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Periodically is back for season two.

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We are still going to be talking
to you about all things periods and

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chemistry, but this time we have a twist.

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This year, we are very grateful
to welcome guests onto the

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podcast from all over the UK.

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In our next six episodes, our guests will
be talking to us about their experiences

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with menstrual and reproductive health,
where we take a deep dive into topics

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ranging from endometriosis, pregnancy
and the menopause to name a few.

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Our guests represent a wide range of
experiences, and are at different points

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in their career and we hope this will
shed light on the impact that menstruation

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can have at all points in our lives.

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We still continue our quest to find
out and talk about how menstruation can

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sometimes just get in the bloody way.

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This year, we'd like to thank the
RSC Inclusion and Diversity Fund,

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the University of Oxford Chemistry
Department, and the EPSRC funded

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OxICFM CDT for supporting the podcast.

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Hi, I'm Felicity.

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I'm Josie.

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And we are both third year chemists
at the University of Oxford.

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Today, we are very excited to
be joined by Liv and Lauren from

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the incredible society, SASHA,
based at the University of Leeds.

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So I will let you two introduce
yourselves and tell us a bit more

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about the amazing work that SASHA does.

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I'm Liv and I'm the
president for SASHA Society.

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Hi, I'm Lauren and I'm the
Welfare Officer for SASHA Society.

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SASHA Society, or Students Against Sexual
Harassment and Assault, campaigns at the

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University of Leeds for change on campus.

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I study international relations, which
intersects really well with this.

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SASHA Society also advocates
for the welfare of students.

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I study fine art and I'm really
interested in creative activism and

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how we can use art for therapeutic
means to support students.

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Today we are going to be discussing
Liv and Lauren's journey with

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menstrual health, specifically
conditions like endometriosis and PCOS.

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Just as a warning, we will be discussing
sexual assault and body image.

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So just to start with, could you
guys both talk us through your

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journeys with menstrual health?

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So I didn't get my period until I
turned 16, which is quite late and then

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they were irregular, so maybe every
three to four months at the time I

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expressed these concerns with the doctor
and I felt quite invalidated really.

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All of the reasoning suggested by them
was that I was underweight and I was

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told it was about eating and stress.

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So I went on to the pill when I was
17 and I stayed on that for two years.

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I decided to come off the pill at
university as I hadn't experienced

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a regular menstruation cycle and
through this, I experienced a lot

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of pain, but I wasn't bleeding
when I was experiencing that pain.

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I had really painful cramping, I couldn't
walk, I was fainting and throwing up.

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So that happened while I was at
work and also on public transport.

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There was a lot of shame and stigma
around saying that the reason that I

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felt ill and that this was happening
was because I was on my period.

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So I did struggle with that quite a lot.

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I felt this pain to a heightened degree
when I took the morning after pill.

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The doctors said they thought
it was either pregnancy or PCOS,

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which is Polycystic Ovary Syndrome.

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So once I found out that I wasn't
pregnant, I started the diagnosis process.

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This involved blood tests, STI tests,
internal and external vaginal scan.

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That's a process that I think a lot
of people have to go through and

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you have to go through this for this
diagnosis and it's quite invasive

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and an uncomfortable experience and
there should definitely be a lot more

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welfare implemented through this.

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After this I was diagnosed with PCOS.

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I didn't have any cysts
but I had other criteria.

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I had irregular periods.

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I also had irregular hormones
and dysmenorrhea which is

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pain while menstruating.

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I was told I must be on the pill
and the condition meant that I had

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high risk of endometrial cancer.

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I also knew people going through
the same thing that had said they'd

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never been directed to do this.

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So there was a lot of uncertainty
and anxiety around that.

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I asked for the option to stop taking
the pill and then at this point I was

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told I was overweight, so the opposite,
which is just, yeah, quite difficult

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and to emphasise here, I am a weight
that I'm comfortable with and this

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suggestion can be extremely triggering
for a lot of people, so there's quite a

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lack of consideration of mental health.

