Welcome back everyone. I have a very special guest with me today. And I’m excited that she’s here with me. I’m going to tell you a little bit about her in a minute, but welcome Nathali.

Nathali @endocipota (00:51)

Thank you so much for having me, Dr. Garner.

Dr. Ginger Garner PT, DPT (00:53)

Yeah, absolutely. I am so excited that you’re here. You’re bringing such a much needed perspective to the discussion on endometriosis. So before we get started, I want to introduce you guys to Nathali a little bit more thoroughly. Nathali is a first generation Salvadoran Honduran Latina. She is a passionate advocate for Latinas menstruating individuals living with endo. So

I mean, that’s like, we’re gonna get into that, because that’s a huge topic. It’s a huge population. And you were diagnosed at 21, right? Yeah, Nathali’s journey navigating the disease in the medical system inspired her to educate and support others facing this, what can be a very debilitating condition. You have a background

Nathali @endocipota (01:30)

Yes, I was diagnosed at 21.

Dr. Ginger Garner PT, DPT (01:46)

in psychology, combining research and personal experience to empower others through self-advocacy and informed healthcare decisions. She bridges cultural gaps with a bilingual platform. That’s on Instagram, right? Yeah, yeah, yeah. We are gonna get into that, because I wanna make sure everybody can find you when we shore up today. And a newsletter called The Chronic RBF.

Nathali @endocipota (02:01)

It is endocipota.

Dr. Ginger Garner PT, DPT (02:13)

Her advocacy includes co-launching Latinas Con Endo and participating in initiatives like the Endometriosis Summit Espanol. Committed to creating systemic change, which is what it should be all about, Nathali is providing and building a nonprofit to provide Latinas with resources to better manage Endometriosis and advocate for their needs. Welcome, Nathali.

Nathali @endocipota (02:39)

Thank you.

Dr. Ginger Garner PT, DPT (02:42)

So, I’m just gonna like just jump right into the deep end of the pool right away because I think that a problem that we face globally, this is not an endometriosis problem alone, but the problem we face globally that seems for some reason it should be getting easier to address, but for some reason it’s getting harder to address is diversity and representation.

So when I think about that related to endometriosis, my very first question was, how has your cultural background shaped your understanding and experience of Endo? Because that must have an incredibly powerful impact and one that I can’t understand, but that I’m intensely curious about.

Nathali @endocipota (03:33)

Sure, I love this question because I think a lot of times when I do talk about it, people’s initial reaction might sometimes be, I understand too, I have endo, it’s terrible. And it’s like, absolutely, like if you have a chronic condition or dealing with some sort of health issue, there’s so much room for empathy for everyone. But I think that what can sometimes be missing from advice on dealing with a chronic illness or

navigating illness is understanding sometimes that culturally there may be additional barriers, right? There’s so many barriers already as women, there’s so many additional barriers as maybe disabled people, ill people, and…

Dr. Ginger Garner PT, DPT (04:20)

Yeah, so you can have

like a double, triple, quadruple, like you can have all of these barriers piling up after the already huge one of just being female. Yeah.

Nathali @endocipota (04:29)

Exactly,

exactly. so, and that’s all different for everyone, right? you know, and the conversations of privileges, and I think a lot of these words have become like so politicized and we’re not trying to call anybody out or make anybody feel bad. It’s just more of, like one of my privileges is I have a bachelor’s degree. I navigate this space with an education, which is something that some people just don’t have.

So culturally, it’s important to talk about specifically where my family is from. So Latina, Latinos, Latinx is an umbrella term. It’s a term that tries to encapsulate so many different countries in Central and South America. And it’s impossible to do that. All of those countries are so unique. They’re so different. We all speak the same language, primarily.

But it is culturally very different. And so I am Central American. My parents are from El Salvador and Honduras. And these are two countries that have been murder capitals in the world at different times. El Salvador specifically is the part of my culture that I’m very much in tune with. I used to travel there every summer, so I’m sure there’s going to be a lot of…

other first generation people that are listening that can relate to, you kind of grow up in two worlds. You might speak two languages, you might still go back to the home country. The food that is from those countries is still being cooked in your home. Your parents are speaking that language. And so I grew up with, you know, Britney Spears singing pop music. And I also grew up with the Shakira that I know, right, singing in Spanish growing up.

Dr. Ginger Garner PT, DPT (06:15)

Mm.

Nathali @endocipota (06:19)

I had two worlds going on in my head all the time and many different influences and also just seeing how people live outside of the United States first and foremost. So my father is from a very rural area. He grew up on a farm. And so every summer, like I was a kid from Brooklyn going to help with milking the cows every summer, right?

Dr. Ginger Garner PT, DPT (06:46)

Yeah.

