00:00:09.415 --> 00:00:11.535
I was 13,

00:00:13.255 --> 00:00:15.575
I started getting incredibly dizzy.

00:00:17.945 --> 00:00:20.255
Everything would just hurt. I wouldn't be able to walk.

00:00:22.085 --> 00:00:25.415
I've lost about half my body weight since it started.

00:00:27.755 --> 00:00:30.175
It just feels like someone is taking a blow torch

00:00:30.315 --> 00:00:32.095
and burning your insides.

00:00:40.375 --> 00:00:44.815
I found it incredibly hard to find someone, anyone,

00:00:45.155 --> 00:00:47.095
to listen to me and take me seriously

00:00:47.155 --> 00:00:48.495
and believe that

00:00:48.495 --> 00:00:51.175
what I was saying about my own body was true.

00:00:53.555 --> 00:00:55.575
If you look at the amount of women that it affects,

00:00:55.925 --> 00:00:57.095
it's a, it's a tragedy.

00:00:57.515 --> 00:01:01.495
It really is. People's lives are being ruined.

00:01:08.955 --> 00:01:10.255
The scariest thing is

00:01:10.255 --> 00:01:12.455
that no one even knows this is going on.

00:01:44.685 --> 00:01:45.185
You okay?

00:01:54.165 --> 00:01:56.425
You want me to keep filming? Yeah.

00:02:10.415 --> 00:02:14.025
Slow down. We're almost there.

00:02:15.995 --> 00:02:18.665
8, 6, 1 ER, patient Report.

00:02:46.635 --> 00:02:47.705
I don't exactly trust her.

00:02:48.275 --> 00:02:51.305
I don't exactly trust her telling me that everything's fine.

00:02:53.895 --> 00:02:56.545
Yeah. Seems to be one of the main things with this, right?

00:02:56.965 --> 00:02:59.285
You come in and they're like, oh, this mystery disease.

00:02:59.625 --> 00:03:01.365
We don't know what to do about it. And you're not dying.

00:03:01.465 --> 00:03:03.525
You don't look like you're dying. So bye.

00:03:07.665 --> 00:03:09.325
Follow up with your OBGYN.

00:03:09.325 --> 00:03:10.965
That's not anything we haven't heard before.

00:03:12.265 --> 00:03:15.005
Yep. I don't know.

00:03:16.365 --> 00:03:18.985
For years now, I've been sent to every specialist

00:03:18.985 --> 00:03:20.905
that makes sense based on my symptoms.

00:03:21.655 --> 00:03:24.465
OB-GYNs, pulmonologists, cardiologists,

00:03:25.135 --> 00:03:27.305
they don't see a problem based on their specialty.

00:03:28.085 --> 00:03:29.465
No one's looking at the big picture.

00:03:30.005 --> 00:03:33.345
And so now what am I supposed to do to get better?

00:03:36.485 --> 00:03:39.265
The biggest struggle is it basically strips me of all

00:03:39.265 --> 00:03:40.585
of my coping mechanisms.

00:03:41.015 --> 00:03:42.545
When I'm stressed, I exercise.

00:03:42.695 --> 00:03:45.105
When I have extra energy, I exercise.

00:03:45.105 --> 00:03:46.385
When I'm tired, I exercise.

00:03:47.065 --> 00:03:49.465
I don't really have a place to kind of escape to.

00:03:49.975 --> 00:03:52.545
There's nowhere for me to do that when I can't exercise.

00:03:54.485 --> 00:03:58.065
The scariest thing is that Jenneh's also a nurse.

00:03:58.555 --> 00:04:00.985
She's one of the most capable people that I know.

00:04:01.005 --> 00:04:02.625
And certainly when it comes to any kind

00:04:02.625 --> 00:04:04.705
of medical thing she should know,

00:04:11.985 --> 00:04:14.425
I thought that maybe I am dying

00:04:14.525 --> 00:04:16.545
or I have some kind of rare disease.

00:04:18.645 --> 00:04:19.785
But then I go online

00:04:19.805 --> 00:04:22.025
and find that millions of women are going

00:04:22.025 --> 00:04:23.305
through exactly what I'm going through.

00:04:29.685 --> 00:04:30.745
The first time

00:04:30.745 --> 00:04:32.265
that I was told it could be

00:04:32.295 --> 00:04:34.265
endometriosis, I'd never even heard of it.

00:04:36.325 --> 00:04:39.665
And this was six years into me being a nurse

00:04:39.685 --> 00:04:41.985
and really what I like

00:04:41.985 --> 00:04:45.185
to regard as really highly specialized and nationally

00:04:45.185 --> 00:04:46.265
acclaimed medical centers.

00:04:46.405 --> 00:04:50.585
And it to me to just for the first time,

00:04:50.605 --> 00:04:52.705
be hearing about a disease that's so common,

00:04:53.325 --> 00:04:55.545
not in school, not through work.

00:04:55.745 --> 00:04:57.465
I, this was the first time I'd ever heard of it.

00:04:57.565 --> 00:05:01.595
And that's kind of crazy. It's crazy to me.

00:05:01.945 --> 00:05:02.955
It's really crazy to me.

00:05:04.445 --> 00:05:06.905
One out of every ten women, okay,

00:05:07.705 --> 00:05:10.625
170 million women suffer from it. For

00:05:10.625 --> 00:05:12.585
those of you who don't know what endometriosis is,

00:05:12.725 --> 00:05:14.985
I'm gonna read the definition straight from the internet.

00:05:15.175 --> 00:05:18.305
Endometriosis is the abnormal growth of cells similar

00:05:18.365 --> 00:05:20.465
to those that form inside of the uterus

00:05:20.525 --> 00:05:22.665
but in a location outside of the uterus.

00:05:22.815 --> 00:05:24.545
It's literally internal bleeding.

00:05:25.285 --> 00:05:28.305
And it causes so much pain at least for me. Some

00:05:28.305 --> 00:05:31.785
women have stage four endometriosis and have no pain,

00:05:31.885 --> 00:05:33.385
and they don't find out that they have it

00:05:33.515 --> 00:05:34.985
until they can't get pregnant.

00:05:37.365 --> 00:05:38.625
How can there be so much pain

00:05:38.625 --> 00:05:39.945
and no one seems to know about it?

00:05:40.565 --> 00:05:41.825
Why doesn't my doctor know?

00:05:42.885 --> 00:05:44.185
It seems surreal to me

00:05:44.185 --> 00:05:46.385
that you get better information from a Facebook group

00:05:46.415 --> 00:05:47.545
than you do actual doctors.

00:05:47.665 --> 00:05:50.545
I mean, absolutely bonkers.

00:05:50.705 --> 00:05:54.145
I mean, it, I, it doesn't even seem real.

00:05:54.225 --> 00:05:55.305
I can't even believe I'm saying that.

00:06:09.265 --> 00:06:12.285
It took me almost 10 doctors to find someone

00:06:12.285 --> 00:06:14.365
that actually believed my pain.

