- I haven't even kissed a boy and I'm on the pill.
(laughs)
I thought that'd be funny.
- Hello, welcome to episode 13 of The Hormone Diaries.
As I said in the last episode,
I want to explore other people, not just me.
So, welcome, Leena Norms.
- The other,
ish.
- So, this episode is going to be all about PCOS,
which is Polycystic Ovary Syndrome,
which Leena has.
- I do.
- So, this was going to be a video,
where I was going to ask Leena
a bunch of questions about PCOS
and she was gonna school me on it.
And then I was like, okay,
I need to come up with some questions.
I'll just like, read the NHS Choices page
and then from reading it, I've been like,
Leena, did you know this?
Did you know this?
And she's like,
- And I'm like,
no.
(laughs)
I got diagnosed 12 years ago when I was like 15.
So,
- Yeah.
- The information that was around then
might have been different.
I might have absorbed it differently.
I'm quite guilty of probably not
being that schooled on anything about my condition
other than how I treat it and how it affects me.
I think when you have an illness,
or, like a condition,
does anybody else do that when they have an illness
so they don't look it up?
Is that just me?
- I have ulcerative colitis and
my mom looks up stuff about it,
- Yeah.
- all of the time and then tells me.
What is PCOS?
- So, I thought it was having cysts on your ovaries
and that's how it affects your hormone balance
especially between testosterone and oestrogen.
Hannah is going to tell me different.
- So, there are three main features of PCOS.
One is irregular periods,
your ovaries don't regularly release eggs
so you don't ovulate.
Excess androgen, high level of male hormones.
That can then make you then have symptoms such as
- More masculinity.
- Yeah, excess facial or body hair,
and then other things as well.
- Other fun treats.
- And then, this is the polycystic ovaries bit.
- Yeah, this is what blew my mind.
- It says your ovaries become enlarged
and contain many fluid filled sacs,
which are called follicles which surround the eggs.
It's important to note that
despite the name, if you have PCOS,
you don't actually have cysts.
- Air horns.
(horns blowing)
I didn't know that until literally about five minutes ago.
I've always been told I had cysts
growing on my ovaries,
- Yeah.
- they were permanently going to be there.
They could fluctuate between being big and being small.
- Maybe,
- Go on your way mini-Neena.
- this is like the difference between
science that we had 12 years ago and now.
I thought it was cysts that were
growing on the outside of your ovaries.
Whereas, this description, it sounds like,
it's inside your ovaries and the
individual eggs inside are surrounded by
this sac, which prevents the eggs from getting out.
- Which causes all sorts of fun games.
- So, for you,
- Yes.
- What are your symptoms?
- Okay, so, I initially went to the doctor
because when I started my period,
they were incredibly painful,
incredibly irregular,
I was very worried about it as a teenage girl would be.
And they went and they were like,
mmm, do you have excessive weight gain
even though you do loads and loads of exercise?
And I was like, yeah.
And they were like, looks like you've got a beard there.
And I was like, I do.
And they were like, yeah, so you have
cysts on your ovaries.
That was the symptom that initially
triggers me,
- Oh, okay.
- like getting into it.
- Maybe you also do have cysts on your ovaries,
maybe they weren't lying.
- I also did have an ultrasound,
which involves, by the way,
drinking about two pints of water,
- Oh really?
- and then a man like pushing down on your bladder.
People pee themselves during that thing.
Um, so I did have a scan to prove I had PCOS,
but I thought they were seeing cysts,
but maybe they weren't seeing cysts
maybe they were seeing bags.
But the other symptoms that I experienced,
they were just things that I
thought were just wrong with me.
I genuinely thought I was one of those
chubby, awkward, hairy teenagers.
Which I could have been,
but one of the symptoms is that
you have a very low level of insulin in your blood.
And so as a PCOS person, I'm always pre diabetic.
I'm not diabetic, but I'm always in that danger zone.
- So where did you hear that
you have low levels of insulin?
