Ep 177 Toxic Shock Syndrome: A shock to the system

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Hey y'all, I'm Autumn.

I'm a longtime listener and I am really excited to share my story.

So when I was 18, I was hanging out with my boyfriend at the time at his house.

And that was on the last day of my period.

So I was wearing a size light tampon.

It was about 10 p.m.

and I was at that eight hour limit of my tampon but he did not have a trash can in his bathroom and I was also really scared of his mom and I did not want to venture to the kitchen trash and so I figured that I would just change it when I got home.

My midnight curfew came around.

I went home, I changed my tampon, then I went to sleep.

Woke up at 8 a.m.

to change my tampon again, but now I was feeling a little bit woozy and I had this like itchy red palm wrench.

For a bit of context on this next part, I also have a condition called hereditary angioedema, which can often look and feel like an allergic reaction, even though it's not.

So I figured I might have been having an HAE attack in my hands.

And so I used a dose of my HAE medication and then I went back to sleep.

You could equate it to maybe in a non-HAE patient, if you wake up, you feel some allergic discomfort, and then you take a Benadryl or something.

I woke up again at noon, as teenagers do on the weekend and I just felt so nauseous and I was lightheaded and feverish and just overall real cruddy.

I crawled down the stairs with a blanket and I laid on the couch to watch TV and I kind of tracked up my symptoms to just random illness and I figured that I'd be better tomorrow.

I've had this bad track record ever since I was little of having these wild and just incredibly harsh bouts of strep throat, often bad enough to go to the emergency room.

And they would happen so suddenly and make me so sick that I could just be on death's doorstep today and then just be fine tomorrow.

If I had antibiotics, of course.

And I've also struggled with these just seemingly endless infections of staph and strep bacteria on my skin, in my ears, and in my eyes for just about my whole life.

And me and my parents thought that this illness was just one of those situations, or at least the flu, because it was January.

And we really didn't think much of it until my hand rash was so bad that I could no longer hold my Gatorade.

And it really wouldn't matter anyway, because I could not keep my Gatorade down.

And it got to the point where I vomited and I threw up down my front and on the couch.

And I could not even like move to not throw up on myself.

And that was when we went to the ER.

It was about 4 p.m.

when we got to the ER and then by 7 p.m., which was just 18 hours after removing Tampon Zero, I was in the ICU with a blood pressure of 52 over 28, a scorching fever, and then either a raising heart rate or a slowing heart rate.

I really cannot remember.

And then the gradual shutdown of my bone marrow, kidneys, and lungs.

And it was obvious I was in septic shock, but no one could figure out why.

And then in my feverish haze, I remembered all of the warnings about toxic shock syndrome on tampon boxes and I told my doctors about what had happened with the tampon and the trash can.

Toxic shock syndrome really wasn't on anyone's radar and nobody working in that hospital had ever actually seen toxic shock syndrome in person before.

But that's what I ended up having.

Five days of hospitalization, my first ever pelvic examined catheters, awful, and enough lines and antibiotics to take down a horse, I was discharged.

Thanks to early intervention, quick thinking, and then a hospital staff intent on solving the mystery, I'm still alive today, and I'm lucky to have not lost any limbs or organs due to tissue death.

The worst that I personally have in recovery was about a year of being immunocompromised and having to slut off all of the skin from my palms and soles and mucus membranes due to cell depth, which is just about the grossest mental image you can muster, but I I guess it's the price of being alive.

And now that it's 10 years later, I'm really open about menstruation, what we can do to prevent TSS, and who might be more susceptible to contracting TSS.

And I love to talk about the need for free access to menstrual products and access disposal methods in all bathrooms, public and private.

And as a person who now works with teens,

I love putting my experience and advice to use in the hope that young people, even if they never have a run-in with TSS, will will not treat menstruation as a taboo topic.

Because I'm living proof on how treating things as taboo can just be a little bit deadly sometimes.

Absolutely terrifying.

Yeah.

Yeah.

And to be the one who has to tell your doctors, by the way, I think

this.

Could this be toxic shock?

Oh my gosh.

I mean, it just is like,

yeah.

And then, especially, cause I feel like there's that sense of, I don't want to tell someone their, like, their job or be like, you know, I don't want to be like, oh, yeah, I was on, um, I was on WebMD and this is what I think.

But like, it's, it's real, right?

You have to speak up and advocate.

And oh.

100%.

Yeah.

I'm a huge fan of people telling me what they found on WebMD.

It's very helpful.

I love that.

I love that.

Well, Autumn, thank you so much for sharing your story with us.

Thank you.

And we're so glad that you're okay.

Yes, yes.

Hi, I'm Erin Welsh.

And I'm Erin Almond Updike.

And this is this podcast will kill you.

Welcome to Toxic Shock.

Toxic Shock.

Yeah.

I'm, I, this is, I feel like one of those, I know we'll get so much more into the weeds, but I feel like this is one of those diseases where awareness around it is so much higher than the incidence of it.

But it also that means

there's like, it's a double-edged sword, right?

Like there's mean that there's more fear around it, but also we can recognize it when

we yeah, okay, that's fair.

We're more likely to recognize it if it happens.

Yeah.

I have, I have so many questions for you, Erin, about like

how we first saw this and like all of the, I saw little bits and pieces of what happened in the late 70s, early 80s.

And like

I

just have so many questions still and I'm I'm really excited.

Do you want me to go first?

Kind of, but

we could give it a go.

That would be fun.

On the fly.

Oh, on the fly.

Well, I guess before we get into literally any part of this,

it's quarantining

time what are we drinking this week we're drinking shock tactics

i could hear the pause like is it shock tactic

he literally just talked about it uh shock tactics shock tactics yeah um and it's it's we're doing honestly we're doing like a make your own quarantini if you want yeah but the standard recipe is a placebo rita version so good so good it's sour cherry syrup, like sour cherries.

They're the best.

Yeah.

Aaron, before this was like, where am I going to get sour cherries?

Gosh, they're not in season on my tree yet.

And I'm like, dude, they're frozen.

Go to the

frozen section.

I do love, I mean, yeah.

And I feel like my, I, my trees produce enough to make one.

cobbler type tree.

They'll keep getting better.

Before we moved, from when we moved like from Illinois back out to California, the tree that year had the best year ever.

And we had so many still in the freezer by the time we moved that I made a huge slab pie to take with us on the drive.

I really like that.

All that we ate.

I think we gave some to you.

And we

did it.

Yeah.

So sour cherries.

Sour cherries.

And then you can take the sour cherry syrup, add some club soda and a little bit of lime and it's like refreshing delight.

So delicious.

So delish.

And we'll post the full recipe for that placebarita.

And then you can make your own quarantining

on our website, thispodcastwillkillYou.com and on all of our social media channels.

If you're not following us, you should.

You should also follow exactly right on YouTube so you can see the full video of this and a lot of our other newer episodes.

Yeah, it's quite exciting stuff.

It is.

It is.

Also, you can check out our website if you haven't done that already.

It's called thispodcastwillkillU.com.

And on it, you can find such incredible things, including merch,

including all of the sources from all of our episodes, links to Bloodmobile, who does the music, our Goodreads list, a bookshop.org affiliate account, our Patreon page.

The list goes on.

The list goes on.

Check it out.

This is podcastwickille.com.

If you haven't already rated, reviewed, and subscribed, you can do that.

We'd love it.

Time for toxic shock

syndrome.

Syndrome.

Okay.

Okay.

I'm going to have you go first because I feel like it'll help me tell my story better.

It's like the way we do that.

It's the way we do it.

Yeah.

Right after a quick break.

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Toxic shock syndrome, or TSS, is a disease.

It's called a syndrome because it was like just a collection of signs and symptoms before we knew what caused it, but now we know exactly what causes it.

And it's caused by a toxin, or rather, a group of toxins

that are produced by two old-time friends of the podcast.

That is Staphylococcus aureus

or Streptococcus pyogenes, or group A streptococcus.

Okay.

So Aaron,

I was like, I have a question.