00:06:15.665 --> 00:06:18.485
Dozens of doctors. I've seen so many.

00:06:19.485 --> 00:06:22.205
I probably saw more than 35 physicians.

00:06:22.555 --> 00:06:27.045
I've had blood tests. I've had x-rays, I've had CT scans,

00:06:27.175 --> 00:06:30.685
Sugar level tests, ultrasounds, colonoscopies,

00:06:30.735 --> 00:06:31.845
upper endoscopies.

00:06:32.165 --> 00:06:33.965
I don't even know some of the names of the tests

00:06:33.965 --> 00:06:36.725
that I've had because there's been so many.

00:06:37.305 --> 00:06:40.405
So many ultrasounds, all were negative.

00:06:40.765 --> 00:06:44.045
I even had a laparoscopy, which originally

00:06:44.595 --> 00:06:48.245
they say didn't show anything when in fact I had stage

00:06:48.245 --> 00:06:49.365
four endometriosis.

00:06:51.105 --> 00:06:53.165
If something doesn't make sense, it's

00:06:53.165 --> 00:06:55.965
because there's ignorance and misunderstanding

00:06:56.905 --> 00:06:59.995
and something doesn't make sense because there's ignorance

00:06:59.995 --> 00:07:02.195
and misunderstanding among the people taking care of women

00:07:02.195 --> 00:07:03.195
with endometriosis.

00:07:03.215 --> 00:07:05.755
The doctors believe the wrong things.

00:07:06.705 --> 00:07:09.595
I'll get internal medicine doctors who don't know what

00:07:09.595 --> 00:07:13.355
to look for, or I'll get gastroenterologists who say, oh,

00:07:13.355 --> 00:07:14.595
endometriosis on the bowel.

00:07:14.775 --> 00:07:16.875
Oh, it can't be that. Never. That's never happens.

00:07:17.345 --> 00:07:19.315
Meanwhile, I've done over 400 bowel

00:07:19.515 --> 00:07:20.675
resections for endo on the bowel.

00:07:21.055 --> 00:07:22.875
So there's a huge misconception

00:07:23.175 --> 00:07:25.195
that's probably borne out early in their

00:07:25.395 --> 00:07:26.835
training that persists.

00:07:41.935 --> 00:07:46.315
Hi babe. Hello. So he is my chauffeur.

00:07:47.495 --> 00:07:48.755
My chauffeur to everything.

00:07:49.995 --> 00:07:51.995
'cause I can't drive much anymore.

00:07:59.135 --> 00:08:02.875
Hi, today's a rough day.

00:08:03.255 --> 00:08:05.555
Things seem to be getting worse and worse by the day.

00:08:07.895 --> 00:08:08.115
Um,

00:08:12.215 --> 00:08:13.235
but what can you do?

00:08:13.805 --> 00:08:14.805
Right?

00:08:20.495 --> 00:08:22.315
So she's definitely a different person.

00:08:22.785 --> 00:08:27.595
Like when we first met, she loved

00:08:27.595 --> 00:08:28.635
to do so much stuff,

00:08:36.455 --> 00:08:39.915
and as years went on, then it began to get worse.

00:08:42.335 --> 00:08:45.955
Now the pain is just, just like all the time.

00:08:52.375 --> 00:08:54.235
In that area, but a little, yeah,

00:08:54.305 --> 00:08:55.885
like a little lower. Oohh.

00:08:56.075 --> 00:08:59.045
That one, like just right here that I just connected. Yeah.

00:09:01.275 --> 00:09:05.565
Holy crap. I know. Holy crap. That one hurt. Yeah.

00:09:17.665 --> 00:09:19.485
She takes care of children with autism,

00:09:20.705 --> 00:09:24.485
and the disease basically has made it

00:09:24.575 --> 00:09:25.885
impossible for her to work.

00:09:29.265 --> 00:09:31.205
I'm the owner and operator of Nurturing Families,

00:09:31.425 --> 00:09:35.205
and I offer infant and pediatric massage classes.

00:09:35.425 --> 00:09:37.645
My business was my baby, right?

00:09:37.805 --> 00:09:40.685
I built it from nothing, and I loved what I did,

00:09:45.715 --> 00:09:49.005
even though I know that it's not, it feels like

00:09:49.625 --> 00:09:51.125
giving up a little bit.

00:10:05.505 --> 00:10:07.925
It would've made a huge difference for Laura to be able

00:10:07.925 --> 00:10:11.725
to be diagnosed at 13, but she wasn't.

00:10:13.045 --> 00:10:16.765
I find that hard to believe in this world. That a woman

00:10:16.785 --> 00:10:18.725
of 30 is just being diagnosed.

00:10:25.095 --> 00:10:27.605
Let's talk about what's taught about endometriosis.

00:10:28.035 --> 00:10:30.565
Virtually nothing. It's certainly not required

00:10:30.905 --> 00:10:33.205
to be in the medical education component.

00:10:33.465 --> 00:10:34.805
And then if we look in the books,

00:10:34.835 --> 00:10:36.005
what are, what are we teaching?

00:10:36.005 --> 00:10:39.565
Well, let's see. Um, you know that it's a disease

00:10:39.565 --> 00:10:41.565
of normal endometrium in abnormal places,

00:10:41.865 --> 00:10:44.725
and that it's cured by hysterectomy, menopause, pregnancy.

00:10:45.825 --> 00:10:48.045
All of these things are based on an outdated theory

00:10:48.045 --> 00:10:50.245
that if you stop periods, the disease goes away.

00:10:51.725 --> 00:10:53.985
But pregnancy is not a cure for endometriosis.

00:10:54.545 --> 00:10:56.625
Hysterectomy is not a cure for endometriosis.

00:10:57.015 --> 00:10:58.985
Over a hundred thousand hysterectomies are

00:10:58.985 --> 00:11:00.305
performed every year for the disease

00:11:00.305 --> 00:11:03.505
and the most outrageous thing is that most are unnecessary.

00:11:05.135 --> 00:11:06.745
This goes back a hundred years.

00:11:08.005 --> 00:11:10.705
And remember, menstruation is only a part of growing up.

00:11:11.165 --> 00:11:13.145
As you grow, your body changes from that

00:11:13.145 --> 00:11:15.585
of a young girl to that of a woman. Yes, Anne,

00:11:15.935 --> 00:11:17.585
Miss Jenson, what about dancing?

00:11:18.245 --> 00:11:19.305
Can you when you're menstruating?

00:11:19.885 --> 00:11:21.705
Yes, you can with moderation,

00:11:21.805 --> 00:11:25.585
but it's not a very good idea to skate or ride horseback

00:11:26.005 --> 00:11:28.745
or play fast games like volleyball and basketball

00:11:29.045 --> 00:11:31.145
or do strenuous dancing like square dancing.

00:11:32.775 --> 00:11:36.825
Part of the problem is when you talk about endometriosis,

00:11:37.135 --> 00:11:38.225
they say, well, what is that?