- That's from the doctor as well.
Fucking wrong!
(laughs)
This should be like a game show
called Do You Know Your Ovaries?
- Is your doctor lying to you?
This is the NHS website, I trust this.
And it says what causes PCOS.
The exact cause of PCOS is unknown,
but it often runs in families.
Yeah,
- My mom doesn't have it,
but I didn't know any of my grandparents.
- It's related to abnormal hormone levels
in the body, including high levels of insulin.
What's happening?
(laughs)
- I've been owned by my own ovaries.
- So, it says, insulin is a hormone
that controls sugar levels in the body.
Many women with PCOS are resistant
to the action of insulin in their body
and produce higher levels of insulin
to overcome this.
- So it's not that I don't have insulin,
- And so it's producing more insulin,
because the action of insulin isn't working.
This contributes to the increased production
and activity of hormones such as testosterone.
Which is where all of the physical things come from.
Being overweight or obese also
increases the amount of insulin your body produces.
So you're more likely to increase,
to produce more insulin if you are more overweight.
The other thing I found really interesting
is the fact that one of the symptoms of PCOS
and one of your experiences,
is that you have a lot of weight gain
even if you are exercising a lot.
It's very difficult to shift the weight.
In this and then other places online,
it was just like, treatment for PCOS,
try losing weight.
- Yeah.
(laughs)
So basically, I got diagnosed when I was like 15
and I had this male doctor and
he just looks at me very sternly
and he was like, you're fat.
I remember going into the car and crying
and my mom was like, what's wrong,
the doctor said that I was fat.
That stayed with me for a long time.
I was already a really active kid
and I was running up gantries at 15
cause I was working at the theatre.
And I was doing quite a lot of stuff.
It wasn't like sports, but it was theatre stuff.
Something I try to watch is my weight,
but it's hard cause I think it's
also because it's harder to lose weight.
You don't see a difference for a year.
There was a point in my late teenage years,
where I was about maybe four stones lighter than I am now.
But I was doing manual work in the desert.
- Oh yeah.
- I was literally building trail
for 12 hours a day
and then I was a size 12.
- Yeah, like, this is the smallest I would possibly get.
- I was drinking four litres of water a day
because that's how much exercise I was doing.
- What have you done, in terms of treatment?
Have you done anything?
- So, when I found out I was put on the pill,
which felt very naughty cause I wasn't sexually active.
I was like, I'm on the pill.
Saucy.
I haven't even kissed a boy and I'm on the pill.
I'm not supposed to go on the normal pill.
It's a special one, it's called Dianette.
I think it's used for acne a lot.
But it's also supposed to treat symptoms of PCOS.
- Yeah, it's a tablet taken by women
who have severe acne or excessive hair growth.
- It did also regulate my periods
because they were really painful and irregular.
So, I guess that.
- Oh, okay.
- I took that for about six years
without a break which apparently is quite risky.
It gives you the blood pressure
of somebody who's pregnant.
Came off it at university
and just started feeling completely
differently about my body.
As well, on the NHS, I was given electrolysis.
- Okay, yeah.
- Which is usually really expensive treatment,
but it's really, really painful.
It's a hot needle in your pore
that kills the root of the hair.
And it's all around this really sensitive area.
So if you wanna,
I grew a little beard for you, Hannah.
This patch is where it's quite, it's worked.
And some patches where I haven't had it done.
- So yeah, you've got, there's nothing here.
- Yeah, yeah yeah.
It's really weird.
So I had that done for about a year,
but it was so painful that I came
out of it shaking and crying.
They're ten minutes long.
Like, it's way more painful
than any tattoo apparently.
I got to that point where I think I was
growing up and I was like, I'm telling my body
that it's so unacceptable that I have
to put it through all this pain
just to be normal.
And it was on the NHS
so it felt like it was a good thing to do.
It felt like I was sensible,
but the only reason they prescribe it is because obviously,
hair growth on women isn't attractive.
