Ep 181 PCOS: Beyond the cysts

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Hi, my name's logan. I'm a transgender man. I use
he hymn pronouns, and I have PCOS. My symptoms first
started really appearing when I hit puberty. My periods would
last a week on average, and they were very heavy.
The cramps would be so bad that I couldn't walk,
I couldn't sleep. I would just lay awake at night

(00:21):
in agony, despite taking pain medications. I also had very
severe acne, and I had a lot of excess body
and facial hair. If I didn't shave or pluck my hair,
I could actually grow like this scraggly little chin beard,
which was very affirming to me as a young trans
masculine person. That was probably the only benefit of having

(00:42):
PCOS was the masculinizing features. By the time I was nineteen,
my periods became even more painful, if that was possible,
and even more irregular. At one point, I went ten
months without a period. December twenty eighteen is when I
first experienced assist bursting. I was sitting in a college
math final at the time, and I remember being in

(01:03):
so much pain from my abdomen that I could barely breathe.
I managed to finish the final, but I could hardly
walk because of the pain, so I was rushed to
the er. When we got there, I was not treated well.
They started off by accusing me of faking my pain
to get opioids, but soon after they thought that it
could be appendicitis. I had to get blood drawn and

(01:26):
a cat scan. They actually ended up bursting one of
the veins in my arm like trying to do the
die for the cat scan, so that was also not
a fun experience. When the doctor finally came in to
give me a diagnosis, or so I thought, all he
really told me was your appendix is fine, but you
have multiple cysts on both your ovaries, so just go

(01:47):
on birth control, and then I was dismissed right after
with no diagnosis. The next year that followed, I had
to get a lot of blood work and scans done,
but no one seemed to understand what was wrong with me.
I started birth control but immediately became extremely depressed and suicidal.
My body reacted so poorly that I had to quit

(02:10):
after like a month. It was actually very terrifying how
it changed my mental state. And once I stopped the
birth control, I really wasn't given any other options. For treatment.
At some point, a doctor pulled me to the side
and said, I looked at your records and I'm going
to formally diagnose you with PCOS. You have elevated testosterone,

(02:31):
facial hair, irregular periods, and multiple cysts on both ovaries.
I'll never forget her telling me that I was lucky
that I had lean PCOS, which basically meant you have PCOS,
but at least your skinny. Once again, I was told
my only options for treatment were birth control, which did
not work before, or to get pregnant. Much to my horror,

(02:55):
By this time, I was aware that I was transgender,
and I told her birth makes me suicidal, so she said,
in that case, I should just go to therapy and
go on a diet. I was twenty years old and
one hundred and twenty five pounds at the time. Needless
to say, the diet didn't help. I lived in chronic

(03:17):
pain for the next few years, with both my physical
and emotional states causing me a lot of harm. It
wasn't until I decided to start testosterone for my gender
dysphoria that I actually felt like myself again. As a
result of taking testosterone, my period stopped. My mental state stabilized,
and I was happy and pain free for the first

(03:38):
time in a very long time. I remember bringing this
up to my new doctor and her telling me some
bodies just function better on different hormones. I've now been
living without PCOS symptoms for the past three years, and
the quality of my life has greatly improved. I'm a bioengineer,
and it really breaks my heart that this is the

(04:00):
state of medical care for people who menstraight. I experienced
a lot of sexism and a lot of transphobia throughout
the whole process. All the assumptions doctors made about me
at the time were made through these heterosexual cisgender lenses.
They assumed that I didn't want to look masculine, that
I'd eventually get pregnant, and that only birth control and

(04:21):
estrogen based pills would work for my body. But this
was never the case, and I suffered so much as
a result. Transgender people are often left out of these conversations,
and I think it's important for people to know just
how distressing it can be to have your pain and
your identity dismissed by the medical field.

Speaker 2 (05:26):
Logan, thank you so much for sharing your story with us.
It really is so meaningful and important to get to
hear these stories of like what it is actually like
to live with PCOS. I think, really it really helps
so much.

Speaker 3 (05:43):
Yeah, it really provides so much context for us, for
everyone listening. And thank you so much for sharing your
story with us.

Speaker 4 (05:52):
Hi, I'm Aaron Welsh and I'm Erin Allman Updike and.

Speaker 2 (05:56):
This is this podcast will kill you.

Speaker 4 (05:58):
Welcome to PC long awaited.

Speaker 2 (06:01):
I feel like so long awaited. I mean, I wonder
I didn't do this search, but I wonder if you
like searched our email. Oh gosh, what the first suggestion
for PCOS would be?

Speaker 3 (06:13):
It had to be years ago, and probably probably even
before we did endometriosis, which was how many years ago now,
long time?

Speaker 2 (06:19):
Twenty nineteen?

Speaker 4 (06:21):
Was that?

Speaker 2 (06:21):
No, No, I don't remember. I later, I don't remember either.

Speaker 4 (06:26):
It's fine, and it's been a minute.

Speaker 2 (06:28):
It's been a minute.

Speaker 3 (06:29):
And PCOS has been on our radar since then and before.
And I am thrilled for this episode and also honestly
embarrassed by how little I knew. When I thought that
I knew, I I was diagnosed with PCOS in twenty thirteen,
I remember, Yeah, and I went through all of med

(06:52):
school and all of residency. So I thought that I
had a pretty good handle on PCOS. I learned so
much Aarin.

Speaker 2 (06:58):
Yeah, I same, same. I mean, I do not have
PCOS as far as I know, But I thought I
thought I was like, oh, yeah, I know what this is.

Speaker 4 (07:08):
Yeah, my gosh.

Speaker 2 (07:10):
Yeah, And so like I'm just so I think that
this was a moment where I was so I'm so
grateful that we get to do this podcast.

Speaker 5 (07:18):
Same where because part of it selfishly is like, oh
I feel like I know more about this now, Like
I there were I had all these misconceptions.

Speaker 2 (07:27):
There were things that I finally realized. But I think
also like this is so many people have similar misconceptions.

Speaker 4 (07:33):
I know exactly, Like it's never just us.

Speaker 5 (07:36):
It's never just us. Yeah, so we're really excited. Yeah
maybe sometimes it is.

Speaker 2 (07:42):
Just maybe it is just us. But in any case,
in any case, I'm excited. But before we get into
the full picture of PCOS, it's quarantin any time time,
who are we drinking?

Speaker 4 (07:56):
We're drinking under revision. Those are Brackett.

Speaker 2 (08:03):
Watching us listening, Yes, under revision Because truly, like I
feel like our our perception of this is constantly changing
and needs to change in many ways to deliver better
care and better empathy and awareness.

Speaker 4 (08:18):
So we'll get into So tell us first, are what's
in under Revision.

Speaker 2 (08:24):
It's it's it's a place Brita version and it's so good.
It's lavender syrup and lemon juice and club soda and
it's like a little lavender lemona fresh and relaxing.

Speaker 3 (08:39):
Yeah, we'll post the full recipe on our website, This
podcast will kill you dot com. We'll post a video
of Aaron Welsh making it.

Speaker 4 (08:47):
Sorry.

Speaker 3 (08:47):
Yeah, we're gonna try on our social media's like Instagram
and the TikTok and the Facebook, et cetera. We're on
Blue Sky as well. So if you're not following us,
you should consider doing that. If you haven't yet rated
and reviewed and subscribed to our podcast on your favorite podcatcher,

(09:08):
iHeart Podcasts, Apple Podcasts, Spotify, we'd love it if you
do that. If you're not yet subscribed to the exactly
right YouTube network channel, consider doing that.

Speaker 2 (09:20):
We're there just a gentle recommendation, a nudge.

Speaker 4 (09:23):
A nudge in the right direction, and.

Speaker 2 (09:27):
We have it exactly right direction. Sorry, thank you, thank you.

Speaker 3 (09:33):
And Finally, we have a website. It's called this podcast
will Kill You dot com and on it you can
find merch you can find Patreon, you can find bookshop
dot org affiliate accounts, and a Goodreads list, and Bloodmobile
who does our music, and all of our sources, and
so much more, so much more.

Speaker 2 (09:49):
And that was great, and I think there's nothing else
to cover except PCOS. So let's take a break and begin.

Speaker 4 (09:57):
Okay, can't wait.

Speaker 3 (10:14):
PCOS stands for polycystic ovarian syndrome, which really makes it
sound like it's a disease where you have cysts on
your ovaries. This should be pretty straightforward. It's not that, Arren,
not that, not that.

Speaker 2 (10:30):
That was my misconception Number one. I was like, surely
the name must be a clue as to what's going
on here.

Speaker 4 (10:36):
Not even really a good clue at all.

Speaker 3 (10:38):
Actually, Yeah, what PCOS really is is an endocrine disorder,
which means it's a disorder of our hormones. And not
just like one or two of our hormones. No, no,
today we're going to get to talk about almost all
of the hormones that we use and have in our
bodies and their effect on all of our body systems. Okay, Yeah,

(11:04):
there is not a single test that we can do
to diagnose PCOS, but rather there are a list of criteria, okay,
and you have to fulfill two of three of these
criteria to earn I guess the diagnosis of PCOS. And
this list underscores some, though not all, of the possible

(11:26):
And I'm going to put this in quotes symptoms because
we're going to get into it, but some of the
possible symptoms of PCOS. And so I thought that that's
where we would start, is how we actually diagnose PCOS.
And then we'll talk about what we know about what
PCOS means in terms of the risks of various chronic diseases.
And then we can get as deep or stay as

(11:49):
shallow as you want in terms of what we know
about the nitty gritty path of physiology of what's causing this.