00:11:38.605 --> 00:11:42.145
And you say, well, you know, it's this, this presence

00:11:42.145 --> 00:11:43.945
of this disease that's characterized

00:11:44.445 --> 00:11:45.625
by these, oh, endometrial.

00:11:45.685 --> 00:11:47.305
Oh my God. No. Period. No.

00:12:26.465 --> 00:12:30.965
The reason why I think periods are still so taboo today is

00:12:30.965 --> 00:12:35.765
that we want women to be sexual objects

00:12:35.865 --> 00:12:37.245
for the consumption of somebody else.

00:12:38.105 --> 00:12:40.805
And a period doesn't go hand in hand with that.

00:12:47.945 --> 00:12:51.525
Stigma is one of the most effective forms of oppression.

00:12:51.705 --> 00:12:55.005
Why? Because it denies us the vocabulary to talk comfortably

00:12:55.225 --> 00:12:56.845
and confidently about our own bodies.

00:12:57.275 --> 00:12:59.805
That is what's happened when it comes to women's health,

00:13:00.195 --> 00:13:02.685
when it comes to endometriosis, when it comes

00:13:02.705 --> 00:13:05.165
to us feeling like we deserve to have access

00:13:05.165 --> 00:13:06.565
to information about our own bodies.

00:13:07.105 --> 00:13:09.085
But it's constantly shrouded in mystery.

00:13:09.515 --> 00:13:10.805
It's extremely frustrating.

00:13:10.985 --> 00:13:14.405
My question is, my fiance has a multitude of conditions.

00:13:14.505 --> 00:13:18.445
She has IC, endometriosis, lactose intolerance.

00:13:19.015 --> 00:13:21.085
These are all, these are all sort of

00:13:21.085 --> 00:13:22.605
what we call functional disorders.

00:13:22.815 --> 00:13:24.005
Everything you mention,

00:13:24.005 --> 00:13:27.485
everything you mention are things that actually aren't

00:13:28.155 --> 00:13:29.485
discernibly pathological.

00:13:29.485 --> 00:13:30.685
They're just sort of, there's

00:13:30.685 --> 00:13:32.405
what we call garbage bag diagnoses.

00:13:32.405 --> 00:13:33.525
When you can't think of anything

00:13:33.525 --> 00:13:34.565
else, you go, ah, it's that.

00:13:52.625 --> 00:13:54.365
The difference in how I was treated

00:13:54.545 --> 00:13:56.445
by my doctors when I would have my boyfriend

00:13:56.445 --> 00:14:00.045
with me at my appointments was really a night and day to me.

00:14:01.475 --> 00:14:03.245
When he would be there, it was like

00:14:03.435 --> 00:14:04.725
they listened in a different way.

00:14:04.955 --> 00:14:06.085
Sometimes when we would go

00:14:06.085 --> 00:14:07.765
to the ER, I would just let him talk

00:14:07.765 --> 00:14:12.685
for me. If 1 in 10 men had this disease,

00:14:12.685 --> 00:14:14.685
we would be nowhere near

00:14:14.685 --> 00:14:15.965
where we are right now with women.

00:14:16.315 --> 00:14:19.285
Like, seriously, if, if there was a disease for men

00:14:19.675 --> 00:14:23.685
that the only treatment, which isn't even a real treatment,

00:14:23.745 --> 00:14:25.845
and they may very well still have problems

00:14:25.845 --> 00:14:27.765
after it was to chop their balls off.

00:14:28.445 --> 00:14:30.965
Honestly, if that were the case. I think we'd figure it out.

00:14:30.965 --> 00:14:33.405
Right? More research dollars, et cetera, et cetera.

00:14:33.405 --> 00:14:35.285
For sure. For sure. For sure. Yeah. Yeah.

00:14:37.285 --> 00:14:40.285
Research funding for endometriosis is woefully inadequate.

00:14:41.125 --> 00:14:42.165
Diabetes, for instance,

00:14:42.275 --> 00:14:45.725
gets more than 1 billion in healthcare dollars while a

00:14:45.725 --> 00:14:47.165
disease like endometriosis,

00:14:47.295 --> 00:14:48.965
which afflicts the same percentage

00:14:48.965 --> 00:14:51.765
of women in the US gets $7 million.

00:14:52.375 --> 00:14:55.245
Which shows that the disease is a largely ignored

00:14:55.425 --> 00:14:56.765
aspect in women's healthcare.

00:14:57.315 --> 00:15:01.365
This is insane because up to 50% of infertility is due

00:15:01.365 --> 00:15:02.525
to endometriosis.

00:15:03.065 --> 00:15:05.285
And much of this could be avoided if endometriosis

00:15:05.285 --> 00:15:06.325
was diagnosed earlier.

00:15:28.445 --> 00:15:32.565
I have this itch all the time to, to want to go to my studio

00:15:32.705 --> 00:15:36.565
and, and draw because it, it is something

00:15:36.565 --> 00:15:38.205
that is therapeutic for me.

00:15:39.275 --> 00:15:40.325
When I don't do it

00:15:40.485 --> 00:15:44.045
I feel there's like, um, there's just something like pent up

00:15:44.045 --> 00:15:45.805
and I don't feel comfortable.

00:15:45.805 --> 00:15:47.525
Like physically I feel uncomfortable

00:15:47.805 --> 00:15:50.365
because I have these images in my head that I,

00:15:50.635 --> 00:15:51.725
that just get stuck.

00:15:54.565 --> 00:15:57.085
A lot of my work is about femininity

00:15:58.065 --> 00:16:00.245
or even the lack of it.

00:16:04.495 --> 00:16:07.085
Going through all those health issues,

00:16:07.825 --> 00:16:11.205
you lose that side of your self where you feel like a woman.

00:16:22.495 --> 00:16:25.085
Eventually, I mustered have enough courage

00:16:25.145 --> 00:16:26.525
to ask if she wanted to meet up.

00:16:26.705 --> 00:16:29.565
And she said, Edgardo? And I kind of like leaned in

00:16:29.625 --> 00:16:34.245
and the first thought in my mind was, oh, this is

00:16:34.265 --> 00:16:35.645
so not fair, because she looks

00:16:35.665 --> 00:16:38.005
so much prettier in person than she did in the pictures.

00:16:38.485 --> 00:16:40.845
I was like, oh man, she's so pretty.

00:16:41.965 --> 00:16:43.245
I know she's not gonna like me.

00:16:43.395 --> 00:16:47.925
This is not gonna go anywhere. Gosh. Okay. Hi. Hi.

00:16:48.185 --> 00:16:49.485
I'm Edgardo. How are you doing?

00:16:53.765 --> 00:16:55.205
I want to have a family with him.

00:16:55.405 --> 00:16:57.245
I really, really wanna have a family with him,

00:17:00.665 --> 00:17:04.605
but I don't know, with endometriosis, not knowing whether

00:17:04.605 --> 00:17:08.645
or not that's possible, is he gonna be disappointed?