Already off the bat,

I thought about, as I was putting this together, I was like, I should probably check in with Erin and see if she's doing the history of like staph TSS or strep TSS.

But then I was like, I don't care.

I'm going to do both.

Great.

Okay, great.

I think I'm doing staph TSS.

That's what I assumed because that is more related to like menstrual TSS, which we'll talk in a lot of detail about.

But we're going to talk about both.

So there's staph-associated toxic shock and then there's strep associated toxic shock.

Okay, real quick, this is just a minor question.

It should be.

Give it to me.

It should, yeah.

Toxic shock, it's no longer called toxic shock syndrome because it's not a syndrome.

No, it totally is still called toxic shock syndrome.

Yeah.

Yeah.

Okay.

Yeah.

It's just, that's how it got its name initially.

Yeah.

But it's still called that.

Okay.

Yeah.

Well, I thought because you said that because it's, it's, we know what causes it, we know all of this, that it was initially called a syndrome and now no, it's just that, like, some people who are into semantics are like, it's not that accurate anymore, but like, it's still right, okay, okay, yeah, there are more important things to worry about than

aren't there?

Yeah, I think so.

Like, toxic shock, toxic shock, syndrome, disease, whatever.

So, toxic shock, it's caused by toxins released by staph or strep.

And these are both gram-positive, really cute little ball-shaped bacteria.

And

the most famous of the two is staph TSS.

And that's because that is the one that is more strongly associated with menstrual and tampons, with menstruation and tampons.

Yeah, you just mean like infamy, or do you mean like sheer number of cases?

No, I mean infamy, not sheer number of cases, as we'll get into later.

Okay.

But we're going to kind of talk about all of these because the mechanism is really quite similar in all of these instances, whether it's menstrual associated toxic shock or non-menstrual toxic shock, whether it's staph or strep that produce that toxin.

There are some differences in like the kinds of symptoms that we see, whether it's staph or strep, but I'm going to kind of just focus on the similarities.

Okay.

Okay.

Yeah.

So in any case, like I said, it really is a kind of clinical definition, how we find toxic shock.

And so it's a set of signs and symptoms that we're looking for.

There's not one diagnostic test that says you have toxic shock.

So let's go over what those symptoms kind of look like, how it manifests, because that's how we get to how we diagnose it, right?

So in toxic shock, people generally start with a fever.

And this might not be the first symptom, but it is a very, very common and important symptom.

And that fever tends to be quite high.

So we're looking at like 102 Fahrenheit or higher.

That's 38.9 Celsius or higher.

Okay.

The shock part of it means that there's also hypotension or low blood pressure

because that's part of shock.

Why?

Why does that happen?

Oh, we'll get there.

Okay, okay.

We'll get there.

We're just going through the symptoms.

We're going through the symptoms.

This is how we know signs and symptoms.

Yeah.

You also, especially in the case of staphylococcal.

toxic shock will see a rash and this tends to be like a diffuse kind of splotchy red rash sometimes it's described as like sunburn like

and then we'll also see evidence, either laboratory evidence, like when we're looking at your lab results, or symptom evidence of multi-organ involvement on the way towards organ failure.

And so this could be involvement of your kidneys, it could be your liver, it could be your musculoskeletal system, which we might see with like pain or with laboratory findings.

It can be neurologic manifestations.

It can be literally any organ system that's affected.

And usually to meet the criteria, you have to have at least two organ systems, like evidence of damage, and at least two organ systems.

Okay.

When it's streptococcal toxic shock,

almost always you will find some kind of initial infection, some kind of initial invasive infection, like a necrotizing fasciitis or a cellulitis,

or evidence of a bloodstream infection.

So, growing this streptococcal bacteria in your bloodstream.

Yeah.

With staph,

you might not.

Very often, you do not see an initial infection, like a cellulitis or something that kind of precipitates this.

And with staph, only about 5% of blood cultures are positive for staph aureus in toxic shock, compared to like 60 to 80 percent of blood cultures being positive in streptococcal toxic shock.

Okay, kind of

a couple.

Yes, a couple questions.

Okay, sorry.

Number one, timeline of

these signs and symptoms.

Like, does it start with a fever?

Like, at what point does it go from, you know, not so great, feeling bad, rash to shock, multi-organ involvement?

It's such a good question.

I don't, there's not a good, I don't have a good number for you.

Okay.

In part because it's going to differ, you know, if we're talking streptococcal versus staphylococcal, right?

Like if it's an infection, how quickly does it go downhill?

It really depends on the infection.

With streptococcal toxic shock, which very often might not have, you know, evidence of an infection necessarily,

because there's not necessarily evidence of infection, we don't have this like traditional incubation period where you're like, oh, might have this amount of time or how long does it take?

But what I will say is that once this has started to develop, so once you see this evidence of like fever and the blood pressure starting to go down, this process can happen very rapidly.

So you can see signs of organ damage and rapidly worsening clinical status within like 24 to 48 hours.

Okay.

Yeah.

That's very fast and terrifying.

Another question then.

So related to the blood cultures,

can you also screen for the toxins themselves?

Like, is that the way that people look for this?

So you could

if you

if you had the capability to do that, so if you had like the right PCR-based testing or whatever it is,

you might, you might A, not have that capacity or you might not think to, because if you can't, like if you haven't detected any bacteria, then how do you know what toxins to look for and that kind of a thing?

So, yeah, so I don't have a great answer for that.

But what is really important because we don't have a great test for it is that we do have to show that there's no other infection, right?

So part of the definition, especially for staphylococcal toxic shock, is that you have to show that there's no Rocky Mountain spotted fever.

There's no leptospirosis.

It's not actually measles.

It's not meningitis.

Like you have to rule out all the other rash things

before you can say that this is toxic shock.

But here's where it gets even more interesting, especially when we talk later about the epidemiology.

Part of the case definitions in the literature and per the CDC for staphylococcal toxic shock is that one to two weeks after this initial presentation, people develop a new kind of rash

where the palms and soles of your hands and feet just kind of the skin rubs off.

It's called a desquamating rash.

But that means that that definition can only be met retrospectively, right?

Right.

And so it's a complicating factor and probably leads to part of why we likely see an underreporting of toxic shock, because these are like kind of messy criteria right and a lot of other things could potentially fit into this and so we don't have great numbers that's a spoiler alert for for the future shocking yeah hey shocking wow I really didn't mean to do that

okay so

staph aureus is often a like a part of our biome like it's part of our microbiome it absolutely is strep pyogenes oh it can be definitely It can be.

Okay.

It can be.

Yeah.

In like your throat or your nose or something like that.

It can be.

Throat in your nose.

Interesting.

Staph is definitely like, it is our friend.

Staph lives on probably almost all of us.

Yeah.

So how does this actually happen?

How do you get from like, I don't know, staph just living on you to toxic shock?

Well, let me tell you.

Okay.

It can happen either from an infection, right?

Often we see toxic shock, like I said, with streptococcus, it's, you know, a necrotizing fasciitis or some kind of infection that leads to an invasive infection.

With staph, it's often seen in the post-operative setting.

So it could be like a wound or an incision after an operation because staph is just everywhere, if it happens to get in there and multiply.

Or if you happen to be colonized, let's say in the vagina, and then you have an overgrowth of this particular strain

of these bacteria that produced a particular kind of toxin.

And there's multiple different versions of this toxin.

The one that is again most infamous, and you'll talk about later, Erin.

Well, I don't know if you'll talk about the toxin, but the most infamous cause of toxic shock is caused by a toxin called TSST1.

Okay.

Toxic shock syndrome toxin.

Really clever.

Straightforward.

But all of these toxins that cause toxic shock are called superantigens.

And we talked about this idea of a superantigen actually in our scarlet fever episode, which you may remember, scarlet fever is caused by strep pyogenes.

Right, right.

A specific strain of strep pyogenes.

So superantigens are proteins.

These toxins are proteins that bacteria can make and excrete that when they get into our body trigger an overwhelming immune response.

This idea of like a cytokine storm that we've talked about here and there on the podcast.