- It's not feminine.
- Yeah, and therefore it's going to affect
you mentally so that's why it's prescribed.
- And the amount of women that
have facial hair that don't even have PCOS,
- Yeah, totally.
It wasn't a good enough reason
for me to put myself through all that pain.
Put the NHS through all that expense
because it's fucking really expensive
and I just basically just said to them,
I was like, I don't want to do this anymore.
Which means I now have this weird,
patchy hair growth thing.
I spent a lot of time putting
a lot of acid on my skin to dissolve it.
You know the stuff you put on
your legs to dissolve the hair?
- Oh, the hair removal cream.
- I'd put it on my face and you're
supposed to do it every six weeks
and I do it every three days.
And it was really not good for my skin.
- So this is when you were in your early 20s?
- Yeah and then basically, I was like,
oh I just don't care.
I kind of just let go and then
now I just shave when I feel like it, like a man.
It's really funny because me
and my boyfriend do it together.
And he's like, don't worry it's fine.
Let's shave together and we like do it.
It's kind of like in Shrek,
you know when they go on holiday in Shrek 2.
So I do that, but I also try and
grow it sometimes just cause I'm like,
remember, this is part of your body.
It's something that's happening to you.
- Okay, yeah.
- So, that's completely changed me.
- So, have you also been off the pill since you were 21?
- No, so then I went on a different pill
and that fucked my head a bit as well.
And I came off it.
When I came off the pill I felt
completely differently about people
I was attracted to and broke up with my fiance.
It really does fuck with everything about you
and it made me feel real uncomfortable.
So then I went on a coil for a little bit
and that was really painful just to come off that.
And now I'm on nothing.
It's not advised, but I don't want
to fuck with my hormones anymore.
- Yeah.
- And it upset me a lot, so I didn't want to do it.
- If you have PCOS, you might
find it hard to get pregnant.
Usually you can with treatment.
That's what the NHS website says.
But since I've known you,
you've always been like, I don't want kids.
- Oh, fucking A, man.
- And I was wondering does you
not wanting to have kids
is that coming from you entirely,
- Is it a self-fulfilling prophecy?
- Yeah.
- Or, when you were 15,
you were told that you wouldn't be able to
and so you then conditioned yourself into not wanting them?
- I remember them going,
when you have kids, you're going
to find it really hard to have them.
And then I also felt really weird
because that's obviously one of
the main functions, in my brain,
of a female body.
And I was told really early on
that I might not be able to do that.
And that was really confusing
because feminism hadn't reached country yet.
(laughs)
It's something that doesn't bother me in later life
because I don't really think I want them, still.
All of my friends are always like,
it'll kick in, just you wait.
- Yeah.
- And I'm like, it's not something
that I think would upset me if I didn't want, as well.
I'm also on loads of PCOS Facebook groups
of people who have PCOS across the world.
- Yeah, it's a lot of people.
- A lot of people join those groups
because they're trying to get pregnant and they can't
and they're really upset about it.
So it's a lot of heavy, emotional stuff.
And this one post that I saw the other day,
somebody was like, comment below to
show how many times you've tried to get pregnant.
Green was like, you lost it
and red was you got it.
And it was like green, green, green, green,
red, green, green, red.
Green, green, green, six kids in Heaven.
(laughs)
So, I'm looking at it like,
you know, it's so heavy and it's so upsetting
and it's like, yeah, people can get pregnant,
but I don't really want to go through that.
For some people it's a really key part
of their future and I completely get that.
Yeah, go for it, for me it's not.
- That's heavy.
- Yeah, sorry.
- That's really heavy.
- That's the reality of it, though, I think as well.
- Yeah.
- And it's really,
I wouldn't have had that without the internet.
- How do you kind of deal,
in terms of a mental health way
and a body positive way,
of being happy with yourself
in the body that you have,
knowing that you've got a condition
that affects the way that your body looks and is?
- I think I forget a lot of the time.
- Okay.