00:17:10.065 --> 00:17:12.325
Are we gonna keep trying until it's just,

00:17:12.425 --> 00:17:14.005
you know, pointless?

00:17:15.845 --> 00:17:19.645
I don't know. Maybe it'll affect our relationship.

00:17:21.475 --> 00:17:24.925
There's underlying sadness throughout most of my work,

00:17:25.345 --> 00:17:29.085
and that is that, um, lack of motherhood

00:17:29.185 --> 00:17:31.085
or, you know,

00:17:33.305 --> 00:17:34.725
not being able to have children.

00:17:36.505 --> 00:17:40.805
Um, yeah, there's a, weight.

00:17:51.785 --> 00:17:52.965
Here's Emily dancing.

00:17:53.935 --> 00:17:57.685
Emily likes to dance. She's a good little dancer too.

00:17:59.075 --> 00:17:59.565
Woo-hoo.

00:18:03.585 --> 00:18:04.245
Go Emily.

00:18:07.105 --> 00:18:10.405
Hi. Emily's 16.

00:18:11.185 --> 00:18:14.285
Woo! Has her permit. She's driving around New Hampshire.

00:18:15.585 --> 00:18:20.405
Here she goes. On the open road. How's it feel, Em?

00:18:20.895 --> 00:18:25.285
It feels awesome. Love you buggy. It's freedom.

00:18:26.465 --> 00:18:28.085
My little girl is all grown up.

00:18:39.355 --> 00:18:41.815
Oh my gosh. Oh my gosh.

00:18:41.855 --> 00:18:43.135
I feel like a knife going through my stomach.

00:18:45.855 --> 00:18:48.575
I.. I am having a full-on pain attack right now,

00:18:48.675 --> 00:18:51.135
and I'm driving and I'm at a stoplight right now,

00:18:51.155 --> 00:18:53.175
but I've been driving for 45 minutes

00:18:54.275 --> 00:18:55.935
and it's, it's incredible.

00:18:56.165 --> 00:18:57.815
Like how hard...

00:19:16.935 --> 00:19:18.495
I fake a lot of my life.

00:19:19.885 --> 00:19:20.885
Hey, Mr. Bennett.

00:19:26.125 --> 00:19:29.255
When I get pain in class, I just try to slap on a smile.

00:19:29.515 --> 00:19:31.175
But honestly, it's so forced

00:19:31.175 --> 00:19:33.455
that I usually just go into myself

00:19:33.515 --> 00:19:35.575
and I just, I get really quiet.

00:19:35.695 --> 00:19:37.535
I don't make eye contact with anyone. And I'm sure

00:19:37.535 --> 00:19:38.535
people notice.

00:19:39.155 --> 00:19:41.215
So I think we're gonna go ahead and start English class now and

00:19:42.595 --> 00:19:44.095
the way that typically works is people

00:19:44.125 --> 00:19:45.295
stop talking to each other.

00:19:46.965 --> 00:19:47.895
I just want to be normal.

00:19:52.595 --> 00:19:53.695
We had the opportunity

00:19:53.755 --> 00:19:55.935
to see the best doctors in the world. Okay,

00:19:56.275 --> 00:19:58.015
Um, Emily up top. We're seeing

00:19:58.015 --> 00:19:59.375
the chief of these departments.

00:19:59.825 --> 00:20:01.175
We're not seeing some resident

00:20:01.635 --> 00:20:02.975
and okay, we're doing everything these

00:20:02.975 --> 00:20:04.095
doctors are telling us.

00:20:04.595 --> 00:20:07.535
So she's tried birth control pills, different painkillers,

00:20:07.535 --> 00:20:09.895
nothing's working, and she's not getting better.

00:20:10.595 --> 00:20:14.295
So what do we do? There's always that search

00:20:14.395 --> 00:20:15.535
for the solution.

00:20:16.455 --> 00:20:19.415
I think I've been on about 30 different types

00:20:19.475 --> 00:20:21.095
of oral contraceptives.

00:20:21.275 --> 00:20:24.735
The combined pill, the progesterone only pill, you know,

00:20:25.055 --> 00:20:27.975
a low estrogen formulation of a pill.

00:20:28.115 --> 00:20:30.415
The idea was if they stopped my period

00:20:30.635 --> 00:20:34.695
or it came less frequently that I wouldn't have pain.

00:20:35.115 --> 00:20:38.775
Before I was ever offered anything to try

00:20:38.775 --> 00:20:40.575
to mitigate the pain

00:20:40.895 --> 00:20:45.415
I was offered things like Ativan, so like sedatives

00:20:45.415 --> 00:20:46.415
or antidepressants.

00:20:46.725 --> 00:20:49.925
I've been prescribed painkillers, pretty heavy duty ones

00:20:50.235 --> 00:20:52.045
that made me feel pretty suicidal

00:20:52.625 --> 00:20:54.445
As a teenager

00:20:54.605 --> 00:20:58.925
I didn't fully understand what they were doing to my body.

00:21:27.235 --> 00:21:29.005
I've been on meds since I was 12,

00:21:29.195 --> 00:21:31.005
like heavy duty hormone things, right?

00:21:31.545 --> 00:21:32.965
So my body's never had a break.

00:21:34.755 --> 00:21:37.965
It's just been one big chemical overload.

00:21:45.705 --> 00:21:48.725
Hey, this is Brad. It's Saturday the 21st.

00:21:50.105 --> 00:21:54.285
My wife just was getting ready to go out.

00:21:54.505 --> 00:21:56.565
She took some medicine

00:21:56.785 --> 00:21:59.525
and she's twitching going into spasms.

00:22:00.385 --> 00:22:02.245
Her dad's here comforting her.

00:22:02.625 --> 00:22:02.845
Oh...

00:22:07.655 --> 00:22:09.525
We're using the same medicines that have been

00:22:09.525 --> 00:22:10.685
around about 30 years.

00:22:11.035 --> 00:22:13.605
They don't make endometriosis go away.

00:22:13.605 --> 00:22:15.285
They don't melt endometriosis.

00:22:15.945 --> 00:22:19.765
And at best, perhaps the symptoms may be slightly better,

00:22:20.185 --> 00:22:22.765
but the side effects are

00:22:23.365 --> 00:22:25.485
probably worse than the benefit than the women are

00:22:25.485 --> 00:22:26.845
receiving from the medicine.

00:22:27.305 --> 00:22:29.285
My teeth were starting to loosen.

00:22:29.885 --> 00:22:32.245
I would have, um, I could just feel 'em kind

00:22:32.245 --> 00:22:33.325
of cracking, like moving.

00:22:33.765 --> 00:22:35.205
I run my fingers through my hair.

00:22:35.405 --> 00:22:38.125
I am losing 10 to 20 strands, eating

00:22:38.445 --> 00:22:39.925
a ton hot flashes all the time.

00:22:40.045 --> 00:22:41.125
I think I'm having one right now.

00:22:41.725 --> 00:22:45.685
A really foggy brain, joint pain, fatigue, depression.