Nathali @endocipota (06:47)

It gave me just a very different viewpoint of the world and I think appreciation for how hard people work in El Salvador and how hard people work here and how different it can be. so with that being said, we talk a lot about intergenerational trauma and experiences. My father was escaping civil war. The 80s was a time where the government and…

Dr. Ginger Garner PT, DPT (06:53)

Yeah.

you

Nathali @endocipota (07:15)

homegrown movements, guerrilla groups were fighting each other for control. And he experienced some really terrible things and he had to make the decision that nobody wants to make, which is that he had to leave his home to survive. And the United States would give him the opportunity to send money back to his family and help them. So my father was initially undocumented.

He later met my mother who did come here on a student visa from Honduras. Also grew up in extreme poverty and they came from very difficult situations. But as soon as I got here, they just worked really hard. I don’t think I have ever not seen my parents busting their behind. And that’s something that they really taught me is that, and if you want something, you’ve really got to work hard for it. And if you just stay honest and good and consistent.

It’ll be rewarded was really their message and Life happens right my parents split up and I was raised by a single mom and and she raised my sister and I and That was that was rough for lots of reasons because Flash flash forward to me dealing with menstruating right and and periods

Sex, those are just not topics that you talk about in like a traditional Catholic Latino household. It’s very taboo. So it’s not that I didn’t know that I wouldn’t get my period, but you know, when I started talking about it and started talking about how painful it was when I was, when I was around 14, 15, that was just kind of it. It was like, well, the sentiment when you, when you talk to other Latinos is, well, this is the burden that women bear. It’s, it’s pain.

Dr. Ginger Garner PT, DPT (08:42)

Mm.

Mm-hmm.

Nathali @endocipota (09:06)

And that’s what you’re supposed to expect in life as a woman is pain. And as the years went on and my symptoms would get worse, when I was diagnosed at 21, that was terrifying for me. I had moved out of my house at 18 and I was actually afraid to go to a gynecologist. It’s not a conversation I could have with my mother because for her,

Dr. Ginger Garner PT, DPT (09:30)

Mm-hmm.

Nathali @endocipota (09:34)

Asking to see a gynecologist, the thought of possibly getting on birth control for pain just meant that I was looking to be promiscuous and reckless. And even though I was bleeding so heavily and it would disrupt my school day, right? Like I was going to high school and…

Kids these days have it really good, the little thin pads that absorb so much, but when I was going to school, it was these big diaper pads and I would put like four of them in my jeans just to like make it through the day in high school. And a tampon was completely out of the question. I couldn’t even utter the word in the house. My mother didn’t use them. And I remember one time, I really wanted to get into the…

Dr. Ginger Garner PT, DPT (10:05)

Mm-hmm.

Thank

Nathali @endocipota (10:23)

the pool with my cousins and I told my aunt, I really want to swim. And she was like, we have your period. You can’t get in there. And I was like, well, what about a tampon? I saw tampons in, you know, in the bathroom. And she was like, you use tampons? She was like, you’re going to lose your virginity. And I was like, gosh. OK. Like, you know, and then she told my mom and the aunts and it was like a whole thing about like how Nathali wanted to deflower herself.

Dr. Ginger Garner PT, DPT (10:45)

No.

gosh.

Nathali @endocipota (10:55)

to get into the pool, right? Which, and that’s just, you know, the conservatism, the…

Dr. Ginger Garner PT, DPT (10:56)

Hahaha.

Mm-hmm.

yeah, I grew up in the South. So it’s a whole different culture, but at the same time, your story resonates hardcore because you actually reminded me of a story that I experienced in high school where I was, I’ve not even told anyone about this story. Like this is going to be a first time since it happened in high school where I had to stuff like an entire roll of toilet paper because I was wearing a dress and it went.

Nathali @endocipota (11:05)

Yeah.

Dr. Ginger Garner PT, DPT (11:32)

everywhere. All down your legs, the whole back of the dress. Thank God it was black and too big. But I had to like, I used everything in the bathroom to like, it looked like a murder, you know, scene. So when you said that, I was like, I just like flashback just like that to that, that memory of going, you know, wow. And so I’m really curious about how your diagnosis came because I went through that experience.

Nathali @endocipota (11:45)

my gosh, yeah.

Dr. Ginger Garner PT, DPT (12:00)

But then I went on the rest of my life and didn’t even get a diagnosis until last year. Yeah.

Nathali @endocipota (12:06)

Wow. Wow.

Ugh. I want that to change so much. My gosh. My gosh.

Dr. Ginger Garner PT, DPT (12:12)

Yeah, was over 30 years. Yeah.

So how did your diagnosis come about? Yeah.

Nathali @endocipota (12:19)

I’m glad you got an answer though. So I

had to wait really to move out. I moved out of the house at like 18. Also grew up in a very strict household and that was kind of just becoming a little bit much. I was like an adult, I was in college, you I was also 18 and thought I really had it all figured out. But, you know, I wish I could tell that Nathali like, you know.

