Heyl.

I'm Autumn.

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

So when I was eighteen, I was hanging out with my boyfriend at the time at his house and now was on the last day of my period.

So I was wearing a side light tampon.

It was about ten PM and I was at that eight hour limit of my tampon.

But he did not have a trashkin 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.

Welcoup at eight am to change my tampon again.

But now I was feeling a little bit woozy and I had this like itchy red palm.

Wresh for a bit of contexts on this next part.

I also have a condition called hereditaria and duodema, which can often look and feel like an allergic reaction even though it's not.

So I figured that I might have been having an ha a tack in my hands, and so I used a dose of my HAE medication.

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 advantage ellly something.

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

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 strip 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 Depth's doorstep today and then just be fine tomorrow if I had AU of course, and I'd also struggled with these just seemingly endless infections of staff and strip 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 blue 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 gayor aide, and it really wouldn't matter anyway, because I could not keep my gatheror aid 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 four PM when we got to the r and then about seven PM, which was just eighteen hours after removing tampon ero, I was in the ICU with a blood pressure at fifty to over twenty eight, a scorch and fever and then either racing heart 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 hase, I remembered all of the warnings about toxic shock syndrome on tampon boxes, and I told my doctors about what had happened with the tampa 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.

That's what I ended up happening five days of hospitalization, my first ever perfect examined CAP.

There's awful and enough lines and anbiotics take down a horse.

I was discharged thanks to early intervention, quick thinking, and then a hospital staff intent on sliver the mystery.

I'm still alive today and I'm lucky to have not lost any limbs or organs do the tissue death.

The worst that I personally have in recovery was about a year of being immune compromised and having to selute off all of the skin for my palms and souls and mucus membranes to the cell depth, which is just about the grossest mental imas you can muster.

But I guess it's the price of being alive.

And now that that's ten years later, I'm really open about menstruation and what we can do to prevent TSS and who might be more susceptible to contract in TSS, and I love to talk about the need for free access to menster 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 not treat menstruation as a taboo topic, because I'm living proof on how treating things as taboo can just be a little bit hoppy, sometimes.

Absolutely terrifying.

Yeah.

Yeah, And to be the one who has to tell your doctors, by the way, could it be this yet?

This be toxic shocks?

Oh my gosh, I mean it just is like yeah.

And then especially because 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 I was on web md and this is what I think.

But like it's it's real, right, I have to speak up and advocate.

And 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 Aaron Welsh and I'm Erin Allman Updike.

And this is this podcast will kill you.

Welcome to Toxic Shock.

Toxic Shock.

Yeah, I'm 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 well yeah, okay, that's fair.

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

Yeah, I have I have so many questions for you, Aarin about like how we first saw this and like all of the I saw little bits and pieces of what happened in the late seventies early eighties, and like I I just have so many questions still and I'm I'm really excited.

Do you want me to go first?

But kind of, but.

We could give it a go.

It would be fun on the fly.

Oh, on the fly.

Well, I guess before we get into literally any part of this, it's quarantine time.

What are we drinking this week?

We're drinking shock tactics.

I could hear the pause, like is it shocked?

What was he just went over there.

We literally just talked about it.

A shock tactic.

Shock tactic, Yeah, and it's it's we're doing.

Honestly, we're doing like a make your own quarantini if you want.

But the standard recipe is a plus syberrita 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, they're frozen.

Go to this frozen section.

I do love, I mean yeah, and I feel like my my trees produce enough to make one cobbler type.

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 the dry that all that we ate I think we gave something to you.

Thank you.

Yeah, so sour cherries, sour cherry, 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 placed Brita.

And then you can make your own quarantine on our website This Podcast will Kill You dot 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, quite exciting stuff, it is.

It is.

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

It's called this Podcast will Kill You dot 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 dot org affiliate account, Patreon page.

The list goes on, This goes on.

Check it out.

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

We'd love it.

Tiered Toxic shock shock syndrome syndrome.

Okay, Okay, I'm gonna have you go first because I feel like it'll help me tell my story better.

It's like the way we do the way we.

Do it, yeah, right after a quick break.

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 pyogenies or group bastro.

Okay, so Eric, I.

Was like, I have a question already off the bat I thought about as I was putting the stick other I was like, I should probably check in with Aaron and see if she's doing the history of like staff TSS or strap TSS.

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

I'm going to do both.

Great, Okay, great, I think I'm doing staff 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 staff associated toxic shock and then there's strep associated toxic shock.

Okay, real quick, this is just a minor question that should we give it to me?

