Hello, my name's
Nikita, I'm 29, I'm part of the Daisy PCOS leadership program
at the University of Birmingham, and I'm also a trustee of Cysters.
Honestly, the first time I went to the doctor
for painful periods or anything associated, I was 15
and I was put on the birth control pill for about eight years,
which really masked a lot of the problems that I suffered with.
When I came off the pill
that's when I started to notice that something wasn't quite right,
and that was back in 2015.
I was formally diagnosed in late 2018.
So although I pushed
and I got the help that I needed when I look at my entire journey
in my health from the age of 15, I would argue that
I've had endometriosis and PCOS for a very long time.
Pre-diagnosis it’s very difficult.
Your way of life is changing, completely.
Your body, everything, and you're going to the doctor
and you're trying to get a diagnosis and you're quite
commonly ignored or not actually really listened to.
So getting that diagnosis was personally very validating
because I finally had the language
I could describe what was happening to my body.
And I found that
when I was diagnosed, people were more receptive to me.
They were more sympathetic of me and it gave me something to fight
but my experiences in the medical system have not changed that
much since getting my diagnosis.
Quite frequently
I've heard the phrase: “Nikita, you sound like you have
endometriosis” countless times when it's there, it's on
my medical record.
The mainstream narratives and representations of both
PCOS and endometriosis seem to always be centered
in being a cisgendered woman and generally in whiteness.
So if you don't belong to either of those categories,
you find yourself actually working again at a disadvantage.
And when you're already societally working
at that disadvantage, it's a lot to handle.
It's a lot to take in
and there isn't a lot of organisations
or supportive organisations that are intersectional
in their approach because that's my identity.
I am intersectional.
I don't just kind of have one set of privileges or oppressions.
So it has been helpful, but it's also been quite disempowering.
I feel like PCOS is labeled as a reproductive health condition,
but it's actually something that affects the endocrine system,
which is your hormonal system
and also the metabolic system of the body.
It's an all over condition.
PCOS is so all encompassing it can affect your skin
so you can have cystic acne or oily skin.
It can affect your hair
so you can have excessive body and facial hair
and as a South Asian person, that's something I already
struggle with quite heavily.
You're more inclined to anxiety and depression
and to problems with emotional regulation.
Infertility, brain fog, chronic fatigue, dry eyes.
The symptoms are really, really vast
and it's very dependent on who you are as a person
but we don't even know at this point what causes these conditions.
We know they disproportionately affect certain types of people,
for example, PCOS and endometriosis, you're more likely
to be diagnosed with either condition
if you're South Asian than if you're white.
Even when I was battling to be seen
in both of these conditions, that was never told to me,
even though I'm someone that's more likely to develop them.
So there's a real lack of general information about the conditions.
It's quite frustrating to constantly be told,
for example, that I'm more likely to have a condition,
but at this point, I still don't know why.
I don't believe that GPs are adequately prepared
to deal with either PCOS and endometriosis,
and I can only look at my own experience, which was the GP
that was trying to help me get diagnosed, told me very clearly:
“I know something is wrong with you, but I don't know what it is”
and a lot of us don't actually get diagnosed until we're
in front of a gynecologist.
And even then, I know people that have been to a specialist
and have been told they don't have it to later
have another surgery and to have it confirmed.
I think it's particularly important, I think it's
extremely important that more research,
funding and resources are put towards these two conditions.
I have to wonder if this was
a condition that affected just predominately cisgender men
if there would be a solution or there would be research
or that at least be further understanding and sympathy.
Cisgendered women
are not the only people that suffer with endometriosis.
So you're actively locking out an entire demographic
and category of people, because they don't fit what you think
endometriosis is
and even up until a few years
ago, endometriosis was labeled as a white women's disease,
and that narrative in society that impacts people like myself.
So for me, research is needed.
It needs to be intersectional.
It needs to be widened and it needs to be led by those people.
Because I would ask very, very different questions than,
for example, other people might ask just based on my experiences.