This show is sponsored
by BetterHelp online therapy. Visit betterhelp.com/padilla
because sometimes existing is exhausting. My name's Anthony Padilla,
and I spent a day with people with endometriosis. We'll uncover what it's like to experience
debilitating pain that some don't believe exists,
despite one of the guests today describing the feeling
as something violently clawing its way out from inside them,
and how endometriosis can lead to losing everything from your job
to your entire identity and sense of self. Resulting in two of our guests
ultimately having organs surgically removed from their body,
with one of them disintegrating in the nurse's hand. By the end of this video,
we'll find out if they've been able to champion this extremely common
yet painful disorder in order to reclaim their lives,
or if the harrowing pain they've endured on a daily basis
has left them feeling isolated and consumed by incessant agony. [music] -Hello, Morgahna.
-How's it going? -Kate.
-Hello. -Jenneh.
-Hi. How are you? Can you define what endometriosis is? Endometriosis is when tissues similar
to tissue that lines the uterus grows in places outside the uterus. Spiderwebs in your abdominal cavity
just wreaking havoc. There's a multitude of different symptoms. We don't know
why this endometrial-like tissue exists. There's some hypotheses. Before we get any deeper,
do you know how many people experience endometriosis? 1 of every 10 people with a uterus. That's 176 million people worldwide. It really is a healthcare crisis. What do you think
is the biggest misconception about endometriosis? That it's just a bad period. It is so much more than that. It is a disease that can affect
every single part of the body, that it's crippling, it's debilitating,
and that it's not something that most people can just push through. It's a really, really serious disease,
and I don't think that that's understood. Endometriosis is as common as asthma,
it's as common as diabetes. Why do you think it is that we hear
about those other health conditions so much more than endometriosis? People who suffer from this disease
are not as comfortable speaking about it publicly. I think there's a lot of taboo
about period-related issues and pelvic pain
and all that comes with that, so I don't think people are as apt
to tell other people that it's what they have. Endometriosis were something
that only affected men, do you think that it would be something
that might be discussed more frequently? I hate to say it, but I do think
there's some bias in medicine. Diseases that affect mostly women
usually don't get as much attention. Can you attempt to describe the feelings
that you feel with endometriosis? Like I'm being impaled by something. It's like something is just trying
to scrape its way out and explode out from inside of me. Definitely like a 10 out of 10
on any pain scale. It was so severe that every time it hit,
I would always question like, "Is this it? Is this the time that this takes me out?" Do you ever feel obligated to prove
to people just how much pain you're actually in? Prove it how,
if I'm just white-knuckling through it? -You look okay.
-Am I really sick? Am I just being crazy? -Is this something--? [crosstalk]
-You start to second-guess yourself? Yes, and then you see someone
who's got like a giant gash in their leg, and you're like, "Oh my gosh,
I don't have a giant gash that's leaking blood all over the floor. How am I supposed to prove that?" Do you have a worst pain story
that stands out to you? I was driving to work, and out of nowhere,
just got this piercing, stabbing pain on the right upper side of my stomach. That every single time I took a breath,
it was like somebody was stabbing me. It continued for hours. They gave me morphine,
and it wasn't enough. What do you do when you're given morphine
and it's not enough? Besides wonder if life is worth living? -Just contemplate existence.
-No big deal. I was in Heathrow Airport curled over
in the bathrooms, and I managed to drag myself down
to the gate maybe like an hour into the flight,
and I am not good. The air hostess was on the phone
to a doctor on land, trying to get advice
about what was going on with me. The next stop was,
"Do we deviate to Europe to get this person off the plane
and into a hospital?" I went down and sat in the back
of the plane with the air hostesses gathering these heat-treated water bottles
from passengers, filled them up with boiling water
and were sticking them all over my abdomen. You had all these donated bottles of water -that they heated up for you?
-Exactly. It was more embarrassing having to get off
the plane and hand back every water bottle. How far back does your experience
with endometriosis go? I was 27, I'm 35 now. -Do the math. [laughs]
-Eight? -Is that right?