Dr. Ginger Garner PT, DPT (12:25)

Hmm.

Mm-hmm.

I know.

I have a I have the same. have three teenagers right now.

Nathali @endocipota (12:49)

Get a hold of yourself.

gosh, my sister and I are seven years apart, so her teenage years were really hard for me. But yeah, no, I was out of the house and that’s when I felt brave enough to go see a gynecologist. And this was really like, it was so traumatic, like my first experience. I did my research, because I was having these horrible pains. I was having these horrible pains. I’m in college, I’m fainting.

Dr. Ginger Garner PT, DPT (12:59)

Mmm, yeah.

Hmm.

Nathali @endocipota (13:22)

all

the time. Like I am just walking on my way to work and I’m like fainting. Like there’s been times where I fainted like in the front of a train station in New York City, just like flat on the floor and from the pain and like woken up and just thankful that no one like took anything. And nobody called the cops either because it’s New York City and just getting on the subway and getting on with my day, right? Because like I have to work, I have to go to school.

Dr. Ginger Garner PT, DPT (13:42)

Yeah.

my.

Yeah.

Nathali @endocipota (13:51)

And

so this is like the kind of stuff that was happening to me. And the bleeding was just so excessive. Like you just described, like I was finals week and I made the mistake of wearing a dress. Didn’t realize my period was coming in. I had to like stop by a Target, buy pants, throw my dress in the garbage. I had maybe $20 in my name that week and like spent it all on that clothes change.

Dr. Ginger Garner PT, DPT (14:14)

Mm.

Nathali @endocipota (14:17)

to just barely pay the bus fare to get to school to take the test. you know, like, I’m sure we all have stories like this. And so I went to my first gynecologist and I said, well, and it was two things, right? Like, cause I was always like, and this is probably like, it’s a lot of first gen can relate to this, oldest siblings. I was a very responsible.

Dr. Ginger Garner PT, DPT (14:23)

my gosh. Yeah. Yeah.

Nathali @endocipota (14:41)

kid way beyond my years at 18. I was just worried about I just I should have been making mistakes and I should have been doing stupid things but I wasn’t. And I remember that like, like I had read an encyclopedia when I was a kid because I was we were in El Salvador, there was nothing in English on TV. And we had an encyclopedia there that my aunt gave me and I read the whole thing. And one of the ones that was there was like a parental guide. And I remember in that section about sex, it was like

if your daughter starts to have sex, you should take her to gynecologist to start that relationship with the doctor. And so I was like, well, I am sexually active now. I’m going to get myself to a gynecologist. And and so and so I did that. and it was like it’s funny because I can remember to this day, like what the room smelled like, what the temperature that it was, it was like winter. So was like really warm in there. She immediately shamed me.

Dr. Ginger Garner PT, DPT (15:20)

Very good. Well done.

Hmm.

Nathali @endocipota (15:39)

She was like, I was 19. She was like, why are you having sex? She’s like, you’re going to ruin your life. She was like, you know, what’s worse than an STD, a child. Literally, that’s how it started. I, cause she asked me why I was there and I was like, well, I’ve become sexually active and I just want to make sure everything’s okay. By the way, I painful periods. And, and she was just, she was so judgmental. She chastised me the whole time. Didn’t talk to me about.

Dr. Ginger Garner PT, DPT (16:00)

Yeah.

Nathali @endocipota (16:10)

I’m gonna look down there. I’m gonna put a speculum, like she just shoved a speculum in. Excruciatingly painful. And then she did a rectal exam without even telling me that she was gonna do one. And like, it was just so jarring. And then the last thing she said to me was she just completely ignored me complaining about pelvic pain or period pain. And she said,

Dr. Ginger Garner PT, DPT (16:31)

Yeah.

Nathali @endocipota (16:39)

here’s a birth control prescription before you ruin your life.” And she was like, you should just move back in with your mom and finish school.

Dr. Ginger Garner PT, DPT (16:48)

Wow. Yeah.

Nathali @endocipota (16:49)

I’m getting emotional right now because it

was just, here I was like thinking I was doing a good thing.

Dr. Ginger Garner PT, DPT (16:58)

and going to a place where you should have sanctuary, support, all of the things that if you don’t provide that as a healthcare provider, you have no business being in healthcare and you got the exact opposite of what it should be.

Nathali @endocipota (17:12)

The opposite, and it was also validation of like my mom’s, my family’s kind of conversations around women and their bodies, right? That like, I should be ashamed. I shouldn’t have come here looking for a way to make sex a healthy experience. And it was hard. I really…

Dr. Ginger Garner PT, DPT (17:21)

Mm-hmm.

Yeah.

