- There have been so many times when my doctors
have not believed me when I told them that I was in pain.
The first one happened when I was 15 years old
and during basketball practice, while running wind sprints,
I started to feel this horrible horrible pain in my abdomen.
You know how they say your body can't remember pain
but like I almost remember this pain so vividly.
I just thought I was dying.
- There was a big period of my life where
I was in chronic pain.
And went to my doctor time and time again.
I just wasn't taken seriously at all.
- About two years ago I had surgery
to correct some of my jaw problems.
After I woke up out of surgery I immediately knew
something was wrong.
- I had just installed my air conditioner, turned it on,
and I was talking to a friend, I was completely fine.
After we hung up and I tried to stand up,
I got really woozy, like literally the floor
and everything kind of flipped upside down.
My chest started getting really tight,
and I just felt like I couldn't get up off the floor.
I was on the floor for maybe 15 minutes
just trying to figure out what do I do?
- About two years ago, I started to develop a little pain
in my vagina.
Mostly during sex.
I didn't really think anything of it when it started.
A couple months later, it became almost unbearable.
At the first gynecologist that I went to,
I asked her if anything looked abnormal,
and she just laughed at me.
- Basically, I was getting very bad abdominal pain,
to the point where sometimes I would be paralyzed by pain.
There was one time I was just struck by this pain
and I couldn't move.
I just laid down on the airport floor
and they had to call the ambulance.
- I was having a ton of pain,
even though I was on a shit ton of morphine,
and I told the doctor this, and he said,
"Let's up the dosage of morphine
"and you just got out of surgery, there's gonna be pain."
But I knew, I fucking knew something was wrong.
- I laid off sex for a little bit,
and hoped that the pain would just go away.
It didn't. It just kept getting worse over the next year.
- My mom took me to the ER.
I had my letterman on the chair next to me
and I had an in memory button for a classmate
that had passed away.
And the doctor saw the button on my coat
and asked me what it was for.
And I told her that my friend had passed away.
Immediately her tone changed and she looked at my mom
and said, "I know what's going on here."
- Four days later when I went back in
to post-surgical check-up, the doctor went, "Huh."
And he told me, "Hey, in the 20-something years
"that I've been practicing this has never happened before."
So he actually had to go back in four days later
on New Years Day and re-do the surgery.
- Generally the pain was brushed off
as just being period pain, and I was just losing it,
because I was like, "Is this really just my period?"
Like, is this how it's going to be for the rest of my life?
- She looked at my mom and then looked at me and said,
"Your daughter is just sad.
"This is very common for teens to go through
"after one of their classmates passes away
"or goes through a tragedy."
She then took the button off of my letterman,
held it up to my face,
and told me to say goodbye to my friend.
- There was a whole crew of them.
There was maybe like ten EMTs.
The first thing that they said to me, they were like,
"Did you go through a bad breakup?
"Are you sure you're not pregnant?"
All of these belittling, demeaning things to say,
"I think that you're overreacting."
- I noticed I couldn't feel my face.
And the doctor said, "Sometimes post-anesthesia,
"that can happen, the feeling will come back."
Cut to three months later, still having this intense pain,
can't feel my face.
I go in for a check-in, and the doctor says,
"Sometimes it takes up to six months."
So six months go by, I come back in six months later,
and he says, "Well no, no, it's for sure
"just the anesthesia wearing off.
"It's kind of like, your face fell asleep."
What? Okay, I'm listening to this guy, he's in
such a specialized field I had no one else to listen to.
- So I looked at the button and I'm like, "Goodbye?"
She's like, "Say it like you mean it."
So I looked at the button and tried to do
whatever she was asking even though I still
wasn't totally sure and
just tried to say goodbye to this button.
Once I got through that I kind of just looked at her
and waited for her to tell me what test she was gonna run
or what she was gonna do to figure out
what had caused my pain, but instead she left the room
because she thought she had figured out why I had the pain.
- Eventually they were just kind of like,
"Well, you know, if you were actually all of these things,
you'd be this that and the other."
Kind of with an attitude.
And I was like, "Listen, I called you because I need help.
I didn't need you to chastise me
about what I'm going through."
And so they decided not to take me to the hospital
and they just kind of walked me back upstairs
and I think one more time they had asked me
if I was sure I wasn't pregnant.