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I decided to stop taking the pill
without guidance and I experienced pain

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as prior, then after three months, my
periods became regular and I came to the

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conclusion I thought I'd been misdiagnosed
as I no longer had the criteria.

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However, I don't want to return to
the doctors at the minute because

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of the bad experience with them.

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One in ten women have PCOS and
it's as common as diabetes.

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However, most people who don't
menstruate don't know what it is.

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Through this process, I've realized that
talking about periods breaks the stigma

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around menstruation and is validating
for yourself and for other people.

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Thank you so much for sharing your
experience and I'm really sorry that

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you haven't got that much clarity
with your diagnosis and it is really

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frustrating that it takes so long for
people to get correctly diagnosed.

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Liv, what has been your
experience with menstrual health?

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So I started my period at 11, which
was earlier than most of my friends.

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It was really heavy and it
caused hormonal side effects

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and really bad acne for a while.

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So I was put on sort of the classic
medication for that and then at 13

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or 14 I think I went on the pill.

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But that, I think like many other women,
caused really horrible mental health

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symptoms and also a gain in weight.

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So then I went off it for a bit,
but obviously because of the acne

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journey, decided to go back on it.

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So at 16 I went on it again because of my
periods and my acne, but I stopped during

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the pandemic because of a lack of access
to the pill and then in my first year

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at uni, I realized that my pain was not
normal and my anxiety was at its worst

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because the pandemic was sort of the
most comfortable I'd ever felt in terms

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of just being able to manage the pain.

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I mean, I was able to just be
at home, you know, I didn't have

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to go out and deal with all the
difficulty of having a heavy period.

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So then I tried three different types
of pill and I refused to go back.

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But I worked up the courage to go to
the Leeds doctors and I was dismissed

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as a student who needed to be healthier
and at the time I was doing everything

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recommended for a healthy lifestyle
just to try and fix myself, I guess.

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So I ended up going private because
I was fortunate enough to do so.

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So I ended up getting a
diagnosis through that.

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But I had to be really assertive
and I found that there were

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massive boundaries for those who
are anxious or neurodivergent.

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I think that is really the
biggest test for a lot of people.

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So then I went through lots of
physical tests like blood tests,

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things like that, and again
pregnancy tests similar to Lauren.

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But there was no clear cure, there
was no clear outcome, there was

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no clear solution to my pain.

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My symptoms included brain fog, pain
elsewhere in my body, dizziness,

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dehydration, chest pain, fatigue, having
a longer or a regular cycle, depression,

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like I said, lots of mental health
symptoms and headaches and migraines.

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I ended up going to A&E twice, which I
think the disease, like, kind of wreaks

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havoc on my body, and I still say this, I
think no one believed me at the time and

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even though I have people believing me
now, I still have to live with it alone.

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So I re-registered at my home GP
because I thought my family name might

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help me get taken more seriously.

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But I was just put on the pill again,
even though I didn't want to and then I

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still had lots of symptoms and issues,
But I found lots of holistic methods

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that I think worked better and just
being able to take one or two days

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off a month with my uni schedule was
more manageable despite sort of the

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inconvenience of missing out on lessons.

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I had lots of blood tests and scans that
I asked for because of my dizzy spells

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and my pain outside of menstruating
and I was told by the technician

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that you can't rely on picking up
endometriosis on an ultrasound because

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it often presents differently now.

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So the disease has sort of evolved
so then last year I was given three

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options, the pill, the marina coil,
which is the hormonal coil as opposed

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to the copper coil, or surgery.

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But the latter I would have to
fight for and it was not recommended

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for someone of my age who one
day might want to have children.

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So now I kind of just have to live with it
because I'm not happy with those choices.

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I have a very jam packed schedule as
a third year, but I've kind of made

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it by so far just by taking a few days
off a month and getting more involved

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in uni work like my work with SASHA.

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But yeah, I think this should be treated
as a chronic illness and it's really

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not seen as that, which is unfortunate.

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Thank you both so much for sharing.

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Unfortunately, I think that struggle
to have your pain taken seriously

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is something that I think a lot of
people will be able to relate to.