And this overwhelming immune response itself, in combination with direct damage that these toxins are causing, just like ripping through our cells, is what ends up causing all of the symptoms that we see in association with toxic shock, the fevers, leaky blood vessels that lead to hypotension, dropping blood pressure, All of the damage that we see to our organs, whether that's damage directly to the tissues of the organs themselves or damage to the blood vessels that are feeding those organs, right?

And all of this is what results in the damage that we see and the shock part of toxic shock syndrome.

Okay.

And so it's not really about,

okay,

like the toxin itself is not acting in this way.

It's our immune system responding to this toxin.

And so it doesn't have to be like,

like, I'm just trying to figure out why this toxin exists.

And I'm assuming it's like, is it competition with other microbes?

Like, what's going on?

Do you know the answer?

I don't, but it's such an interesting question, Erin.

Yeah.

I didn't look into that, like, the evolutionary history or anything of these types of toxins.

Right.

But it's really, really, really weird.

I can't, do you want a little more detail?

Yeah, I do.

I would love a little more detail.

Thank you.

It's really, really interesting and weird how these toxins work.

And the question of like, why do they exist

is so, so interesting because here's what they basically do.

We're going to step back a minute to talk about like, what is a typical immune response, right?

We get exposed to various toxins or antigens like all the time, right?

And in our typical immune response, we have these cells that these cells that go around and find these antigens, right?

Antigen presenting cells.

They usually process them in some way.

And we've talked a lot about our immune response on this podcast before, and we've kind of glossed over this part because it's just what they do, right?

They kind of take them in and they like break them up and they're like, beep, bit-a-bop, let's find the part.

And then they present those antigens to our T cells,

who then decide what kind of response to engage in.

Do we do inflammatory stuff?

Do we do antibody stuff?

Whatever.

Okay.

So these antigen-presenting cells are like a mediator.

They are the ones who take all the antigens and they decide, like, which parts do we show to T cells?

Like, how are we going to start this process?

Right.

They're making these decisions.

Exactly.

They're organizing, sorting through things.

Yeah.

What super antigens are doing is bypassing this process.

Super antigens, they themselves go directly to the T cells, grab a hold of these T cells, and then grab a hold of these antigen presenting cells and bind them together, like bridge them.

And And they're like, let's get this party started.

And that causes this massive immune response.

And I was trying, Aaron, because you're so good at analogies.

Oh, no.

The number of times that we've been like, this analogy doesn't need to exist.

This analogy has been taken too far.

I know, but I love that.

Okay.

So I tried so hard to come up with analogies for this.

Here's the best one that I could come up with.

It's so bad.

Okay.

Super antigens are like the loudest guy at the party like the one that you didn't really mean to invite or like didn't actually want to come in yeah made it straight to the dj booth somehow no and then like opened all the doors and everyone's just rushing in the bouncers didn't catch him something like that's my analogy oh my god okay so it's like it's like those high school parties you know where it's like just a few of us and then unbeknownst to the the host the host our friends have invited all of their whole school older brothers and all their friends and yeah and they just run through the doors Okay.

They just run through the doors.

Wow.

So it's this overwhelming, way too expansive immune response.

Do you like it?

I'm stressed about it because those

scenes and movies always stress me out because I'm like, you're going to hurt the house.

Like, what about this?

What are you smelling on the carpet?

Like every teen movie you've ever seen.

I was not cool in high school, if you can imagine.

I think I went to my first high school party when I was definitely in college.

So

I was being like, are you using coasters?

Do you need a coaster?

I've got a little basket of them.

It wasn't even my house, but I was

a wood.

Yeah.

Anyway, so I can see why super antigens would be a real pain.

A real pain, right?

And to give you more of like a numeric sense of this, to see how much these super antigens are overdoing it,

regular antigens, like just your typical ones, activate about 0.01% of our T cells on average.

Okay.

0.01%.

A very small proportion of R T cells are being activated by any given antigen that we're exposed to.

Super antigens are activating 5 to 30% of R T cells.

Bye now.

Okay.

So

scarlet fever, another super antigen.

Another super antigen.

What makes a super antigen a super antigen?

Like, obviously, we know the characteristics of it, but like

what is there a range is there a spectrum of of antigenicity from not very i mean obviously but to super antigen why why i guess is just the question that's the question aaron it's a great question

well formulated

thank you so much

yeah

i don't know though

fascinating okay isn't it yeah uh so yeah so i mean that that is toxic shock.

And that is, you know, how it happens

and

what is going on in our bodies in terms of the pathophysiology.

Okay.

So, question about the two different strep and staph

toxic shock.

Is there a difference in case fatality rate?

Is there a difference in treatment?

Yes.

And management.

And is there a difference in like susceptibility again in the future to it?

Such fun questions, Erin.

Case fatality, definitely.

Okay.

Let me scroll in my notes.

Case fatality rates for streptococcal toxic shock

are very depressing, anywhere from like 30 to 60 percent.

Okay.

So very, very, very deadly.

Yeah.

And remember that streptococcal toxic shock is very almost always associated with some kind of invasive infection.

Right.

So the treatment requires that you identify identify what that infection is.

You try and get like source control if you can.

So that means if there's like a necrotizing fasciitis, you have to debride all of that dead tissue that is completely overrun with bacteria.

And then you need to also treat the toxic shock, which I'll talk about in just a second.

With staphylococcal toxic shock.

The case fatality rates really can vary.

And most of what I saw estimated that the majority of staphylococcal toxic shock cases are actually not menstrual.

And we'll talk a little bit more about what that means, but they're actually more likely to be something like a wound-related or a post-operative infection.

Something like 60%

of staphylococcal toxic shock is from that rather than from menstrual sources.

The fatality rates, I've seen a real range anywhere between like 8 and 20%,

but most places also say that menstrual toxic shock is very rare to cause fatalities.

And I don't know if that's just based on like current data or if that has been true historically as well.

But that is what all of the literature that I read suggested.

Interesting.

Yes.

Okay.

It's very interesting.

And is that because of, you know, like demographics?

Because people who are getting maybe wound infections or operative infections are maybe like older or have more comorbidities or something.

They're not compromised in some way.

Or is it because that they also have this infection that you're dealing with?

Right.

Where most of the time with menstrual-associated toxic shock, there's no infection.

So, like 10 to 40% of menstruating people just have staph aureus in their vagina at any given time.

Right.

And the amount and quantity of different bacteria really changes during your menstrual cycle because of changes in the pH and things like that with menstrual blood and all that kind of stuff.

And I said that it's only certain strains of these bacteria that produce this toxin.

It's estimated that like 18 to 25% of strains of Staph aureus across the board have the gene that encodes for this toxin.

But even then, not all of those bacteria, even if they have that gene, are going to make the toxin because the environment also has to be right to induce them to actually make that toxin.

Right.

Interesting.

Okay, so they have, it's not like these are just going around producing this toxin all of the time.

No, it's not.

It's not dependent upon, and do we know what those environmental conditions are?

We do, Erin.

So glad you asked.

So one of the things that we know is that it has to be an environment that is aerobic.

They need oxygen.

Staph aureas can grow with or without oxygen, but in order to produce this toxin, in strains that can produce this toxin, they need the presence of oxygen.

Okay.

They also need like a warm, but not too warm of temperature.

They need like a certain pH range, not too high, not too low, things like that.

And so conditions have to be right for this bacteria to grow to a degree and then to have the toxin, like the gene to make this toxin, and then to actually be induced to produce this toxin.

before somebody can even be exposed to potentially get toxic shock.

And then you asked Aaron,

what about recurrent infections?

This is such a good question.

Because we're talking about an antigen and we usually make antibodies against antigens, right?

Uh-huh.

Something like 80%

of people

have antibodies against these types of super antigens, especially when we're looking at the common one, TSST1.

Most people, like if you just surveyed a random group of people have antibodies against this, meaning that we're probably exposed to it at low levels and we're making antibodies against it.

Okay.

When we're thinking about who is it that ends up getting toxic shock, it is not a simple question.