00:22:45.795 --> 00:22:49.085
It's like PMS on steroids and crack and cocaine

00:22:49.185 --> 00:22:51.125
and every possible stimulant. Ugh.

00:22:51.285 --> 00:22:55.925
I felt like I got hit by a bus, the Lupron bus.

00:22:56.825 --> 00:22:58.605
And I just have to remember that this is,

00:22:58.715 --> 00:23:02.845
this is a process and every single part

00:23:02.845 --> 00:23:05.045
of it is meaningful.

00:23:05.625 --> 00:23:06.205
And, um,

00:23:11.725 --> 00:23:14.655
that it might take a while before I,

00:23:16.975 --> 00:23:19.895
before I get all, all of all of who I was back.

00:23:21.115 --> 00:23:22.115
So

00:24:10.985 --> 00:24:12.605
it is like a pretty light plus sign.

00:24:14.785 --> 00:24:18.365
Do you think this a horizontal line's not showing up?

00:24:18.395 --> 00:24:19.885
It's definitely a horizontal line.

00:24:21.655 --> 00:24:24.375
I think this is a good sign to see a doctor.

00:24:29.955 --> 00:24:30.615
How do you feel?

00:24:33.275 --> 00:24:35.615
That's good. Yeah, it's very good.

00:24:38.485 --> 00:24:39.095
Love you.

00:24:44.975 --> 00:24:47.735
Whatever happens. I love you very much.

00:24:52.045 --> 00:24:55.215
Okay. I think that's a good idea.

00:24:56.495 --> 00:25:00.015
You think that's a good idea? Yeah.

00:25:00.675 --> 00:25:02.295
You should always love me no matter what happens.

00:25:07.305 --> 00:25:11.295
Looks good. How you feel,

00:25:11.295 --> 00:25:12.935
mommy? Happy.

00:25:15.425 --> 00:25:17.815
Being told in your twenties that you're never going

00:25:17.815 --> 00:25:20.655
to get pregnant or ever have a family, which, you know,

00:25:20.655 --> 00:25:21.975
that's pretty devastating.

00:25:22.675 --> 00:25:25.215
So getting pregnant was a

00:25:25.455 --> 00:25:26.455
surprise.

00:25:28.415 --> 00:25:29.275
So we got a heartbeat.

00:25:33.775 --> 00:25:34.435
I'm so happy.

00:25:36.415 --> 00:25:39.675
Oh my gosh. Yeah.

00:26:22.475 --> 00:26:24.475
I feel nervous. I'm not gonna lie.

00:26:25.465 --> 00:26:27.835
This is a definitive point on what we do next

00:26:28.015 --> 00:26:30.355
and what we do next is not a good option.

00:26:30.905 --> 00:26:31.995
They all have side effects,

00:26:32.415 --> 00:26:35.675
so we're just feeling like she's okay.

00:26:35.765 --> 00:26:38.155
She's not great on what she's doing now, but she's okay.

00:26:38.975 --> 00:26:41.475
And if we switch it up, she might not be okay.

00:26:42.135 --> 00:26:45.845
And that's the scary thing. Just watching her. Are you sure?

00:26:45.845 --> 00:26:49.965
That's right? 90 pounds almost 94. 94. 94 pounds. Seriously?

00:26:49.985 --> 00:26:53.525
Mm-Hmm. So she's dropped almost 10 pounds in the last...

00:26:53.705 --> 00:26:55.685
93.72.

00:26:56.545 --> 00:26:59.085
Oh my gosh. Emily, that is really low. Yeah.

00:26:59.975 --> 00:27:04.005
Ready? Okay. Are earrings?

00:27:04.585 --> 00:27:06.405
Oh yeah, earrings. Yeah, earrings are okay.

00:27:06.755 --> 00:27:07.965
Okay. All right. Love you.

00:27:20.785 --> 00:27:22.485
It is like a weird feeling to be here.

00:27:22.565 --> 00:27:25.645
I have to say, like, I think I get anxiety.

00:27:34.865 --> 00:27:38.845
Ugh. It's like you get going on a great trajectory,

00:27:39.065 --> 00:27:42.725
you know, it's like, just goes great for a while

00:27:42.745 --> 00:27:46.245
and then, uh, when you have to mix it up, it gets scary.

00:28:29.895 --> 00:28:31.115
If medications don't work,

00:28:31.295 --> 00:28:32.995
the next step is usually to have surgery.

00:28:36.425 --> 00:28:39.235
Perfect. Let's have you fill ... Okay. Thanks.

00:28:39.365 --> 00:28:42.035
Thank you. So I went to my OBGYN.

00:28:43.015 --> 00:28:44.755
He did what's called an ablation surgery

00:28:44.845 --> 00:28:46.795
where he burned the endometriosis out.

00:28:48.815 --> 00:28:51.795
How are you doing today? I've been better.

00:28:54.725 --> 00:28:55.725
Let's see.

00:28:57.015 --> 00:28:58.995
Uh, so this is my first post-op picture.

00:28:59.395 --> 00:29:00.915
I just wanted to get an idea of

00:29:00.915 --> 00:29:01.915
what my bandages looked like.

00:29:01.975 --> 00:29:05.475
The nurse in me wanted to see, to assess my wounds.

00:29:05.735 --> 00:29:08.915
Um, I think my surgery lasted about 40 minutes.

00:29:09.815 --> 00:29:12.915
Um, and my doctor actually told me that

00:29:13.905 --> 00:29:15.475
when I woke up from anesthesia,

00:29:15.615 --> 00:29:16.875
he told me everything looked good.

00:29:17.055 --> 00:29:20.435
We didn't see anything. And then four days

00:29:20.765 --> 00:29:23.115
after my ablation, I, I got my first period

00:29:23.295 --> 00:29:25.155
and it was just excruciating.

00:29:25.335 --> 00:29:27.915
And I just remember thinking whatever he did didn't work.

00:29:28.235 --> 00:29:29.915
because this feels exactly the same as it did before.

00:29:31.055 --> 00:29:34.315
And, uh, that was kind of,

00:29:34.715 --> 00:29:37.715
I think the first point when I realized this is gonna be

00:29:38.505 --> 00:29:40.435
more difficult of a thing to take care

00:29:40.435 --> 00:29:42.405
of than I anticipated it was going to be.

00:29:43.865 --> 00:29:45.485
It doesn't get as much attention

00:29:45.485 --> 00:29:46.685
because it doesn't kill you.

00:29:46.745 --> 00:29:50.365
But what's not taken into account is just the devastation

00:29:50.365 --> 00:29:52.565
that it does still cause in, in women's lives.

00:29:53.195 --> 00:29:55.285
Careers that have to be given up on

00:29:55.465 --> 00:29:59.245
and, you know, futures that completely have to be rewritten

00:29:59.955 --> 00:30:01.245
because of the disease.

