Meet Suzan – TSS Survivor and Director of Connectivity

Who am I?

I am a woman, a daughter, a sister, an aunt.  I’m a wife, a mother and one day I hope to be a grandmother.  I’m a neighbor, a friend.

You see me in the eyes of every girl, every woman you encounter – and every time you look in the mirror.

I am every woman who has ever used a tampon and every one who will.

I am a victim of TSS.

Here’s my story.

My first period started when I was 15. My first experience was not positive.  The pads were bulky, thick, ill fitting and difficult to change. There were many times that I leaked through all the way to the chair. How embarrassing!  I came to hate my period.

When I was 17 I received a box of Tampax tampons from an aunt and quickly discovered the freedom they brought me on my red days.  I preferred a super tampon with a pad as back up.  On heavy days I started using two or three tampons at a time with a pad.  On light days I chose tampons over pads simply because they were so much more convenient – put it in and forget about it.

Tampons accompanied me everywhere.  My periods were irregular so I started using tampons “just in case.”  Then, whenever discharge was more than I liked, I would…you guessed it…put a tampon in.

Tampons ruled my periods.  They were my life preservers in life’s FLOW.  I always had one in my purse or in my pocket.  And I recommended them to my friends, sharing with them if they started and had no protection.

Tampons got me through high school, my first job, college and into marriage. And, then along came a request from a company – would I be willing to try Rely tampons? The request came with tantalizing promises – last longer, absorb more, less worry about leaks.  And FREE.  Would I?  You bet I would. 21 years old, working full time, supporting hubby in college – I was ready for a break and Rely tampons promised to give me one from my period issues.

The instructions I received requested that I leave the tampon in until it leaked.  Curiosity got the best of me and I removed the tampons after only a few hours to see how well they were absorbing – except when at work and at night.

Rely Tampons did last longer than the tampons I had been using.  A lot longer. They did absorb more…a lot more.  And, I did have less worry.  At least at first.

By the end of the second day of my period I noticed when I removed the Rely tampon, it hurt.  The inside of my vagina felt raw.  Inserting the next was painful.

On the third day I woke vomiting, with fever and chills.  My throat felt raw and swollen. I was so weak I could not rise from bed without assistance.  Diarrhea soon followed.  My chest hurt and I was dizzy. A call to the doctor assured me all was well…most likely the flu or a stomach bug.  He prescribed a suppository to calm my stomach and end the vomiting.  All it did was increase my sleepiness.

My fever climbed and my back, muscles and joints ached.  I knew this was no stomach bug and doubted it was the flu.  There was no coughing, no sinus issues.  By late afternoon I was in bad shape.  I had developed a red rash on my arms and legs and my skin was flushed.  My husband helped me into the bathroom and I almost fainted.  As I sat on the toilet I remembered I’d not changed tampons since the night before and removed it.  I placed a pad instead of another tampon.

A second call to my doctor brought assurance that it was nothing more than a virus and that it would soon run its course.

The fever raged into the night, the pain caused me to moan in agony.  I was unable to keep anything down. My kidneys stopped putting out urine.

I don’t remember the next day at all. At some point the dry heaves stopped and my fever began to drop.

I missed over a week of work due to the illness and suffered from fatigue and joint pains for weeks afterward.  My vagina took a long time to fully heal and my next period I used pads and not Rely tampons.  And, I noticed something odd – my fingers and toes peeled.

When it was time for my next scheduled OB/GYN appointment (which was only a couple of months beyond my illness) I mentioned to the doctor that I had tried a new tampon.  He asked how I liked them and what they were.  I answered: “They were Rely tampons and I really don’t know how I liked them.  I got sick the third day and wasn’t able to finish my period with them and my vagina was just too sore to use them for my next period.”

His eyebrows shot up and his eyes got really big. He left the room and then returned with a nurse who wrote down what I have just recounted for you.  He did blood work and checked me over thoroughly.  A few days later his office called me and said the “flu” I had was Toxic Shock Syndrome.  My white count was still elevated. He felt it prudent to prescribe antibiotics.  And I was told to NEVER use tampons again.

Never is a long time when you have heavy periods and the only solution is to wear a pad – and the pad leaks quickly.

I did wait several periods before I resumed tampon use.  I didn’t go back to Rely, but I did return to the same pattern of using tampons – one, two, three – and keeping them in for as long as possible.

And, then I began to hear on the TV news about women dying from tampon related Toxic Shock.  I was shocked – I could have DIED!

But, I didn’t stop using tampons.  I just used them “smarter” – like it says on the package.

But, let me tell you – there is no “smart” way to use tampons unless they are organic – 100% cotton.

Now,  years later, I find myself wondering if the problems I’ve had for many years come from damage done to my organs by TSS.  And, if continued use of tampons following TSS further impacted my life in a negative way.

That’s my story.  I don’t want it to be yours!

You might say, “That was a long time ago and Rely tampons aren’t even on the market.”  Back then we thought Rely was the only concern, now we know better.  If you question whether this is a concern today, please check out our stories page and our informational brochure.