-Yes. [sighs] I was put on the spot. I had to quit working,
as I had to quit school, as I had to stop running,
it became a little bit more clear to me that this is going to be with me
for a while. It wasn't until my late 20s
that I couldn't just take a couple of Advil and be okay,
so it got progressively worse. -I can remember my first symptoms
when I was, I think, six years old. It was really hard to articulate that
at that age, but looking back, I can definitely connect those dots. The doctor said to me,
there are some things here, but there's no way you have that
because you're too young." That one sentence really stopped
any further progress for years after that. When a child presents
with those kind of symptoms so young, medical professionals often jump
to the worst-case scenario. For me, I had to go down
this whole pathway of proving that I wasn't being sexually assaulted
as a child. -What did you think it was at first? I thought it was just cramps. It wasn't until I went on birth control,
and then I realized just how unbearable it was. Do you feel like a portion of your mind
is dedicated to processing this pain? It's hard to think about anything else
when you are in that much pain. Then, there's this constant inflammation
from the disease itself, so just your body
is literally just in fight mode 24/7. Do you feel like endometriosis
has had any effect on your personality? Endometriosis, I would say,
turned me into someone I didn't recognize. I couldn't find joy in anything. I definitely didn't realize it at the time,
but I was absolutely depressed going through it,
and I don't think I realized how bad. That experience shaped every experience
for the rest of my life. Nothing felt as big,
nothing felt as important, nothing felt as worth being upset
over after being in a position where everything that I knew and loved
was taken away from me like that. What have been some of the ways
that you've learned to curb the pain? The very first thing that I tried
was just over-the-counter anti-inflammatory. I got to the point where I was taking
like 800 of ibuprofen just to start my day. We moved to the stronger things. Opioid didn't help me at all.
Didn't touch my pain. I was able to get a card
for medical marijuana, and I found that THC,
CBD was the only thing that worked for me. With most health conditions,
a diagnosis is the first step in understanding
and treating any condition, but why is it that a diagnosis
is a last resort for endometriosis? The only way to really 100%
let someone know that they have endometriosis is surgery. I think that some patients
are turned off by that, and then I think some doctors
think that that's too invasive. Are there other ways to get a diagnosis
or at least as close to a diagnosis as possible? Sometimes when people have
very, very deep disease, it could show up on an MRI or ultrasound. Even with that, you still can't 100% say. The only 100% this is endo way to say that,
is by taking a little piece of the tissue, getting a biopsy,
looking at it under microscope, and calling it what it is. What was your journey like
to get that diagnosis? From the very first time I had symptoms
to when I finally had a doctor say, "I think it might be endo." It was 10 years. My primary care doctor,
not even my GYN said, "Why don't we figure out
if this is actually endometriosis, because if we're barking up the wrong tree,
I would like to know, so that we can figure out
whatever else is going on." If he had never mentioned that,
would I have just kept going down this road of never-ending medications
with my gynecologist? -Probably.
-Do you remember the moment when you were officially diagnosed? The doctor came over to me and said,
"It's not great news. We found endometriosis,
and it's quite severe." I was like, "Sick, love that. At least I've got a diagnosis." If that was communicated to me better,
as in like, "Hey, look, we found the endometriosis,
it is advanced. However, there are plans and treatments
and steps we can take." I would've been like,
"Great, we've got a plan. We can do this." Did you have any sense of relief knowing
that it was an official thing now? When I went in after that X-ray
and she said, "I believe this is endometriosis.
I see evidence of scar tissue. We should do surgery."
I was like, "Thank fucking God. [chuckles] Finally." It felt like I wasn't just going to sit
in misery forever. I knew I wasn't crazy. I think that's something that most people
with endometriosis go through is that moment where they're not insane,
that all of those hospital trips, being looked at crazy
are all of a sudden valid. Does endometriosis affect your ability
to have kids? I did have a sister disease
to endometriosis called adenomyosis, and that did affect my ability
to have kids. I had a hysterectomy for that in 2017. Very much so. I'm actually going for surgery this month
to make sure that my ovaries are okay and there's no endometriosis
growing on there, but it's a thought
that has been in the back of my mind ever since I was diagnosed. Thankfully, I'm in a same-sex relationship,
so we have two uteruses. -More the merrier.