Speaker 2 (11:54):
How much do we actually know about the nitty gritty
of the path of physiology that's causing.

Speaker 4 (11:58):
This, Aaron, we know both a lot and so little.

Speaker 2 (12:02):
I mean, that's typical, Yeah it.

Speaker 4 (12:04):
Is, isn't it. And then we'll talk about how we
treat it.

Speaker 3 (12:07):
And my goal is to do this in twenty minutes,
so we'll see if that's gonna happen.

Speaker 4 (12:10):
I think, ah, it won't. It's quite a lofty goal.
I know.

Speaker 3 (12:15):
You should see all the words on a page. So
there has been fluctuation over the years over these diagnostic criteria,
but at this point there's pretty well established guidelines on
how we diagnose PCOS. So to make this diagnosis, you
need two out of three of the following criteria. One
is hyperandrogenism, and we'll talk about what that means. And

(12:35):
this can be either clinical so symptoms that you can
see on a person or biochemical, so looking at lab tests,
you have to have a ligomenorreea or a menorrhea so
few periods or not having any periods at all, and
polycystic ovarian morphology. So you need two out of three
of those. So let's talk about what those actually mean,

(12:57):
like what they would look like right right, English. So,
hyper androgenism means an elevated amount of androgens, which are
steroid hormones. We often think of testosterone, and testosterone is
one of the androgens, but there's a lot of others,
DHA andristino, dione, there's a whole bunch, okay, and so

(13:18):
you can determine whether a person has what is considered
hyper androgenism by measuring the levels of those hormones in
a person and comparing that to what we see in
typical females. And this is again we're talking about people
with ovaries here, and that is entirely the focus of

(13:39):
PCOS at this point.

Speaker 4 (13:41):
Asterix abound.

Speaker 2 (13:44):
Quick question. Okay, when you are let's say you are
being tested for these hormone levels, what does that test involve?

Speaker 3 (13:53):
Those are If you're testing for hormone levels, it's going
to be blood tests. What exact hormones people are going
to test for can vary depending on who is doing
that test. One of the important things is to make
sure that you're doing enough testing to rule out other
androgenic disorders. Because your adrenals produce androgens. There's other like
known disorders where we know, like, oh, you have a

(14:14):
deficiency in say this enzyme that produces a specific clinical
syndrome that's different than PCOS. Okay, and so you have
to do enough of the blood tests to make sure
that you're ruling out these other things. And then if
you see still an increase in androgens, and again this
is already where we can get some variation, because you
might have an increase, you might not have an increase.

(14:36):
But this is just one possible criteria, and you can
look at a number of different androgens.

Speaker 5 (14:40):
So that's one. I already have so many questions. I know, Okay,
so that like where it where? What is the source
of the excess androgens?

Speaker 3 (14:50):
You're jumping so far ahead? Okay, Okay, there, we'll get there.

Speaker 4 (14:54):
We'll get there.

Speaker 3 (14:56):
Ultimately, the main source of the extrass androgens is the
over but the question of why is yeah, okay, but
ultimately the ovaries are producing excess androgens.

Speaker 2 (15:09):
And I just I swear two more quick questions because
I'm trying to get a sense of what elevated means. Yeah,
so is this how how much do hormones fluctuate during
the day, during the range, during the year, et cetera.
And so then how much is excess? How is excess determined?
Or like how is greater than average determined? What's is

(15:29):
there a standard deviation? Like what's the vibe?

Speaker 4 (15:32):
This is a great question here.

Speaker 3 (15:33):
There's not like a number cut off necessarily, So every
lab that you do a lab test at is going
to have there. What is called like normal range or
typical range, and for hormones like testosterone or DHA or
estrogen or progesterone or any of those, they're going to
have a normal range for females and they're going to
have a normal range for males. And so if it

(15:54):
is higher than that normal range for females, then that
would be consideredhyperandrogenism. And that could be if you're looking
at free or total testosterone, or it could be one
of these other hormones. I don't have like exact numbers,
and you're right that it can vary day to day.
It can vary during the time of day as well,
So again this can get quite complicated. Okay, it doesn't

(16:17):
have to be bio It's okay, don't all. I love
your questions. It does not have to be biochemical evidence, though.
We also can see what's considered clinical evidence of hyper androgenism,
and that usually there's three main things that we think of.
Acne usually more severe acne, sometimes cystic acne but not necessarily,

(16:38):
androgenic alopecia aka scalpel like male pattern hair loss, and hersitism,
which I always have to look up how to pronounce
because I'm.

Speaker 2 (16:48):
Glad that you said that first, because I would have
gotten it wrong.

Speaker 3 (16:51):
Hersaitism, which is hair growth like coarse, thick hair growth
that specifically grows to longer than five millim so not
just tiny tiny little hairs in androgen dependent areas, So
that means places like the under arms, the pubic area,
the face. And this is a kind of tricky one
because there's a grading scale that in theory one should

(17:14):
use to determine how much would be considered excess or
like hersaitisms truly, and there's also going to be like
racial and ethnic variation in hair patterns to begin with,
but that is also one of the possible clinical criteria.
So that's all just hyperandrogenism. That's one thing that someone
might have to put them on this list of possible pcos.

(17:39):
The second is ovulatory dysfunction, which means people either aren't
ovulating at all and then therefore they're not having any menses,
or they're ovulating infrequently or irregularly, and so they're having
very infrequent or irregular menstrual cycles. Exactly how infrequent or
like how far apart they have to be or how

(17:59):
irregular depends in part on how far you are from
menarch or that first menstrual period, because it's quite typical
in the first few years to have irregular menstrual cycles. Okay,
but if you are more than three years after your
first menstrual cycle, than anything less than eight per year
or greater than thirty five days apart would be considered
a ligomin arehea or having few menstrual cycles. But that's again,

(18:24):
so that's that's one, so ovulatory dysfunction. And then the
third and final is polycystic ovarian morphology, which does not
really mean that you have a bunch of cysts on
your ovaries, but means that if you look on ultrasound
in the ovaries, you see a bunch of and by
a bunch, I mean twenty or more visible follicles that

(18:46):
are arrested in an early stage of development, so we're
born in with all, if you have ovaries, your ovaries
have as many eggs in there as they're going to have.
And typically, in response to these hormone cycles, every month,
one like multiple follicles start to mature, but then one
takes over matures completely and then is released during ovulation.

(19:10):
And what happens in PCOS is that multiple follicles start
to grow and then grow to a certain point, but
then are arrested in their development without ever having one
that takes over and is released, which is why you
have a lego or a menoreea because you're not ovulating.
And then it's also why you have so many of

(19:31):
these kind of follicles that are arrested at a stage
in development, that is, before they get to ovulation.

Speaker 2 (19:37):
Okay, So you've got a bunch of these like not
fully uh developed, developed follicle matured follicles just hanging out
at the ovary and causing like little grape clusters.

Speaker 4 (19:49):
Yeah, they look like little grape clusters. Okay.

Speaker 3 (19:51):
Sometimes on ultrasound you might not see specific follicles, but
you would have an overall larger volume, like greater than
ten millimeters volume without having one dominant follicle, because if
you have just one that's burst or ready for ovulation,
that you can get quite large large.

Speaker 4 (20:06):
Okay, Okay.

Speaker 3 (20:08):
Now, one thing that's new in the most recent guidelines
from twenty twenty three is that you don't necessarily have
to do an ultrasound to look for those polycystic ovaries.
You also could diagnose polycystic ovarian morphology by looking at AMH,
which is another hormone that you would check via a
blood test that we've talked about I think in our
infertility episodes or n menopause. Not sure, Yeah, I know

(20:30):
we mentioned it in menopause as well, But this is
a hormone that relates to like how many follicles are
still in existence in your ovary kind kind of a thing,
and having an elevated level of AMH is suggestive of PCOS.
But again here there's not like an exact cutoff value
yet for this, which is interesting in and of itself.

(20:52):
So that's how we diagnose it. You got to have
two out of those.

Speaker 2 (20:55):
Three, Okay, so either you have this hyperandrogenism infrequent or
no periods.

Speaker 5 (21:06):
And polycystic Yeah, psychology, Yeah, in the name, yeah, in
the name.

Speaker 4 (21:10):
I was like, what's the third?

Speaker 3 (21:12):
And so because there are these three different criteria and
you only need two out of three to have a diagnosis,
it leads to four different what are called phenotypes of PCOS.
So one of the options is that you have all three,
You meet all three of these criteria, and that would
be called phenotype A. The second option is that you

(21:32):
have evidence of hyper androgenism and evidence of ovulatory dysfunction
without having polycystic ovaries.

Speaker 4 (21:40):
We'll call them.