It should?

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

Is it totally is still called toxic syndrome.

Yeah, yeah, okay, yeah, it's just that's how it got its name.

And 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 now.

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 them, right, 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 staff or strap and these are both gram positive really cute little ball shaped bacteria and the most famous of the two is staff TSS, and that's because that is the one that is more strongly associated with menstrel and tampons with menstruation and tampons.

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

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 STAFF or strep that produce that toxin.

There are some differences in like the kinds of symptoms that we see whether it's STAFF or strep.

But I'm going to kind of just focus on the similarities.

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 one hundred and two fahrenheit or higher.

That's thirty eight point nine 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're just going through the symptoms.

We're going through the symptory.

This is how we know signs and symptoms.

You also, especially in the case of staphylococcle toxic shock, we'll 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 muscular skeletal system, which we might see with like PA 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, okay, or evidence of a bloodstream infection, so growing this streptococcal bacteria in your bloodstream.

Yeah, with staff you might not.

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

And with staff, only about five percent of blood cultures are positive for staff aureus in toxic shock, compared to like sixty to eighty percent of blood cultures being positive and strepto cockle toxic shock.

Okay, okay, does that make cop Yes?

Yeah.

A couple questions okay, sorry.

Number one timeline of these 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 strept to coco versus stapholcockle.

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

It really depends on the infection with strepto cockle 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 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 twenty four to forty eight hours.

Okay, that's very fast.

Interrating.

Another question then, so related to the blood cultures, Yeah, Ken, you also screen for the toxins themselves, Like, is that the way that question look for this?

You?

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 too 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 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 staphylococcle toxic shock, is that you have to show that there's no rocky Mountain spotted fever, there's no liptosperosis, it's not actually measles, it's not meningitis.

Like you have to rule out all others 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 stapholoccle 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 the 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 the future.

Say, yeah, hey, shocking, Wow, I really didn't mean to do that.

Okay.

So staph oreus is often a like a part of our biome, like it's part of our our microbiome is strip piogenies.

Oh, it can be definitely, it can be Okay, I can't get yeah, in like your throat or your nose or something like that.

It can be interesting.

Staff is definitely like it is our friends.

Staff lives on probably almost all of us.

Yeah, so how does this actually happen?

How do you get from like, I don't know, staff just living on you to toxic shock, Well, let me tell you.

Uh, 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 staff.

It's often seen in the post operative setting.

So it could be like a wound or an incision after an operation because staff 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, Aaron, 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 t SST one, a toxic shock syndrome toxin really clever, straightforward.

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

And we talked about this idea of a superanergen.

Actually, in our scarlet fever episode, which you may remember, scarlet fever is caused by strut piogeny, right, a specific strain of strup piogenies.

So superanigens 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 rather whether that's damaged 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 questionnaire in Yeah, I didn't look into that, like the evolutionary history or anything of these types of toxin, right, but it's really really really weird.

I can.

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?

It's 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 and 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 it abop, 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 anigen presenting cells are like a mediator.

They're the ones who take all the anigens and they decide, like which parts do we show to T cells?

Like how are we gonna start this process?

Right, they're making these decisions exactly.

They're organizing, sorting through things.

What super anigens are doing is bypassing this process super anigens, they themselves go directly to the T cells, grab a hold of these T cells and then grab a hold of these anigen presenting cells and bind them together, like bridge them, 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.

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

This analogy has been taken too far.

You know, but I love that.

Okay, So I try 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 indigens 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, made it straight to the DJ booth somehow, 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, or it's like just a few of us, and then, unbeknownst to the host, her friends have invited all of their whole school brothers other friends and yeah, and they just run through the doors.

Okay, just run through the doors.

Wow.

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

Do you I'm stressed about it because those those scenes and movies always stressed me out because I'm like, you're gonna hurt the house, Like what about this?

What's killing on the carpet?

Like every teen movie you've ever seen, but.

I was not jol in high school.

If you can't 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 I've got a little basket of them.

Wasn't even my house, but I was right the 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 superanigens are overdoing it.

Regular antigens like just your typical ones activate about point ero one percent of our T cells on average.

Okay, point ero one percent, A very.

Small proportion of our T cells are being activated by any given antigen or exposed to super anigens are activating five to thirty percent of our T cells.

But now, okay, what what scarlet fever another super antigen?

What about what makes a super antigen a super anti Like obviously we know the characteristics of it, right, but like, what is there a range?

Is there a spectrum of antigenicity from not very I mean obviously, but to super antigen?

