Transcriber: Martina Tortorici Reviewer: David DeRuwe
Endometriosis has a nickname - we call it “the invisible illness.”
It is estimated that one in ten women suffers from endometriosis.
It takes roughly eight years for someone to get a proper diagnosis.
There is no cure.
It is among the 20 most painful diseases in the world,
according to the NHS,
and it's the leading cause of infertility in women.
So these are some facts I wrote down,
and I had this whole idea how I’m going to make this presentation
in PowerPoint and everything and clarify all of these facts.
But then I changed my mind
because last week I completely out of the blue ended up in the hospital,
and I decided the best presentation that I can give is me.
So let’s talk about what’s happening to me right now.
Let’s look at my body:
In this moment,
I am bleeding freaking waterfalls.
My uterus feels like it’s going to explode.
My back is killing me.
I’m on quite a few pain medications - all prescribed! They were all prescribed.
My brain is a bit foggy, and I’m a little bit nauseous.
But why is this happening to me?
I hope that everybody knows what the endometrium is.
So the uterus has a lining inside that’s called the endometrium.
If an egg is fertilized,
that’s where the egg is embedded and the baby grows and develops.
If it’s not fertilized,
this is the stuff that comes out, and we call it menstruation.
But in my case,
when I was a fetus, somebody -
we think it’s the Hox genes, but we’re not sure yet -
somebody made a mistake,
and they took pieces of this tissue and they spread it all around the body.
So now that I’m grown up, and I’m not a fetus anymore,
I have a whole body,
I have tissue that looks a lot like the endometrium
and behaves a lot like the endometrium -
everywhere.
Bladder, colon, intestines -
it can be found literally anywhere -
the lungs, even the brain.
It’s estrogen-dependent, so it follows the menstrual cycle,
which is why the symptoms follow the menstrual cycle,
and so every month, when I’m supposed to get my period,
my body panics.
What is this? What is all this stuff?
How am I supposed to push out all this stuff when it’s everywhere?
How are you supposed to push out a piece of tissue that’s in your lung
through your vagina?
It’s physically impossible!
But the body tries, and it’s chaos. It tries and it fails.
Thirty days later, it tries and it fails.
And it hurts like hell every freaking time.
That's endometriosis.
Now, you might think: “Well, no way.
She made this thing about the hospital up, and no way this is happening to her now.
Look at her standing on stage. She looks fine.”
I do look fine.
I look damn great.
I’m a woman, I can fake it.
Your idea of what a sick person looks like
does not correspond with the reality of what a sick person looks like.
Just because you have an idea
of what a chronically ill person looks like,
that does not mean that that is the objective truth.
And you should always keep that in mind.
This is a very big issue with many chronic illnesses,
especially with endometriosis,
because people don’t believe patients because they look fine.
Then you could also say: “Well wow, this poor girl,
she has this really rare, weird, complicated thing.”
Wrong.
I said in the beginning, one in ten women.
Now statistics, they tend to fly over our heads,
so this is what I want you to do:
Think of ten women that you know,
and I just want to clarify, during this talk,
I’m using the word woman in the sense of biological female,
so we’re talking about biological sex and not gender.
We're talking about people with uteruses.
So think of ten women that you know:
friends, family, coworkers, people that work at your local grocery store.
Statistically ...
Do you have the picture in your mind of ten women?
Statistically, one of them has endometriosis.
If you are a woman, think of nine others.
Statistically, one of you has endometriosis.
And maybe it’s you and you just don’t know yet.
Sounds like something that I should have told on Halloween, right?
Sounds like a proper horror story,
but it’s true.
And then you could also say:
“Come on, you know, this is something new.
Give science time, give medicine time to figure it out.”
Wrong again.
The first written evidence that we have of endometriosis,
the first ever written description of this illness,
is in the Hippocratic Corpus.
Hippocrates?
Ancient Greek guy?
So, we’ve known about this,
not for decades, not for centuries,
for thousands of years.
Is that a bit weird?
I want to recap before I move on, just very quickly.
So what have I said?
So it’s common; it’s not really rare at all.
It’s extremely painful,
one of the most painful things you can have.
It’s a major cause of infertility.
We’ve known about it for thousands of years.
It causes debilitating pain in women; it stops you from functioning.
But ...
we have no idea how it works,
why it happens,
how it develops,
we are nowhere near a cure,
we don’t have tools that can help us diagnose it faster or better,
we can’t even see it with ultrasound or CTs.
We know next to nothing about this.
Isn’t that weird?
And we don’t talk about it.
It’s not in the media.