Nathali @endocipota (17:40)

Debate it because

I didn’t want to go back to her ever again. She told me to come back for a pap smear. And I was just so ashamed. I literally thought she was gonna call my mom. So that was the first experience I ever had with a gynecologist. And then I was experiencing again just another year of like worsening symptoms. the period week was terrible. mean, it was just…

Dr. Ginger Garner PT, DPT (17:53)

Mm.

Yeah, it’s awful.

Nathali @endocipota (18:11)

excruciatingly painful, excessive bleeding. I’m talking about almost two weeks of nonstop bleeding and it was, and it wasn’t just like, it’s just heavy. It’s like gushing blood where like I’m constantly changing my path throughout the day just to be able to make it through a day’s work. And this was a time where like I’m living alone. I’m paying all everything by myself. I’m barely making enough money to afford anything. And I’m trying, I’m just trying to get through college. And, and, and so

nutritional eating, that’s, I’m not thinking about that. I’m getting a Subway $5 sandwich and I’m splitting it for lunch and dinner just so that I can make sure that I have a meal twice a day. I’m trying to buy books, right? Nobody told me. And that’s another thing, right? Nobody went to college in my family before me in the United States. I was the first one. And so I’m the oldest of like, no exaggeration, 27 cousins, you know, two siblings.

Dr. Ginger Garner PT, DPT (18:45)

Mm-hmm. Mm-hmm.

Well,

Nathali @endocipota (19:10)

And so I

Dr. Ginger Garner PT, DPT (19:10)

yeah.

Nathali @endocipota (19:11)

had no one to be like, what’s college like? What should I prepare for? I didn’t even apply until my band teacher is the reason I went to college, because he was like, who filled out their applications? And it was like June. Right. I didn’t know kids went with their parents to go look at places. And my mother didn’t either. Right. Like my mom was just trying to survive. And so it was that kind of, you know, so so here I am.

Dr. Ginger Garner PT, DPT (19:14)

Mm-hmm.

Ugh.

Yeah, yeah.

Nathali @endocipota (19:40)

wondering what am I doing wrong and what is so broken about me that I can’t navigate college and work and I have this pain, right? It must be because I’m eating the subway footlongs. It must be because I’m not able to exercise as much as everybody else. And there’s something wrong inherently with me that I’m feeling this way. I’m a wuss, I can’t take it because…

Dr. Ginger Garner PT, DPT (19:44)

Mm-hmm.

Yeah,

yeah, what starts out as like what we think is healthy self-inquiry quickly turns into the dark side and becomes self-gaslighting.

Nathali @endocipota (20:16)

Exactly. And, and, and like my, we’re talking about like my parents too, who like for at that point, 20 years of my life, all I see them is working 60, 70 hour shifts, and able to come home and cook and clean and take care of us and do our lawn, you know, and, and, and do all these things. And here I’m all I’m expected to do. I’m so lucky that all I get to do is like go to college and work. but I can’t even do that to the best of my ability cause I’m in debilitating pain.

So I finally am like, all right, I gotta go see another gynecologist. She’s, I wouldn’t say it was a positive, safe experience either, nothing like the first one, but she very much was like, okay, well, you’re here. Yep, everything checks out. Here’s a pap smear. Periods are painful. Don’t know what to tell you. Okay, here’s birth control, right? And that’s the thing that always drove me crazy was why are you giving me this?

Dr. Ginger Garner PT, DPT (21:12)

Yeah.

Nathali @endocipota (21:15)

biologically, why do I need this? Can you please just explain it a little bit as to why I need this medication? Because that was another thing my parents were very much against. They were like, your nutrition is eaten, right? Like if you just eat well, you’ll never have a disease in your life. So, and so to have this thing that’s supposed to prevent pregnancy, you’re not explaining to me why I need this, right? Because I’m telling you that I’m practicing family planning in my own way, but why are you giving me this? And so…

Dr. Ginger Garner PT, DPT (21:36)

Mm-hmm.

Nathali @endocipota (21:44)

Another prescription that just went in the garbage. I think I found somebody else like three months later, similar situation. Pain is normal. Nothing. Everything is fine. Your sonograms are clear. I don’t see anything. You may, you may be, you may be experiencing pain because you’re fat and you got to lose weight. looking back now, I mean, I was like a hundred pounds lighter then. And what I was is curvy.

Dr. Ginger Garner PT, DPT (22:03)

Mm.

Nathali @endocipota (22:13)

I’ve always had a really big butt and big thighs no matter what weight I’ve been on. And I was very active because I was running around all over New York City trying to make it to work and college and trying to exercise, you know, and find time for it. Not at a gym because I couldn’t afford it, but just trying to stay active. And this time I started Googling stuff and again, kids have it great nowadays. You have Chat GPT.