Speaker 3 (21:41):
Polycystic ovaries, they're not sis, and that would be phenotype B,
and those two together are called classic PCOS, and they
account for an estimated two thirds of people with PCOS.
So two thirds of people with PCOS will have evidence
of hyper androgenism either clinical or online tests, and they'll

(22:02):
have ovulatory dysfunction with or without having polycystic ovarian morphology
on ultrasound. The third phenotype phenotype C, someone will have
hyper androgenism and on ultrasound polycystic ovarian morphology, but without
necessarily having any issues in terms of their ovulation, so
not having aligomin area. And then phenotype D is ovulatory

(22:27):
dysfunction and polycystic ovarian morphology but no evidence of hyper androgenism.

Speaker 5 (22:33):
All right, Okay, Okay, why it's a great question.

Speaker 3 (22:38):
Okay, So just looking at all of those that there's
a there's a y question, and then there's a huge
part that's missing already, okay in these diagnostic criteria, because
those criteria give us a lot of insight into some
of the symptoms as well as some of the consequences
of PCOS. Right, So, an ovulation, which can happen very

(23:00):
commonly in PCOS, can result in infertility or reduced fertility,
and PCOS is the major cause is estimated to be
like the number one cause of an ovulatory infertility. So
if you're not ovulating and you can't get pregnant when
you want to be pregnant, PCOS is the number one
cause of that. In addition, this an ovulation also leads

(23:22):
to an increased risk of endometrial cancer down the line.
And that's because your uterus, because of the hormones that
are floating around, is out here like getting ready to
have an egg implant. It's getting ready, it's getting ready,
it's getting ready. That egg never comes. You never menstrate.
Your uterus lining is proliferating this whole time, and that

(23:46):
proliferation increases the risk of cancer in this continually proliferating tissue. Okay,
the hyperandrogenism that we see in PCOS that we can
see may or may not be associated with symptoms that
are undesirable, right, It depends on someone's perception of what
those symptoms are. Male pattern hair growth or hair loss

(24:07):
may or may not be something that is distressing to
someone acne. Most people are not a fan of acne.

Speaker 4 (24:15):
But this, all of.

Speaker 3 (24:18):
These definitions are missing one of the huge, very clear,
well defined major factors of PCOS, and that is its
relationship to insulin resistance. Yeah, so insulin resistance leads to
glucose intolerance, and that puts people at risk for type

(24:41):
two diabetes as well as a whole bunch of other
metabolic complications hyperlipidemia. So having elevated cholesterol levels, that puts
you at risk for cardiovascular disease, It puts you at
risk for hypertension, and so much more. And PCOS also
gets quite a lot of attention as it relates to obesity,
which I always put in quotes because obesity is it's

(25:06):
considered a disease in medicine that is defined entirely based
on BMI, and BMI is not an indicator of health. Right,
Elevated BMI is associated with PCOS, but whether this is
cause or consequence is very much still up for debate.

Speaker 2 (25:23):
Which I feel like is a lot of some of
the symptoms associated or that are prevalent with PCOS. So consequence, yeah.

Speaker 3 (25:32):
Yeah, but all of these and here's what's really important
about that is that all these other symptoms, and there
are a lot so like increased risk of insulin resistance,
risk for type two diabetes, risk for hyperlipidemia. Even people
who have PCOS are also at an increased risk for
obstructive sleep apnea.

Speaker 4 (25:50):
We don't know the.

Speaker 3 (25:51):
Mechanism there, but all of those risks increase regardless of BMI.
They exist regardless of BMI. We know that, or we think,
at least from the data that we have so far,
which is mostly in mouse models, that PCOS might be
related to changes in adipose tissue, like the way that
your adipose tissue responds to insulin or things like that,

(26:15):
and have how it like uptakes glucose and things like that.
But all of the other complications and metabolic complications in
PCOS are prevalent regardless of BMI, and in like BMI
matched case control studies, they are elevated in PCOS regardless

(26:36):
of BMI, just like in people without pcos in some cases,
and elevated BMI can also put you at higher risk
for some of these other metabolic complications. So again, what
is the cause and what is the consequence?

Speaker 4 (26:48):
We don't know.

Speaker 3 (26:50):
What we do know, and what is prevalent enough that
it has made it into the twenty twenty three guidelines.
Is the very real problem of fat shaming that happens
in PCO and weight stigma, like enough so that the
awareness of this fat shaming and stigma is in the
PCOS guidelines of Like you need to be aware of
this if you're a clinician and not do it. Yeah,

(27:15):
but like you said, we do not know exactly how
this metabolic dysfunction happens at the beginning, Like what are
the core causes of it?

Speaker 2 (27:29):
And how does how do other hormones play into this? Oh,
my gosh, Aaron, what's what's what's the timeline? The sequence?
The cascade is a by.

Speaker 3 (27:42):
Step If I could tell you a step by step cascade,
I would have a lot more clarity as to what
the heck is going on. But I can give you
some more detail, Okay, to kind of understand a lot
of what's going on in PCOS. We can first understand
what's called our HPO axis. This is our hypothalamic pituitary
ovarian axis or gonadal access because you have one if

(28:04):
you have testies too, so in your hypothalamus you are
releasing hormones there's a part in your brain you're releasing hormones.
The one that is important in PCOS is called gnatotropin
releasing hormone, and it is.

Speaker 4 (28:21):
Being pulsed out. It is normal.

Speaker 3 (28:23):
It is typical in our brains that it's not being
released all the time, but we pulse it out in phases.
Your brain is like, yep, give a little bit, Yep,
give a little bit. Its job is to travel to
our petuitary and tell our petuitary, which is another part
of our brain, to secrete other hormones lutinizing hormone LH
and follical stimulating hormone FSH. We've talked about these in

(28:44):
our infertility our pregnancy episodes. These two hormones job is
to travel through our bloodstream, go to our ovaries and
modulate the production of estrogen and progesterone and make our
ovaries mature one follicle release it and ovulate. Right, this
whole system, our HPO axis works on a system of

(29:08):
both positive and negative feedback loops. Right, So one part
of our brain tells another part of our brain tells
our ovaries, and those hormones go back to our brain
and they're like, hey, we're here, so calm down.

Speaker 4 (29:19):
Right, yeah, yeah, yeah.

Speaker 3 (29:21):
In PCOS, there is a wrench in this system. What
exactly the first wrench is we don't know. So we
know that the pulsatility of this gnatotropin releasing hormone GnRH
in PCOS is increased, so we see more and more

(29:42):
frequent pulsatility of GnRH from our hypothalamus. What that does
is it tells our pituitary ooh, keep going, keep going,
keep going, and actually leads to a disruption in the
LH versus FSH ratios.

Speaker 4 (29:56):
Oh.

Speaker 2 (29:57):
And so instead of like it being okay, now ovulate,
it's like, oh maybe maybe maybe maybe it's just like
less of a strong message.

Speaker 3 (30:05):
Yeah, And the message is like mature, mature, mature, mature, mature, mature,
A bunch of follicles, bunch of follicals. But no, there's
no ovulation, there's no release, there's no release signal. Right,
And that because that LAH is then going to our
ovaries and it's being like make make make androgens, make androgens,
make adrogens, then there's also something else going on because
that hyper agigen secretion should negative feedback onto our hypothalamus

(30:30):
and be like hey stop, but that negative feedback is impaired.

Speaker 4 (30:35):
We don't exactly know why. Hmmm.

Speaker 3 (30:39):
Then okay, here's where it gets even more complicated erin Okay, okay,
where does insulin resistance play into this?

Speaker 4 (30:45):
That's what I'm trying to figure out.

Speaker 3 (30:47):
We know, yeah, that insulin resistance tissue level. Insulin resistance
leads to an increase in insulin production, right, because if
your body is trying to red glucose, insulin is in
charge of that. And if your tissues aren't responding to insulin,

(31:07):
insulin is binding through the receptors it's supposed to, but
it's not doing its job, so you can't collect that glucose.
Then your body's going to make more insulin because it's like, hey,
there's too much glucose floating around. We need more insulin,
more insulin, more insulin. That hyper insulinemia feeds back onto
the ovaries and tells them, by a reason I don't understand,

(31:27):
to make more androgens.

Speaker 2 (31:31):
Okay, I mean, okay, but no, I don't understand exactly.

Speaker 4 (31:36):
No, we don't know why.

Speaker 3 (31:38):
So in short, we know that all of these feedback
loops are sort of not working the way that they
would directly.

Speaker 2 (31:45):
In some way.

Speaker 4 (31:46):
Yeah, there's more.

Speaker 3 (31:48):
And more evidence because we used to think like, oh,
it's just the ovaries, and there's some evidence in like
mice and rats that like disruption at the level of
the ovary, just like a tendency to excess androgen secretion
to begin with, can produce things like polycystic ovarian morphology. Okay,
but it again doesn't account for the lack of this
negative feedback loop. It doesn't necessarily account for this insulin

(32:10):
resistance piece of it. So there's more evidence that these
other groups of hormones that act more in our brains
called kiss peptins and other like other types of hormones
as well are likely involved. So I guess the point
of all of this is to say, a number one
it's complicated.

Speaker 4 (32:28):
Yeah, and b number one.

Speaker 5 (32:31):
While we know a lot number two or be number
one whatever, A number one, it's complicated, be number two.

