciousness when there. She could not keep liquids down at all for nearly 3 days, quite apart from not being able to eat.

Initially in November we put this down to the "winter vomiting bug" which had been going around her school. However, we were worried enough to call NHS24 at 4 am when we spotted the rash developing. We were asked to take her by car to the emergency admissions, but I was unable to get Lucy up from the sofabed at all. I called back and was asked to do the meningitis test which was OK. We then were told to call the out-of-hours GP who basically told us to let her rest, and try to get her to take some water (!), but he did not visit.

At this point, can I say how helpful your website has been: looking back on what I now believe is TSS, I am horrified at how close Lucy came to being very seriously ill. As her mother, I feel acutely conscious of my lack of awareness of this condition. We want to ensure that other people know about her history now too.

We finally got Lucy to the GP surgery two days later, where she was checked over and diagnosed as suffering from a "virus", potentially linked to thrush. This was despite my having explained that Lucy was menstruating and asking if it could be linked to her use of tampons (I must have had some memory of reading about TSS before). She was prescribed a strong antibiotic and steroid cream. She did not have a blood test, although it was mentioned "if Lucy did not improve" this could be carried out the following week.

Finally we hoped she was back to normal just before Christmas, when she was struck down again with vomiting, high temperature, fainting etc. Whilst this was really upsetting Lucy, I'm afraid that we stupidly put it down to bad luck in catching the vomiting bug again.

It was only yesterday that I picked out the leaflet from the Lillet's box and read it. My husband and I have now researched online and came across your site - thank you. We are all now better informed and will tell others about this.

Posted 12/5/2018

26.

Deborah says: I am a survivor of TSS. In 1982 I used one tampon and ended up in the hospital in a coma. My question is, can it cause Cognitive impairments? I lost a lot of my memory as a child and I am doing my internship for school at a residential treatment center. I have struggled tremendously with my memory and thinking process. I was 27 when I had it and I am 52 now. I would appreciate any information you could give me. Thank you Deborah.

AKTA says: Memory loss is a common after-effect of Toxic Shock Syndrome, but generally memory recovers. However, as toxins can penetrate the brain there may be a connection with your memory and cognitive ability. It could also be that the toxins have a bigger impact on an organ that has previously suffered. We need to see if there has been any research in this area.

Posted 12/5/2018

25.

Nia says: I am e-mailing you after finding you through Google as I am concerned that I may have TSS. I used a tampon on Monday 25th August. I felt a considerable amount of pain in the right side of my stomach and lower back a few hours later so I removed the tampon. On Tuesday, Wednesday and Thursday my body was aching all over and I felt nauseous. Yesterday evening (Friday) I felt really cold and shivery, but my boyfriend told me I was actually very hot and burning up. I was still aching all over and my head was hurting. I took some paracetamol which seemed to bring the fever down and helped with the headache. When I woke up today my neck and shoulders were very stiff and my headache was worse. Throughout the morning I was having cold sweats and couldn't lie down as it hurt my head even more. I have been taking paracetamol every 4 hours. I could hardly move this morning, but now I feel well enough to send this e-mail. I've checked my body for any rashes, but I cannot see anything. Apart from a dull ache in my head and a complete loss of appetite, I don't feel too bad right now. Have I reason to be concerned?

Posted 12/5/2018

24.

On the 30th and the 31st of January 2008, my parents had to keep me off school as I was complaining of flu-like symptoms. I then went back to school on the Friday. I didn't feel 100%, but I knew year 11 was a very important year for me as I was sitting my GCSE 's in the summer. I was feeling fine on the Saturday, so I slept at my friend's house. This was my sixth day of my period and I didn't feel the need to change my tampon as often as at the beginning of my period. The following day I ended my period.

I woke up the next morning, feeling tired and sick, so my friend's mam took me home. As soon as I got in the house I went straight to bed with a big drink of water, as I was feeling very thirsty all the time. I woke up after being asleep for about 3 hours and went for a bath to see if that would make me feel better, which it did as it cooled me down, When I got out of the bath I fell asleep on the bathroom floor. For the rest of the day/night I was asleep until the next morning. All I kept thinking was what's the matter with me?

