Endometriosis.
It's a disease where tissue similar to the endometrium,
the lining of the uterus that's shed during menstruation,
is found in locations outside the uterus,
forming growths known as lesions.
Insidious.
Unrelenting.
Disease.
Frustration.
Infertile. Debilitation.
Brutal. Painful.
Horrible. Perplexing.
Disillusioned. Misunderstood.
Sabotage. Unforgiving.
Powerless.
Invisible... It's all in our heads... Feels like my uterus... It's a women's issue...
It was so foreign... It is all in my head... Or attention-seeking...
Just rest... Toughen up...
Frustration... frustration...
Frustration... powerless.
Depression... not rare... denial...
just rarely found.
Insidious... attention-seeking... misinformation... lurking... extreme bloating... exhausting...
misdiagnosed... brutal... suffering... painful sex...
fatigue... undetectable... unpredictable... frustration... isolation...
Alone.
16 years of age.
My stomach was bloated, I was super embarrassed about it.
I've had my period for nine months and I've had pain ever since they started.
I ended up getting my period all the time and the pain just doesn't go away.
You can't leave your body.
You're trapped in this painful body and environment
that you just can't get away from.
Basically, it's just a part of the life and you just have to get used to it.
It joined my organs together.
Frustration... debilitation... incessant... powerless... painful sex...
misunderstood... disease.
I once had a doctor force me to take a pregnancy test
because she didn't believe that I could be that bloated.
I was still a virgin.
I thought there was really something wrong inside of me.
There were times when it was so painful I'd have to go into emergency.
Finally a doctor took my blood pressure
and realised that I was near coronary point.
Frustration... infertile... debilitation... brutal... unforgiving... disease.
When they started doing all the investigations to figure out what was going on,
I had a massive ovarian cyst.
My endometriosis is quite hidden, I guess, because I don't have the typical symptoms,
I don't have excruciating pain.
Painful sex... infertile... brutal... incessant... unforgiving... misunderstood.
It had been growing for so long that it was crushing my insides.
I only had half a kidney working by the time it was discovered.
Everyone just says that your periods are really painful
and it's meant to be like that and that's just how it goes.
Take a Panadol and chug on and get on with it.
I thought my periods were normal because they were normal for me,
I never actually thought to tell someone.
He told me that there's no way that I could be in this sort of pain
and that it was all in my head and I should try getting some tolerance
or seeing a pelvic floor specialist to learn how to relax.
Frustration... frustration... frustration...
Silence.
It wasn't until I was 16 that the pain was so severe
that I was passing out and my cycles were every two weeks
instead of every month.
Instead of things getting better, things got worse.
They sent me to a hospital where they do abortions,
which was great to send a 16-year-old girl.
They cut me open from my belly button to my pubic bone.
They had every kind of specialist you can imagine in there
because there were so many organs affected.
Debilitation... frustration... powerless.
And when I was recovering, they trooped through all these student doctors
and all sorts of other people who were just really curious about this phenomenon
of a 16-year-old girl with this size tumour.
Apparently I'm in textbooks now.
It feels like barbed wire is being wrapped around my chest.
I haven't been able to work for six years due to my endometriosis.
I've had to miss school because of my period.
Endometriosis can grow anywhere in the body.
The first occasion was on my bowel.
Bladder.
On my diaphragm, my flank, abdomen, uterus, my bowels, pouch of Douglas,
basically everywhere in the pelvic wall.
Fallopian tubes.
And they found ten plus nodules sitting on my diaphragm.
Again, it was in a completely different place, it was the pouch of Douglas.
By the third one, it was my ovaries had attached to an organ.
Every single time was somewhere different.
Literally everywhere... frustration... debilitation... powerless...
incessant... perplexing... insidious... disease... unrelenting... lurking... debilitation... denial...
There are no words.
Powerless... frustration... disease... insidious... infertile... incessant...
brutal... unforgiving... perplexing... frustration... denial... disease...
I am one in ten.
I just remember laying lifelessly on the hospital bed
and it was like the words just rang through my ears.
It was so foreign.
When I woke up from my first surgery, where they diagnosed the endometriosis,
I remember crying as soon as the doctor told me that I definitely had endo
because I finally had an explanation for my symptoms.
I knew that they weren't normal.
But I had a disease, and it was a disease that was for life.
There was no cure.
I sat behind the lady as she typed abnormal this, abnormal that.
- I didn't understand. - Completely overwhelmed by the diagnosis.
I just want this to end. I was crying in the ultrasound.
And then the specialist in Melbourne suggested that I may have endometriosis.
I feel like I'm running around in circles.
And they still didn't diagnose me with endometriosis.
I feel really helpless, like I can't do anything.
There was just nothing that they could do.
I walked into my surgery thinking,
I'm going to come out the other end
and they're going to say,
"No, there was nothing wrong with you. You had a few cysts, we've cleaned them up, but...
you know, you don't have endometriosis."
And I wouldn't have an answer as to why I felt so bad
and why my iron... and why I had migraines and stuff like that.
Turns out I did have endometriosis.
My ovaries were, I don't know the correct term, but my ovaries were fused to my other organs.
I've had thoracic endometriosis for over 12 years now.
It took nearly seven years to get a diagnosis.
The only way for us to really know is surgery.