Dr. Ginger Garner PT, DPT (22:22)

Yeah.

Nathali @endocipota (22:42)

Google searches back then sucked. mean, you put something in and you wouldn’t really get much and WebMD had started to like pop up. And I distinctly remember putting in all my symptoms and the word popped up, endometriosis. And I remember that like it said like the causes of it was like having a career. It was an STD. Right.

Dr. Ginger Garner PT, DPT (23:08)

Mm.

Nathali @endocipota (23:12)

And that explanation that it’s, which we know is not correct, the uterine lining somehow getting out in the body and growing, right? Retrogradement, yeah. Yeah, Samson’s theory, which we know is widely debunked now. We need more research there, but. So I was like, interesting.

Dr. Ginger Garner PT, DPT (23:18)

Mm-hmm.

Yeah, love retrograde, menstruation, fallacy.

Nathali @endocipota (23:39)

I was like, so my uterine lining is growing. All right, so I’m trying to, I was always like a biology nerd. I don’t know why that’s not what I went into, like some sort of STEM field, but I guess psychology sort of counts. But I was like, okay, this is what it might be. It sounds like what I have, but I don’t have an STD. That’s so weird, right? And I was like, and I don’t have a career, but I guess I want to go to college. I’m in college, I’m trying to finish.

Dr. Ginger Garner PT, DPT (24:02)

the

medical misogyny there is just massive. It’s massive. So you’re listing things like you have these cultural stigmas, misconceptions about menstruation, what it should be, that it shouldn’t be painful, family dynamics, medical gaslighting, you you have all of these things that…

Nathali @endocipota (24:09)

Right!

Dr. Ginger Garner PT, DPT (24:27)

And you your story about being first gen college student have the same thing too, so that you’re navigating this very low health literacy because where you grew up, how you grew up, that no one went to college and here you are, you know. That’s an enormous amount to overcome. That would be an enormous amount to overcome without endo.

Nathali @endocipota (24:42)

Exactly.

gosh, yes. And that’s like a huge thing. Right. And again, this isn’t a conversation I’m going back to having with my mom or anybody in my family, because one, I’m ashamed. I’m mortified that I’m having this experience. There’s like this thing culturally, like in my family, too, or like, if you have an illness, God’s punishing you for something. Right. So

Dr. Ginger Garner PT, DPT (24:50)

All right.

Mm-hmm. Mm-hmm.

It’s like a

prosperity kind of gospel, which a lot of people in the deep south have the same thing where if you’re wealthy, you must be a great person. Or if you’re blessed with something material like a good health, therefore you must be a good person or the opposite.

Nathali @endocipota (25:28)

Exactly, exactly. so, and nobody in my family talked about having painful period. I didn’t find out until after my grandmother passed away that she had intense, horrific period pain in her life. You know, and that she had a hysterectomy when she was done having her kids, right? And then thing is to my mother, was hard for her to empathize because like, she’s one of these women that’s like, my periods never hurt. They were always wonderful. My pregnancies were great. I didn’t feel anything.

Dr. Ginger Garner PT, DPT (25:41)

And she suffered with it her whole life.

Yeah.

Nathali @endocipota (25:57)

And so for her to see her kid like come and make a boiling tub of water so that I could go in and burn myself, right? She was just at a loss. So I’m not talking to anybody about this. And also I didn’t even know that the way the doctors were treating me wasn’t okay. I had nobody to share that with either or an adult to come and…

Dr. Ginger Garner PT, DPT (26:06)

Mm.

Right, yeah.

Yeah.

Nathali @endocipota (26:20)

advocate for me, right? Like I have patients reach out to me and they tell me how they’re taking their parents and I’m like, yeah, take your parents take anybody that can come and kind of like validate what you’re saying. But like I, it’s not like I could have my mom come into the room. Shame aside, you know, I, she spoke English, right? But not healthcare English, not English to navigate a situation like this. You know, for her, you just have painful periods. All the doctors are saying this is normal.

Dr. Ginger Garner PT, DPT (26:21)

Yeah.

Yeah.

Mm-hmm.

Nathali @endocipota (26:51)

So I remember that this must have been like maybe the fourth doctor at this point, the fourth gynecologist. And I kept choosing women also because I didn’t want a man to touch me there. that, I might as well just throw myself, you know what I mean? Just throw the family honor out the window. So it makes me think of Downtown Abbey when they talk about house of ill repute, right? Like that’s not what I was trying to bring down on my own.

Dr. Ginger Garner PT, DPT (27:11)

Yeah.

Hmm.

Nathali @endocipota (27:20)

family. And, and so I remember I said to her, was like, listen, I, I’ve been to all these gynecologists, this is what they’ve said. But, but please, I was like, here’s, and I was like, here’s some sonograms I’ve taken. But please, like, I am in just so much pain. I’m fainting, I’m bleeding excessively. I just, I just need somebody to let me know what could it be this thing that I found. It’s called endometriosis.