Why?

Why?

I guess it's just the.

Question that's the QUESTIONNAIREIC.

It's a great question, well formulated, Thank you so much.

Yeah.

I don't know though.

Fascinating, Okay, isn't it?

Yeah?

So yeah, So I mean that that is toxic shock, and that is you know, how it happens and what like what is going on in our bodies in terms of the path of physiology.

Okay, So question about the two different strip and staff give it toxic shock.

Is there a difference in case fatality rate?

Is there a difference in treatment and management?

And is there a difference in susceptibility again in the.

Future to it such fun question, barren case fatality definitely let me scroll in minotes.

Case fatality rates for streptococcle toxic shock are very depressing, anywhere from like thirty to sixty percent.

Okay, so very very very deadly.

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

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

You try and get like source control if you can.

So that means if there's like a necrotizing fasci i itis, you have to debreed 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 staffholococcle toxic shock, the case fatality rates really can vary, and most of what I saw estimated that the majority of staphloccle 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 sixty percent of staffaccle toxic shock is from that rather than from menstrual sources.

The fatality rates, I've seen a real range anywhere between like eight and twenty percent.

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 made wound infections or operative infections are maybe like older, or have more comorbidities or.

Something comprise in some way.

Or is it because that they also have this infection that you're dealing with, where most of the time with menstrual associated toxic shock, there's no infection.

So like ten to forty percent of menstruating people just have staff areas in their vagina at any given time, 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 eighteen to twenty five percent of strains of staff orius 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 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.

Staff Ores 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 in, 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 anigen and we usually make antibodies against antigens, right, uh huh.

Something like eighty percent of people have antibodies against these types of superanigens, especially when we're looking at the common one TSST one.

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 five percent of people are thought to be colonized in the vagina with strains that can potentially produce this toxin.

Hmm.

Okay, so one to five percent of people we're talking about menstrul 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 aaron, 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, there's talk a little bit about it, but like it's just like this is the part where I I still have found so much disagreement, not not even disagreement, but lack of clarity on and these are the characteristics.

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

Is it that?

Is it the tampons?

Is it the blood?

Is it like?

Is it a micro abrasions?

Is it leaving tampons in too long?

Is it taking them out?

It's like all these different questions.

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

And that's the point.

It's not one thing.

Is 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 immuno compromise 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 mecause membrane get into your bloodstream?

How much oxygen is being contained in the tampon versus in the menstrual cup, because, by the way, there 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 tampon saying that like tampons are the problem here.

Well, yeah, it's complicated.

It's complicated.

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, and we have a lot of data that 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, horry, what 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'm source control.

That's going to be important.

So that means taking care of any infection that we know of, if it is a mentual toxic shock and there is a mental 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 clindamycin 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 act fast.

Yeah.

Interestingly, there's some evidence for the use of ivig okay, 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 streptococcle more than staff of a cockle, just because that's the data that we have, Okay, Yeah, and that's mostly it aarin 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, not that it's much more complicated thing than that, right, But yes.

Yeah, I think I have more questions, but I'm gonna they're just gonna 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 write, I couldn't not say, like, well, we first found out about this.

I mean, I'm so 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, Aaron, 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, it was like tampon's 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, just speaking personally, Yeah.

I mean I get Yeah, 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 and tampons, 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 wrong giving me toxic shock?

Yes?

Should I be using tampons at all?

Is that gonna 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 Erin 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 eighteen years old, when you're sixteen 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.

I mean, it wasn't like something in life.

This is right, 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 is very true to menstruating people.

Yeah, I can't wait.

I can't wait to hear about this because I learned so much inefertently 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 I'm I'm excited.

Let's start at the beginning.

Okay, okay, okay, okay.

September twenty fifth, nineteen seventy seven.

Okay, Denver, Colorado, Oh I know.

A girl fifteen 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 forty point nine degrees celsius, which is one of five point six degrees fahrenheit, and her blood pressure was sixty six over ero 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, pure you lin, 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 on her shoes.

Imagine how terrifying can.

You not just describe her as dying?

Right?

She's acting a little aggressive?

Oh, that is all aggressive.

Her doctor's pumped her full of ivy fluids, antibiotics, steroids, heprin digitalis, and put her on a ventilator.

Unfortunately, after eight days of intensive care, she made a complete recovery, except for some necrosis in a few of her toes, which ultimately had to be amputated, and the fact that her entire skin had started to slush off, but she was stable and after seventeen days in the hospital she was discharged.

My goodness.