- Even when we're paying top dollar to see specialists,
who you would assume would give you more time and more care,
it was like $250, $300 to see this person for five minutes,
and they said very similar things.
And it was only until I really broke down and demanded
that I get ultrasounds that they saw that
there was a bigger problem at hand.
It wasn't my period after all.
- Over the next year I saw four additional doctors.
Two of them also told me nothing was wrong with me.
One of them treated me for herpes but then
when that didn't work she said nothing was wrong with me.
The fourth one wanted to put me on antidepressants
because she thought it was all in my head.
- So a year goes by, I still have no feeling in my face,
and the doctor says, "You have what's called
"trigeminal neuralgia.
"A trigeminal nerve, during surgery,
"either the first one or the second one, we're not sure."
He cut the nerve that controls all the feeling in my face.
So not only will that feeling ever return to my face,
but the signals are all screwy coming from the brain,
so now I get intense, excruciating pain
in other areas of my face.
- It ended up being a cyst
that was the size of about 13 to 15 centimeters
and it was just sitting there that whole time,
getting worse, because it wasn't being treated.
Because apparently it was just period pain.
It was the most infuriating thing and
it honestly is five years of my life that I see as missing.
- Less than four years later,
I had very similar extreme pain.
This time I was running on a treadmill,
and the pain became so bad that I ended up
basically falling off the treadmill
and crawling my way to the women's bathroom to vomit.
My friend heard, called 911.
At the hospital, my dad met me there,
we waited hours to be seen by the time he came to see me,
and at that point he told me it's PMS
and take Advil next time.
I didn't know at the time, but I know now that
in both of those instances I actually had
ovarian cysts burst.
- They gave me some pamphlets.
There's not really a lot of information about the vagina.
What I learned in my own research is that
there's just blanket terms.
Vestibulina, vestibulitis, vulvadina,
and they're all just blanket terms for
"there's pain in different parts of your vagina."
But there's no cure.
The pamphlets say "use lube!"
Or "Try to think of something else, other than sex!"
- I started going to see some other doctors
and as soon as I went in and explained the situation
another doctor said, "I cannot believe that
that doctor did that technique on you.
People haven't done that in years."
- The one emotion I remember feeling the most
is just shame and embarrassment.
I felt stupid for going to the hospital both times.
I felt like I was being a crybaby,
and I felt like I was imagining the pain
that I had gone through, even though deep down
I knew that the pain I was experiencing was real.
And so the next time that it happened to me
I didn't want to go to the doctor.
I just wanted to lay alone in my room
and die if that's what it took.
- These are the people that are supposed to fix you.
They're the people that are supposed to help you.
And while I know what he did wasn't intentional,
when I decided to take legal action,
I was told that the statute of limitations
for this type of surgery was one year.
Guess how long he had told me to wait?
He kept saying, wait six months, wait a year.
Just wait a year. Come back after a year.
- I'm just so gobsmacked that doctors
don't know more about female anatomy,
because I've spoken to so many women about this
and they've all had very similar experiences.
So even once we found out that it was a cyst,
they told me everything under the sun.
They said it could be cancer.
- I've heard countless women's stories
about bad gynecology.
- When I was finally diagnosed with endometriosis
and also told that I had ovarian cysts
quite often on my ovaries, I felt vindicated but also angry.
I wanted to go back in time and look those doctors
in the eye and say, "You know what,
"something is wrong with me, and if you actually
"did your freaking job, you could have told me that."
- I just find it so crazy.
It's like, would you have asked a man,
"Oh are you going through some shit?"
"Did you have a really bad breakup with your girlfriend?"
I just, I can't imagine them asking
those series of questions to a man.
The hard thing about biases is that it's so subconscious.
It's so just like, rolls off of your tongue,
maybe because you did deal with someone
that was having a problem in that particular area.
But why does that then demean whatever it is
that they're going through?
- Sometimes women don't want to be seen as complaining,
or dramatic, or attention-seeking.
But why wouldn't you want attention when you're in pain?
Like, why do we make ourselves feel bad
that we want someone to listen to us?
Why do we get pushed aside and don't get me wrong,
I know doctors, they have the hardest jobs in the world,
but their job is also, changes peoples lives
and that can also mean for the worse.
So I think you gotta stop,
get that idea of being a complainer or an attention-seeker
or a hypochondriac out of your fucking head
because your health, when you lose that,
what else do you have?