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So Liv, you mentioned that you received
a diagnosis for endometriosis, which

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now in the UK takes an average of 6.6
years to get, which is a long time.

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So how did it feel to find
out that it was endometriosis?

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And Lauren, how does it feel to be
unsure about what your condition is?

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I think it was underwhelming to
have fought so hard and gone through

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all that effort just to be told,
yeah, you have it, but there's not

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actually much we can do to help.

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So essentially I was just
told to live with it.

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I think it does help to feel validated
in terms of being able to talk about it

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with a diagnosis like any other condition.

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But at the same time, it's kind
of like you know, knowing you have

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anxiety versus it being confirmed by
a doctor and it doesn't always make

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much difference to the issue itself.

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I think I feel quite confused because
I'm unsure whether I might have

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endometriosis and not PCOS and I'm just
putting off going back to the doctors

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because of my experience with them and
not wanting to discuss this misdiagnosis.

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I feel a lot better in a way because my
physical health feels better, so that's

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kind of reflected my anxiety about it all.

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But it does feel like I've had to sort
of navigate this by myself and make

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my own decisions without a sufficient
level of medical support or advice.

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I also feel that the suggestion is
often that the pain is due to personal

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decisions and lifestyle choices.

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For example, weight, stress, yeah,
they're the main ones that I've been

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suggested as the reason for my pain
and it feels like I've been blamed

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and really something that I should be
able to control when really it isn't.

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Yeah, because both of you mentioned
that you got put on the pill, which

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is quite, I think, a common thing
for doctors to do for conditions like

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this, and you both have touched on it
a little bit, but the pill is something

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we explored in Series One, so it'll be
interesting to hear a bit more about

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your experiences on it and why you both
decided that you didn't want to continue.

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I was put on it basically before
I'd ever had a regular period.

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So I was very unhappy about the
fact that I'd never had that regular

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period and so that's the main reason
I wanted to come off it because I

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wanted to experience that regular
menstrual cycle to know if I could.

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I was worried about infertility
and what it meant that I wasn't

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menstruating because I didn't believe
the doctors that it was just down to

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weight and stress that they suggested.

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There was also a lot of
emotional side effects.

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I had low libido and I felt
differently about my body.

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I don't think it necessarily changed
my body physically, personally, but

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I felt different about it and it
was just frustrating that always the

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immediate response when I went to
the doctors was, Oh, just the pill

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without a second thought, really.

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Yeah, I think for me as well
as that, like, it's just

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hard to remember to take it.

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It doesn't fit in with most people's
normal life and there's lots of boundaries

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and it ultimately just, it made my mental
health so bad that I would just rather

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not because I think I couldn't cope with
the side effects when it ultimately did

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nothing to help my physical pain anyway.

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I just think it was not, it's not a
worthy cure for endometriosis or PCOS.

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It's such a shame that you felt like
you haven't had that medical support,

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but I was wondering, have you told
your university about your diagnosis

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and have they offered you any support?

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I haven't personally told anyone at
university other than just friends.

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I haven't told any professors.

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I haven't told the university body itself
and I think, like I said, it's a fact

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of life that just a few days a month,
I'll be in bed, I'll be bed bound and

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I won't be able to go to my lessons.

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There are probably some lecturers
who'd be more understanding of that,

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but I think in terms of welfare,
it's quite easy to hide away at

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university and just sort of bedrot.

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It's easy to, I think it's reflective
of a lot of universities in that sense,

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but I think despite knowing support
services do exist that probably would be

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helpful, I wouldn't feel that confident
in reaching out to them just because I

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think my experience with the GP, I don't
feel that I'd receive effective support.

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Yeah, with that idea that it's easy to
bedrot as well, I don't think there's

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really very much clear signposting about
where you'd go to access that support.

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They do have some access to free
sanitary products, but it should be

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way more accessible and there isn't a
society like yours, at the University

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of Leeds, which there should be.

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So anyone from Uni of Leeds
listening should start one.

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Yeah and I feel like I've just
never reached out to anyone to

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discuss at the university, how
it has impacted my education.