Over the past decade I've had eight surgeries.
- Six surgeries. - One surgery.
- Eight surgeries. - Two surgeries.
Six surgeries.
I've had up to nine now and into my tenth in two weeks.
Four of those were to treat the endometriosis on the diaphragm
which aggressively kept growing back.
Another one of those surgeries was to repair a diaphragmatic hernia
that actually occurred from a previous surgery to try and excise some of the endometriosis.
I've had it removed from my chest wall.
I also had a liver resection two years ago due to the endometriosis growing inside the liver.
Someone said, "You're being overdramatic. You're making it up. It'll be fine."
This made me feel like my pain was irrelevant and not normal.
And as it was the endometriosis was not good for a relationship.
It was good when I wasn't sick.
But when I was sick it was really, really awful.
So, there wasn't a lot of sympathy.
I was taken to hospital with a suspected ovarian torsion.
My boyfriend at the time called me
and upon me telling him that I was on the way to emergency,
asked me what was for dinner.
Eventually, yeah, he cheated on me.
Which, again, was my fault because a big part of a relationship is having sex
and I wasn't able to do it all the time
like a regular person at 25, 26.
I think for me, the hardest thing is, you know,
going to see a gynaecologist and they tell you,
you really should have kids within the next five years.
I don't even have a partner.
Having children is something that is so important to me.
And having that kind of pressure put on my life
and the pressure to find someone for that purpose
it puts a lot of strain on your life.
The fact that I could have trouble having children
it just broke me.
I got pregnant after 12 months
and had a miscarriage.
Useless as a woman.
So not able to conceive.
Tried again.
So, I would go through IVF every two months.
I've always wanted to have kids.
It has a huge impact
and trying to be in a relationship when you're like that is incredibly hard.
And I know it is asking a lot of someone to watch you suffer all the time
and you can't go out like regular people.
A lot of my friends and family do make it okay for me to speak about my pain and what I go through.
But there's also that little voice in the back of your head
that makes you think that you are a burden to everybody else.
Seen as complaining all the time... 200 million women... Attention-seeking...
Alone... You just have to deal with it... So foreign...
I'm only 19 at the time... shame...
And what if this is the rest of my life?
Shame... guilt...
I thought a diagnosis would mean hope.
There is no cure.
Guilt entered my being like thousands of tiny needles.
Spiderwebs span within me,
making it impossible for me to unravel.
I wanted to hold this moment within my hands forever.
To change the course of our future.
To keep him close forever.
For the spider's web had not only encased me,
it was beginning to hold him captive too.
And my thousands of tiny needles would soon become his guilt also.
This body of mine would change our future in ways neither of us could control.
And while he left me naked in my web of shame,
I would forever feel a life of guilt.
I could not change.
The first signs of endometrial tissue were documented in medical texts
more than 4000 years ago.
During the Middle Ages,
women who suffered from this treacherous chronic pelvic pain
were often sent to psychiatric institutions,
being accused that their pain was imagined.
Today, it's been recorded as one of the most colossal misdiagnoses in human history.
One that over the centuries has subjected women to murder, madhouses
and lives of unremitting physical, social and psychological pain.
Today we struggle before you in the year 2020.
It still takes on average seven to ten years to diagnose.
For many of us, were still told it's all in our heads.
I want people to know, especially women,
that being in pain is not a normal part of being a woman.
All endometriosis sufferers are different.
I don't want young women to disregard their pain.
My illness is not a choice.
You don't have to be in extreme pain to have endometriosis.
Every month when I'm not at my best,
there's a reason for it.
Just because I don't look sick, doesn't mean I'm not sick.
I'm not faking it.
Be more supportive.
Don't judge me.
I want people to talk to me about it.
Talk about periods.
It's not just a bad period. It is so much more.
Just because I was okay yesterday doesn't mean I'm okay today.
We don't choose to be unreliable.
We haven't learned about endometriosis at school.
Educate girls and boys.
There needs to be more information
so that we can agree on it and we can figure out what it actually is.
We are not living. We are actually coping every day.
The girls with endometriosis, the pain is so bad,
we are not living, we are just trying to cope with everyday life.
I'm looking forward to this being understood.
For the right kind of help reaching every woman and every girl who has this affliction.
I hope that my generation can have a better diagnosis.
Not only to be recognised,
but for there to be a lot more awareness and eventually a cure.
Using less invasive methods.
That there is a cure for endometriosis in my lifetime.
By the time my daughter is at that age they will find a cure for it.
For Aboriginal and Torres Strait Islander women
who are undiagnosed or who are diagnosed with endometriosis,
that they will have access to the services that they need.
It will not cause infertility anymore.
There are good partners out there.
To know that you're not alone.
We are strong.
We are brave.
Hear my story.
Hear my pain.
Knowing what I know now,
if I could go back and talk to my 25-year-old self,
when I started having the symptoms but not knowing what it was,
that she is feeling real pain
and that, you know, she's ill.
She has a disease
and it's a chronic disease.
I wasn't diagnosed until I was 45.
And it explained so much of my own experience that it was a chronic affliction,
not a figment of my imagination.
I'm still unpacking and unwinding all the damage to my self-perception and self-worth
that not knowing and self-blame has caused.
We must put an end to this insidious disease.
Subtitles Kerri Ann Foweraker