No.

It is not like, oh, if you have a tampon in for too long.

No.

It is not anything near straightforward.

Because there has to be the correct environment.

One to 5% of people are thought to be colonized in the vagina with strains that can potentially produce this toxin.

Okay.

So one to 5% of people, if we're talking about menstrual, just focus on that for a second.

Then you have to have an environment that is conducive.

So you need to have enough oxygen.

Now, menstrual blood, blood contains oxygen.

So that can increase the oxygenation level of the environment and potentially help to shift those bacteria into producing the toxin.

Yep.

Tampons, as you'll talk about, Erin, are strongly associated with especially the emergence of toxic shock as a syndrome.

And the thought on part of the reason why is that because these are absorbent materials, they contain oxygen.

I mean, I'm going to talk a little bit about it, but like, it's just like, this is the part where I still have found so much disagreement, not even disagreement, but lack of clarity on.

Yes.

And these are the characteristics.

This is how step, you you know, step one, step two, step three.

Is it that the, is it the tampons?

Is it the blood?

Is it like, is it microabrasions?

Is it leaving tampons in too long?

Is it taking them out?

It's like all of these different questions.

And Erin, it's all of these different things.

And that's the point.

Yeah.

It's not one thing.

It is not one thing.

It is an individual risk factor.

Are you colonized with this?

It's an individual risk factor.

Do you already have enough neutralizing antibodies or not?

Do you have some kind of immunocompromise where you're not producing as many antibodies for some reason or another?

Have you been exposed to this at lower levels and developed antibodies or not?

What is the oxygenation level in your vagina and in your menstrual blood?

What kinds of, like, how heavy is your flow?

Are there microabrasions that make it easier for either bacteria or the toxin to get into, like pass through that mucous membrane, get into your bloodstream?

Right.

How much oxygen is being contained in the tampon versus in the menstrual cup?

Because by the way, there have have been at least two cases reported from menstrual cup use.

So I feel like, especially when we're thinking about menstrual toxic shock, what I took away from all of this, and we'll talk more about it in the like looking at the numbers of all of this and how rare this disease is, is that

we need a lot more research when it comes to reproductive health and like the best menstrual products and all of this stuff, but we cannot weaponize tampons, saying that like tampons are the problem here.

uh

well yeah it's it's complicated it's complicated yeah it's complicated but it is not like the tampons are not introducing any bacteria that we know of these are bacteria that are already present in the environment

uh and we have a lot of data that like we do not have nearly as much data as i feel like we should but i think it is in part because of how rare this disease is

and how many complicated factors there are that go into this, right?

Like it is, it is just not as straightforward.

And so, I feel like the takeaway that I got is not like, this is evil, this is good, but like, no, we need more information on this.

And we also can't, because one of the papers I read suggested as a way to prevent it to not use feminine hygiene products, Erin.

And I was like, sorry,

what?

It, I mean, that is

not a very well-thought-out solution.

No, to put it mildly.

To put it mildly.

Okay.

But yes.

I feel like I got a little bit off track and probably out of order there.

No, no.

Okay.

So, but to maybe get us back on track, treatment.

Treatment.

What do we do?

Yeah.

So I mentioned source control.

That's going to be important.

So that means taking care of any infection that we know of.

If it is a menstrual toxic shock and there is a menstrual device in place, like a cup or a tampon or whatever, removing that.

And then the most important thing is using antibiotics that are going to have ability to prevent more toxin production.

And so that usually means clindomycin because that helps block protein synthesis.

And so it helps block production of the toxin.

But then it's also a lot of like supportive care, right?

It's fluid resuscitation, it's blood pressure support, it's broad spectrum antibiotics because a lot of times you can't, you don't know what it is yet.

All of this takes a long time to figure out.

You got to act fast.

Yeah.

Interestingly, there's some evidence for the use of IVIG,

which is like IV combined immunoglobulin from like a bunch of different sources.

It's basically pooled antibodies and giving people really high doses of a ton of random antibodies.

The thought is that that will help like bind to this toxin and inactivate it.

There's not super strong data for it, but it's in part because of the difficulties of doing these kinds of clinical trials on very small sample sizes.

But there's some data that it might be helpful, especially for streptococcal more than staphylococcal, just because that's the data that we have.

Okay.

Yeah.

And that's mostly it, Erin.

Okay.

Yeah.

And you asked if you can get it again.

You can, which makes it even that much more interesting because you can, you can get it again, even under different conditions.

People who have had menstrual toxic shock, especially in the context of tampon use, there has been reports that people have had recurrences without tampon use,

which again points to the fact that it's not just the tampons.

It's a much more complicated thing than that.

Right.

But yes.

Yeah.

I think I have more questions, but I'm going to, they're just going to have to come to me.

Like, I just, there's so much that.

I know.

Yeah.

Well, I have questions too, Erin, because like, obviously, a lot of the papers that I read couldn't not say like, well, we first found out about this.

I mean, I'm

literally just going to be talking about tampons.

So I cannot wait to talk about tampons.

I can't wait to tell you.

Let's take a quick break.

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Erin, do you remember when you first learned about toxic shock syndrome?

Ooh, good question.

No.

No.

I just feel like in my memory, and this is not, I'm sure not correct, but I just feel like I have always known

about

you were born with the knowledge.

No, no, no.

Like it was like tampons, toxic shock.

Like that was a connection that existed in my memory from the first time that I can remember using a tampon.

And I don't know if I actually learned it that first time or if it was like later knowledge.

I mean, that's similar to me.

Like, I don't know if it was in like health class or something like that, but I'm sure it wasn't in health class for me.

Probably.

Yeah.

I mean, just speaking personally.

Yeah.

I mean, that's, I, I, again, yeah, I, I don't know, but I do, I do have this, this memory of being in my house in Northern Kentucky, like getting my first period and reading that little instruction pamphlet that came in the box of tampons.

Yeah.

And like in one little corner was this dire warning about this deadly disease called toxic shock syndrome that you could get from using tampons.

Yeah.

And I feel like that made such an indelible mark on me for years after I was like worried, but also a little confused.

Like, what was it using it?

Again, like all these questions.

Am I going to get it because I used a tampon for too long or because I took it out too soon?

Like, what is going on to give me toxic shock?

Yes.

Should I be using tampons at all?

Is that going to help me?

Like, right.

Clearly, I think that the takeaway that I had was if I got toxic shock, it was my fault because I didn't know the answers and I wasn't sure where to get them or who to ask.

Oh my gosh, Erin, that's so heartbreaking to imagine little like baby Aaron being like, well, if I die, it's on me.

I mean, it was just like, you're, if you use, because it's like, use the right amount, use the right absorbency.

How the heck are you supposed to know, especially when you're actually 16 years old?

When you're 16 years old, if you have irregular periods, like there are so many different things where it's like, but I felt like, okay, well, this is just like part of what it means to be a woman, right?

Like I have my period now.

I have to deal with toxic shock.

Oh my God.

That was,

I mean, it wasn't like something.

This is my lot in life.

This is not great.

But I just sort of felt like, okay, like this is, this is the knowledge.

This is part of it.

Okay.

And I feel like.

After reading for this episode, it seems to me that the history of toxic shock syndrome reveals how the silence and the shame surrounding menstruation and menstrual products, it presented a challenge both in identifying the source of this deadly infection, as well as raising awareness at a time when words like tampon, menstruation, and period were still taboo words.

I cannot.

And I think it also demonstrates how the blame has been shifted away from tampon manufacturers who did not properly evaluate this very demonstrating people.

Yeah.

I can't wait.

I can't wait to hear about this because I learned so much inadvertently about how little testing or standardization existed, but prior to this.

Oh, yeah.

Oh, my God.

I mean, did any?

Yeah.

Yeah.

And so I really only knew the bare bones of this history before researching for this episode.

And there is so much more to it.

Like, like you said,

I'm excited.

Let's start at the beginning.

Okay, okay.

Okay.

Okay.

September 25th, 1977.

Okay.

Denver, Colorado.