The next morning it took me about 45 minutes to get out of my bed as my body felt very stiff. I went to see my mam and she must have been wondering what was wrong with me, as it was only half past 6 in the morning. I couldn't explain what I was feeling like as I had never felt like that before. I just wanted to go back to sleep and stay in the same place all day. I knew I felt better when I was lying down. My parents had to go to work that day, so I was left in the house by myself. However, during their dinner break they came to see me and they realised that I wasn't getting any better, I was getting worse. Every time I went to get out of bed I couldn't because my body felt so heavy.

When my mam and dad finished work they made an appointment with my doctor as soon as they could. Thankfully it was that night I got one. I can't really remember what happened at the doctor's, but the doctor thought it would be a good idea for me to go to the hospital as she didn't really know what was wrong with me. I remember being in the car with my mam and I was so sacred.

As soon as I got to the hospital, I was given paracetamol while they were trying to find out what was wrong with me. They couldn't identify my illness straight away, as it's so rare. I think the doctors were quite worried as well because of how low my blood pressure was. When they did find out I had Toxic Shock Syndrome (TSS), loads of doctors wanted to see me. I felt a lot safer when they knew what it was. When I got told I had TSS, I couldn't believe it, as I had read about the illness in magazines. I didn't tell anyone, not even my close friends as I thought it was really embarassing. When my friends asked I just said no one knows yet. I never thought it could happen to anyone I knew, never mind myself.

I got put on a drip and then got moved onto the ward for 3 days. Every day I was there I felt I was getting better, but still had no energy. I couldn't be bothered to talk to anyone as I hadn't eaten properly for 5 days. All I kept thinking was I am so lucky to be alive. When I was discharged from hospital I had to take antibiotics for at least a week and I had to take 12 tablets a day. I was feeling a lot better and a lot happier. I was off school for 3 weeks because I needed to get my energy back and I wanted to wait until my hands and feet had finished peeling. I am so glad that I'm here to tell my story. Since I had TSS I am more careful about using tampons. I also think my friends and family are glad as well, as when I had TSS it didn't only scare me, it scared the people around me as well.

Posted 12/5/2018

23.

My name is Amy Hutchison. My daughter, Ashley, was hospitalized on September 15th, 2007 with Toxic Shock Syndrome. She was 13 at the time. However, since we live in a small neighbourhood, the local ER physicians were not able to distinguish what was wrong.

Ashley's story began on the Thursday before. She went to school that morning and was feeling fine. By lunchtime, she said that she had a headache and her stomach was hurting. By the time school was out, she was running a temperature, vomiting, and had severe abdominal cramps. We took her to the Emergency Room and they diagnosed her as having a viral infection. They prescribed Ibuprofen for the fever and the aches. All day Friday, she continued to vomit and had a mucous like discharge that we thought was coming from her rectum. Her temperature continued to rise until it reached 104.3. On Saturday afternoon, we were sitting at home and she mentioned going to the restroom. While she was using the restroom, she started going into a seizure. I immediately called the ambulance and had her taken back to the ER. After spending the day in the ER, they decided to admit her for observation since they were unable to determine what was causing everything. Our family doctor arrived later that night and upon his initial examination of her, he ordered us to transfer her to the Children's Hospital in Indianapolis, IN, USA. By this time, she had developed the red rash that covered most of her body and she was considerably swollen.

En route during the 45 minute drive, she was still somewhat conscious. Upon arriving at the Children's Hospital, they immediately took her to the Pediatrics Intensive Care Unit and started administering medical treatment. By this time, she was unconscious and had slipped into a light coma. When the doctor spoke to me some minutes later, he informed me that is was likely she would not survive this trauma. He told me he wanted me to be prepared. The staff at St. Vincent's Children's Hospital continued to treat her when most places would have given up by then. They started intravenous lines, they inserted a ventilator, and they set her up with a feeding tube and a central line into her heart. After starting her on seven different kinds of steroids and three antibiotics simultaniously, she started to show minor signs of recovery. On Monday morning, a Gynecologist arrived to examine her and see how bad the disease had spread. It had already been determined that this was due to tampon usage. After the examination, the Gynecologist informed me that the mucous discharge everyone thought was her bowel movements was actually infection that had hibernated within her vaginal area, all the way into her uterus. They started another round of antibiotics to clear up the remaining infection. The blood test results came back at that same time and it was determined that her blood was poisoned significantly. They started an intravenous transfusion of blood. She ended up receiving three pints of blood to replace what she had lost through her kidneys.