It’s not in schools.
It’s not in sex ed.
When your parents sit you down to tell you about your period,
they don’t mention endometriosis.
Why?
When you go to a gynecologist for the first time ever,
they don’t sit you down and mention endometriosis.
They don’t tell you:
“Oh, watch out for this and these symptoms because maybe you have endometriosis.”
It would make sense that they did that because it's very likely, but they don't.
Why?
Don’t you think that’s weird?
I think there’s a lot of weird stuff concerning this illness.
It’s a common condition, but it’s the last thing on anyone’s mind.
This is because of the silence that surrounds it.
This silence begins with the silence that surrounds menstruation.
We don’t talk about menstruation, do we?
It’s still a taboo.
I think quite a few of you felt a bit uncomfortable
when I started talking about having my period right now and describing -
I could have gone into more detail.
I bet there are quite a few of you right now that feel weird looking at me
and imagining I’m bleeding from my vagina.
But guess what?
I bet a lot of you here are also bleeding right now.
And that should be OK; that’s normal.
Menstruation is an involuntary biological process
of a healthy female human being of reproductive age.
So why is it clouded in shame?
In silence?
Why do we hide it?
We even lie about it.
When you can’t do something when you’re on your period
or you don’t want to do something on your period,
you say: “Oh, I have a headache. I have a stomach bug. I have a flu.”
You will literally invent an illness
rather than say
that you’re going through a perfectly healthy physiological action
that’s just as necessary as breathing.
Isn’t that weird, too?
Our whole society has conditioned us
to think of menstruation as something dirty,
something to hide,
something that makes you weak.
We don’t even talk about it amongst each other, let alone men.
Ooh, men shouldn’t know that this exists, right?
Men should be hidden away from it.
Why?
Did you ever ask yourself why?
Why do we use codewords?
Why do we have so many metaphors for it?
And what does this have to do with endometriosis?
Well ...
how are you supposed to know what a normal menstrual cycle looks like
if you never talk about the menstrual cycle
and if nobody ever tells you?
If you identified with any of the symptoms that I mentioned in the beginning,
that is not a normal menstrual cycle.
Menstruation is not supposed to hurt.
You’re not supposed to be vomiting, having a fever, not being able to walk.
It can cause some discomfort.
It can be difficult.
It's not the best thing in the world.
But anything higher than that, you should talk to a doctor.
Maybe it's not endometriosis,
but the cycle is very sensitive to everything that happens in our bodies.
Something is up.
What happens when you do go and see a doctor and complain?
We have a lot of patient-driven research recently,
and without fault,
without any doubt,
internationally, we have come to one single conclusion:
The number one reason
for the delay of diagnosis of endometriosis
is the refusal of doctors to believe in their patients’ pain,
again, because we are conditioned to think of menstruation as something bad.
So you come to a gynecologist for the first time,
you mention your symptoms, and what will they tell you?
I’m not making this up for real.
They will tell you:
“Well, everybody has their period.
“It’s normal that it hurts.
You’re weak.
You’re exaggerating.
You’re making it up.
Are you depressed?
Are you stressed?
Are you anxious?
Want some Prozac?”
My favorite one?
“Get pregnant.”
Endometriosis is the leading cause of infertility -
get pregnant to fix it?
How exactly, how am I supposed to do that?
This is all because we live in a society where we don’t talk about it,
and we don’t have enough knowledge about it.
Taboo is lack of information.
Lack of information can be detrimental.
You cannot allow yourself
to have lack of information about your own body.
So what is it that’s the point of my talk, what I want you to do?
Once that I’m finally done talking, I want you to start talking.
Start talking about menstruation and start talking about endometriosis.
Men, too - you’re not excluded from this.
I hope none of you fell asleep midway, thinking that this doesn’t involve you.
In case you’ve forgotten, you do not actually come from a country -
you come from a vagina.
So it’s also your business.
OK?
Recognize the symptoms in others; recognize the symptoms in yourselves.
Talk about it.
Say the words out loud.
Menstruation, vagina, uterus, ovaries.
Those are not dirty words.
Those are not swear words.
Those are not bad words.
That is our biological reality,
and turning these words into the devil is dehumanizing the female body.
And that can be seriously detrimental for our health.
So start comparing periods.
Start asking people about their periods.
Start talking about periods.
Mention endometriosis.
If you know someone who gets sick every time they get their period,
ask them: “Have you heard of this thing called endometriosis?
Maybe you should check it out.”
Talk about it.
That’s all it takes to make a change.
Talk about it.
Just talk about it.
Thank you.
(Applause)