Oh, I know.

A girl, 15 years old, was rushed to the children's hospital, quote, delirious and in shock after a two-day history of worsening pharyngitis and vaginitis associated with vomiting and watery diarrhea.

On admission, her temperature was 40.9 degrees Celsius, which is 105.6 degrees Fahrenheit.

Oh my gosh.

And her blood pressure was 66 over zero.

And what?

Yeah, that's what it said.

I read it like eight times.

Oh my God.

Yeah.

She was described as having red, bloodshot eyes, a hugely swollen face and limbs, a red scaly rash covering her entire body, tender abdomen,

purulent.

I can't, I cannot say that word, Erin.

It's a tough word.

Okay.

We know what I'm saying.

Vaginal discharge and severe prolonged shock.

She was described as quote unquote confused and aggressive.

Like, no wonder, right?

I'm sorry that you're going to put the word aggressive in there.

I know.

I know.

Confused and aggressive, right?

But like just putting yourself in her shoes, imagine how terrifying.

Can you not just describe her as dying?

Right.

She was acting a little aggressive.

Oh, just a little aggressive.

Her doctors pumped her full of IV fluids, antibiotics, steroids, heparin, digitalis, and put her on a ventilator.

And fortunately, after eight days of intensive care, she made a complete recovery, recovery, except for some necrosis in a few of her toes, which ultimately had to be amputated.

Okay.

And the fact that her entire skin had started to slough off, but she was stable.

And after 17 days in the hospital, she was discharged.

My goodness, Anne.

Yep.

Her doctors were stumped.

They had run tests for Rocky Mountain spotted fever, leptosporosis, scarlet fever, and other viral rash-causing diseases, but nothing had lit up.

There was something familiar about this case, though, because over the previous couple of years, there had been a few more just like it in children aged eight to 17, seven total from 1975 to 1977, including one death.

In Colorado or just like

that.

Yeah, that had written, like, I think, I don't know if it was like the hospital system or that hospital or like within the state.

Yeah.

Yeah.

Okay.

The doctors that had been working on these cases couldn't find anything that linked them.

There was no food, no drug overdose, no exposure to an animal or a chemical.

But the clinical picture was similar and resembled some of the syndromes caused by Staph aureus infections, like scalded skin syndrome and some staph food poisoning cases.

Swab cultures confirmed that a toxin-producing staph aureus may be the culprit.

And so in combination with shock being a unifying feature of the syndrome, the Denver doctors named the new condition toxic shock syndrome syndrome in a 1978 paper.

Okay.

Yeah.

Was it actually new?

Was this brand new?

I mean, probably not.

Yeah.

There were a few other cases that people found in the medical literature from as far back as the early 1900s.

And there was some other like ancient plague that someone proposed.

It doesn't really.

seem to track in my eyes.

But one researcher, one researcher suggested that it might be like a new toxin-producing strain.

Sort of like how we talked about with scarlet fever.

Again, strep pyogenes went from being like super, super deadly to then not like just massive shifts in shifts in what strains are there.

Yeah, yeah.

And so, regardless of whether this was new or not, the 1978 paper, which is by Todd et al., if you want to read it, was a critical milestone for toxic shock syndrome.

Besides giving it a name, they also set out this clear clinical picture and described a general patient population.

And so, other physicians who happened to read this article began to connect connect the dots in their own patients, starting with physicians in Wisconsin and then Minnesota, and then gaining enough momentum that the CDC got involved with what was rapidly becoming a public health crisis.

The first morbidity and mortality weekly report on that featured toxic shock syndrome was published in May 1980.

Okay.

With these additional reported cases from these other states, researchers zeroed in on a toxin-producing strain of Staph aureus, right?

Like that seemed to be behind it all, behind these cases.

Right.

Right.

But the route of transmission was still unclear.

The CDC initiated a study to find out how people were getting sick with this condition.

And they identified about 50 women who had toxic shock syndrome and 50 women who did not, matched by sex, geographic area, age, and were often friends of the cases.

So they were like, okay, what is different about these two individuals?

Let's match them, these pairs.

I love it.

Case control.

There we go.

And then using phone surveys, importantly conducted by a woman, EIS officer Catherine Shands, because I think that was a really crucial part of getting people to actually, these women to feel like they could open up

their experience.

Yeah.

They asked a million carefully worded questions about their lives, including menstruation and use of menstrual products.

And a tentative pattern began to emerge.

The people developing toxic shock syndrome were young, otherwise healthy women who were menstruating at the time that symptoms developed and who used tampons.

And I say tentative to describe the pattern because it wasn't really a smoking gun.

There were plenty of tampon users who did not have toxic shock, but the devil, of course, would be in the details.

Because tampons are not all created equal.

Like go to your local grocery store

and check out the menstrual menstrual products aisle.

You haven't looked lately.

She got shelves upon.

I mean, I haven't looked lately.

I haven't had a period in years now because the miracle of birth control pill for me.

But it's shelves upon shelves of different brands, different absorbencies, different materials.

I mean, the branding, the variety really is something else.

The scents, Aaron.

I cannot.

I mean, I cannot.

Yeah.

And the landscape in the 19, the late 1970s when toxic shock began popping up was roughly similar to this.

So why then?

Like what was happening in the late 1970s that led to suddenly the syndrome being recognized

on a national scale?

Tell me, Aaron.

Okay, here's where we have to get into some tampon nuance.

Yes.

In the decades since the first commercially available tampon in 1936, which is Tampax, tampon technology had undergone some pretty big changes.

Very gradually at first, since the demand for tampons remained pretty low until the 1960s, interesting.

I mean, well, you couldn't advertise easily.

So word of mouth was the main way that people learned about them.

And then there was a great deal of hand-wringing over how tampons were a threat to young women's purity and like it's going to ruin them, right?

But eventually, though, the benefits that tampons provided, like being able to swim or dance or go on, you know, be in work-long shifts, all of these things won out over these anxieties.

And by the 1960s, tampons were seen as a symbol of bodily freedom, of women's liberation.

And as the consumer base for tampons grew, so did the companies making them.

And slightly different versions of tampons appeared on the shelves, like each of them trying to edge out the competition, right?

Like they each have, oh, this one's slightly different.

This one has a better name.

This one has a better catchphrase.

This one is more absorbent.

This one is whatever.

All these different things, the applicator.

The first tampons made were 100% cotton, but these newer tampons began to incorporate other fibers to increase absorbency, including synthetic fibers and materials developed in the mid-20th century.

Things like polyester, viscose rayon, which is derived from wood cellulose and processed with other chemicals, polyacrylate, which you can also find as an absorbent in disposable baby diapers.

Okay, that makes sense.

Carboxymethyl cellulose, which comes from plant cellulose and shifts from powder to gel when introduced to liquids.

And even today,

it's next to impossible to find tampons made of 100% cotton alone.

Like very, very, very few do use those or use just cotton.

Procter and Gamble's Rely tampon, which took, I know you, I know you know this.

To hear all about Rely.

This is the tampon that took center stage in the toxic shock syndrome crisis of the 1980s.

Rely was composed of, quote, a polyester sheath, compressed polyurethane foam cubes, and carboxymethyl cellulose, end quote.

And I just want to like make a point here to say that just because chemical names of things are long and like sound complicated does not mean that they are inherently bad.

Right.

But

the issue, and then I'll get into this a little bit more, is just like the testing of this, right?

Like, because I feel very much like, oh well those don't sound like natural words and it's like that's it doesn't right yeah and it's also like just because something is so-called natural or is cotton rather than rayon does also not mean that it is safer for you right so something being a synthetic fiber does not make it inherently less or inherently more dangerous across the board i mean across the board maybe research will show that it it does right maybe research will show that it does not but yeah yeah we just the sweeping generalizations i think and just like the idea that like oh, that has a lot of big words.

Yeah.

Yes.

Yeah.

That being said,

Rely was

a big, yeah, a big part of this.

So Rely was considered and advertised as a super absorbent tampon with lightweight materials able to hold 50 to 1500 times their weight in water.