On Tuesday, we received word that her kidneys were in kidney failure and she was suffering from lung failure as well. But on Thursday afternoon (exactly one week since the symptoms began), they were able to see signs of improvement. Her blood counts were back to normal, all the infection was gone from her uterus and vaginal areas, and her lungs and kidneys were starting to function again. After staying in the hospital for another eight days, she was finally allowed to come home on a Friday. But although she has been home for almost a year, her long term effects are far from over. We found out today that she now has asthma as a result of the lung failure and her kidneys are only functioning at 90% capacity. The doctors are hopeful that the kidneys will heal themselves but they cannot guarantee that. We were also informed that as a result of the severity of her infection she could have trouble conceiving a child later in life. But that has not been determined with any accuracy as of yet. Although her troubles are far from over, she is determined not to let this deadly disease sway her from achieving all of her life goals she has set for herself. And we thank God each and everyday for allowing us the opportunity to continue to watch her blossom and grow into the beautiful young lady that she is today.

Posted 12/5/2018

22.

Jaime had arrived home from school one day and complained of being sick to her stomach, stomach pains and head aches. Her mother Alison thought nothing of it and assumed it was just cramps and possibly a stomach bug. She gave Jaime a Midol and something for nausea. The next morning when Jaime woke up she had gotten worse with the pain and was now throwing up and complaining with the head aches being worse and a temperature of 102. Alison took her to a nearby ER where they treated her for a negative test of Strep throat and sent her home. As the day went by and Alison watched Jaime lay in bed moaning with the temp bouncing from 102 to 104 back and forth, she was starting to panic. Nothing seemed to break the fever or make her better. That evening when Alison's husband got home, they were talking to Jaime and she just looked at Alison like she was in a state of confusion and was not comprehending what her mother was saying. Alison immediately took her to a different ER. Within 15 minutes they had the diagnosis of toxic shock syndrome.They then sent her to another hospital specialising in pediatrics where Jaime spent 2 days in ICU and a week in the hospitals where they gave her several different rounds of antibiotics. (Alison thanks God every day that the doctor who was at the second hospital was working that night because he saved her life)!

When questioning Jaime about her tampon uses, she stated that she only had 4 minutes in between classes to get her books and get to class and she was using super tampons so she wouldn't have to go to the bathroom as much. This is what triggered TSS. Doctors advised Jaime not use tampons for 6 months after she left hospital.

Posted 12/5/2018

21.

I was 20 and using Tampax tampons, with a higher absorbency due to the fact that I had horribly heavy periods (Which is strange because I don't even get them anymore). I went to Munson Hospital in Traverse City, MI and it happened over a period of three months really. I got sick for two months straight and I happened to be on my cycle those weeks. I had kidney surgery when I was a wee thing and it has caused a ton of urinary and kidney infections since then. So the first two times I got sick, I happened to be visiting my parents and they took me to the clinic both times because I don't have health insurance. Both times they told me it was a kidney infection and gave me enough antibiotics to make me feel better until I got sick again. The third time I was back at college and while staying at a hotel with friends for a birthday party, I started getting shakes and a horrible fever. I thought I knew what it was so when they insisted they take me to the emergency room, I declined and they brought me home. The next night I ended up getting sick over and over again and saw that I had horrible rash (which I soon found out was a symptom of TSS). I drove myself to the ER and they admitted me after giving me an IV. My parents were out of town visiting Seattle when I got sick, so I was alone for the first day or so until my grandmother came to be with me. It happened relatively quickly...considering I started feeling sick one day and by the 3rd day I was in the hospital They said my kidneys were starting to shut down and after having to draw so much blood, they decided to put in an IV directly into my neck to keep the veins in my arm from collapsing.

I guess it's just strange to look back on everything and remembering things that I wouldn't expect to remember...like the name of the ICU nurse that helped me up every hour to use the toilet because I couldn't use a catheter. Or when the attendant sat and watched late night talk shows with me my first night because I was scared to be by myself. I really hope this helps someone and I thank you for helping me know that I'm not alone.

Posted 12/5/2018

20.

I was in Canada on a ski course training to be a ski instructor and I got Toxic Shock. My first symptom I believe was itching. I can't even explain how itchy it was. I assumed it was a yeast infection, although I have never had one before. So that was on Friday and I got my period on the Thursday. Over the weekend I felt nothing too serious. There was less itching, but it was still there and it was very red and painful. Then on the Monday I began feeling ill. I skied throughout the day on Monday and then around five I was sick. I kept on being sick and then I got diarrhoea. When being sick I was also on the loo, I had no control. Its all a bit of a blur, but I became slowly unconscious, although I can remember certain things. I couldn't keep any drink down, but the problem is, these symptoms are the exact same as the flu, that is where the danger is, everyone thought I had the flu!! Then after three days of being in bed I got taken to a clinic. At this point I could not really move, my muscles were non existent.