And she gave me a look of such disdain. And she literally looks at me and goes, where did you find that? And I said, I searched, I searched online and she said, don’t doctor Google me. And she was like, you don’t have that. You’re too young to have that. Women your age don’t have that. And she’s like, what you have is just normal periods. And she’s like, you’re, I see here that you’re refusing to take birth control.

Dr. Ginger Garner PT, DPT (27:58)

Hmm.

Ugh.

Nathali @endocipota (28:17)

She’s like, if you take birth control, you’re gonna feel better.

Dr. Ginger Garner PT, DPT (28:21)

So what happened?

Nathali @endocipota (28:22)

And so I, that was the end of it. And so I was just like, all right, like it’s me, like I’m a wuss. I can’t handle it. I can’t handle being a woman. I, I, this is my fault. Like, and then also I’m fat. Am I eating nutritiously? Latino food is so unhealthy. Rice is terrible for you. Beans are terrible for you. All your food is fried. I think what she was thinking of is a particular type of cuisine, but Central American food is actually,

Dr. Ginger Garner PT, DPT (28:32)

.

Mm.

you

Nathali @endocipota (28:53)

on its basis vegan. Because meats and stuff were introduced later by the Spaniards. So anyway, for her to make that assumption was bizarre to me because I was like, there’s not a lot of fried food that my parents made growing up, but whatever. It was just lot. So I think a year passed by of worsening symptoms. mean, I could barely focus on school.

Dr. Ginger Garner PT, DPT (29:09)

Thank

Yeah.

Nathali @endocipota (29:20)

I was barely making, barely able to make it to class, which just created a whole other, because the only thing that anybody ever cared about in my family was, it wasn’t, are you doing? How are things going? Blah, blah, blah. was how’s school going? Like I was care, like I was going to be the first kid, the first grandchild to go to college, right? And, and so that’s all anybody ever asked me about. And that’s all anybody ever cared about. And it was my entire identity was that I was this college student with aspirations and goals and who knows the sky’s the limit, right?

And so I think a year passed by before I even tried again to talk to somebody. And then I had my friend telling me about how she had started seeing a gynecologist, my best friend. And she said, you know, maybe you should go talk to him. And I said, a man? And she was like, yeah, she’s like, you know, he’s really nice. And, you know, he, my mom, he delivered me. He delivered all these babies in my family. Maybe he can help you.

Dr. Ginger Garner PT, DPT (30:15)

I’m

Nathali @endocipota (30:20)

I was desperate at that point. I mean, desperate. I think at the, and I also had even seen a gastroenterologist. They told me to go see one because they said this must be stomach issues that you’re having. That’s not, that’s not period stuff. Cause I was suffering from a lot of constipation, which I would learn later, has a lot to do with the pelvic floor. And so,

Dr. Ginger Garner PT, DPT (30:22)

Yeah.

Mm-hmm. Mm-hmm.

Nathali @endocipota (30:46)

I was, so I went to him and I literally, I was so defensive, so on guard. And I was just ready, I was like, I’m gonna walk out if he talks to me a certain way. And I was terrified, but I went in his office. He was so incredibly kind. Literally just, he did a quick examination and he walked me through every single thing he was gonna do and touch and see.

didn’t even look right. He was kind of doing this thing when he was like doing internal checking, whatever. had me dress, I go into his office and he tells me, explain to me what’s going on. And I tell him the whole thing and he, I’m gonna cry. And he looked at me and there’s like a big, I grew up in Brooklyn. So like you grew up with like people from like all different cultures. So you speak little words from all these languages. And so

He looked at me and he said habibi, which is Arabic for my love, right? It’s a term of endearment. Like you would say to a young girl, a kid, and he says, habibi, I think you have endometriosis. And I didn’t say the word endometriosis to him. I didn’t even say it because I didn’t want him to have the reaction that that other woman did. And he said, I’m really sorry. This is a painful disease. And he said, the only way that I can even tell is if we do a surgery.

Dr. Ginger Garner PT, DPT (31:49)

Mm-hmm.

No.

Nathali @endocipota (32:11)

which looking back now was huge that he even had the insight to do that. And he said, it’s the only way. I’m so sorry that we have to do a surgery, but it’s the only way. And then your best bet is to go on birth control because it helps control the endometriosis growth. And you you got to decide, you got to decide to have kids soon because you’re going to be infertile by the time you’re 30.