Please, don’t put yourself at risk.  Don’t buy into what most tampon companies are selling.

Take care of your body. Invest a few minutes to explore safer options like 100% organic cotton tampons, menstrual cups, the new pads, or go green with reusable pads.

Who am I?  I’m a survivor of tampon related Toxic Shock Syndrome and I’m committed to doing what I can to raise awareness and prevent TSS.

 

Suzan Hutchinson
Director of Connectivity
You ARE Loved
E-mail: Suzan@you-are-loved.org
Twitter:  @youarelovedtss

Comments

  1. Read every word – thank you. And thank you from the future (I have two daughters). (-:

  2. Thank you for sharing. Nobody should ever have to go through this.

  3. Beautifully written Suzan. You are lucky to be alive and I am grateful to have you on board.

  4. Wow. What an experience to go through. I admire your strength to educate others about TSS. I will never look at a tampon the same.

  5. Suzan! What a horrific ordeal you went through. Do you still have any side effects? And is there a resource for 100% cotton tampons? Thank you for sharing your story and creating a place where we can all connect to save lives. I am redesigning my website and plan to have links to really important issues that mothers and daughters should know. I will include your button!

    • Hi Susan! Thank you for visiting our website and for your comments! I do have what I believe to be residual issues related to TSS damage. 100% cotton tampons are available from many companies – some include Maxim Hygeine, Natracare, and Seventh Generation. Each has websites and can be found in many health food stores. Thank you for helping us spread the word about TSS! And, thank you for placing our button on your site.

  6. Thank you so much for sharing your story. Your candor is truly honourable and I know this will help countless women! Reading this only furthers my resolve to help others with their menstrual questions and concerns. Many blessings!

  7. So sorry that you or anyone had to go through TSS, but so grateful you are sharing your story, I honestly didn’t know that you could get this. Thank you for sharing, so I can share with others.

  8. Annabelle says:

    I’m 16 and I got toxic shock syndrome January 31, 2013 and was hospitalized till March 8th. I still have nerve damage in my legs and nerve and vascular damage in my feet. I go to boarding school. I haven’t been there since January 30th. Having this has changed my life…

    • Peyton Caples says:

      I am 15 and had toxic shock at the end of June 2013. I was wondering how you are feeling now and if your life has gotten back to normal. I know we can get it again and that scares me. I am sick now with a complication from all the antibiotics I was put on before they knew it was toxic shock so its constant doctor and hospital visits. If you had any information that you could share with me about life after toxic shock I would appreciate it.

      • Hi Peyton,
        I am so sorry you have experienced this – and that you continue to struggle toward health. Yes, it is possible to get TSS again. And, yes, that is scary. It’s important that you hang in there and give your body time to heal. If you would like, I will see if I can put you in touch with some young women who are a bit farther along in their recovery than you. Perhaps they can shed a little light on the journey for you. When I had TSS, little was known about it and it was assumed there would be no long lasting effects. TSS is a traumatic event and with all traumatic events there are often residual effects that linger, or that show up years later but can’t be traced directly back to the traumatic event of TSS. As far as what you can expect about life after TSS – that will depend on what damage, if any, was done to your body by the illness or by the medication used to treat it. Time is a great healer. If you would like to email me, you can find me at Suzan at you-are-loved.org

  9. I am 46 years old and had TSS in 1983, just before my 16th birthday. I was hospitalized for 7 days. Fortunately for me, they had another case of TSS just a week or two before, so I got a quick diagnosis.

    The following year I fought infection after infection. Almost 1 year after having TSS, I had a migraine for 3 days. That was the start of chronic headaches and migraines. I also still get infections quite easily. It seems like I have a sinus infection or strep throat once or twice every year and it usually takes 2 rounds of antibiotics to get rid of it. My memory is not what it used to be, I think from all of the migraine medicines I have been on for the last 25+ years. Suzan, have you suffered any long term effects from having TSS? I worked with a woman for a while who also had TSS in the 80’s. She too suffered from migraines.

  10. My daughter was in the icu at 10yrs with non-menstrual tss. Your story lets me know I am not alone, and sheds light on the very real dangers of tampons and the gravity of tss. I’m glad you lived, dear one. My daughter is almost 12 now and thriving. As menstruation approaches, we plan to stick with pads.

    God bless.

  11. Reality Chick says:

    Umm, do you mean you use multiple tampons AT THE SAME TIME?! How does that even work? Sounds like a dangerous misuse of the product to me.

    Rely tampons were notorious for causing TSS, but misusing any tampon can result in the same fate. To reduce the risk, change them frequently and don’t wear them between periods.

  12. I am a survivor of TSS and have just recently started researching other survivors. Something keeps telling me to share my story to help others, but I have really only told my doctors. In March of 2001 I was about 2 hrs from dying says the doctors. I will not go into detail at this time, but as my organs shut down….my mother saved my life and I am ever so grateful!!

Trackbacks

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