- Sometimes it stops me from holding
myself to such high standards because I'm like,
have a cake, you've got PCOS, give yourself a break.
(laughs)
Not good,
especially if you're pre diabetic.
It's the thing of giving yourself a break
and also remembering that you do have
a pre existing condition that could
result in diabetes any moment.
- Yeah.
- And sometimes I have really good
relationship with my body and
then sometimes I really don't
and it's this thing of,
I don't know, it's a weird one.
But I'm working on it and I think that,
I just treat it like it's eccentric.
I'm like, oh, my body,
putting on weight like nobody's business.
Treating it with affection, but also reality
it's like a kid, you're like, okay.
- Do you have anyone in your real life,
like your friends who also have it
who you can go to?
- I do now, I think I found out more people have it.
So, when I was 15, it was a lot rarer to be
diagnosed that young and a lot of people
develop it later in life.
So the older I get, the more people
around me will have PCOS.
So I think now, I have more people.
- One in every five women in the UK have it.
- Oh, okay.
- And more than half of these women
don't have any symptoms.
- That's crazy.
I might have more friends that
have it but we don't know.
- Yeah.
- Maybe.
- Reading that makes me think
how many women don't have any
symptoms and they only find out
once they try and get pregnant.
Cause they have trouble getting pregnant
and they're like, why?
And they go in for the test and
then they find out they have it.
- I was definitely a chubbier kid
and I didn't really understand why
and I just ate like my friends ate cause I had no idea.
I have a bit of a lower voice,
but I don't know if that's a thing,
I don't know and there's also the body hair
made me feel like I wasn't gonna be a girly girl.
I couldn't be a girly girl,
so I was like, gotta be a tomboy.
If I was doing drama,
I'd always be picked to play the man
if there weren't enough men or stuff like that.
And I'm like, kay.
Yeah, or the matron, the mom.
I was always playing the mom in every single play
cause I was a bit chubbier.
- I guess we should finish it on
any advice you have
for people who maybe have PCOS
or they have symptoms and they are like,
is this a thing that I maybe have,
I don't know.
- Because it's such a common thing,
people are currently living their lives
and dealing with it easily.
Never think of myself as somebody
who has a disease or has a condition,
because I know that there's way bigger conditions
out there and I'm like, I'm just a person
with some facts.
Go and work out what you can and can't eat.
Go and work out what's best for you,
but don't be this thing of like,
this dark secret about my body
I didn't know and now I'm going to die.
It's a thing that is helpful to know about,
but don't freak out.
And read up on the current information
about it because if you've been
diagnosed a long time ago,
looks like it's changed.
(laughs)
- If whatever contraception you're on,
if it's hormonal and it's not agreeing with you
and you don't like the side effects of it,
just because your doctor recommends
you going on it because of your PCOS,
there'll be pros and cons of
being on it and being off it.
It depends which side effects
and which symptoms you're most comfortable with.
- Some people will assume that it's
more important to you that you lose hair
on your face or you get more regular periods
than it is that you, that the risks of those medicines.
At the end of the day, doctors are there to
look at your symptoms and prescribe you solutions.
They're not there to help you live with a condition.
- Thank you for watching.
Please give the video a thumbs up
if you enjoyed it and just let
us know in the comments
your thoughts on PCOS,
if you have it and maybe the things
that you do to relieve symptoms,
but then also the mental health side of it as well.
- Yeah, yeah.
- We're also going to film a video on Leena's channel
where we talk about what it's like
to be in a relationship after
being single for,
- Yeah, cause we both did the truth of being single.
- A long time.
- I feel like I unloaded onto you,
I was like they're single, independent girls.
And now we're like, so hard in love.
(laughs)
- Help.
- It's disgusting.
- So we're just going to talk about
what that transition is like, I guess.
- Yeah.
- So you can go check that out and subscribe
to Leena whilst you're there.
Thanks for watching The Hormone Diaries.
Bye.
- Bye.