I was so unbelievably lucky because the Doctor at the clinic said get this girl to a hospital now and I went straight away and they knew what was wrong with me. I had a tampon in. I was so ill I didn't know what was what, so that could have been some kind of indication. The hospital was in Canada and I'm not completely sure on everything that was given to me. So, I went in the hospital on the Wednesday and then on the Thursday I formed a blue rash. Also, my legs, feet and hands swelled up and I couldn't move. However, I did recover quickly, I was in hospital for five days. But now I am walking normally, although I am defiantly more tired. This is all very recent though, I went to hospital on the 29th of January. I'm quite a strong person, well I hope I am, I am trying to keep myself motivated, but it is hard and when I found out my hair might come out I am a wee bit upset.

The Doctor said that I could have died, maybe if I had left it for 24 hours? How likely is it that my hair will fall out? My after-effects are tiredness, weak muscles and my feet and hands are peeling. I'm just so confused by it all. The tampon that I used, I think was a Canadian one, but I am not 100% because I didn't have my own pack so I used a mixture. I really want people to be more informed about toxic shock, its not something that should be ignored.

Posted 12/5/2018

19.

Kathy had Toxic Shock Syndrome in 1995 when she was 27 years old. Her first period after having her third baby was heavier than usual and so she had to use a super absorbent tampon. When she was in hospital she felt a numbness in her hands and feet and to this day her right hand is weak. She also suffers from an ovarian cyst problem which may also be attributable to her episode of Toxic Shock Syndrome.

She was very grateful to see the Tampon Alert website and said "it seems that no one really likes to talk about Toxic Shock and people seem not to believe that I had it. After reading the website stories I feel I am very lucky to be alive. There were people and doctors who played a big role in saving my life".

Kathy writes, "I had my third child on Feb 24th 1995 and returned to work as a delivery Driver 6 weeks later. The second week of work my period started and it was heavy, something that I was not used to, but normal after having a child. Driving after having a child was extremely hard. I was out of shape and very much behind on my route this day. I noticed that the tampons I normally use were not holding up, so I stopped during my route and picked up Super Tampons made by Tampax I believe. I continued with my route and am not sure when I exactly got done, but it was late.

The next day I was sick. I thought I had the flu. What was really strange is I couldn't break my fever no matter what I took and my feet and hands felt numb. I spent all day in bed. At about 9pm that night I went to get into the tub, trying to lower my temperature and I passed out. My sister found me on the bathroom floor. She right away asked me if I had been in the sun, as I had what looked like bad sunburn. I was so out of it I never even noticed or remember this rash. My sister called my insurance company as at this time you had to call an on-call nurse before going to an emergency room. She right away asked my sister if I had gone to the bathroom all day (I still wonder how she knew to ask this). I told my sister in my amazement that I had not gone to the restroom all day. The nurse told her to get me to the Hospital right away because my kidneys were shutting down.

My sister took me to Thunderbird Hospital in Glendale AZ. My memory is very foggy about the whole incident, but my sister would probably recall better than I can. When they took me into the ER the doctor was very concerned that he couldn't get my blood pressure to stop going down. Then after about an hour or so, he found my rash and admitted me into the hospital that night approx at midnight. I was in good spirits still until morning came. They called my doctor and he didn't show up until the next day around 6pm. They were doing all kinds of tests on me trying to figure out what was wrong. My sister-in-law kept yelling at them that I had all the symptoms of Toxic Shock and they ignored her or probably just didn't believe it. They called my OBGYN and he showed up around 11pm that night. He diagnosed me with Toxic Shock. I was pretty ill by then and remember yelling at anyone who touched me as it hurt.

They immediately rushed me to ICU and called in more doctors. I remember a doctor putting a shunt in my heart and telling me I had a 50/50 chance to survive as I had asked him. I had an IV directly to my heart and one in both arms. I remember that my right hand hurt the worst out of anything on my body. I was constantly having people massage this hand as I do today by my husband. I kept asking them why my hand hurt so bad and the doctor told me that my body was concentrating on keeping my organs alive and that my extremities would be the first to die, but he wasn't going to let that happen. I was taken out of the main ICU in 3 days and moved to regular ICU for another week, then I got pneumonia.