Speaker 3 (32:42):
We know a lot about the features of these disruptions
increase GnRH pulsatility, increased androgens, insulin resistance leading to more
increased androgens. We also see like a decrease insects hormone
binding globulin because of these androgens. So like there's all
these feed back loops that are very well documented and
drawn in all these papers, But we do not know

(33:05):
what the first underlying issue really is, right, which means
that all of our treatments that we have are addressing
individual parts of the issue but not coming close to
like curing anything or really getting to like one drug
or one mechanism fixing this cascade. So do we think

(33:29):
that it is one mechanism? That is an excellent question.
Arin no idea, Okay, especially because when you think of
all of these different phenotypes, right, I said that there
are four different phenotypes. They also are associated with like
differential risk in things like insulin resistance. Okay, So types

(33:49):
A and B that like classic PCOS picture, something like
eighty percent of people with this phenotype will have evidence
of insulin resistance and therefore might be at high risk
of things like diabetes. Phenotypes C we see still a
significantly increased insulin resistance, but like sixty percent compared to
eighty percent. And in phenotype D, which is the one

(34:11):
where people have no clinical hyperandrogenism, about forty percent of
them we see insulin resistance. But in all of these
the incidence of type two diabetes and is like four
times higher in people with PCOS compared to people without
PCOS regardless of BMI. Huh, though that incidence does increase
with increasing BMI.

Speaker 4 (34:32):
Okay.

Speaker 2 (34:33):
And so basically, the the outcome of this like domino
like the path that the dominoes take. It might be different,
just but we don't know why it might be different.
But that's what results in these different phenotypes. But the
end result for the most part is similar in terms

(34:55):
of health consequences.

Speaker 3 (34:57):
I mean it is similar. It is not exact actually
the same. It is similar, and then it's also like
not exactly the same in terms of even those initial dominoes, right,
because in some people we see this hyperandrogenism and in
some we don't, but we still call it PCOS. Is
that really the same disease or not? Is?

Speaker 4 (35:17):
Yeah? Is it?

Speaker 3 (35:18):
We don't know right now, We really don't know. We
don't because we also don't know like what actually causes
pcos R. Right. It's very strongly genetic. There is a
big heritability component. It's like seventy percent heritable. Yeah, And
that's not necessarily all strictly genetic. There's like at least

(35:38):
twenty different gene losi in different populations. There's not one
single gene, but there's also evidence of like epigenetic changes
that we don't really know what is the trigger for
these changes. But there's likely some epigenetic things that are
involved in the like increased risk of PCOS, and then
there's likely other environmental factors at play that we don't
really understand. Right, what are all of these other triggers?

Speaker 2 (36:01):
I'm going to say it here because I didn't put
any of this in my notes, but I didn't want
to get into the evolutionary There are like a lot
of different papers I read about the evolutionary origins of
PCOS as proposed by certain researchers, and it is And
I was like, ultimately, we don't understand what PCOS is,

(36:22):
and so how can we really talk about what, like,
how can we test these hypotheses if we don't know
what it's caused by? And yeah, so that I didn't
I don't have anything about that.

Speaker 4 (36:36):
I mean, yeah, because we don't.

Speaker 3 (36:38):
I feel like we don't even have a good We
have a clinical definition, right, we can diagnostical definition, But
are all are all of these phenotypes? Are all pcos
the same?

Speaker 4 (36:46):
I don't know.

Speaker 3 (36:47):
We don't know, we don't know in terms of what
we do about it and how we treat it. It
really depends on what we're worried about, what the symptoms
are that a patient or a person is worried about.
Because because a lot of these symptoms of pcos are
related to these androgenic hormones and related to this HPO axis,

(37:08):
a lot of times we rely on birth control as
one of the first line treatments for pcos, especially combination
birth control like estrogen containing birth control, because what that
does is it helps kind of override a lot of
this HPO axis. It's going to negate any of these
ovulatory dysfunctions, it's going to decrease your risk of undermetrial cancer.
And the estrogen effect especially can help to alleviate a

(37:34):
lot of the symptoms of excess androgens if those symptoms
are unwanted, like acne and hersitism, because the estrogen what
it does is it helps to address this decrease in
sex hormone binding globulin, which then helps to decrease the
amount of free testosterone that's circulating. Sometimes, though we might
use anti androgen specific medications like sperona, lactone or other

(37:58):
medicines if we're targeting some of those hyper andthrogen symptoms
as a concern, but none of those are going to
address the metabolic effects. Right, birth control is not going
to change insulin resistance if that's present. By the way,
we don't have a test for insulin resistance. There's no test.

Speaker 4 (38:16):
We don't have a test. We don't have a way
to test for insulin resistance. Huh.

Speaker 3 (38:21):
We can test for risk of diabetes. But diabetes is
not just insulin resistance. It's and it's we see our
diabetes episodes. There's other ways that you can get diabetes
besides just insulin resistance. But insulin resistance can lead to
diabetes if you then have impaired glucose tolerance. But insulin

(38:41):
resistance is like a first step if that's the pathway,
and we can only see it if it's come to
the point of, Okay, you have an increase in your
A one C or you have an increase in your
fasting glucose. But that's not directly a marker for insulin
resistance itself, and we don't have a test for that.

Speaker 4 (39:01):
That's easy to do. I just I know that we did.

Speaker 2 (39:06):
Nope, we don't which explains why it's not part of
the clinical picture exactly because you can't test for it.

Speaker 3 (39:12):
Can't test for it, right, you cannot test for it.
So but if there is evidence, especially of like glucose intolerance, right,
like increased ae C or something like that, then you
can address that with met Foreman is usually the first line,
and that's a drug that we use for diabetes. It
helps to increase insulin sensitivity in our tissues. It sometimes

(39:33):
can also cause weight loss, which may or may not
be desired, depending on the situation. What's very very interesting
about met Foreman is that it also has data that
it helps to regulate ovulation and what exactly is the
mechanism there, Like does that give us any insight.

Speaker 4 (39:50):
Into what is going on here?

Speaker 3 (39:52):
I don't know that it does, but I just still
think it's so interesting.

Speaker 4 (39:55):
Right is there? Does that is that?

Speaker 2 (39:57):
Does that help shine a light on the link between
I think process.

Speaker 3 (40:00):
It helps chin to light on there because when you
look at these grap we should post one of these
like graphs of what these feedback loops look like and
how they're disrupted in pcos. There is a strong link
between insulin resistance and hyperinsulinemia and and grogen production in
the ovaries. So we know that that's like an inward arrow.

Speaker 4 (40:21):
There's just no.

Speaker 3 (40:22):
Backward arrow that that goes. Like, then why does the
insulin resistance come up in the first place? That gods yees, yeah, yeah,
Like is insulin resistance actually the primary mechanism? I don't know,
But then why do we see Anyways, it's much but
for people who maybe want to get pregnant on our
struggle with infertility, sometimes met Forman can then be used

(40:44):
to help alleviate the anovulation. It is not first line
if the goal is pregnancy, though usually first line what
we use as a medicine called letrozol or another similar
medicine that triggers ovulation that's more directly triggering ovulate. But
met Foreman can and it has good data that it
can normalize ovulation to a regular degree, which can help

(41:09):
with infertility if that's a goal. And then there's also
an interest, of course in using newer medicines like glp
ones which are the ozembics of the world, or other
combination medicines. But we'll get there later in this episode.

Speaker 2 (41:25):
Arin quick question, give it to me menopause.

Speaker 3 (41:31):
Ah, yes, yeah, what's the question?

Speaker 2 (41:37):
Well, the question is, like I guess, the question is
a very vague, unformed question. But just like for people
who have PCOS, is their menopause experience any different?

Speaker 4 (41:50):
This is such a great question.

Speaker 2 (41:51):
No idea, Okay, no, no one has examined it.

Speaker 3 (41:56):
All of these papers are like, hey, yeah, so a
lot of what we know about PCOS we think of
as a reproductive disorder, and so its primary effects are
in the reproductive years. So we don't have a lot
of data on postmenopausal PCOS. Is the insulin resistance still
a thing? Are you at higher risk for cardiovascular disease
and type two diabetes postmenopausal compared to someone who has

(42:18):
Like does your PCOS still exist postmenopause?

Speaker 2 (42:21):
Right, That's what I was trying to That's what I
was trying to ask, and the great question, I guess.
The other question then is Okay, So, and this maybe
kind of gets into what I'm going to talk about
a little bit, But like, you get a diagnosis of PCOS,
you are not interested in becoming pregnant. You maybe are

(42:42):
not interested in addressing any of the other symptoms of PCOS.
Is there anything in your medical care. That is, like,
we should have increased screening for cardiovascular disease. We had
to have this in that.

Speaker 4 (42:57):
Is that something that physicians do do? Does anyone do it?
Is the question I can't answer.

