The doctor said that I was
making my pain up so I could miss school.
Just got told I had heavy periods.
When I go to A&E, they think that
I might be a drug addict.
It's taken me 11 years
to finally get a diagnosis.
And they were telling me that I was making it up.
It just makes you feel like giving up.
If a man went in and said,
'I feel like my testicles are falling off',
they'd probably get taken quite seriously.
Endometriosis is a condition that affects women,
whereby cells, a bit like those in the lining of the womb,
are found outside of the womb.
They bleed and they cause inflammation,
and this in turn can lead to often very debilitating pain.
It's estimated that one in ten women suffer from endometriosis
so that makes this condition as common as diabetes.
My pain feels like I have sat on a hot knife.
Putting their hand up inside you,
and just like squeezing all your organs.
Like someone's getting a knife,
and just whipping it around on the inside.
I can't wear tampons because they're too painful.
There have been times I have vomited,
just because it's just so much on my body.
Being misdiagnosed made me feel...
Angry.
Alone.
Really sad.
Confused.
Helpless.
Like nobody believed me.
Endometriosis is hard to diagnose,
because there's limited awareness about the condition.
So, we still don't fully understand what causes the condition,
how and why it develops.
I got told I had polycystic ovary syndrome.
I had IBS.
Irritable bowel disease.
Over 11 years I have been hospitalised
maybe 50 times.
I've seen doctors who have never heard of it.
It's also difficult to diagnose,
because it mimics other conditions,
like irritable bowel syndrome (IBS) for example.
I think the major problem is we don't have a simple test.
And the main way of diagnosing it is
by having keyhole surgery.
This is a burden for women,
it's a cost to the health services,
but it also has, sometimes, complications.
So it's not something that we would want to rush into.
In the UK sadly at the moment, anything between
seven to eight years is the delay in the diagnosis
for endometriosis.
It's ten years of the same symptoms just getting
just getting progressively worse,
and no real investigation as to why.
It's 16 years and it's only sort of been in the last
12 months that they've mentioned this condition.
I've seen in the region of about 50 doctors.
This year? (Laughs)
Five times that I've been in hospital,
been in A&E, because of pain.
It makes me feel angry but it also makes me feel worried
about all the other women out there
that are currently struggling.
There's definitely some evidence that there's
a 'gender pain gap', if you like.
Historically, women's health research has suffered
largely because men have been making decisions about
which conditions to give limited research funding to.
People didn't talk about things like period pain
which is obviously a major symptom of the condition.
I think society doesn't take women's pain,
as seriously as they should.
A lot of the time I've gone to doctors,
and been like 'I'm having pain about my periods'.
'Ssh! Don't talk about it, it's not that bad'.
'Everyone bleeds heavily, that's what happens'.
'Women, they get pain, that's just how it is'.
Collapsing in the street and going to hospital
in an ambulance, isn't part of being a woman.
There's so much research and funding
around diabetes, but why, if it's affecting
the same amount of people,
do we not have any more funding
put behind endometriosis?
We don't even have a cure yet.
Why isn't a part of sex education at school,
you do about periods,
you learn everything like that,
but you never get told about this condition?
Why there isn't more common knowledge of this
amongst other healthcare professionals?
I find myself a lot of the time explaining
what endometriosis is and how it affects me
to doctors.
I think things are changing in terms of the previous
lack of training.
For example, Endometriosis UK and the Royal College of GPs
have put together an online education package
about endometriosis for GPs and I think this will have
a big impact on raising awareness
of the condition amongst doctors.
And also, there has been a push
towards more funding towards
trying to understand the condition,
which I think is a really positive thing.
I constantly feel like I have to fight.
I'm fighting with my own body every single
day of my life as it is,
I shouldn't have to fight with the doctor
who is supposed to be helping me feel better.