00:30:02.105 --> 00:30:03.405
So it may not kill you physically,

00:30:03.465 --> 00:30:05.805
but I know that there are a lot of women

00:30:05.825 --> 00:30:08.205
who are living very different lives than

00:30:08.205 --> 00:30:09.645
what they thought that they would be living.

00:30:15.035 --> 00:30:17.685
Unfortunately, most gynecologists are not trained in

00:30:17.925 --> 00:30:19.405
advanced endometriosis cases.

00:30:19.985 --> 00:30:23.125
So maybe we search out who the best doctors are in this.

00:30:23.305 --> 00:30:25.605
Mmm hmm. And just maybe do some calls.

00:30:26.145 --> 00:30:27.885
I'm not gonna lie to you. Like, it freaks me out

00:30:27.885 --> 00:30:28.925
that I have to get another surgery.

00:30:28.995 --> 00:30:31.045
Like I already have scars from my other two.

00:30:31.315 --> 00:30:34.325
Like, and it was a horrible recovery. I know.

00:30:35.475 --> 00:30:36.885
Surgery is really scary.

00:31:07.585 --> 00:31:10.245
Hi Orrin. It's Mary Alice. Hi.

00:31:11.565 --> 00:31:13.365
I, I've passed more healthcare bills

00:31:13.365 --> 00:31:14.645
than anybody in Congress.

00:31:15.685 --> 00:31:18.405
I hardly ever heard of this until

00:31:19.025 --> 00:31:20.925
my granddaughter explained it to me.

00:31:21.705 --> 00:31:23.205
We need to make people aware.

00:31:23.405 --> 00:31:24.485
I mean, you know,

00:31:24.515 --> 00:31:27.645
this is a very widespread problem for an awful lot of women.

00:31:27.735 --> 00:31:29.845
We've gotta do something about this and I'm all for it.

00:31:30.305 --> 00:31:32.405
You've got to guide me and help me, that's all.

00:31:33.035 --> 00:31:34.725
It's important to kind of rally around

00:31:35.315 --> 00:31:38.205
more prominent members of Congress to recognize

00:31:38.205 --> 00:31:39.365
that this is a big deal.

00:31:39.585 --> 00:31:42.445
We have some excellent people on the Democrat side.

00:31:42.565 --> 00:31:45.245
I think Elizabeth Warren is a good one. She's a firebrand.

00:31:45.665 --> 00:31:47.205
She irritates most Republicans,

00:31:47.205 --> 00:31:48.565
but she does not irritate me.

00:31:48.905 --> 00:31:52.365
So I, I'd be very happy to work with her and, and get her.

00:31:52.685 --> 00:31:53.885
I can, I can get that done.

00:31:54.255 --> 00:31:55.525
We're counting on you, Orrin.

00:31:57.905 --> 00:31:59.605
You know how to put the pressure on, Mary Alice.

00:31:59.605 --> 00:32:00.605
I'll tell ya.

00:32:03.965 --> 00:32:06.285
I just got to the gate and I think we can really make a

00:32:06.285 --> 00:32:07.325
difference with this whole trip

00:32:07.585 --> 00:32:10.125
and just helping to get funding and everything.

00:32:10.265 --> 00:32:12.525
At least that's the hope. So, fingers crossed.

00:32:24.465 --> 00:32:25.725
So let's go through this really quick,

00:32:25.925 --> 00:32:27.045
'cause I wanna make sure I have this right.

00:32:27.595 --> 00:32:28.925
I'll do introductions.

00:32:29.065 --> 00:32:31.245
You're going to share your story - three to four minutes.

00:32:31.385 --> 00:32:32.725
You totally nailed that. Good job.

00:32:33.645 --> 00:32:35.325
I just gotta be more concise. All right.

00:32:35.425 --> 00:32:39.125
So reference fact sheet, impact on society.

00:32:39.365 --> 00:32:42.045
119 billion lost wages and medical costs.

00:32:42.345 --> 00:32:44.565
Um, so I should move that up with awareness.

00:32:44.995 --> 00:32:46.325
Okay, we're here. And insurance.

00:32:48.115 --> 00:32:50.085
It's always a fear in the back of my mind.

00:32:50.105 --> 00:32:52.805
Are we gonna be able to get her treatment? What's next?

00:32:52.925 --> 00:32:54.485
I don't know what's next. There is no next.

00:32:54.875 --> 00:32:56.045
This is the end for her.

00:32:56.825 --> 00:32:58.165
And that's what's motivating me

00:32:58.165 --> 00:32:59.765
to raise all this money for treatment.

00:33:01.105 --> 00:33:01.485
I'm nervous.

00:33:11.285 --> 00:33:14.365
Hello... It's good to see you too.

00:33:15.595 --> 00:33:18.565
Hello. Who we got here? Here. How are you?

00:33:19.675 --> 00:33:20.765
Good to see you. Hi.

00:33:21.105 --> 00:33:22.365
Hi. How are you? How are you sweet

00:33:22.365 --> 00:33:23.885
girl. I'm so happy to see you. Hi, Orrin.

00:33:24.665 --> 00:33:26.525
Mary Alice, how are you? Good to see you. Thank you so much.

00:33:26.635 --> 00:33:29.445
Well, it's good to see... This is ...I'm out numbered.

00:33:29.985 --> 00:33:33.965
You are, you are. This is how we get real change. Right?

00:33:35.685 --> 00:33:37.005
I wanna ask a couple of questions just

00:33:37.085 --> 00:33:38.725
because I want to make sure we get to these though.

00:33:39.945 --> 00:33:43.565
How long does it take to diagnose a person, a woman

00:33:43.565 --> 00:33:45.845
with endometriosis on average?

00:33:46.425 --> 00:33:47.485
10 years. You know, a lot of things.

00:33:47.905 --> 00:33:50.045
How long? 10 years. 10 years.

00:33:50.155 --> 00:33:51.485
They don't know what is, but I've seen her

00:33:51.485 --> 00:33:55.245
where she's doubled up and really can't stand, you know?

00:33:55.245 --> 00:33:57.405
The pain is so intense and so terrible.

00:33:57.735 --> 00:34:00.325
Emily can speak to this. It kills your quality of life.

00:34:00.505 --> 00:34:03.045
That's basically why I just really want to talk to all

00:34:03.045 --> 00:34:05.325
of you about just finding funding

00:34:05.345 --> 00:34:07.805
and finding different ways that we can treat this disease.

00:34:08.705 --> 00:34:10.605
The Senate Appropriations Bill for this year

00:34:10.605 --> 00:34:13.125
listed almost 300 million for research money.

00:34:13.385 --> 00:34:15.685
If we could get even a couple million dollars from that,

00:34:15.875 --> 00:34:18.365
that could have some big impact for endo. Yeah.

00:34:18.785 --> 00:34:21.565
Better diagnosis. Better treatment. Yes. Good.

00:34:21.925 --> 00:34:23.165
I feel like we need to clap or something.

00:34:29.865 --> 00:34:30.485
Go slow.

00:34:35.245 --> 00:34:36.745
You got a hold the rail there? Mm-Hmm.