Wow.

Yeah.

Sounds like it'll dry you out real good.

Well, yeah, it did.

I know.

Yeah.

That's a problem.

That's a problem.

Your vagina is supposed to be moist.

Anyways, keep going.

Anyways, so with all of these new tampons coming onto the market, coming onto the grocery store shelves in the late 1970s, what was that approval process like?

Tell me.

To be honest, close to non-existent.

Yes, I knew it.

I mean, yeah.

Until 1976, tampons and sanitary pads were classified as cosmetics.

Wow.

Which, and so they were technically under the jurisdiction of the FDA, but there really wasn't any formalized review process for devices like those that were worn or implanted in the body or used to diagnose diseases.

Wow.

No official approval for these was necessary.

Yeah.

I mean, and this, this is a case, I think, of like technology moving faster than our ability to like understand the implications of it.

Yeah.

Yeah.

And over the 1970s, it became apparent that like we need to do a better job.

This was a mistake to not have any sort of official approval.

Serious issues with pacemakers, IUDs like the Dalkon Shield, lens implants, and other medical devices had left people with severe injuries and pursuing lawsuits.

So in 1976, the medical device amendments was added to the

Federal Food, Drug, and Cosmetic Act.

And it's worth getting a bit into the nitty-gritty here because of the bearing that this would have on the emerging issue of toxic shock syndrome.

So under this amendment, devices were put into one of three categories based on their perceived risk.

Class one was almost no risk, like bedpans, nitrile examination gloves, that sort of thing.

Class two devices carried a bit more potential for risk, so like tampons and hearing aids, and required more testing, labeling, and monitoring.

And then there was class three.

This was the riskiest bunch, like artificial hearts or other experimental devices.

But when this amendment was introduced, what do you do about the existing devices, like tampons, right?

Most of these pre-amendment devices were just grandfathered into the system and no disruption to sales or production happened.

Any new tampons, I'm talking about tampons specifically here, could be ushered

through this approval process pretty quickly if the company could demonstrate that they were quote unquote substantially equivalent to pre-amendment devices.

That's a problem.

It is a problem.

And one of these substantially equivalent tampons was Procter ⁇ Gamble's Rely tampon.

Okay.

Rely.

It even absorbs the worry.

This was the tagline on the sample box containing four Rely tampons that was shipped out in mass across the U.S.

to millions of homes from the mid-1970s to 1980.

It's just as like you get free tampons in the middle.

Try it out.

Maybe you like this.

Super absorbent.

The materials that were used in Rely Tampons had been used in other tampons on the market, just not the precise configuration.

Right.

But how could anyone know that?

They cannot.

Manufacturers are not required to disclose the exact composition of tampons, like materials, fragrances, et cetera, because it qualifies as a trade secret.

Right, yeah, yeah, the trade secret trade.

Trade secrets.

I mean, I have a lot of thoughts on that and some recent news about certain quote-unquote unextinct animals.

Anyway.

Oh my gosh.

We should do an episode.

Dire wolves.

Dire wolves.

I mean, I can't say it without using quotes because

anyway, overall, back to toxic shock.

As far as I could tell, until the late 1970s, though, tampons had not been associated with any significant health issues or outbreaks since they had hit the shelves decades before.

Like there, it really doesn't seem to be like something.

It was like more maybe

very sporadic types of individual issues, not outbreaks.

So the spate of toxic shock syndrome cases

with the beginning in the late 1970s would reconfigure the perception of these devices as inert and completely benign.

What had changed?

That was the question that the CDC sought to answer.

The June 27th, 1980 MMWR described the link between toxic shock and tampons.

Of the 105 cases since September 1978, 96% occurred in women aged 12 to 52 during their menstrual periods.

Okay.

96%.

And the case fatality rate was 15%.

Wow.

See, that's so high.

So high.

That's when I was asking and you were like, well, that's pretty low.

Like 15% 15% is very high.

Yeah.

And that's why I said I don't know all the numbers I saw, I think, were from current data.

Right, right, right.

So

grains of salt.

Exactly.

Yeah.

In one case control study where they matched someone who had toxic shock with another person who didn't, like similar age, socioeconomic status, geographic location, et cetera, they found that 100% of the cases used tampons compared to 86% of the controls.

Vaginal cultures of those with toxic shock before starting antibiotics showed 94% positivity rate for Staph aureus.

Okay.

And no similar cultures had been done for controls because

retrospective.

Yeah.

Right.

But in general, the prevalence of the bacterium in the vagina and cervix ranges from 2% to 15% is what I saw in this book.

Yeah.

And well, because it depends too on it can be up to 40% when it's just Staph aureus, but not all of them are going to produce the toxins.

Right.

Very, very varies.

Follow-up studies sought to get a handle on which tampons and why.

And what they found is that across the board, tampons with higher absorbencies were associated with toxic shock syndrome.

Several brands were implicated, but the clear winner, if you could call it that, I guess, was Rely with 71% of those who had contracted toxic shock using the brand.

Wow.

I didn't realize it was that high.

71.

Well,

and it's hard to say how much of it was Rely's popularity because it had become very popular over a very short time, especially with all those mail-out, you know, sample boxes.

Yeah, like what percentage of those 86% of people who didn't get toxic shock also were using Rely Tampons.

26% of those in the control group used the brand.

But it wasn't just down to Rely's popularity.

Right.

The risk seemed to be higher for that specific tampon compared to other tampon brands.

And researchers suspected that it had something to do with the composition of the tampon itself.

So like I mentioned, all of the individual components of the relied tampon had been used in other tampons previously, but not in combination.

Right.

And there seemed to be something specific about the blend of polyester and carboxymethylcellulose that encouraged bacterial growth.

As you can imagine, this was not welcome news to Procter ⁇ Gamble, who were busy conducting their own studies that naturally were intended to cast doubt on what the CDC had found.

They even tried to strong-arm the CDC into giving them the names and contact information of the women who had been included in the first study.

Excuse me?

Yeah, because they were like, the CDC is inflating cases of toxic shock.

Like, we don't think that these women actually had toxic shock.

So we're going to have to go to their doctors and look in their medical records.

Absolutely not.

Yeah, the CDC was like, I'm sorry.

No.

What?

No.

No.

So instead, the Procter ⁇ Gamble tracked down women who had called the company and complained that the tampons had made them sick, which like there were a lot of complaints about Rely specifically.

Their intention with tracking these women down was to try to undermine the CDC study,

saying that the cases of toxic shock they included weren't really toxic shock.

And so Rely has, you know, nothing going on.

This didn't

work.

And in response, then they were like, well, we'll try something else.

They were like, let's do this, this contradictory PR approach where they touted Rely as, you know, these outstanding tampons, super unique, and they give you what no other tampon does.

Also at the same time, by being like, but like, Rely is just another tampon.

It's not any different than these other tampons or not any more dangerous than the other tampons out there.

So it's like they're saying, Rely.

We're the best.

We're so different.

We're just like everyone else.

We're just like everyone else.

Exactly.

Exactly.

But at a certain point, they realized that there was nothing that could be done.

And the CDC data was pretty damning.

And so in September 1980, they realized the inevitable and they tried to get ahead of like the bad PR storm.

And so they voluntarily pulled Rely from the shelves and issued a recall.

I don't think I realized that it was a voluntary.

So

they didn't actually get banned?

No, it was a voluntary recall.

And this included like print and television campaigns.

And there's, I think that like

there's more to that story in terms of like, I think that they saw the writing on the wall.

Well, totally, but I just like thought that they also actually got banned.

No.

Okay, cool.

Well, and then, yeah, because this,

there were implications to this,

right?

Because on the one hand, this is great.

This is what needed to happen.

Rely, there was a clear association with rely specifically

and toxic shock syndrome.

So this meant that this, you know, potentially dangerous product was no longer going to be available, available for purchase.

Right.

But on the other hand, this focus on rely tampons only provided a false sense of security once they were removed from the shelves.

Right.

And it obscured the nuance in the relationship between tampons and toxic shock syndrome.