I left the hospital after another week in a regular room. I got out on May 1st 1995 and had problems getting around for about a week. My right hand gave me a lot of pain and was numb. The doctors told me I probably had some nerve damage, but it would improve over the years. It did improve as far as numbness, but still would get achy from time to time over the years. I left the delivery company in 1999 and became a Police dispatcher/911 operator which I still do to this day. This might be the reason I am having problems now due to typing. I have noticed through the years that my typing isn't as fast or accurate as before the toxic shock. My left hand gets ahead of the right hand. I used to play softball all the time and stopped playing because my right hand had problems knowing when to release the ball. I would just throw it into the dirt from time to time which was very embarrassing for me. I did have problems with continual bleeding afterwards and had a DNC, which seemed to clear it up, but my periods have never been the same. I did lose a bit of hair, but do not remember it falling out in clumps at all. I do remember my hands peeling, but not my feet or anywhere else on my body. I don't remember getting sick a lot as a Delivery Driver afterwards, but I probably didn't pay attention because the doctors all told me I wouldn't have any problems afterwards. They did say though that I would need to go to the emergency hospital if I got any flu symptoms, just in case of getting Toxic Shock again.

I went back to work a month after getting out of the hospital I believe and don't know how I did it. I had to, I was a single mom at the time. I was 27 years old, was divorced with 2 children and just had a 3rd child with my boyfriend. We have since married after my Toxic Shock incident. The doctors and nurses all said I got it due to just having a child and wearing super tampons which I never usually did. Short-term memory loss was an issue, and I still have problems at times. My energy level seemed to be fine after about a month or two of recovery. I was in good shape at the time so I am sure that helped. Some more of my symptoms were I couldn't keep anything down. Even after the ER doctor gave me a shot to stop throwing up, I continued. My ovarian cysts disease showed up about a year after having Toxic Shock. I thought I was going crazy! I went to my OBGYN who put me on anti-depressants thinking it was from having Toxic Shock and I felt different because of it. I took those for about 2 weeks, but then threw them into the garbage and changed my primary doctor to a woman who I thought would listen to me more. I am still having treatment for the cysts. I have anxiety a lot, but not severe.

The doctors who treated me were all great and each of them were by my bedside every day, weekend and all. I received very good treatment at the hospital and my OBGYN at the time made sure I did. Well that is my story as I can remember it. I certainly won't be using tampons again.

Posted 29/11/2006

18.

On Tuesday afternoon, 15 June 2005, 16-year-old Finola Tyson of Preston, complained of headache and stomach pains and asked her mother, Ange, to ring work, to say that she would not be attending that evening shift. It was the third day of her period and she had been using tampons. Around 10pm Fin said she was tired and wanted to go to bed. During the night she was sick and the next morning still complained of a headache and stomach ache. Her mother gave her Paracetamol and rang the doctor. He prescribed some Mefanamic Acid (Ponstans 40) for her period pains, (at mother's request), and also prescribed some tablets to stop her being sick. Ange collected the prescription, administered it, gave Finola a jug of water asking her to drink plenty and left her in bed to sleep. A little later, Ange. asked Fin how she felt and she said she had not been sick anymore and that her stomache ache had improved. She just wanted to sleep.

The next day, Fin had an exam at school, so she was awoken at 7am. She came down stairs in her pyjamas, looking very lethargic. She had a red rash under her arms and was breathing faster than normal. Ange. asked Fin to breathe in through her nose and out through her mouth. It was at this point that Ange's partner John, noticed Fin's tongue. It was red with white spots, like a strawberry. She asked Fin. if she had a sore throat to which she replied she had. Ange. phoned the NHS Help-line and spoke at length with one of the Advisers who said "take her to her GP and don't worry". The doctor examined Fin., took her temperature, checked her throat, confirmed that she had a red raw throat, and diagnosed viral infection. He said that as she was taking her exams, that would account for her panic breathing. The rash was put down to eczema for which she had only recently been diagnosed. Fin was prescribed Amoxicillin for her throat, gel for her tongue (anti fungal), steroid cream for the rash and more Paracetamol tablets. Ange. monitored her daughter through the day, making sure she drank plenty of water and took all her medication.