00:34:51.445 --> 00:34:51.945
If you want to

00:34:51.945 --> 00:34:52.985
have a snooze you go ahead.

00:34:53.165 --> 00:34:56.025
I will. You don't have to stay awake to keep me awake.

00:34:57.325 --> 00:34:59.745
You know me once we get on the highway. Yeah.

00:35:02.015 --> 00:35:03.015
Another one?

00:35:05.375 --> 00:35:08.355
Mm-Hmm. Well, there wasn't really a thought process.

00:35:08.655 --> 00:35:11.635
It was, my kid is sick, I gotta do what I can.

00:35:12.535 --> 00:35:13.755
So I went down to the bank

00:35:13.755 --> 00:35:15.315
and I took out a second mortgage.

00:35:20.305 --> 00:35:21.435
This is our best chance.

00:35:21.935 --> 00:35:24.475
We have to hope that it, this is gonna work this time.

00:36:14.195 --> 00:36:16.645
They're not a hundred percent sure yet

00:36:16.645 --> 00:36:18.085
if they'll have to take my uterus.

00:36:22.585 --> 00:36:23.245
I'm 28.

00:36:23.905 --> 00:36:25.165
All I want to do is be healthy.

00:36:25.545 --> 00:36:27.045
That's my number one priority.

00:36:32.425 --> 00:36:33.565
Don't cry. You'll make me cry.

00:36:34.855 --> 00:36:38.125
She's gonna do fine, dad. Take care of her for me.

00:36:47.545 --> 00:36:50.895
Laura had researched a doctor and and the endo clinic

00:36:51.275 --> 00:36:55.615
and her confidence is, is way up there

00:36:55.615 --> 00:36:59.135
that this is gonna be her best hope.

00:37:00.055 --> 00:37:03.415
I am fairly confident that all is gonna be well as long

00:37:03.415 --> 00:37:04.855
as she's not too damaged

00:37:04.995 --> 00:37:07.175
inside from all her previous surgeries.

00:37:07.955 --> 00:37:10.015
He says her uterus looks really good

00:37:10.235 --> 00:37:13.695
and he says there's

00:37:15.075 --> 00:37:17.135
he can't see any reason why she can't conceive.

00:37:17.315 --> 00:37:21.975
So that's a, a bonus for them. A big bonus.

00:37:34.495 --> 00:37:38.305
It's fine. Don't be nervous.

00:37:39.025 --> 00:37:40.385
I should be the one that's nervous.

00:37:41.545 --> 00:37:43.025
I know. You're such a rock.

00:37:46.425 --> 00:37:47.425
I

00:38:00.345 --> 00:38:01.985
I just want them to put me under already.

00:38:07.735 --> 00:38:09.385
What we'll do is I'll bring you inside.

00:38:09.395 --> 00:38:10.785
We're gonna put the camera in

00:38:11.005 --> 00:38:13.985
and then based on where I see the endometriosis

00:38:13.985 --> 00:38:15.225
and how I need to tackle it

00:38:15.225 --> 00:38:17.585
and approach it, we'll determine where the incisions go.

00:38:17.875 --> 00:38:20.105
We're gonna cut out what we can do safely. Gotcha.

00:38:20.315 --> 00:38:23.985
We're gonna preserve her fertility. Good. Okay. Okay.

00:38:23.985 --> 00:38:25.025
Alright. Alright.

00:38:25.045 --> 00:38:26.865
Let me check on the room and then we'll go from there.

00:38:35.505 --> 00:38:36.925
We just got a call, um,

00:38:36.985 --> 00:38:39.125
asking if we could get to the hospital earlier.

00:38:39.425 --> 00:38:42.965
So, um, we got ready in about five seconds

00:38:44.145 --> 00:38:46.725
and we are rushing on our way to Northside Hospital

00:38:46.945 --> 00:38:50.685
and I just got really excited for today.

00:39:07.825 --> 00:39:10.085
Any questions regarding procedure? Okay.

00:39:10.715 --> 00:39:14.285
Allergies, any drug allergies? No drug allergies.

00:39:14.345 --> 00:39:16.205
Any problems with latex? No.

00:39:39.095 --> 00:39:40.435
The anterior abdominal wall here.

00:39:45.205 --> 00:39:48.515
Great. Let me know if you need anything from this, this

00:39:48.635 --> 00:39:49.635
cord over here.

00:39:50.835 --> 00:39:51.315
I need a ...

00:39:55.865 --> 00:39:56.475
Connect yellow.

00:39:57.225 --> 00:39:58.225
Okay, great.

00:39:59.105 --> 00:40:01.835
Last utero ligament rule out endometriosis.

00:40:10.925 --> 00:40:13.665
You can see all this speckling under in here.

00:40:13.805 --> 00:40:16.865
Do you see the scarring right there? Yeah, it's very close.

00:40:23.325 --> 00:40:27.665
Got some more endo here. Some

00:40:27.825 --> 00:40:30.065
more endo there. More there.

00:40:30.815 --> 00:40:32.745
Here is the right uterosacral ligament

00:40:32.895 --> 00:40:35.225
densely adhere to the sigmoid here.

00:40:35.285 --> 00:40:36.945
So we have to separate the two

00:40:36.945 --> 00:40:37.945
of them.

00:40:38.815 --> 00:40:40.825
This is part of what's restricting the movement

00:40:40.825 --> 00:40:43.345
of the bowel. So much blood in our field.

00:40:51.555 --> 00:40:55.695
She did great. So when I put the camera in, do you see

00:40:55.695 --> 00:40:58.495
how this whole area here is pulling to the left side?

00:40:58.565 --> 00:41:00.775
Yeah. Do you see how we don't have that on the right side,

00:41:01.515 --> 00:41:02.895
but we see it on the left side?

00:41:03.635 --> 00:41:05.815
So this area here was scarred.

00:41:06.035 --> 00:41:08.655
Do you see as I cut it out, I mean the little pieces

00:41:08.685 --> 00:41:11.055
that I cut out, it opened up this whole area.

00:41:14.555 --> 00:41:17.775
Oh well I'm relieved that she's fine.

00:41:19.035 --> 00:41:22.175
Uh, you know, I was terrified before.

00:41:22.875 --> 00:41:27.215
Uh, I know that she's gonna heal up and,

00:41:27.595 --> 00:41:29.935
and she's gonna be in very good shape compared

00:41:29.935 --> 00:41:30.975
to what she was before.

00:41:31.555 --> 00:41:35.285
Uh, he's pretty sure he got most

00:41:35.285 --> 00:41:38.845
of the endo out. There is a little bit of concern.

00:41:39.425 --> 00:41:41.965
Her liver was stuck to her diaphragm,

00:41:42.785 --> 00:41:46.005
but he got everything out that he could see.

00:41:47.675 --> 00:41:50.245
Unfortunately, they had to take her uterus.