And we got to do a hysterectomy as soon as I can. And I was 21. And I just, I left, called my friend immediately and I was just hysterical. I was like, I’m infertile. I have this disease. I have to have surgery, right? Just like gobsmacked with all of this. And I think that like,

Maybe a year ago, I wouldn’t have even done what he suggested, but I wanted them to just go inside. And if there was nothing, then there was nothing, but at least I would know that I wasn’t crazy. And so we did that and we scheduled the surgery. I failed out that semester because I had no idea what I was getting myself into. But we did the surgery. He did ablation, burning the top off of the endometriosis, which is not the appropriate treatment for endo.

Dr. Ginger Garner PT, DPT (33:20)

you

Nathali @endocipota (33:38)

and he closed me up and what he sent to the pathology lab concluded that it was Endometriosis and I mean when I woke up and he and he’s explaining this to me I would I just I was just so happy because because I wasn’t crazy I was like look there’s there was something inside of me and I think it made it really real for my mother too

Dr. Ginger Garner PT, DPT (33:55)

Yeah.

Yeah.

Nathali @endocipota (34:04)

Right,

because it’s not that she didn’t believe me, but I think she was just like, what is she complaining? Like nobody in the family deals with this, right? As far as we know. And that was it. I had a name for my pain, but that was it. I would then have to endure eight years of horrific worsening symptoms before I even discovered this whole other world that I’m now involved in.

Dr. Ginger Garner PT, DPT (34:26)

Mm-hmm.

Yeah, yeah. So when did you, because gosh, you’ve touched on so much about access to healthcare, about multiple experiences being medically traumatized due to gaslighting, about not having an advocate. And to get to the point where then at some point, I assume that in that eight-year evolution, you learned about

excision and you know the gold standard and what happened from there? Was it eight more years then?

Nathali @endocipota (35:05)

So, so no, it was so, so from 21 to 29, mean, so now 21 year old Nathali gets the name 29 year old Nathali found endometriosis groups, right? Cause now the internet is starting to fill up with endometriosis, right? I have this word to search now over the years. And you know, it kept being a lot of nothing online until finally you find like Facebook groups and all this other stuff and.

I found like a support group that was, in my opinion, awful. A lot of these women, I just couldn’t relate to their experiences. I was childless by choice at that time because I still am, I still am, because I just, I couldn’t see myself, I didn’t feel ready to have a kid. I was really focused. I finished school, thank God. Like it took a lot longer than it should have, but I finished my college degree, which taught me research.

Dr. Ginger Garner PT, DPT (36:02)

Yay. Yeah.

Nathali @endocipota (36:04)

Right? So

think it’s like people think, you understand people. And I’m like, no, I know how to read or research people pretty well, is what I know how to do. you know, navigating a relationship and starting my career in finance, right? Like I ended up in hedge fund and hedge funds. And because I needed health insurance, I needed to pay off my student loans.

Dr. Ginger Garner PT, DPT (36:09)

Mm-hmm.

Yeah.

Yeah.

Nathali @endocipota (36:30)

and

I needed health insurance. This wasn’t, my career wasn’t born out of passion, it was born out of pain. And being able to just afford all these doctors that I have to see all the time, just to make sure that I wasn’t dying. Cause I was in the ER every year, right? There was always one episode that I was like, this is it. This is the one where I’m gonna die. I don’t know what’s exploding in me, but something is. It went from feeling bad one week a month, two weeks a month.

Dr. Ginger Garner PT, DPT (36:35)

Hmm.

Mm-hmm. Mm-hmm.

Mm-hmm.

Nathali @endocipota (36:58)

the entire month, the entire month I feel terrible. The week of my period is the worst and having a lot of jobs where like I just didn’t even have benefits, I couldn’t take off, right? Thank God for New York passing the law where they were forced to give sick time because I worked at places where I didn’t have sick time. I worked holidays for years just to be able to get by and pay off the things that I needed to. And so like,

Dr. Ginger Garner PT, DPT (37:08)

Yeah. Yeah.

Nathali @endocipota (37:28)

this whole life of like, what is Nathali going to do? Right? Because I was like the honors kid and the smart kid and the science fair kid and I felt like a loser. I was just like, what am I? I haven’t been able to do anything because like I’ve had to just take jobs to be able to pay stuff off and have health insurance because I couldn’t even afford my birth control. It like $50 a month. And my parents weren’t in a position to help me.

They just couldn’t. And so I’m trying to always find new stuff. And so I found one group that was just like a lot of what felt like Midwestern women who were very religious that were just trying to have kids. And that’s what the groups were about. It was like, yeah, can’t get pregnant, can’t get pregnant, can’t get pregnant. Wasn’t my focus. My doctor kept telling me, when are you going to get pregnant? When are you going get pregnant? Not only is it going to help your endometriosis.

Dr. Ginger Garner PT, DPT (38:12)

It’s all fertility driven.

Yeah.

Yeah.

Mm.

gosh. Makes my head roll.