-Exactly, right? I still want to be able to bear children,
I want the option. Does that fertility aspect heavily weigh
on all your decisions surrounding endometriosis? That's been my sole focus,
that I can give having children -the best shot.
-I just want to be better. I just wanted to feel better, so I said,
"Take whatever you need to take." Is there a societal expectation
to have kids that weighs on you or affects you at all? Before we continue learning
about the world of endometriosis- She also took my appendix,
which broke apart in her hand. It just crumbled
as she pulled it out of you? I'd like to let you know
that we have some other episodes that you might be interested in,
like I spent a day with people who suffer from chronic pain,
Tourette's syndrome, and schizophrenia, all of which are available here,
as well as the uncensored podcast version of this show.
Link for that is down below. While we're here, I'd like to thank you,
of course, for sitting through these sponsored segments,
because without them, many of these episodes
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and also support this series, get Honey for free
at joinhoney.com/padilla. Again, it's free
and if you go to joinhoney.com/padilla, you'll be directly supporting this series. Now, back to the world of endometriosis. Is there a societal expectation
to have kids that weighs on you -or affects you at all?
-So constantly that I can't believe it. I still had a cabbie ask me if I have kids,
and I was like, I just sighed, "It's not right for me," and he was like,
"You're so beautiful, you should have beautiful children
like you." You better pass those genes along. That is your civic duty
for being that pretty. What a cool obligation. Every single person has a parent
or has had a parent at some point in their life. I think that's what perpetuates the idea
that having a kid, in many ways, is the be-all end-all meaning of life. First time, my mom is even hearing
about how bad everything is, is when she came out to come with me
to my second surgery. We're having the talk about hysterectomy
and it was just like so much for her. The idea of her 29-year-old daughter
having to have hysterectomy and like, "Are you sure this is what you want to do?"
Then I start second-guessing myself. Was she upset for you
or upset for the idea -of losing the potential grandchildren?
-I think it was that. I said,
"Okay, let's not do it this time around." I think that that's a pressure that people
that end up being diagnosed with endometriosis take on, in that like,
"What do I need to do so that I can still fulfil this role
that I'm supposed to fill?" To the point where they're just struggling
and in pain because they don't want to address
the infertility with the hysterectomy or whatever type of surgery
they might need. After diagnosis, did you immediately say,
"Dig in, -we're getting this whole puppy out"?
-Mine all happened at the same time. When you're diagnosed with endometriosis,
you have a laparoscopy. One, to biopsy if there's any tissue,
but two, if they do find it, they cut a lot of it out. I'm going for my next surgery
that will just be sort of a clean out, -if you like.
-The very first surgery that I had is what we call an ablation surgery, and it's basically where they burn off
the areas of endometriosis that are seen. I was told at that time with that surgery
that I should expect to have a surgery every year for the rest of my life.
Surgery 2 is the excision. I had a two-part surgery
where they did the surgery on my chest to get the endometriosis
out of my diaphragm. Then we did the pelvic surgery,
and they found it in so many different areas. I had some on my bowel,
I had some on my bladder, on the walls of my abdomen. Surgery 3 was my hysterectomy. Surgery 1 was just a search
and destroy mission. She went in, she found scar tissue,
she removed it. Second surgery was the same thing. We were also removing a chunk of nerve that could potentially reduce my pain. She also took my appendix,
which broke apart in her hand. What? It just crumbled
as she pulled it out of you? As she touched it.