On Friday, there was still no change, no better, but no worse. Her "strawberry tongue" had gone down slightly and the white spots had subsided. On the Saturday morning, Ange. ran a bath for Fin. She went to her room to say that she would feel better if she had a bath and washed her hair, as she had not had one since Tuesday morning. Fin. agreed, but couldn't get up. She complained that her bones were aching and started to shout at her mother that she couldn't get up. Ange. managed to swing her out of bed and with help and support they got to the bathroom. Putting her into the bath was OK. She left her there for 5 minutes and returned to find she had not moved. Ange. knelt down to wash Fin's hair and then her body. She kept complaining of hurting and being tired. Getting Fin out of the bath was a nightmare, she felt so heavy and kept apologising all the time. Ange. managed to get her dry and back into bed. Ange. suspected meningitis and did the glass test on her rash, it stayed white.

After 3 days on penicillin Fin was worse than ever, so Ange. phoned the doctor again. Being Saturday the calls were redirected to the hospital Primary Care Centre. The nurse on duty said get Fin to hospital as soon as possible. Ange's sister volunteered to take them to hospital and they drove straight there. The doctor called her in straight away. He checked her stomach and phoned someone straight away. There was a definite panic in the air as Fin had drips put into her. Ange. was asked to describe Fin's symptoms and history leading up to this day over and over again. They all kept saying what a good mum she had been and that she had done everything she could have. Then the bombshell, they confirmed they thought Fin had Toxic Shock Syndrome. She was taken to the Intensive Care Unit (ICU) around 5.30pm. There was a lot of activity, putting in more lines for drips, etc. The staff where brilliant right from the start, although one nurse was increasingly concerned that Fin was only on Oxygen and needed ventilating as she appeared to be weakening. At 8.30pm whilst a doctor was explaining the severity of the illness, Fin had a cardiac arrest. It felt like an eternity for Ange and John, but then the nurse came to say that they could go and see her. She was alive, but was now on a ventilator. The doctors explained the serious nature of Fin's condition and that they were doing everything possible. They were told that the best thing they could do, would be to go home and get some rest, Fin was going to be in hospital for a long time. They got a taxi back home and after a lot of tears and disbelief that something as horrific as this could happen to a beautiful girl they all tried to get some rest. The telephone rang around 2.30pm. It was the ICU and they said it would be better if Fin's parents came back to the hospital as her blood pressure had dropped dangerously low.

Fin spent four weeks in ICU and after seven operations, lost her fight for life on Sunday 18 July 2004, just three weeks after her 16th birthday.

Posted 27/6/2006

17.

This is the story of an Australian woman who had Toxic Shock Syndrome 10 years ago, at the age of 11.

I had my first period in June 1996 when I was 11. Almost straight away I started using tampons, as my mom suggested them. I got sick about 6 months later just a few days before Christmas.

I was staying at my friend's house and I was on about the third day of my cycle. It was Sunday. I had just changed my tampon about an hour before, when I started to feel extremely dizzy. I could barely stand up, so my friend let me lie down. I slept for about an hour and when I got up I started throwing up.

I went home, and was in and out of consciousness all day and night. I had no idea what day it was. I was so delirious, I told my mom that Jesus was coming. I was so helpless that I couldn't do anything for myself. My mom took me to see my doctor on Monday morning and he took one look at me and told mom to take me to the Children's Hospital.

Once there, I slipped into a coma. The whole time my tampon had stayed inside me as I wasn't aware enough to take it out, and mom didn't know I had my period that day. Anyway, the doctors did MRIs and tried to find what was wrong with me. It wasn't until late Monday that they found the tampon, and then they knew immediately that I had Toxic Shock Syndrome. Whilst in a coma, my brain was swelling to a point where the doctors were considering drilling a hole in my head to release the pressure. Luckily that didn't happen. When I woke up on Tuesday morning the doctors said I had TSS, but hadn't recognised it straight away because of my age. I think I was the youngest person that they had ever heard of to have tampon-related Toxic Shock Syndrome.

I was in Intensive Care for the rest of the week. I was throwing up constantly and was connected to a drip, but by Sunday I was allowed out. My mom and my brother stayed with me the whole time. Everyone was freaking out. I think they thought I was going to die. I think I almost did at one point, but I was one of the lucky ones. Unfortunately, I was unable to tell them which brand of tampon I had used, as I had taken two different brands with me that weekend.

Recently I was reading the Alice Kilvert Tampon Alert website, about the after-affects of TSS, and I couldn't believe that I got off so lucky compared to others. I did experience loss of hair afterwards. I still get sick very easily, but nothing terrible. I had no idea that TSS affected your immune system so terribly.