Yes.

It's hard to overstate the media frenzy surrounding toxic shock syndrome.

In 1980, it was the third leading news story in the nation behind only the Iranian hostage situation and the presidential election.

Wow.

Toxic shock.

Toxic shock.

It was everywhere.

Yeah.

And this was overall, like we talked about, a good thing in terms of raising awareness.

Yeah.

The CDC estimated that tampon use dropped from 70% to 55% by the end of 1980 because of toxic shock syndrome.

Wow.

But because the research was so new, misinformation was everywhere

with journalists and news anchors reporting all kinds of unsubstantiated hypotheses about the nature of this infection.

Things like rely tampons cause toxic shock syndrome, period.

That's it.

Toxic shock syndrome is a variant of scarlet fever.

Tampons cause abrasions or ulcerations that serve as a route of entry for the bacterium.

Tampons act as a plug that allows for bacterial growth.

Leaving tampons in too long causes toxic shock.

Removing tampons too soon causes toxic shock.

I mean, like, just so many, there was no clear, coherent message.

Right.

And part of it is like we discussed because it is a very nuanced thing.

But I think another part is because there was such fear and anxiety about, like, we need to solve this.

Yeah.

And so we need to report this as like, we need to have a clear message to get out to the public.

Rely tampons cause toxic shock.

So that's the, that's the message they went for.

Or tampons cause toxic shock.

Yeah.

Or taking them out too soon, you know, like all of these different things.

Yeah.

And then you have some older male news acres that refuse to say the words tampon or menstrual cycle on the air.

So what did they say?

They just didn't report on it or they made somebody else do it.

Right.

Yeah.

But the rest of them ran with the story.

The mixed messaging and extensive airtime given to guesswork both contributed to the fears that surrounding toxic shock syndrome.

I'm surprised I haven't stumbled more over toxic shock syndrome.

It's a hard thing to say over and over again.

TSS.

TSS.

I might, maybe I'll switch to that.

Yeah.

But

by also, so you're contributing to the fears and then also shifting blame to the consumer.

Right.

That's the thing.

That's the thing, I think, Aaron.

And I think that that still happens today, even in the talk of like, well, did are you using the right absorbance?

Are you using the right absorption?

Too long?

Yes.

Blah, blah, blah.

And I'm like,

did you not buy the organic ones?

Right.

I'm sorry.

What?

Yeah.

Yeah.

Yeah.

Because

that's the thing is that the removal of rely tampons didn't mean the removal of the threat of toxic shock syndrome.

Yeah.

And in fact, one report found that between January and September of 1980, which is when Rely was still on the market, 50 cases of TSS were reported in Minnesota, 45% associated with Rely.

So it's 50 cases between those months.

And in a similar period of time, after Rely had been pulled, there were 59 cases,

mostly associated with other super absorbent tampon brands.

But now that there was no single brand to blame, no scapegoat, no scapegoat, the responsibility to prevent the condition fell entirely to the consumer with the logic following that if someone developed TSS, it was because they weren't using tampons properly.

You didn't read the instructions.

You didn't read the instructions.

And on top of finally standardizing what junior regular super and super plus actually meant, which happened in 1989.

Aaron, I want to do a whole episode on the tampon task force.

Oh my, yes, the Tampon Task Force.

Yes.

And the syngina.

I learned so much.

I know.

I know.

There is, I just, it seems like there was, um, it took so long to get anything.

It took so long.

Yeah.

It took so long.

Like it's unfathomable how it took so long.

And how then, even after all that work, people are still like, yeah, I'm just going to use saline still.

Yes.

I know.

I know.

I know.

All of that.

Yeah.

There's, there's so much there.

I'll recommend a book at the end of this.

But yeah.

But

so yeah, they had standardized absorbencies, and then the FDA had also issued guidelines for warnings to be included on the tampon box or in an insert inside the box.

Yeah.

But the initial warnings were very vague.

Attention.

Tampons are associated with toxic shock syndrome.

TSS is a rare but serious disease that may cause death.

Read and save the enclosed information.

Wow.

No detail on symptoms.

No.

So, like, you're just like, there's this deadly disease.

Right.

We don't know what it looks like.

Is it from the tampon or is it?

What do I look for?

How do you know if I have it?

Yeah, no information on how tampons were associated, even though at that point it had been uncovered through research that it was likely that superabsorbent tampons created, like you said, this more aerobic environment for Staph aureus to multiply and frequent changing created even more aerobic conditions.

Oh, interesting.

That's what some of the research said.

But, like you said, there's it's nuanced.

There's more,

more factors at play.

Yeah.

But even that messaging wasn't simple enough to be reported by major media outlets.

And so the issue continued to be one of individual responsibility rather than consumer protection.

Women were told to monitor their own bodies for signs of this deadly disease rather than manufacturers being forced to re-evaluate their product and improve it to protect the health of their consumers.

If there was an association between whatever component, whatever material, and an increase in aerobic environment or whatever it was.

And yet, as Shara Vostrel, who's the author of Toxic Shock, a Social History, points out, which is the book that I read for this, things could have been much worse.

If the toxic shock public health crisis had happened a year later, which would have been the first of the Reagan presidency, there wouldn't have been nearly as many women in the administration administration to advocate for women's health.

Women like Dr.

Catherine Shands, the EIS officer at the CDC during the time who led the TSS task force.

Wow.

That could have led to decreased awareness, a slower change to manufacturing guidelines, and even less attention to the lack of transparency about tampon production.

Since the height of the toxic shock syndrome crisis in the late 1970s and early 1980s, incidence has declined, thanks in large part to, from what I can tell, rely being pulled, materials like polyacrylate, polyester foam, and carboxymethylcellulose being discontinued and tampons, absorbency being standardized, and amazing advocacy and awareness work.

Updated labeling requirements as of 2017 have boxes prominently display

Quote, attention.

Tampons are associated with toxic shock syndrome, TSS.

TSS is a rare but serious disease that may cause death.

Read and save the enclosed information.

That enclosed information must include symptoms and estimates of incidence, advises to use minimum absorbencies, and declares that risk can be avoided altogether by not using tampons and alternating tampons with PADs, which is not true.

Risk can be avoided altogether?

Apparently, that is what...

That is what I read.

Yeah.

Great.

Yeah, that's what I read that the enclosed information has to say.

Okay.

Despite the fact that it's been over 45 years since since this story broke, there is still confusion, I feel, about tampons and toxic shock, about toxic shock overall at both the scientific and consumer levels.

You know, how the two are related, how to reduce risk, and what safer alternatives exist.

Can we make them?

Do they exist?

Given that more than 10% of women in the U.S.

are menstruating at any given time.

Ooh, I love that statistic.

This is not okay.

Yeah.

That these, that we don't know the answers to these.

Yeah.

Research into women's reproductive health is continually underfunded and deprioritized.

And the shame that

surrounds menstruation keeps many women from talking about these issues or feeling like they are justified in demanding that things change.

So, Erin, tell me, are things changing?

Do we know more stuff now?

I'm not going to be able to answer that question,

really.

But I can tell you about

what we do know.

I love it.

Okay,

right after this break.

So let's just talk numbers for a quick second.

Okay.

This is so toxic shock syndrome, staphylococcal and non-staphylococcal, is a reportable disease in the U.S.

And that's how they're classified.

Staphylococcal, non-staphylococcal toxic shock.

Since 1983, staphylococcal toxic shock has been notifiable.

And since 1995, streptococcal toxic shock or non-staphylococcal has been notifiable.

Global numbers, pretty much impossible for me to find.

I don't have them.

But

this is both of these diseases are quite rare.

And the numbers in terms of the prevalence or the incidence each year

really, really, really vary depending on what paper that I read.

Most of them seem to come to the conclusion of around one-ish case per 100,000 people per year.

Okay.

But when I say they vary, I mean, like, there was a paper from 2018 that used UK biobank data.

And in Europe and the UK, these are not notifiable diseases.

So the data is even more sparse.