Yeah.

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 seventeen seven total from nineteen seventy five to nineteen seventy seven, including one death in Colorado or in Colorado in the hot Yeah, that had been 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 staff oreas infections like scalded skin syndrome and some staff food poisoning cases.

Swab cultures confirmed that a toxin producing staff orius may be the culprit, and so, in combination with shock being a unifying future of the syndrome, the Denver doctors named the new condition toxic shock syndrome in a nineteen seventy eight paper.

Okay, yeah, was it actually new?

Was this brand new?

I mean probably not.

There were a few other cases that people found in the medical literature from as far back as the early nineteen hundreds, and there was some other like ancient plague that someone proposed.

It doesn't really seem to track in my eyes, but one research one researcher suggested that it might be like a new toxin producing strain, sort of like how we talked about with scarlet fever against piogenies went from being like super super deadly to them not like just massive.

Shifts in shifts in what strains strains?

Yeah, yeah, yeah.

And so regardless of whether this was do or not, the nineteen seventy eight paper, which is by Todd at all 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 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 Immortality Weekly report on that featured toxic shock syndrome was published in May nineteen eighty.

With these additional reported cases from these other states, researchers eroed in on a toxin producing strain of staphoius.

Right, like, that seemed to be behind it all, behind these cases, right, but the root 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 fifty women who had toxic shock syndrome and fifty 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 that these two individuals.

Let's match them these pairs love it?

Case control.

There we go, and then using phone surveys importantly conducted by a woman EIS Officer Catherine Shans, because I think that was a really crucial part of getting people to actually these women to feel like they could open up, which actually taught their experience.

Yeah, they asked a million, carefully awarded 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.

Go to your local grocery store and check out the menstrual products aisle.

You haven't lately, she got shelves.

I mean I haven't looked lately because 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 sense I cannot, I mean I cannot.

Yeah, And the landscape in the late nineteen seventies when toxic shock began popping up was roughly similar to this.

So why then, like what was happening in the late nineteen seventies that led to suddenly the syndrome being recognized on a nation on a national scale.

Tell me, okay, here's where we have to get into some tampon nuance.

Yes, in the decades since the first commercially available tampon in nineteen thirty six, just tampacs tampon technol had undergone some pretty big changes, very gradually at first, since the demand for tampons remained pretty low until the nineteen sixties.

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 handwringing 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, being work long shifts, all of these things won out over these anxieties and by the nineteen sixties, 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 is better catchphrase, this one is more observant, this one is whatever.

All these different things the applicator.

The first tampons made were one hundred percent cotton, but these newer tampons began to incorporate other fibers to increase absorbency, including synthetic fibers and materials developed in the mid twentieth century, things like polyester viscos rayon, which is derived from wood cellulose and processed with other chemicals, polyacrylate, which you can also find as an absorbent and disposable baby diapers.

Okay, that makes sense.

Carboxy methyl 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 one hundred percent cotton alone, like, very very very few do use those or usee just cotton Procter and gambles.

Rely tampon which took I know you right, no cane.

I hated to hear all about Rely.

This is the tampon that took center stage in the toxic shock syndrome crisis of the nineteen eighties.

Rely was composed of quote, a polyester sheath, compressed polyurethane foam cubes, and carboxy methyl 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, right, because I feel very much like, oh, well, those don't sound like natural words, and it's like that doesn't it.

Yeah?

And it's also like, just because something is so called natural or is cotton rather than rayon does also does 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, maybe research will show that it does.

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, yeah really was going.

Yeah.

A big part of this so rely was considered and advertised as a super absorbent tampon with lightweight materials able to hold fifty to fifteen hundred 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 probably 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 nineteen seventies, what was that approval process like, tell me to be honest, close to non existence, Yes I knew, I mean yeah, until nineteen seventy six, tampons and sanitary pads were cloudsified 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 in this this is a case I think of like technology moving faster than our ability to understand the implications of it.

Yeah.

Yeah.

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

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

Uh huh.

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

So in nineteen seventy six, the Medical Device Amendments was added to the Federal Drug 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, nitrial 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 free Amendment devices, that's a problem.

It is a problem.

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

Okay, Rely it even absorbs the worry.

Yeah, yeah, ya ya.

This was the tagline on the sample box containing four Rely tampons that was shipped out in mass across the US to millions of homes from the mid nineteen seventies to nineteen eighty.

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

Try it out.

Maybe you like this super absorbent.

The materials that were used in Reli tampons had been used in other tampons on the market, just not the precise configuration, right, But how could anyone know that?

