- [Cameraperson] You okay?

You want me to keep filming?

- Yeah.

(car engine purring) - Can you slow down?

- [Driver] We're almost there.

(workers chattering) (TV commentator prattling) (sad music) (sad music continues) - I don't exactly trust her.

I don't exactly trust her telling me that everything's fine.

- [Cameraperson] Yeah.

It seems to be one of the main things of this, right?

You come in and they're like, oh, this mystery disease.

We don't know what to do about it, and you're not dying or you don't look like you're dying, so bye.

- Follow up with your ob gyn.

That's not anything we haven't heard before.

- Yep.

- I don't know.

For years now, I've been sent to every specialist that makes sense based on my symptoms.

OBGYNs, pulmonologists, cardiologists.

They don't see a problem based on their specialty.

No one's looking at the big picture and so now what am I supposed to do to get better?

The biggest struggle is it basically strips me of all of my coping mechanisms.

When I'm stressed, I exercise.

When I have extra energy, I exercise.

When I'm tired, I exercise.

I don't really have a place to kind of escape to.

There's nowhere for me to do that when I can't exercise.

- The scariest thing is that Jenneh's also a nurse.

She's one of the most capable people that I know and certainly when it comes to any kind of medical thing, she should know.

(pills rattle) - I thought that maybe I'm dying or I have some kind of rare disease, but then I go online and find that millions of women are going through exactly what I'm going through.

(tentative music) The first time that I was told it could be endometriosis I'd never even heard of it, and this was six years into me being a nurse and really what I like to regard is really highly specialized in nationally acclaimed medical centers, and to me to just, for the first time be hearing about a disease that's so common.

Not in school, not through work.

This was the first time I'd ever heard of it and that's kind of crazy.

It's crazy to me.

It's really crazy to me.

- One out of every 10 women, okay 170 million women suffer from it.

- For those of you who don't know what endometriosis is I'm gonna read the definition straight from the internet.

Endometriosis is the abnormal growth of cells similar to those that form inside of the uterus but in a location outside of the uterus.

- It's literally internal bleeding and it causes so much pain at least for me.

- Some women have stage four endometriosis and have no pain and they don't find out that they have it until they can't get pregnant.

- [Jenneh] How can there be so much pain and no one seems to know about it?

Why doesn't my doctor know?

- It seems surreal to me that you get better information from a Facebook group than you do actual doctors.

I mean, absolutely bonkers.

I mean it doesn't even seem real.

I can't even believe I'm saying that.

(tentative music) (tentative music continues) - It took me almost 10 doctors to find someone that actually believed my pain.

- Dozens of doctors, I've seen so many.

- I probably saw more than 35 physicians.

- I've had blood tests.

I've had x-rays, I've had CT scans - Sugar level tests, ultrasounds, colonoscopies upper endoscopies.

- I don't even know some of the names of the tests that I've had because there's been so many - So many ultrasounds.

All were negative.

- I even had a laparoscopy which originally they say didn't show anything when in fact I had stage four endometriosis.