00:42:25.825 --> 00:42:29.565
We lost the baby. The, the fetus had stopped growing

00:42:30.345 --> 00:42:33.845
and we had to, um, abort the baby.

00:42:35.625 --> 00:42:38.965
And, um, that was really, really painful

00:42:39.915 --> 00:42:42.245
because I didn't think I could ever get pregnant.

00:42:42.985 --> 00:42:44.005
So at 39

00:42:44.105 --> 00:42:46.685
and getting pregnant for the first time was,

00:42:48.585 --> 00:42:50.085
was like a miracle for me.

00:42:51.265 --> 00:42:54.365
Um, and

00:42:54.425 --> 00:42:56.605
um, it was tough.

00:42:57.745 --> 00:42:58.765
So, you know,

00:42:58.765 --> 00:43:01.605
everybody was saying at least I know I can get pregnant.

00:43:01.825 --> 00:43:06.165
And um, so that was good. We're still gonna try.

00:43:06.385 --> 00:43:10.565
Um, but we'll see. Yeah,

00:43:27.565 --> 00:43:31.505
If I could go anywhere, I would go to outer space.

00:43:36.545 --> 00:43:37.715
I've been saying that lately.

00:43:38.275 --> 00:43:41.395
I wouldn't mind if they freeze my body

00:43:41.495 --> 00:43:45.195
and send me up for a mission and I'll wake up in 500 years.

00:43:46.595 --> 00:43:51.035
I can imagine just the peace to be just

00:43:51.065 --> 00:43:52.115
amongst the stars

00:43:52.495 --> 00:43:56.355
and to be able to look down onto the earth

00:43:56.935 --> 00:44:00.515
and see Canada and see Saskatchewan

00:44:00.515 --> 00:44:04.275
and see everywhere I've ever wanted to go.

00:44:18.585 --> 00:44:22.955
What are you getting? Fries and rice. Mm-Hmm.

00:44:23.255 --> 00:44:24.955
And then do like a, a roll.

00:44:25.665 --> 00:44:27.115
Overall, I feel really good.

00:44:27.815 --> 00:44:29.355
I'm not on pain medication anymore.

00:44:29.695 --> 00:44:33.205
My appetite's coming back. Um, I'm gaining weight again.

00:44:34.225 --> 00:44:37.205
I'm not in any pain. I'm not in any pain.

00:44:37.425 --> 00:44:39.565
I'm not in any pain. I don't know how many times I can say

00:44:39.565 --> 00:44:40.645
that before

00:44:40.685 --> 00:44:41.965
I still believe it's

00:44:41.965 --> 00:44:42.965
real. I've been

00:44:42.965 --> 00:44:44.645
doing really, really great recently,

00:44:44.815 --> 00:44:45.965
which is really exciting.

00:44:46.625 --> 00:44:48.965
Um, I'm almost completely pain-free right now.

00:44:49.035 --> 00:44:50.605
Like I'm still struggling a little bit,

00:44:50.825 --> 00:44:52.725
but overall in the past six years,

00:44:52.795 --> 00:44:54.085
this is the best I've ever felt.

00:44:54.305 --> 00:44:55.645
So super stoked.

00:44:56.165 --> 00:44:58.885
I haven't had to leave one class due to pain yet

00:44:58.905 --> 00:45:00.765
and that hasn't happened in like six years.

00:45:01.425 --> 00:45:03.045
So I'm just doing really, really well.

00:45:03.045 --> 00:45:06.085
Like knock on wood and yeah. Oh,

00:45:07.115 --> 00:45:08.685
It's beautiful out here tonight, eh?

00:45:08.865 --> 00:45:11.925
Yep. I was finally able to start

00:45:12.765 --> 00:45:15.285
enjoying life again, which was pretty amazing.

00:45:15.555 --> 00:45:17.725
That was the right idea. Just a little too hard.

00:45:18.525 --> 00:45:20.365
I was able to take in some things I

00:45:20.365 --> 00:45:21.525
haven't been able to for years.

00:45:22.195 --> 00:45:25.325
Nice shot. So I'm really lucky.

00:45:26.675 --> 00:45:30.925
Cool. I think I might have to just stop after this.

00:45:31.155 --> 00:45:33.965
This is the best round of golf I've played in years

00:45:35.315 --> 00:45:37.765
Because of the extent of the damage

00:45:37.945 --> 00:45:41.005
and how long my body was in that sick state

00:45:41.605 --> 00:45:44.845
I got permanent nerve damage. Whoa, take your time.

00:45:45.545 --> 00:45:48.285
Oh, I know. I'm just trying to not pay attention to it.

00:46:03.025 --> 00:46:06.165
And I knew, I knew going into the surgery that there was

00:46:06.885 --> 00:46:08.645
a chance that this was gonna be the case,

00:46:10.665 --> 00:46:14.965
but you still hope, you hope for a miracle.

00:46:20.025 --> 00:46:23.085
So I just need to change my definition of miracles, I guess.

00:46:25.155 --> 00:46:26.965
It's so obvious to me why my doctors

00:46:26.965 --> 00:46:28.365
treated me the way that they did.

00:46:28.365 --> 00:46:29.405
Because according to

00:46:29.565 --> 00:46:30.805
standards, they did all the right things.

00:46:30.805 --> 00:46:32.285
They gave me all the right medications,

00:46:32.355 --> 00:46:33.445
they said all the right words.

00:46:34.065 --> 00:46:37.045
um, based on what it is they're being told they should do.

00:46:37.825 --> 00:46:40.005
Um, I think if education was better for them,

00:46:40.305 --> 00:46:42.285
it wouldn't take 10 years for a woman

00:46:42.305 --> 00:46:44.205
to get an accurate diagnosis.

00:46:47.785 --> 00:46:49.005
So listen to this. Ready?

00:46:49.945 --> 00:46:52.045
Um, may I ask you where you had your surgery

00:46:52.145 --> 00:46:53.325
and, and how it has helped.

00:46:53.475 --> 00:46:54.685
I've been suffering for so long

00:46:54.685 --> 00:46:56.005
and will travel anywhere literally

00:46:56.005 --> 00:46:57.205
to get some sort of relief.

00:46:57.225 --> 00:46:59.925
I'm thinking of a hysterectomy. I'm gonna message her

00:47:08.065 --> 00:47:10.445
if we don't finally say we're not

00:47:10.445 --> 00:47:11.765
gonna live like this anymore.

00:47:11.815 --> 00:47:13.245
We're not gonna accept this anymore.

00:47:14.045 --> 00:47:16.885
I think we've seen that no one's going to do it for us.

00:47:19.385 --> 00:47:23.165
So it's up to us. It's up to us to make the change finally.

00:51:45.705 --> 00:51:49.755
- There's power in what you say, in what you say.- Own your voice, don't be afraid.

00:51:50.725 --> 00:51:54.195
Don't be afraid. There's power in what you say, in what you say.

00:51:55.175 --> 00:51:56.795
Own your voice, don't be afraid.

00:51:57.095 --> 00:52:00.715
Don't be afraid.