Speaker 3 (43:05):
That is the guidelines though that those are the guidelines,
especially from the twenty twenty three update. You should be
screened for potentially for sleep apnea, which not everyone is
necessarily needs to be screened for sleep apnea, but if
you have PCOS, you probably should at least be screened
with like some of the questionnaires. You should be screened
for diabetes, so checking in A and C. You should
be screened for hyperlipidemia, even if you don't want to

(43:29):
address any of the symptoms of hyperandrogenism. And it does
not matter to you whether like you don't want to
get pregnant, and so does it matter to you if
you're not ovulating on a regular schedule. You do need
to think about endometrial protection. You have to do something
to reduce that risk of endometrial cancer. So that is
something that you have to think about. And yeah, those
are I mean, those are the main things. There's there's

(43:50):
probably more than that. I'm forgetting off the top of
my head. Also, depression and anxiety are higher in people
with PCOS. Why we don't know is that just because
of how people are treated with PCOS by the medical system,
how long it can take to get a diagnosis, how
much they're like ignored by the medical system.

Speaker 4 (44:09):
We don't know.

Speaker 3 (44:10):
Is it just because it does it actually have anything
to do with PCOS and the like pathology there, or
is it all.

Speaker 4 (44:16):
Just our medical system? We don't know.

Speaker 3 (44:17):
Yeah, but it's an important thing to keep in mind
as well as Yes, society exactly, Aaron, that was only
twice as long as I intepreated?

Speaker 4 (44:30):
So tell me how did we get to hear? What
do we know?

Speaker 5 (44:35):
You know, those are some great questions. Let's let's get
into it, Okay. For all that we still don't know

(44:59):
about the biology of PCOS, this condition can teach us
so much when it comes to the power of societal expectations,
the inadequacy of a name, our failure to provide care
to all who need it, and how silence, stigma, and

(45:20):
shame can profoundly.

Speaker 2 (45:22):
Deepen the impact of a medical condition. At least it
can teach us those things if we are willing to listen.

Speaker 4 (45:30):
Yeah, can we learn those things?

Speaker 2 (45:31):
Can we learn those things? Prevalence estimates of pcos vary.
The most common numbers I've seen are six to twenty
percent of people assigned female at birth. Others say, you know,
one in ten, a huge, huge prevalence, and yet PCOS
receives less funding for research compared to other similarly prevalent conditions.

(45:54):
There is less awareness, both in the medical community as
well as within the general public, and we still lag
behind in terms of treatment options and medical knowledge about pcos. Clearly,
not enough of us are listening. Hopefully that will change
thanks to the incredible advocacy work by some groups and individuals,

(46:17):
and thanks to the Internet, which I never thought i'd say,
but truly thanks to the Internet where people with PCOS
can find the support and community that is so often
lacking in their everyday lives or in interactions with their
healthcare provider. Before I go any further, I want to
shout out one advocate in particular, and that is doctor

(46:37):
Stacey L. Williams, a social health psychologist at East Tennessee
State University and author of an incredible book that I
read for this episode titled The Psychology of PCOS. Building
the science and breaking the silence as someone who does
not have PCOS but thought they knew a thing or

(46:58):
two about it, which it turned out to be true
in the literal sense. I found this book to be
incredibly eye opening and perspective shifting truly, and almost everything
that I'm going to talk about when it comes to
PCOS today and some of the issues that we see
comes from this wonderful book. But before we get into
today in the today's landscape, let's go back in time

(47:21):
to get a sense of the lengthy history of this condition.
So PCOS is likely an ancient disease in humans, and
it's probably not limited to our species. One of the
challenges with understanding the root causes of PCOS is not
having a naturally occurring animal model. But I did come
across a paper that described Reese's monkeys that had naturally

(47:43):
occurring high levels of testosterone and seem to exhibit some
of the clinical picture of PCOS. It's still like, it's.

Speaker 4 (47:51):
Not clear, you know. Yeah.

Speaker 2 (47:54):
The first likely descriptions of the condition in humans come
from ancient Greece in hippocrates Diseases of Women text written
in the fourth century BCE.

Speaker 4 (48:04):
Oh gosh, can't wait for this quote.

Speaker 2 (48:07):
But those women whose menstruation is less than three days
or is meager are robust, with a healthy complexion and
a masculine appearance. Yet they are not concerned about bearing children,
nor do they become pregnant.

Speaker 4 (48:20):
End quote. Okay, yep.

Speaker 2 (48:23):
Other ancient texts mention hersatism or hersaitism in combination with
changes in mensis as a condition, and another Greek physician,
Soreness of Ephesus, wrote around the second century CE quote
sometimes it is also natural not to menstruate at all.
It is natural too in persons whose bodies are of
a masculine type. We observe that the majority of those

(48:46):
not menstruating are rather robust, like mannish and sterile women.

Speaker 4 (48:51):
Quote.

Speaker 2 (48:53):
I know language is not great, ary, yeah, but what
these descriptions show is that pcos was likely an ancient
disorder and common enough that it was mentioned in several
old medical texts, and that it has always been described
as violating expectations of femininity. The next description that historians

(49:16):
point out comes from seventeen twenty one, when an Italian
physician Vallisneri described a married, quote unquote infertile woman who
died young at twenty one years and upon autopsy was
found to have shiny ovaries with a white surface, and
the size of ovaries as pigeon eggs or ovaries the
size of pigeon eggs.

Speaker 4 (49:35):
Okay, I have no idea, like how big a pigeon
egg is. I'm not sure either. I should have imagined
they're small, though, like pigeons aren't very big birds. Yeah, Okay, I.

Speaker 2 (49:46):
Don't know all right. Additional mentions of what was likely
pcos popped up throughout the eighteenth and nineteenth centuries, including
from Rokotanski, the famous pathologist I mentioned before on the
podcast who did like tens of thousands of autopsies, and
this period, especially in like the late nineteenth century early
twentieth century, was crucial time for building a foundation of

(50:09):
knowledge for understanding the role of different hormones in our
physiology and what could happen when things do not go
as expected. This was also when the testosterone equals male
estrogen equals female false dichotomy was established.

Speaker 4 (50:25):
Oh love that? Yeah?

Speaker 2 (50:28):
Still on learning that.

Speaker 4 (50:29):
I think? Yeah.

Speaker 2 (50:30):
And so while that piece of the puzzle, like the
hormone piece of the puzzle, wouldn't get slotted into pcos
until the nineteen sixties, when researchers demonstrated the ovaries role
in producing androgens. A complete clinical picture of the condition
was formed by nineteen thirty five. Wow less complete.

Speaker 4 (50:47):
Yeah.

Speaker 2 (50:48):
That year, two physicians Irving Freilerstein and Michael Leo Leventhal
published a paper titled AIM and Area associated with bilateral
polycystic Ovaries.

Speaker 4 (50:58):
Okay, there you.

Speaker 2 (50:59):
Go, and in it they described the case reports that
they had collected over the previous few years while investigating
factors underlying difficulty getting pregnant. They followed these patients for
long periods of time and truly got to know them,
got to know their histories, got to know just everything
about them. It was sort of this like, you know what,
let's just cast a wide net and see what comes out.

(51:22):
And by doing this, which is not a very common
thing done today, they were able to draw out patterns
that otherwise might have been missed. A subset of their
patients had started menstruating years before, but their periods since
had been unpredictable or just lacking entirely. They tended to
have more hair growth than average and enlarged cystic ovaries,

(51:45):
often larger than the uterus even at least a few,
and they performed surgeries on a few of their patients
to remove the cysts and part of the ovaries, both
for diagnostic as well as therapeutic purposes, and a couple
of people actually delivered children after the surgery. So what
was different about Stein and Levenhal's clinical picture, like, why

(52:06):
is this the one that put pcos on the medical map?

Speaker 4 (52:09):
So to speak?

Speaker 2 (52:11):
They were the first to describe the triad of polycystic
ovarian morphology, hersitism, and infrequent irregular periods. And of course
this is not a perfect clinical picture, which over the
decades has evolved to account for more diverse symptoms and
still maybe as one could describe it as incomplete lacking yes,

(52:36):
and their focus on ovarian cysts, ultimately leading to the
name polycystic ovary syndrome was misleading since cysts are not
always present.

Speaker 3 (52:44):
Yeah, or like yeah, it's not quite accurate. Yeah, you
could say, I mean, if you assist just a fluid
filled thing, then sure, sure we'll call it. Sure, Yeah,
that be presnent. Yeah, doesn't have to be present exactly.
But what they did was provide a starting point and
drive interest in this condition and in the decades since,

(53:06):
researchers have added detail and depth to what we know
about PCOS, from diagnosis to possible treatments, but not nearly enough.
To quote doctor Stacy Williams, who's the author of the
Psychology of PCOS, quote, it is unfathomable that in the
twenty first century we are still grappling with diagnosis and

(53:27):
treatment for PCOS. After more than eighty five years since
PCOS was formally identified, doctors still lack knowledge of the syndrome.
Combine that reality with a continued lack of cultural sensitivity
of providers towards their patients, and we have a recipe
for continued delays in diagnosis, biased interactions, and increased risk

(53:51):
of worse health outcomes.

Speaker 4 (53:53):
End quote.