It cannot?

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

Yeah, yeah, the trade secret, trade secrets.

I mean, I have a lot of thoughts on that.

In some recent news about certain quote unquote unextinct animals anyway.

Oh my gosh, we should do an episode dire Wolves.

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

But because anyway, overall back to toxic shock.

As far as I could tell, until the late nineteen seventies, 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 you know, individual issues, not outbreaks.

So the spate of toxic shock syndrome cases with the beginning in the late nineteen seventies 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 twenty seventh, nineteen eighty MMWR described the link between toxic shock and tampons.

Of the one hundred and five cases since September nineteen seventy eight, ninety six percent occurred in women aged twelve to fifty two during their mental periods, Okay, ninety six percent, and the case fatality rate was fifteen percent.

Wow.

See that's so high, so high, That's.

What I was asking, And you were like, oh, that's pretty low, Like fifteen percent 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, So yeah, brands 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, so it's your economic statist, geographicalcation, et cetera, they found that one hundred percent of the cases used tampons, compared to eighty six percent of the controls.

Vaginal cultures of those with toxic shock before starting antibiotics showed ninety four percent positivity rate for staff aureus okay, and no similar cultures had been done for controls because yeah, yeah, retrospective, yeah right, But in general, the prevalence of the bacterium in the vagina and cervix ranges from two to fifteen percent, is what I saw in this book.

Yeah, well, because it depends too on It can be up to forty percent when it's just staff orious.

But not all of them are going to produce it.

Hoxsent's right, ver very yis.

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 absorbancies 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 seventy one percent of those who had contracted toxic shock using the brand.

Wow, I didn't realize it was that high.

Seventy one Well, yeah, and it's hard to say how much of it was realized popularity, because it had become very popular over a very short time, especially with all those mail out you know, sample looxes.

Like what percentage of those eighty six percent of people who didn't get toxic shock also were using relyed tampons.

Twenty six percent of those control group the brands.

Yeah, yeah, but it wasn't just down to relized popularity.

The risks 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 carboxy methyl cellulose that encouraged bacterial growth.

As you can imagine, this was not welcome news to Practor and 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 shocks, 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, no, no, So instead the Proctor and 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 compliants 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 out 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, are not any more dangerous than the other tampons out there.

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

The best were so different.

We're just like everyone.

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 nineteen eighty 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.

There was a clear association with RELY specifically and toxic shock syndrome, so this meant that this potentially dangerous product was no longer going to be available for purchase.

But on the other hand, this focus on RELY tampons only provided a false sense of security once they were removed from the shelves, 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 nineteen eighty 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 a good thing in terms of raising awareness.

The CDC estimated that tampon use dropped from seventy percent to fifty five percent by the end of nineteen eighty 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.

Ye.

Toxic shock syndrome is a variant of scarlet fever.

Tampons cause abrasions or ulcerations that serve as a root 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 that 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, 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 that's the message.

Thing, that's the.

Message, or tampon's cause toxic shock or taking them out too soon, you know, like all of these different things.

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 to stay over and over again, 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 erin and I think that that still happens today, even in the talk of like, well, did are you using the right absorbances?

Are you using it into long?

Yes?

Blah blah blah, And I'm like, did you not buy the organic ones?

Right?

I'm sorry what?

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 nineteen eighty, which is when Rely was still on the market, fifty cases of TSS were reported in Minnesota, forty five percent associated with Rely.

So it's fifty cases between that those months, and in a similar period of time after Rely had been pulled, there were fifty nine cases.

Yeah, mostly associated with other super absorbent tampon brands.

But now that there was no single brand to blame, right, 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 instruction, you.

Didn't read the instructions.

And on top of finally standardizing what Junior, Regular, super and super plus actually meant, which happened in nineteen eighty nine, Aaron, I.

Want to do a whole episode on the Tampon Task Force.

Oh, 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 it took so long to get anything so long.

Yeah, it took so long.

It's unfathomable how it died 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 recommend the book at the end of this, but yeah, but so Yeah, they 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, 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 what are I looking 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 super absorbent tampons created, like you said, this more aerobic environment for staph rias to multiply, and frequent changing created even more more aerobic conditions.

Oh.

Interesting, that's what some of the research said.

But like you said, its nuance, there's more, yeah, 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 reevaluate 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 Sera Vostrel, who's the author of Toxic Shock of Social History points out just 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 to advocate for women's health, women like doctor Catherine Shans, 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 nineteen seventies and early nineteen eighties, incidence has declined, thanks in large part two from what I can tell, rely being pulled materials like polycrylate, polyestrophoam, and carboxy methyl cellulose being discontinued in tampon's absorbency being standardized and amazing advocacy and awareness work.