She touched it, it broke. A whole other surgeon had to come in
and help. That's how fragile it was
inside your body? Because it had endometriosis. Right before we did that, I got an MRI. Saw potential signs of adenomyosis,
which is endometriosis but within the uterus itself. The only way to diagnose that officially
is to cut the uterus open and see it. Was that a tough decision saying,
"You need to cut this all out"? I definitely was at a point where like,
"If that's what it takes, that's what it takes." We just decided to yeet the whole thing. Do you think surgery
is the right choice for everyone? It's really a personal decision. For me, it was. If you're having pain
that is absolutely intolerable, then surgery is probably going to be
in your cards. Do you feel like you've defeated
or completely overcome endometriosis? At this moment,
it feels like I have my life back. Every time I say it, I get chills
because I never thought that I would actually live
a happy life again. How has your life changed
since getting that diagnosis and having what they could find removed? I feel so much more in control of myself,
which is totally-- A bit of a red flag,
I have to be in control of everything. [laughs] Finally, I'm in control again. It's great to feel like I'm existing
inside this meat sack. It feels so much more like a collaboration
between my mind and body, rather than my body just doing
whatever the fuck it wants and me just being like,
"What is going on?" Instead of at a 10 out of 10
on the pain scale for multiple days, -I actually get to have fun in the world.
-You get to have fun now? -I get to slack off.
-You could experience life. I enjoy living pain-free,
and I really, really like to try to live every day as the best version of myself
because I'm allowed to, because I get to again. My relationships
are so much more meaningful. Everyone in my life now are people
that I know are going to be there for me when they say that they will be. For anyone watching who has experienced
endometriosis pain and maybe are either nervous
about going under the knife to get a diagnosis,
or maybe they're feeling like this might not be bad enough
to bring to anyone's attention and become a burden,
is there anything -that you want to say to them?
-You are worth fighting for. t gets so much better
when you take control and advocate for your own health. Excruciating pain is not normal. If you're being told
that your pain is normal, I suggest you see a new doctor. Sometimes, it may take
two or three or four, but keep fighting. Eventually, you'll find someone
that does believe you and that knows what to do for you. What are some of the ways
that you've been able to turn your experience
with endometriosis into something positive? I started studying myself relative
to current medical research. Put them in a graph, logged them every day,
and I was able to determine what was affecting
my endometriosis adversely. Then, I was able to make changes
to my life. I brought my pain down to about 20%. I thought, "If that can help me,
maybe it can help other people. Why don't I turn this into a format
that more people can use?" I made an app. It's going to help thousands,
if not hundreds of thousands of people. There's a need for more places like this,
where you're just getting real information and good information
from people who understand it. That's where The Endometriosis Coalition
came to be. Our mission is to raise awareness,
to promote reliable education, and to help increase research funding. I like to think that we're saving people
from years of chaos and pain and running around from doctor to doctor,
just from one Instagram post of just finding the right information. All right, you got five seconds
to shoutout or promote anything you want directly in the camera.
Go. Check out Squeaky Bicycle Productions,
Phi Sigma Pi, and support Planned Parenthood
or your local reproductive health organization. I'm a designer and creator. You can catch me on Instagram. I've also put a really important resource
on this that might help you in your endometriosis journey. June 7th, I have a book coming out called
Part of You, Not All of You: Shared wisdom and guided journaling for life
with chronic illness to help you navigate your chronic illness journey
if you're feeling alone walking through it. Click the subscribe button
because if you think this one is great, so are the rest of them. I can guarantee it. There you have it, I spent a day
with people with endometriosis, and I have a much better understanding
of its severity and just how common this disorder really is,
despite it being so frequently written off and seen as too taboo to discuss. My greatest sympathies go out
to anyone dealing with this incessant pain. I hope this video encourages you
to keep researching and advocating for yourself. [music] Is having period pain normal? Is that something that people
should take note of if they're experiencing it
to a certain level or is it just common? If you are lying on the couch
in the fetal position all day, that's not normal. When someone comes home
and they see that the couch is completely destroyed and they ask you,
"What happened?" You say,
"Oh, I was writhing around in pain all day, trying to find a comfortable position
and nothing would work and I completely destroyed
half the house because of it." That's not normal? I feel like you're explaining my life. No, that's not normal. [laughter]