Speaker 2 (53:54):
Yeah, the resulting cost of this is huge on the
economic side, eight billion dollars annually in the US alone,
that was estimated in twenty twenty two. That's a split PCOS,
and that's split about equally between reproductive issues and metabolic
vascular issues, and is likely an underestimate. Aaron, you took

(54:19):
us through some of the physical costs associated with PCOS,
some of which can be substantial, but the psychological costs
of this condition can be immeasurable and mostly go unacknowledged,
at least in the medical literature. PCOS, like many chronic conditions,
reveals a divide between how society expects you to act, look,

(54:46):
and feel and how you actually act, look and feel.
The price for not meeting those expectations can be steep,
whether it results from medical gaslighting, bullying, or internalized stigma.
People with PCOS are at a higher risk of depression
and anxiety. Like you said, and it's difficult to disentangle

(55:06):
whether these mental health impacts are a direct or indirect
consequence of PCOS. Is it hormone dysregulation, is it the
medications someone has prescribed? Is it the stigma you face
with PCOS? Is it not just one thing but many.
We don't have a good answer, but if we want
to find one, what we need is more information, not
just about the biological underpinnings of pcos, but especially the

(55:30):
lived experiences. What is it like to live with a
condition whose symptoms mark you visibly or invisibly as not
conforming to societal norms or medical expectations. How does our
society or our medical establishment treat someone with PCOS? And
how is that wrapped up in ingrained notions of gender

(55:53):
and sexuality. Let's get into it, okay, and I'm roughly
breaking it down between outside of clinic and inside clinic.

Speaker 4 (56:03):
Okay.

Speaker 2 (56:04):
As you described, Aaron PCOS is associated with a broad
array of signs and symptoms, some of which are visible,
like you know what is called male pattern body hair
or baldness, weight gain, others which aren't visible, such as
irregular periods, difficulty getting pregnant, but many of which challenge

(56:25):
gender norms. Our society has hammered into us that women
should not be hairy, that in fact, any body hair
or facial hair is shameful and disgusting, and we should
take steps to conceal.

Speaker 4 (56:37):
It and avoid it. La away.

Speaker 2 (56:39):
I mean, bearded ladies were a staple of circuses for
goodness sake. Our society equates fatness with a moral failing,
believing that it demonstrates a lack of self control, and
women especially should be delicate, slender angels. Our society tells
us we become women when we get our first period,

(56:59):
and that are flee bleeding is a powerful reminder of
our womanhood. Oh God, sorry, nauseous. Our society assumes that
every woman will want to give birth. Our society expects
that every person assigned female at birth should look a
certain way, act a certain way, and want certain things,

(57:20):
and PCOS can throw a wrench into society's expectations sometimes
because we are raised in the society and these expectations
are deeply ingrained in us. This can lead to intense
feelings of stigma that come from within if you don't
menstrate regularly, and menstruation, though itself is stigmatized, is associated

(57:43):
with womanhood. Does that mean that you are less of
a woman? Of course not, but that is a difficult
thing to unlearn. The author of the Psychology of PCOS
interviewed fifty people with the condition for the book and
included snippets of the interviews, which which we're so insightful, Like,
I loved that approach so much. I think it's so important,

(58:04):
and I want to share a few throughout the rest
of this So Joe late twenties gender queer non binary
described being bullied for having male pattern facial hair when
they were younger and said that they quote spent a
lot of time trying to get rid of my body hair,
to the extent that nobody would even be able to
know I even had it. So I feel that it's

(58:26):
a cultural mandate for people who are trying to pass
as women that you can't have even stubble in places
that you're not supposed to have hair, which is pretty
much everywhere except your head. It's a lot of time
and a lot of paranoia to try and maintain that
appearance if that's not what your body is actually doing.
And that was a big source of feeling invalidated as
a woman for a long time. End quote And like, Okay,

(58:50):
I don't have PCOS as far as I know, but
I do have a lot of body hair, thanks genetics,
And it has been and continues to be a source
of shame and like embarrassment and anxiety in my life.
And it was just like it.

Speaker 4 (59:07):
Still to this day. Oh anyway, yes, no, it's very real.

Speaker 2 (59:11):
It's very real. And then there's another first hand account
or another like snippet I want to share from Kim
mid thirties cis gender, who said, quote before I was
diagnosed with PCOS, I really just felt like my body
was broken, and I think I had a lot of
shame around not understanding why I was having trouble with

(59:31):
periods and what this pain was that other people in
my life, who menstraight don't have. So what was going
on for me? Why was I weird? And I think
that shame made me feel isolated because I couldn't talk
about it or I didn't know I could talk about it.

Speaker 4 (59:46):
End quote.

Speaker 2 (59:48):
Stigma can also arise from other people. One person interviewed
in the book describes getting facial hair shavers for Christmas
from their mom. Oh yeah, I mean I bullied all
throughout middle school and high school for body hair.

Speaker 4 (01:00:05):
Yeah. Why, Oh my gosh, why body hair?

Speaker 2 (01:00:09):
Like I mean that we could do a whole episode
on that, but I think we should, Maybe we should.
I think part of it too, is like Razor companies
were like, oh, we're missing half the population.

Speaker 4 (01:00:19):
Yeah, yeah, you're disgusting. You're disgusting.

Speaker 2 (01:00:21):
Your hair is disgusting, it's unhealthy, it's unhygienic.

Speaker 4 (01:00:25):
Yeah, it makes me so upset.

Speaker 2 (01:00:28):
And then Meg early twenties cis gender, talks about a
college field trip for her geography major involving canoeing.

Speaker 4 (01:00:35):
Quote.

Speaker 2 (01:00:35):
The professor was concerned about my ability to canoe because
I'm overweight, Therefore I might not have enough stamina even
though I've been kayaking all my life and I'm very
good at canoeing and kayaking. Quote yeah, I mean that's
Another person interviewed described how her parents don't really quote

(01:00:57):
unquote believe in PCOS and that the weight is completely
a matter of self control.

Speaker 4 (01:01:04):
The amount of fat shaming.

Speaker 2 (01:01:06):
It's it's ridiculous, yea, it's overwhelming. Yeah, yeah, yeah, yeah,
there is. There is nothing inherently shameful about any part
of PCOS. But because we are exposed to societal expectations
from the minute we are born, and multiple symptoms of

(01:01:29):
PCOS do not align with those expectations, stigma remains a
huge issue, whether that comes from within or from without. Yeah,
but not everyone experiences PCOS in the same way. So,
for instance, some cisgender women may feel self conscious about
their facial hair. Others may be done performing femininity by
removing that hair, and they're like, no, I'm growing it

(01:01:52):
out right, I don't care, it doesn't bother me. And
other people that don't identify as women may welcome that
facial hair, feeling that it more closely aligns with their
gender identity. Along those lines, infrequent or unpredictable periods might
be a painful reminder to cisgender women who are trying
to become pregnant, or a source of anxiety for those

(01:02:12):
who do not want to be pregnant, while absent periods
might be the desired outcome for people who find them
distressing since they do not align with their gender, and
then there's everything in between. People can feel a million
different ways about these different symptoms. Kendall late twenties non
binary describes the mixed feelings that can arise quote, but

(01:02:35):
the gender dysphoria. I feel like PCOS actually helps a
little bit, but it also kind of makes it worse
because I'm having all these problems that revolve around my
female anatomy. So it's kind of like a push and
pull of two differing emotions. And before I felt as
though I was ready to identify as transgender, it definitely
made me feel terrible about my body, very much like

(01:02:56):
I was unlikable, unattractive to other people. But now I
feel the oposit I feel like it makes me more
attractive because I'm transgender now and I present masculinely, but
at the same time, the health aspects and if I
don't watch myself, I could gain weight. Then I will
feel even worse about myself end quote. Yeah. There hasn't

(01:03:17):
been very much research on gender identity and PCOS, but
one study looking at the experience of transgender men with
PCOS found less gender dysphoria and less negative body image
in those with PCOS compared to those without interesting there
is no hard and fast rule for how someone will
experience PCOS. Maybe there's shame or stigma. Maybe there's confidence

(01:03:38):
and power, Maybe there's discomfort or sadness. Maybe there's empathy
and understanding, and maybe there's everything all at once or
at different stages of your life. Each experience is unique
and influenced by a person's inner and outer world. Do
they have someone or a community of someone's that supports,

(01:03:59):
understands and listen to them. Part of what perpetuates stigma
in PCOS is a lack of awareness surrounding this condition.
People don't know what it is, and since it affects
those assigned female at birth, there's a tendency to assume
that it's a gynecological disorder. And while we don't talk
about anything down there, down there no limits, that's not

(01:04:21):
the light company. Yeah, and this unwillingness to engage with
PCOS because it's seen as a quote unquote women's disease,
shrouds it in silence, leading to less understanding and less
interest in both the general public as well as the
medical community. Just as society has its expectations of what

(01:04:42):
a woman should be, medicine has their own notion of
what PCOS looks like and how it should be managed. Yeah,
they do, and often this leads to a much narrower
view of this condition that excludes people who might not
fit the you know, quote unquote typical clinical picture.

Speaker 4 (01:04:59):
R which is phenotype A and B or classic PCOS yep, yep.

Speaker 2 (01:05:04):
And this results in delays and diagnosis and inappropriate treatment.
Because of its impact on fertility, PCOS is often seen
primarily as a condition of heterosexual women who are struggling
to become pregnant, and treatment is prescribed accordingly.

Speaker 4 (01:05:20):
Yep.