Posted 27/6/2006

16.

Alexandra says "I remember almost everything. It is probably an experience I will never forget. On Saturday August 14th 2004, I woke up feeling fine. I was on my period and had been using Tampax Pearl regular tampons. I was only leaving them in for about 3-4 hours. I was always careful because I was afraid of getting sick so I followed the directions carefully".

Alex was visiting her grandparents in North Dakota. It was around 12 noon on that day when she started to notice that her hands were really red, puffy, and itchy. She didn't think much about it as she was going four wheeling. About an hour into the drive Alex felt as though her head was going to explode, it hurt so bad. Her Dad thought maybe she was dehydrated, so sat her down to recover.

"That night my illness got worse" says Alex. "I started to get chills and was extremely uncomfortable. It seemed as though no matter what I did, I could not get warm and then I would be really hot and sweating. I had a fever of about 101. The symptoms were just like I had gotten the flu, but my grandma didn't think it was anything serious, nobody did. The whole next day in the car on the way home to Wisconsin is sort of blurry. Sitting in the car was very uncomfortable. My neck was completely stiff and I couldn't move it at all. This is when I realized there was something really wrong with me. Ten hours later we pulled up to my house and my Mom came out to meet us because she knew that I was not feeling well. With the first look at me she decided to take me to urgent care at the local hospital".

The doctor in the Paediatrics Urgent Care Unit attempted to take Alex's blood pressure using the cuff, but it was so low that it was literally undetectable. Worried, she brought in a big machine to find it. Alex mentioned that her palms were itchy and the doctor looked at the rest of her body and found a "sunburn-like" rash covering the whole of her body.

The doctor decided to admit Alex and did a Lumbar Puncture and a Vaginal culture swab because she told them that she was having a period. They took blood samples for many different tests and put her on intra-venous antibiotics. Early the next morning, the doctor came in and said that Alex might have meningitis, Rocky Mountain Spotted Fever, or encephalitis. They still weren't sure. They found Staphylococcus aureus bacteria on her cervix. This and other factors detailed in Alex's medical record is what led doctors to the diagnosis of Toxic Shock Syndrome on the 17th August.

Alex says that she was lucky because she had medical help before the infection went sepsis. The doctors were very unclear. One said that it could not come back, and one said it could more easily. Her condition improved rather quickly because of how fast she got treatment, so she was released on August 18th, 2004. She was given antibiotics, but did not feel like her normal self for quite a while. On September 2nd, she felt shaky and uncomfortable and I really felt unwell. Alex's mom was so alarmed that she took Alex back to the hospital where they took more blood samples and she was admitted for another three days. During that time they found that Alex had a chronic sinus infection.

Alex says "after I was released I was always so tired and just not myself. I had always been very active before I had Toxic Shock Syndrome and I had rarely gotten sick. I noticed that the top layer of my skin of my palms was peeling away. It was really gross and it was happening a little bit on the soles of my feet, but not as bad. I missed a lot of school and had to have a teacher come to my house because it was so hard to get up in the morning. My junior year of high school was very difficult academically. Now I am a senior and doing better., although, I do get sick with colds, the flu, and sinus infections a lot. I do feel like I don't have the same immunity to illnesses as before. I am able to cope with it and this year I have been keeping a fairly good attendance record and have been able to be on the school's Dance Team because that is what I love. Because of getting sick, I had to miss many performances in my junior year".

"I was in the hospital for my sixteenth birthday" says Alex. "I definitely didn't imagine that, for my sweet sixteen. Now I really want to help others to avoid going through what happened to me. I really feel it is important to tell girls about the dangers of tampons, because I feel lucky to be alive. It would be a waste, not to tell my story, even if it could help just one other person".

Posted 24/4/2006

15.

Jessi, a 20 year old singer/songwriter, had Toxic Shock Syndrome when she was on holiday in USA in November 2005. The holiday was in North Carolina, where Jessi and her parents were looking forward to ten days of horse riding, quad biking and Christmas shopping. She was on the last day of her period and had been using a different brand of tampon than usual. The family had arrived on the Monday, but by 6pm on Tuesday, Jessi was feeling ill. Within hours she was fighting for her life.

I was disappointed to start my holiday feeling unwell", says Jessi. "I got up, as usual on the Tuesday, but I was tired and seemed to have a temperature, so went back to bed".