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The honest truth is that it does
feel quite embarrassing and it really

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shouldn't, but it's, we need to
just keep having conversations like

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these to break that societal shame
and so we can talk about it and we

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feel like it's a valid reason to be
ill and to be sick because it is.

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Do you feel that the stigma surrounding
your conditions and periods in

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general have affected you in any way?

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Yeah, I think it's definitely
affected me a lot, actually.

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When I was diagnosed, I didn't really
understand what PCOS, Polycystic Ovary

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Syndrome, a lot of even friends and
family who menstruated didn't know what

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it was and I was asked whether I wanted
children and although I thought maybe

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I did, I was 19, you know, I didn't
want to be thinking about that then, it

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was very anxiety provoking and I felt
sad, even just at the idea that this

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element of choice had been taken away
and I didn't even know whether it had.

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I was also told that I couldn't do
fertility tests and I wasn't told whether

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this meant that I was infertile, so I
just felt very in the dark about it all.

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A lot of my shame also stemmed from
this and kept me from talking about

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it because it felt very personal and
I didn't really want to tell people

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that I had this condition when I
didn't even know much about it myself.

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I definitely didn't feel defined
by the idea of infertility, but the

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societal perceptions of womanhood
definitely influenced that humiliation

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I felt and then that not communicating
about it, which made it worse.

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I then only found out after the diagnosis
that PCOS did not mean that it was

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most likely I wouldn't be able to have
children, but I had to find that all out

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myself and even then, the research into
it, it just doesn't feel very definitive.

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I feel very fortunate now that
I'm ovulating regularly, so

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it's not a concern as much.

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But I think through this whole process,
I've just learned that if there was

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better education in the first place,
I would never have had experienced

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such great anxiety about that and
thinking that was a great concern.

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I feel grateful that I'm no longer
experiencing this anxiety to that level,

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however I feel a lot of anger actually at
the doctors, at the system, at the lack

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of medical research into menstruation,
as well as the lack of emotional support.

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It's also upsetting because I
know that this experience is

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not rare and many menstruating
people have had similar stories.

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I have also had very heavy and intense
periods so it feels through that it's

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just better off hiding yourself away
for the risk of the embarrassment

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of leaking and people seeing.

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I also feel quite anxious about period
sex because when I was having very long

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and heavy periods, being on your period
is seen as quite dirty by people who don't

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menstruate and then that perception can be
taken on by people who do menstruate too.

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I think in secondary school I was very
ashamed and no one really talked about

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it and that was kind of the main reason
why I was ashamed because it was very

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secretive even amongst my friends.

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But whereas now at uni I've been forced
almost not to be embarrassed because

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inevitably having like endometriosis,
having heavy periods anyway, you're going

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to leak, like that is just a fact and in
the gym, at uni, like hanging out with

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friends, periods can be so unpredictable
and so heavy sometimes and so the shame

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really was about the period rather than
the experience of having endometriosis

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and like Lauren, I think I had a lot of
anger towards the system and the lack of

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research that there is on these diseases.

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But I think joining societies, especially
SASHA, has been really beneficial to my

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own discourse surrounding menstruation
and obviously being on this podcast with

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you guys and being in just supportive
communities that take these things

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seriously and they believe that it's not
an excuse because the pain is real and so

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I'm finally not ashamed to talk about it.

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So Liv, you mentioned how the
pain of your periods often gets

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in the way of your everyday life.

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Do you feel that because of
this, or for other reasons,

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endometriosis has had an impact on
your relationship with your body?

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Yeah, initially I had major resentment
for my body and the pain that I was in.

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I wondered why I couldn't be normal
and especially in first year where I

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was hiding away a lot, I didn't get
to have the university experience

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that a lot of students want to
have, especially in first year.

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In adulthood, it's impacted my routine,
my training at the gym, which is key for

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mental health, like that really helps
my overall health and well being and

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then sometimes it also just prevents
me from getting out, getting sunlight,

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getting fresh air and interacting
with people, going to my studies,

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like I've said, which obviously hurts
long term, it's like a kind of never

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ending cycle, even when I'm not on my
period, I'm having pain during my cycle.