Updated labeling requirements as of twenty seventeen have boxes prominently display quote attention.

Tampons are associated with toxic shock syndromes.

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 incidents, 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've read.

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

Okay, despite the fact that it's been over forty five years 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 related, How to reduce risk and what safer alternatives exist?

Can we make them?

Do they exist?

Given that more than ten percent of women in the US are menstruating at any given time, Oh, I love that statistic.

Yeah, this is not Okay, yeah, 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 surrounded 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, staphloccle and non staphlococcle is a reportable disease in the US, and that's how they're classified staphococal non staphloccleaxick shock.

Since nineteen eighty three, staphylococcle toxic shock has been notifiable, and since nineteen ninety five, streptoccle toxic shock or non stapho cockle 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 incidents each year really really really varied depending on what paper that I read.

Most of them seem to come to the conclusion of around one ish case per one hundred thousand people per year.

Okay, but when I say they vary, I mean like, there was a paper from twenty eighteen 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 point ero seven cases of toxic shock per one hundred thousand, which is really really really low.

Huh.

Most of the US data estimates between point five and one per one hundred thousand, though I've seen some that say up to two per one hundred thousand cases per year.

When it comes to strip tocccle, because most of that is for staffococcle 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 some somewhere in the range of like ten to twenty percent of people who have 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 one hundred thousand.

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 not quite erin yes, we're Aaron mathing, okay, aerin ish math.

I went, this is a notifiable disease in the US.

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 I know me too.

From twenty sixteen to twenty twenty two, that's the most recent timeframe that they had, there were two thousand, one hundred and forty four cases of streptococcle toxic shock and two hundred and seventeen cases of non streptococle or staffocockle toxic shock that we're reported.

Interesting the difference between magnitude between the two, right, I.

Mean, streptoccal infections are like quite still rampant, and so ten to twenty percent of them are developing toxic shock.

So if we look then if we air in math that a little bit, there's a range in years, but one hundred and forty five to four hundred and sixteen cases per year was the range for streptococle toxic shock in those different years, and then between fifteen and forty four cases per year of staphflccle toxic shock in the whole entire us.

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, because these CDC criteria, and they do say this on this 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 sluffing rash.

You're not going to have that in the setting, right, right, right?

So yeah, so there is a little bit of variability there, and so these criteria will will likely inevitably result in some degree of underreporting.

Because of that, 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, Yes, So the good news is overall it is very very rare.

Both stapflococcle, especially staphfloccle toxic shock, as well as strupture cockle 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 Aaron about, like where are we going from here?

What else have we learned, what's what's good?

What change?

What change has happened.

I don't know, Aaron, if we've come up with any changes since the Tampon task Force of the nineteen eighties.

Isn't that depressing?

It is?

It is?

It's so depressing, and I I, yeah, So I don't have any I don't have any new news in terms of what do we know about tampons and these relationships besides what we've talked about already.

H 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 that's you're really perfect, right?

Does that translate to human exactly?

H 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.

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 glue, It's just a little blue liquid.

Like, oh, yes, that's what it is, what it looks like.

So yeah, but that 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 I really like Aaron, 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 get them to do better?

Yes?

How can we do better?

Yes?

Yeah, I 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 they're it 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, let us know.

Reach out.

Yeah, but if you want to know more, who 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 Shocks Toxic Shock, a Social History by Shara Vostrel.

Love it great.

I had so many papers for this, Aaron.

Let me tell you some of my favorite ones.

Okay, from the Lancet twenty nineteen or sorry, the Lancet Infectious Disease Is twenty nineteen by Burger at All.

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 sick 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 Agenda.

So that was an interesting I 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 twenty sixteen 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 as 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, non your 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 would kill you dot Com, all of them from this episode in every one of our episodes.

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

We we appreciate it just we mean more than we can say.

It really does mean so much to us, So thank you.

Yeah.

Thank you also to Bloodmobile, who provides the music for this episode and every single one of our episodes.

Thank you to Tom and Leanna and Pete and Brent and everyone else who at exactly right, who does so much to help us with this podcast.

We really love it.

It's fun.

Thank you to you for listening and watching.

Yeah, I'm embarrassed by that face.

We really like it.

I liked it.

I like it.

Thank you so much 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 feel the animals.

Bum bum bum bum