At about 2 pm Jessi's Mum woke her up. She had a very high temperature, headache, stiff neck, aching legs and felt very dizzy. She was shivering with cold and couldn't stand up. Her Mum half-carried her to the shower and turned on the cold water. That didn't help so she went back to bed. The light and any noise were unbearable and then an itchy red rash appeared all over her body. She was terrified that she had got meningitis. Jessi's parents took her to the local doctor. She had to be carried to car. Her Mum put a scarf over her eyes because the light felt so bright. She could sense that her internal organs were "on fire".

The doctor took a blood test which showed the white blood cell count was very high and a blood pressure was extremely low. Jessi's temperature was 102.4 degrees F. As it appeared to be meningitis, they took Jessi to the local hospital by ambulance and she became unconscious. The first test was a lumbar puncture where they took fluid from her spine. Fortunately the clear liquid meant that it wasn't meningitis, but what was it? Jessi went into Intensive Care, where she was put on a drip to replace the lost fluids and to run more tests. Her body was closing down and lungs, liver and kidneys were all failing. Her veins were collapsing and still the doctors did not know what it was or what to do.

After three days in Intensive Care, a Specialist in diseases arrived and asked if Jessi was using a tampon. It was explained that she had finished her period and she had taken it out. The Specialist did an internal examination and noticed that Jessi was red and inflamed so at last, Toxic Shock Syndrome was diagnosed. Jessi was put straight onto a course of antibiotics, and slowly started to recover. However, she was infected with MRSA and had to be quarantined and an allergic reaction to the penicillin made her swell up like a balloon.

Jessi was discharged from hospital after only eight days. She should have stayed for another two weeks, but the insurance wouldn't cover it. She was extremely tired, but is relieved to be alive. She gets infections easily now and is severely anaemic. Jessi doesn't use tampons any more.

Read more about Jessi's ordeal and recovery in Company magazine, June edition, available from 1st May.

Posted 24/4/2006

14.

Shakeira is 28 years old, and describes herself as a stay-at-home mother of 3 children under 6, and has always been pretty healthy. She lives near Spokane in the eastern part of Washington state in north west USA.

In November, 2004, Shakeira was using a super plus tampon named "Beyond", a brand that she had been using for 10 years. She had read the information leaflet, but thought that toxic shock syndrome would only strike a woman if she left her tampon in place too long. As such she always changed tampons every 6 hours.

Shakeira says "the first Saturday in November, I became ill that morning and for some odd reason I knew it was TSS. I was vomiting all the time and knew it was more than a stomach bug. I went to our "small town" hospital and told the doctor that it felt like TSS, and they asked me if I still had my tampon in place. Because I didn't have a red rash or high fever, they told me it was flu and decided to send me home.

On Tuesday, I knew that if I didn't get help, I was going to die. Four days had gone by and I had all the symptoms described on the leaflet. However, I was not in my right mind, and unable to do anything to help myself. My husband was taking care of me, following the doctor's instructions to keep me hydrated; give me nausea medication; and not to treat the diarrhoea.

I don't know how I made it to the car that night and the 10 minute drive to the hospital was unbearable. I was praying that they would not send me home again as I knew I was dying.

I don't remember much of that night, except extreme muscle pain, high fever and my mouth was so sore that I couldn't move my tongue without extreme pain. Every time I sat up I would black out. The next seven days were a blur of pokes, prods and doctors shaking their heads in confusion. I kept telling them that I think this is TSS and they kept asking me if the tampon was still in. (This made me so angry). They even made me submit to a very painful vagina examination, as I was very swollen and tender.

After a week in intensive care and recovery I was well enough to go home. Even though the skin was peeling off my palms and the soles of my feet (typical symptoms of TSS), they still were "not sure" what I'd had!

My recovery has been slow. I was 40 lbs heavier when I left hospital due to the fluid treatment. I don't have the same energy. There is a weakness in my hands. I had extreme pain in my arms and wrists if I used my hands in a certain way. I am on anti-depressants and my ability to handle stress is greatly reduced. I have, what the doctors call, "bows lines" on my finger nails. Now, in February, my hair is beginning to fall out in handfuls."

Shakeira emailed us for help. We were able to confirm that she had had Toxic Shock Syndrome and to allay her fears about her hair falling out (typical symptom of TSS), as it does grow back. This is due to the very low blood pressure starving the hair roots of oxygen. Shakeira said that our help had been "an answer to my prayers".