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So it's all very difficult to balance and
I think in recent years it's, though I

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don't have shame about my periods, it's
impacted my self esteem in terms of weight

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gain, mental health and rather than the
stigma and the shame about the condition.

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I feel shame about the impact
that's had on me as an individual

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and the side effects that people
don't know are related to that.

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But I think since I've realized
how many people actually live with

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this pain, I sort of feel a sense
of community and comfort from that.

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Thank you both so much for
sharing these experiences.

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I'm sure so many other people can relate
and these conversations are so important.

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What would you like to see in the future
for people dealing with these conditions?

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Part of what we do at SASHA is aim to
educate as early as possible in open

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conversation, to raise awareness and
prevent instances happening through

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building supported communities that will
campaign against rape culture and I think

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this model is important in any issue
it's important in a supportive welfare

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context and for example what Periodically
does in distributing information about

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00:18:24,921 --> 00:18:34,980
the conditions and detailing real
experiences, I think that resonates with

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a lot of people and it's also useful
in terms of campaigning for a cure or

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just for prevention and alleviation
of symptoms for a lot of women so that

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we can have some semblance of peace in
our lives again would be really nice.

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Nevertheless, I hope that people
will listen to this and if

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they do resonate that they just
don't feel so alone, like I did.

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It would have helped me a lot to build a
community earlier on and to also absorb

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more facts about these conditions.

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Yeah, I agree.

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I think there should be so much
more welfare as well implemented

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00:19:02,054 --> 00:19:07,135
through the process of diagnosis
of PCOS and endometriosis.

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For example, the internal vaginal
scan is something which can be

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extremely triggering and there
should be a more trauma informed

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00:19:15,050 --> 00:19:17,610
approach to these medical procedures.

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I also think that we need to break
the stigma, you know, there's

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so much awkwardness around it.

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This reflects the work
we do with SASHA Society.

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We're just trying to break
the stigma about these issues

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which are not discussed.

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I say to everyone now, like, I'm on my
period just because I'm trying to break

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00:19:34,540 --> 00:19:38,010
that kind of lack of talking about it
and not everybody has to do that, but

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I'm just kind of like over it now, tell
them that's why I'm feeling ill and

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00:19:43,849 --> 00:19:47,210
then that's on a personal level, but
on a political level, I think there

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needs to be much more medical research.

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00:19:49,400 --> 00:19:55,350
There's a shocking lack of it because
it's a problem dealing with menstruation.

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So only 50% ish of people have these
issues and I think with this increased

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awareness and understanding, there will be
more support for individuals on a personal

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level with their struggle with these
conditions, for example, endometriosis

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and PCOS and there will be a much greater
societal understanding of what these

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conditions are, which will mean that
experience such as pain is no longer

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invalidated and we together can then break
that societal shame around menstruation.

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Thank you so much, Liv and Lauren,
for coming down to talk to us today.

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There's evidently a lot of work to be done
in society towards helping those who live

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with these conditions, both with finding
an effective treatment to alleviate

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pain, but also a shift in how society
views the severity of these conditions.

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I think what you guys were saying
about building a community is so

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important, so hopefully this episode
is a step in the right direction to

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help validate people's experiences and
let them know that they're not alone.

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Thank you so much for listening.

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In particular, a huge thank you to Liv and
Lauren for being such fantastic guests.

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We have learnt so much from you, and I'm
sure our wonderful listeners have too.

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We hope you've enjoyed our discussion
around PCOS and endometriosis.

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If you're interested in learning more
about SASHA's work, then visit their

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Instagram @SASHA_UOL and to find out
more about the podcast you can find us

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at www.periodicallyoxchem.wixsite.com
or follow us on social

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00:21:18,960 --> 00:21:21,570
media @periodically_ox.

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Tune in next week for our next episode.

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Again we'd like to thank the RSC
Inclusion and Diversity Fund, the

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University of Oxford Chemistry
Department and the EPSRC funded

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00:21:30,535 --> 00:21:33,820
OxICFM CDT for supporting the podcast.