Hi, I'm Caroline and I'm a Trustee with Verity,
which is the national Polycystic Ovary Syndrome charity,
and I've been a volunteer trustee since 2007.
So Polycystic Ovary Syndrome, or PCOS for short
is an endocrine disorder which is caused by an underlying hormonal imbalance,
and that then presents itself in a number of different symptoms,
such as irregular periods, irregular ovulation
excess hair, unwanted male pattern loss hair,
also acne, as well as weight gain and emotional disorders.
As a young teenage girl it’s very much a feeling of,
oh, this might be normal, but it's a real feeling that actually
your body's going through changes and you don't quite understand it.
I actually started my periods when I was 11, and throughout
my teenage years, I had pretty irregular periods.
I would go between having a period three or four times every 30 days
to 187 seven days without any periods at all.
When I was 16, went to my GP and they just said:
“Go on Microgynon, that will sort it out”.
Still had major issues
and when I went to university, I literally had, I call it an “acne beard”,
sort of a goatee around my face, and it then actually happened
that my mum saw a magazine article called
"Spotty, Overweight & Miserable: Is this secret syndrome ruining your life?"
and she, very tentatively because I was a little bit touchy
about the subject of course, said "I think this is what you have".
So I spoke to my new GP and he actually agreed to do a referral
I could have waited on the NHS, but there was about a nine
month waiting list for the referral.
So luckily, my parents actually paid privately and I got a diagnosis
with a consultant in about three months,
and I was told that I had PCOS and being
finally listened to and getting a diagnosis
was elating at one point, but also then terrifying at another.
There was no indication that actually, do I address the symptoms?
How do I manage this condition?
I didn't think I could have children.
I didn't know what this condition was.
There was no information given to me as to what PCOS was at the time.
And it was really support of charities such as Verity that
actually got my information from rather than my medical practitioners.
I knew it might be more difficult to have children after
I did my own research and found out actually what I was told was incorrect.
I knew that there may be longer term conditions, such as high risk of
endometrial cancers, high risk of Type 2 diabetes as well,
and it is a case of being conscious of it as a condition throughout my life.
Generally, there is a massive lack of research and understanding
into PCOS as a condition.
It affects three million individuals in the UK
because it affects one in 10 women or those who are assigned female at birth.
And the funding into the condition is really, really low.
There's very few studies, the majority of studies, are small scale
university studies looking at very small quotas of individuals.
So the condition and the condition as a whole, not just on fertility issues,
does need looking into.
Ultimately, I really would love the underlying cause to be investigated
and found out, because by that, you could actually manage the condition
so much more and really help millions and millions of women
and Parliament debating this is a real sign that actually
people are interested.
Over 101,000 individuals
felt the need to actually say this needs looking into further.
So Parliament actually picking that up and debating it is fantastic.
It's almost a baby step, but I'm really pleased,
actually, they're looking into this
and willing to debate it at one of the highest levels.
From this debate I really would like to see an engagement of a wide breadth
of MPs, on all sides of the government.
This obviously is within England
and it would be fantastic if we could see
similar situations across Wales, Scotland, Northern Ireland and Ireland as well.
One of the key things that I really would like in terms of the research
is actually funding needs to go in not just to research on fertility.
That's where the vast majority of the money's in research
has gone to at the moment.
And it is a case that actually PCOS is a complex condition with many symptoms.
And in an ideal world, we would research into underlying causes
as well as I think something that really could be worthwhile is looking at actually
how the government can help consider how the medical profession
can actually increase their understanding and learning of these conditions
to have some best practices.
One of my fellow trustees at Verity actually says
“I have PCOS, it does not have me.”
And I think that's a really good message to get across.