Speaker 2 (01:05:22):
This erases the experience of so many people who do
not fit that description. M hm, oh, you've got irregular periods.
Let's get you on some birth control so you'll bleed monthly,
which doesn't take into consideration that someone might not want
to have periods at all.

Speaker 3 (01:05:38):
Yeah, maybe sorry, Just like this is my personal opinion, like,
why would we want to have periods?

Speaker 4 (01:05:44):
Why? Why?

Speaker 3 (01:05:45):
Right?

Speaker 4 (01:05:45):
Some people do? People do? People definitely don't. Uh huh. Absolutely,
people feel different ways about this. There's no one way.

Speaker 5 (01:05:53):
Yeah, or maybe your doctor says it's you know that
facial hair, it's from your hormone imbalance.

Speaker 2 (01:06:01):
You're a good candidate for electrolysis. Let's set up an
appointment for you. Again, pointing out ways that you don't
conform to gender expectations and pressuring you into performing femininity
and making you feel othered and rejected, whether or not
it's well intentioned. And then there's you really need to
try harder to lose weight. It's not healthy. Are you

(01:06:21):
exercising at all? You should eat less processed foods.

Speaker 4 (01:06:24):
You're doing it to yourself.

Speaker 2 (01:06:26):
You're doing it to yourself. Assuming that someone's weight is
solely due to poor diet or poor health behaviors not
related to PCOS, and that's someone's weight is entirely responsible
for all their symptoms. Oh, you have pain, you should
try to lose some weight.

Speaker 3 (01:06:40):
Also, assuming that their weight is the problem at all. Yes, yeah,
but assuming that their weight, that their BMI is a problem,
because obesity is a quote unquote disease like oh, it drives.

Speaker 2 (01:06:53):
Me, and this weight bias in medicine can lead to
disordered eating, or maybe the doctor will say something like, okay,
you're sure you don't want to become pregnant, Well, then
there's not really anything you need to worry about.

Speaker 4 (01:07:09):
Oh gosh, that one gives me palpitations.

Speaker 2 (01:07:11):
One hundred percent. And this is you know, as you described,
PCOS is associated with other health outcomes not related to fertility, right, diabetes,
cardiovascular disease, high cholesterol, high blood pressure, fatty liver disease,
and a mutual cancer metabolic syndrome.

Speaker 5 (01:07:28):
I mean there's like, yeah, sleep apnia, sleep apnia.

Speaker 4 (01:07:32):
Yeah.

Speaker 2 (01:07:32):
The author of the psychology of PCOS, who has the
condition herself, said that in the thirty years since her diagnosis,
no doctor has ever told her about these other health consequences.
And I get, you know, n of one anecdote, but
still that is not a unique experience.

Speaker 3 (01:07:49):
Well, and I just have to say this is where
like I honestly was, so I'm a primary care provider, Yeah,
I care for people with PCOS all the time. I
was so embarrassed by how little I knew about the
extent of the metabolic complications and how important they are
first of all, regardless of BMI. Second of all, like

(01:08:11):
to at least screen for despite how flawed our screening
tools might be, and in everyone like it. Just it
is not as well known as it should be, despite
efforts to standardize these guidelines and get this information out there,
and despite the fact that it is much better today
than it was like prior to twenty eighteen.

Speaker 2 (01:08:29):
Yeah, I mean, that's it's very true. And I have
a study that was reported on It was back in
two thousand and seven, so prior to twenty eighteen, but
it was testing US medical residence knowledge of pcos who
I bet it was bad.

Speaker 4 (01:08:43):
Oh.

Speaker 2 (01:08:44):
They found that they scored on average fifty percent and
that only a subset scored higher than seventy percent, like
who were specializing in women's health. I think, Okay, yeah,
huh huh. That is abysmal for a condition that affects
one intent ten people conservatively assigned female at birth. It's inexcusable.

(01:09:05):
And that's also an underestimate, right, Like one estimate I
saw suggested that seventy percent of cases go undiagnosed. Wow
wa yeah yeah, if you don't fit the classical clinical
picture phoenotype A and B. Your doctor might dismiss you.
They'll point out your weight and say, ah, but you're
not obese. I don't think it's PCOS. You're thin or

(01:09:29):
while you're older, maybe your periods are just slowing down
even if they've been quote unquote slow your whole life.
Delays and diagnosis for PCOS are exacerbated by race, by
socioeconomic status, and by gender identity. The term women's health,
along with all the other gendered language surrounding PCOS, illustrates this.
But of course this doesn't apply to all healthcare providers,

(01:09:51):
and some people have really great experiences with their individual providers,
But even for them, even for those providers and overall,
lack of knowledge about PCOS is limiting. What might the
trans non binary experience be like for someone with PCOS?
What do we know about hormone replacement therapy and PCOS?

(01:10:11):
Is a healthcare provider equipped to answer those questions or
willing to look for the answers? Do the answers even exist?
There needs to be a shift in the way that
we diagnose, treat, study, and talk about PCOS. We need
to incorporate mental health care do a better job educating
healthcare providers, raise awareness with the general public, improve treatment options,

(01:10:36):
conduct more research into every aspect of this, and have
more compassion and self compassion. Unfortunately, these changes won't happen overnight,
but progress is being made by advocacy groups, by online
communities where people can learn and share, and by some
researchers who are trying to better understand this condition. And so,

(01:10:59):
speaking of which, I'll turn it over to you, Aaron,
to tell us where we stand today when it comes
to PCOS.

Speaker 4 (01:11:05):
I can't wait. I have a huge surprise for you erin.

Speaker 3 (01:11:08):
Oh, okay, I'm going to take this whole thing in
these last ten minutes and turn it on its head
and then drop the mic and walk away.

Speaker 4 (01:11:17):
Ready, okay, yes, please, you said already.

Speaker 3 (01:11:47):
Most papers cite an estimated prevalence anywhere between five or
six and twenty percent. Most of the newer papers, like
the newest twenty twenty three guidelines said maybe ten to
thirteen percent. Okay, but know the prevalence is thought to
be relatively homogeneous across the globe, with maybe slightly higher
prevalence in people of Southeast Asian descent and Eastern Mediterranean descent.

Speaker 4 (01:12:12):
Underlying that we don't know.

Speaker 3 (01:12:15):
And there's maybe some data that it's increasing in the
recent decades, but it's very unclear to me whether this
is related to any true increases in incidents or just
increasing awareness and diagnosis or things like that. So when
it comes to current research, you laid it out for
us really nicely. Arin, there's a lot to be desired

(01:12:38):
for me. I kind of just was like, what do
I want to know about pcls. We know how much
insulin resistance is a major factor, but we don't have
any essays that can really measure insulin resistance, so love,
I'd love more research on that, and there's certainly people
doing that, and there are ways to measure it, it's
just that they're not easy to do Clinically, They're like

(01:13:00):
time intensive, labor intensive, expensive, so they can't be used.
So then people are trying to come up with like, Okay,
what is something that we can use that like measures
up to these gold standard versions. There's also a lot
of work that needs to be done that is being
done on like understanding some of this kind of higher
level what is this underlying cause, what is linking insulin

(01:13:24):
resistance and this hyperandrogenism. Are these kiss peptins and other
like peptides and receptors in our brain, in our hypothalamus
Are those involved? Do we have a master regulator switch
that we can find that we could target. We don't know,
but a lot of people are working on potentially looking
at other targets for medications. I mentioned glps. These are

(01:13:49):
all the rage right now. GLP one receptor agonists. We
need to do an episode on these they I know
they What would they would be target is in part
this insulin resistance because what they helped do is kind
of regulate insulin release from our pancreas. And so there
was a study that came out recently that looked at

(01:14:10):
GLP ones alone plus really interesting combinations of glps plus
other medicines including estrogen for pcos and they found that
in some at least in this study which was on
mice and rats, I actually don't remember if it was
mice or rats, but they found a better treatment like
alleviation of all of the various things that they look

(01:14:33):
at in mice and rats with pcos then compared to
met foreman, which is very interesting. The GLP plus estrogen combination.

Speaker 2 (01:14:42):
Yeah, the effects are so broad, so broad, it's really fascinating,
and it goes like way beyond. It's like, you know,
weight loss from GLP ones versus weight loss from not
golp ones, and it's like there are extra effects. Yeah,
Like it's just like what's happening.

Speaker 3 (01:15:03):
Well, And like the cardio the cardiologists are on the
cardiovasca effects are so good, the Kid's protection, the and.

Speaker 2 (01:15:10):
Care episode on jlp ones and cardiovascular disease and heart
failure especially, so if you are interested.

Speaker 3 (01:15:16):
Check out it's it's pretty major. They're also still very expensive,
and any new drugs that have come out were going
to be even more expensive, so that's another thing too. No,
but here's where I want to take this whole table
and flip it over. Ready for this, we have talked
so far exclusively about PCOS polycystic ovarian morphology as a

(01:15:41):
disease of people assigned female at birth, as in people
with ovaries. However, polycystic ovarian morphology is not necessary to
the definition right and in fact, the presence of ovaries
themselves may not be in the metabolic phenotype of PCOS.