But looking at like biobank data, they estimated an incidence of 0.07 cases of toxic shock per 100,000, which is really, really, really low.

Yeah.

Most of the U.S.

data estimates between 0.5 and 1 per 100,000, though I've seen some that say up to two per 100,000 cases per year.

When it comes to streptococcal, because most of that is for staphylococcal toxic shock, it's even more all over the place in terms of like what the numbers are, the estimates are.

But it is estimated that somewhere in the range of like 10 to 20% of people who have an invasive group A strep infection will go on to develop toxic shock.

And so estimates also range between like one and five per 100,000.

Okay.

But you'll be happy to know that because I was unsatisfied with all of the numbers that I was finding and because

we're not

quite Aaron.

Yes, we're Aaron mathing.

Okay, Aaron-ish math.

Aaron-ish math.

I went, this is a notifiable disease in the U.S.

So if you didn't know this, you can go directly to the CDC where they have a national notifiable disease survey and they have an interactive tool that can tell you that from

2016 to 2022 that's the most recent timeframe that they had there were 2,144 cases of streptococcal toxic shock

and 217 cases of non-streptococcal or staphylococcal toxic shock that were reported interesting the the difference between in magnitude between the two right streptococcal i mean streptococcal infections are like quite still rampant and so 10 to 20% of them are developing toxic shock.

So if we look then, if we eron math that a little bit, there's a range in years, but 145 to 416 cases per year was the range for streptococcal toxic shock in those different years.

And then between 15 and 44 cases per year of staphylococcal toxic shock.

In the whole entire U.S., that's what gets reported.

And this is a reportable disease.

So these numbers should be accurate in terms of what is identified.

And so this is where we then have to remember that the

like the case definitions that we use to identify these cases are imperfect, right?

And so these are probably underestimates, even though they are accurate reported numbers, right?

Yeah.

Because these CDC criteria, and they do say this on the CDC website, they're like, you shouldn't use this as a clinical diagnosis.

Like this isn't what you should be using at the bedside to decide, am I calling this TSS or not?

Because this is what we're using from a research perspective.

And that's a little different, right?

Interesting.

Should they be different?

I mean, they have to be in part because of this, the fact that like the probable case definition, like

you can't.

you can't do a full case definition without the one to two weeks later having this sloughing rash.

You're not going to have that in the setting.

Right, right, right.

Right.

So yeah, so there is a little bit of variability there.

Um, and so these criteria will likely inevitably result in some degree of under-reporting because of that.

Um, a lot of people are likely lost to follow-up, and so you might not get the records on did they end up developing a rash?

Can we confirm that that's what that was or not, right?

Like, don't get me started on our lack of centralized medical records.

So, how can you go back and find that information?

It's hard.

Um,

yeah, so we, the it is the good news is overall, it is very, very rare.

Both staphylococcal, especially staphylococcal toxic shock, as well as streptococcal toxic shock are both rare diseases,

likely underreported, but still very rare.

And we talked already about the kind of mortality rates and things like that.

Those haven't changed from the data that I found in recent years, at least.

When it comes to the questions that you asked, Erin, about like,

where are we going from here?

What else have we we learned what's what's good what change what changes happened I don't know Erin if we've come up with any changes since the tampon task force of the 1980s isn't that depressing it is it is

it's so depressing and I

I

yeah I so I don't have any I don't have any new news um in terms of

what do we know about tampons and these relationships, besides what we've talked about already,

all of the, like across the board, the recommendations from CDC,

from FDA, like based on all the epidemiological evidence that we have, and it's all epidemiological.

And then there's some, you know, studies that have looked at like the composition of this tampon versus that tampon.

Is there a difference in lab settings of how much bacteria that you can grow and that kind of a thing?

Yeah.

And how strictly perfect?

Right.

Does that translate to human?

Exactly.

And like who's funding those studies?

I don't know.

Most of what I saw did not suggest huge differences between the tampons that exist today, the tampons that are on the market today, regardless of their composition, in just in a laboratory setting, how much bacteria are they growing, right?

Which again points to that it's not, it's not just the tampons themselves, it's this interaction between the tampons and the environment.

Of course.

The recommendations across the board are to use, like you said, the lowest absorbency that you can,

which at least now they're standardized.

I mean, I guess, yeah.

To some degree.

Still, how the heck do you like, yeah, yeah.

Yeah.

Well, also because I always think, I used to think about this a lot when I used to use tampons.

Like, what is six grams of menstrual blood?

I don't know.

No idea.

No clue.

It's just a little blue liquid.

Like,

yes, that's what it is.

That's what it looks looks like.

So, yeah, but that is the recommendation to change them at least every six to eight hours and not go longer than that.

I didn't know that you weren't supposed to use them overnight growing up all the time.

All the time.

Did.

Yeah.

But I mean, again, because this is so rare, like I

really like, Erin, the way that you went through all of the history of this and kind of emphasize the fact that, like, we need to hold accountable the correct groups, right?

And it is not an individual's job to make sure that they don't get it.

It's like at the very least, I think that what it shows is just, and I know that there are people working on this.

And I'm not saying that there's no one working on this, that there's no effort being, you know, no interest, no effort, no awareness.

But like.

The fact that we don't have some of tools maybe to be like, who is likely?

Who has antibodies at high enough levels?

What are the screening protocols?

Like, how can we better

do better?

Yes.

How can we do better?

Yes.

Yeah.

And I do think that that's an interesting arena is like, and it's hard because of how rare it is, right?

So like, where's the funding for it?

Because people don't care as much.

Where is the like high kind of clinical suspicion to think, is there a test that do I have a test that I can run?

How do I run that test?

On what population should I be running that test?

When should I be thinking about it?

When should I not?

And those kinds of things.

So it's all like, there needs to be a lot more done.

I didn't find any updates on it.

And maybe I missed it.

So if you know of things, please let us know.

Reach out.

Yeah.

But if you want to know more,

sources.

Papers and sources for you.

Yeah, we do.

I have some papers, but I would say, again, I'm just going to shout out that book,

Toxic Shock, a Social History by Shara Vostrel.

Love it.

Great.

I had so many papers for this, Erin.

Let me tell you some of my favorite ones.

okay?

From the Lancet 2019, or sorry, the Lancet Infectious Diseases 2019 by Berger et al., there was Menstrual Toxic Shock Syndrome Case Report and Systematic Review of the Literature.

Such an interesting case report in there, too.

Really highlights how much we don't know and how we likely underdiagnose it.

There was a really very thick book that I read just one chapter of called the Palgrave Handbook of Critical Menstruation Studies.

And the chapter was called Toxic Shock Syndrome and Tampons, The Birth of a Movement and a Research Vagenda.

So that was an interesting

really liked it.

But I also want to shout, I had a bunch more like, you know, research papers and things, but I also wanted to give a shout out to a Washington Post article from 2016

by someone's last name was Cowart, because I didn't write their first name.

That was called Women Are Still Getting Toxic Shock Syndrome and No One Quite Knows Why.

It just is a really, it's kind of like this podcast, but in written form.

It was a really great overview.

They went into the history.

They went into like way more detail on the biology than I see in a lot of,

you know,

popular media.

Yeah.

So it was a really great, like very

overview of it.

So I wanted to give that one a shout out.

But we have so many more sources on our website, this podcast will kill you.com, all of them from this episode and every one of our episodes.

Thank you so much again to Autumn for sharing your story with us.

We appreciate it.

Just

more than we can say.

It really does mean so much to us so thank you yeah thank you also to bload mobile who provides the music for this episode and every single one of our episodes thank you to tom and liana and pete and brent and everyone else who at exactly right who does so much um to help us with this podcast we really love it it's fun thank you to you for listening and watching yeah

um

i'm embarrassed by that face we really like it i liked it i liked it thank you so much for for being with us through this.

I hope you liked this episode.

Yeah.

Yeah.

Let us know.

Let us know what else you want to hear.

And as always, a special thank you to our patrons.

We appreciate your support so very much.

Yes.

Thank you.

Well,

until next time, wash your hands.

You filthy animals.

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