(01:16:03):
That's a quote from one of the papers. Because we
see very similar metabolic abnormalities and very similar hormonal disruptions
in terms of free testosterone DGS, sex hormone binding globulin.
Looking at all of these hormones in both people assigned
female at birth with ovaries and in people with testicles.

(01:16:28):
All right, so, huh, what's happening? What's happening? Aaron, I
dug deep into this. I'm glad because there is a
male equivalent that likely exists. However, it does not have
a clinical definition, It does not have any clinical criteria.
There are plenty of papers on it. Let's get into it. Yeah,

(01:16:50):
we see in family members like male family members of
people with PCOS, either siblings of or children of people
with PCOS, in incidence in things like early onset androgenic
alopecia so male pattern hair loss before age thirty five.
We also see increases in metabolic syndromes including insulin resistance,

(01:17:13):
type two diabetes, dyslipidymia, hypertension, cardiovascular disease, And in studies
that have actually looked at this, we see a similar
androgenic hormone profile. We can see increases in things like dhgas.
We can see increases in antimulearian hormone males also make
it and LH and FSH, and sometimes we see it.
Sometimes we see a decrease in free testosterone, but then

(01:17:36):
an increase in these other types of testosterones and things.
So anyways, it is hypothesized based on all of this
that first of all, there is in fact a similar
metabolic and hormonal profile that is essentially a male equivalent
a person with testes equivalent to PCOS, and that early

(01:17:57):
onset male pattern hair loss is possibly one like physical
visual marker for this syndrome. Except that about thirty percent
of people assigned MAIL at birth have early onset androgenic alopecia.
So does that mean that it's just not as specific
as a marker. Does it mean that the incidence is higher?

(01:18:17):
What does that mean we don't have multiple.

Speaker 2 (01:18:19):
Causes of it that exactly are not related to this syndrome.

Speaker 3 (01:18:22):
Yeah, And when we look at like the actual gen
lo side that we know are associated with PCOS, we
see those gene lo sie in these males that have
these other symptoms. And yet when I, for example, when
on up to date, which is where I often go
as a clinician, but also when I'm like, does this
and did I just miss this. It is nowhere mentioned
on the PCOS page when I tried to look up

(01:18:43):
like male equivalent.

Speaker 4 (01:18:44):
PCOS, it does.

Speaker 3 (01:18:45):
It's not a thing AARON because we don't have any
test for it.

Speaker 2 (01:18:50):
Or presumably very many treatments. If somebody wants treat it
would be.

Speaker 3 (01:18:57):
The same things in terms of like the metabolic symptoms, right,
so we'd be talking about we'd be talking about met foreman,
we'd be talking about and these other things. What would
we need to do to treat the male pattern hair loss?
Maybe we do the same kinds of things that we
would do in females.

Speaker 4 (01:19:13):
But yeah, we don't have AARON. We don't. We do not.

Speaker 3 (01:19:19):
This is not recognized as a clinical condition. I want
to make that very clear. But it is recognized in
the literature dating back a couple decades, huh, at least
a decade. And I feel like this highlights so PCOS
for me, like the biggest takeaways that I have from PCOS,
aside from just like how much we don't know, is,

(01:19:42):
first of all, how much what we think of as
binaries in medicine are spectrums, right, And where we put
our cutoff markers, what is abnormally high testosterone for a female,
what is abnormally low free testosterone for a male? All
of this is somewhat arbitrary, right, and we've known this

(01:20:04):
for a long time, but it becomes so much more
important when we're looking at a condition like PCOS.

Speaker 2 (01:20:10):
Right, I find it very interesting, like this is I
think that, yes, this is very revealing of the way
that medicine considers bodies and binaries. And I'm just like
thinking about this, like the male version of PCOS. What

(01:20:31):
does that like? That should be able to tell us
more about the root cause.

Speaker 3 (01:20:36):
It should, right, it should if we started looking at
we started looking at why aren't we looking at it?

Speaker 4 (01:20:43):
I mean, there are people who are right because these
papers exist.

Speaker 2 (01:20:45):
I know that you said that this is this is
two decades old, or people start looking at you.

Speaker 3 (01:20:50):
It's more than ten years old. So two decades might
have been an exaggeration.

Speaker 4 (01:20:54):
I don't remember when the first paper.

Speaker 2 (01:20:55):
Was because I feel like in this case, then the
thing that really struck me about PCOS is that we
are failing to capture people. We are failing to meet
the needs that they have in many different ways. Sometimes
that means we're not giving them the treatments that they want.
We're not diagnosing them. Sometimes it means that we are

(01:21:19):
giving them treatments they don't want, right, and that, oh,
the birth control actually worsens your symptoms of anxiety and depression.
And also I don't want periods, so I don't need
to bleed monthly. But we also it's just like it
shows our narrow view of this and how difficult it

(01:21:42):
is to change these to change these perspectives and to
like broad and actually broaden a clinical picture of something.

Speaker 3 (01:21:51):
It also, for me, highlights how stigmatized women's health is
one percent because if you label a disease polycystic ovarian syndrome,
inherently you assume it only affects people with ovaries, which
means that we're ignoring it, we're dismissing it, we're not

(01:22:13):
funding its research, which means that everyone's health is compromised
because women's health affects men's health too.

Speaker 2 (01:22:21):
Women's health is health, it's human.

Speaker 3 (01:22:23):
It is human health, okay, And whether you have ovaries
or whether you have testes, we should be looking at this.

Speaker 4 (01:22:31):
That's like my big rant.

Speaker 2 (01:22:33):
I feel like I have learned so so much huh
about everything I know medicine about PCOS, but also about
medicine and society and perspectives.

Speaker 3 (01:22:45):
And yeah, I know, and it just yeah, there's so much,
there's so much still that we don't know. Yeah, especially
like you were saying about the long term potential for
complications postmenopausal PCOS PCOS intestines. You can't call it PCs.
There's a paper that isn't yet published. Actually it's printed

(01:23:06):
as a preprint, so presumably it will be published soon,
but I do have a link to it. That's about
how we need to rename PCOS because it's such a
false name, like it's such a misnomer, and so we'll
see what changes. Maybe it will change soon. What will
we call it?

Speaker 4 (01:23:22):
I don't know.

Speaker 2 (01:23:24):
Someone was like this, I feel like I read something somewhere,
and I wish I had kept the quote in, But
it was like, this name is so ingrained in medicine
that it's going to be as easy to change the
name and get people to accept it as it is
to find the ultimate cause which will then force a
name rechanging or something like that, our name change.

Speaker 4 (01:23:45):
Yeah, I know.

Speaker 3 (01:23:47):
Yeah, Well, if you want to read so much more,
so much, we can tell you so much about it
or where to find it rather on our website.

Speaker 2 (01:23:56):
Yep okay I once again the book The secon Cology
of PCOS by doctor Stacy Williams. Great book, check it out.
And then for like the overall history kind of part
of it, there was a paper I have a few,
but there was a paper by Aziz and Adashi from
twenty sixteen called Stein eleventhal eighty years on.

Speaker 3 (01:24:14):
I've got links to both the twenty twenty three and
the twenty eighteen guidelines on the recommendations like evidence based
Recommendations for Assessment and management, so those are both. There
two papers that I loved that were just overviews of PCOS.
One was from the Lancet Diabetes and Endocrinology from twenty
twenty two, just titled Polycystical Variant Syndrome. And the other

(01:24:36):
one is from BMJ Medicine from twenty twenty three titled
polycystico very Syndrome, Pathophysiology and Therapeutic Opportunities. And then those
couple of papers that I loved about the male equivalent
of PCOS. One was titled Male Equivalent polycystico Variant Syndrome Hormonal,
Metabolic and Clinical Aspects, and that was by Diguardo all

(01:25:00):
from twenty twenty, and there's another one too from twenty eighteen.
So you can find the list of sources from this
episode and all of our episodes on our website, this
podcast wikill you dot com under the episode stap yep.

Speaker 2 (01:25:12):
You can thank you again to Logan for providing the
first hand account. We cannot, we don't have the words
to thank you, but it means so much. Thank you,
Thank you, it does.

Speaker 4 (01:25:23):
Thank you so much.

Speaker 2 (01:25:25):
Thank you to Bloodmobile for providing the music for this
episode and all of our episodes.

Speaker 3 (01:25:30):
Thank you to Leanna and Tom and Brent and Pete
and Mike and Jess and everyone else that's exactly right
for making all of this possible.

Speaker 2 (01:25:40):
Yes, thank you, and thank you to you listeners. We
hope that you also learned something from this or I
don't know, Yeah, tell us what you think if you
knew all of this already. Wow, yeah, that's impressive. Teach
us something please, and thank you as always to our patrons.
Your support me the absolute world to us. Thank you,

(01:26:02):
Thank you well. Until next time, wash your hands

Speaker 4 (01:26:06):
You filthy animals.

All Episodes

Episode Transcript

Hosts And Creators

Erin Welsh

Erin Allmann Updyke

Popular Podcasts

Stuff You Should Know

Dateline NBC

Las Culturistas with Matt Rogers and Bowen Yang

.css-15opob5{left:0;position:absolute;top:0.8rem;} All Episodes

.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Ep 181 PCOS: Beyond the cysts