Nathali @endocipota (38:27)

but then we could finally do the hysterectomy, right? And I had

done a lot of work to just kind of be like, I’m never having kids, right? It’s just not gonna happen. I’m not gonna set myself up for that disappointment. And then I remember there was one post that somebody made and somebody said, I hate Nancy’s Nook. They’re so mean there. I hate that group. And I was like, what is this group?

Dr. Ginger Garner PT, DPT (38:53)

And that’s how

you found out? my gosh. my gosh.

Nathali @endocipota (38:56)

And so I joined Nancy Znuk and the

overflow of information.

Dr. Ginger Garner PT, DPT (39:03)

Your head just got

just exploded.

Nathali @endocipota (39:06)

a different stratosphere. Learning about Dr. Redwine, learning about Nancy’s story, learning about excision, learning reading all these stories of people that just had so much success with this surgery. Which was like so punk rock too. I was like look at these doctors just like I don’t care what your status quo is like this isn’t helping people we’re going to do something different.

Dr. Ginger Garner PT, DPT (39:07)

Yeah.

Mm-hmm. Mm-hmm. Mm-hmm. Mm-hmm.

Mm-hmm.

Nathali @endocipota (39:32)

And so I sat on that for two years, because I kept reading that the surgery was expensive. I never inquired, but I was like, well, I know for sure I can’t afford it. can barely pay my bus fare right now. just, you know, my suit alone weren’t obscene at the time. I don’t even know how I had money for food. And I sat on it for two years because I just, just, and then sometimes your pain gets better. So you gaslight yourself and…

Dr. Ginger Garner PT, DPT (39:37)

Yeah.

yeah. Yeah.

Nathali @endocipota (39:59)

And then also like I would go through bursts of being able to like over exercise, over restrict my eating and just like I’m gonna fix this holistically and I’m gonna, know, and I’m doing everything holistic I can find and paying for programs on Instagram and, you know, paying for nutrition plans from people that shouldn’t be giving me nutrition advice and also still not talking to my family about it. Like my family just had no clue what I was going through. And everything that I learned,

Dr. Ginger Garner PT, DPT (40:05)

Mm-hmm. Mm-hmm.

Mm-hmm.

No.

Yeah.

Nathali @endocipota (40:29)

in those eight years about healthcare, I took a job at a health insurance company just to learn about healthcare. Like I was one of those people that when you called, I was the one that picked up and helped you navigate care. And then I realized like how complicated it is and how much my mom couldn’t help me if she wanted to because this is something that like, even if you are multi-generational in this country, you probably don’t really know how to navigate.

And then you have to understand the nuance of like, I mean, this is a huge conversation right now in the media, but it’s like, everything’s gonna get denied and it’s the first barrier to you not even asking for it again, right? They don’t want you to come back and ask for it in the interest of money, right? And so that’s how I then learned how to understand what a schedule of benefits is.

Dr. Ginger Garner PT, DPT (41:10)

Mm-hmm. Mm-hmm. Yeah.

Nathali @endocipota (41:20)

What does this mean? What is my copay? What’s an out of network provider? Can I get reimbursement for an out of network provider? So that’s where I like learned all that stuff. He did that job. It was six months. And then that’s when I took the job at the hedge fund. So then 29, my whole life fell apart. My pain was the worst it ever was. What made it better was getting rid of my ex. And…

Dr. Ginger Garner PT, DPT (41:26)

Yeah.

Mm.

Meh.

Stress and that role

in pain is a real, it’s a real deal.

Nathali @endocipota (41:49)

Absolutely. I had started therapy,

right? So I was really starting to just like, cause I didn’t even understand it at the time, all this trauma I’d been through, right? Medical trauma, family trauma, everything trauma. And so here I am like processing all this stuff and I meet who is not my husband and he was the first partner who I had who was like very interested and he’s like, what’s endometriosis? What’s going on?

what does it do to you? Very supportive, very kind. And then he said, you know, this excision surgery, can we work something out where like you start to save for it and we can, and I had already started to save for it, but he was like, what can we do to speed this up? So that was another huge hurdle that I didn’t even realize that I had was financial literacy.

Dr. Ginger Garner PT, DPT (42:42)

Yeah.

Nathali @endocipota (42:42)

understanding what a loan is, understanding that I was paying the minimum on the loan and that that’s why the needle wasn’t moving. Understanding how to save money, right? Like again, just more financial literacy and how things work that like I didn’t, I would have never learned from anywhere else. So that was like a huge change in my life.

Dr. Ginger Garner PT, DPT (42:49)

Mm-hmm.

Nathali @endocipota (43:07)

Literally, it’s like it was meant to happen. We went on a date. I felt this horrific electrical pain in my pelvic area. And at this point, my legs are throbbing 24 seven. Every step is horrifically painful. My pelvic area feels like somebody scratched it with razor blades and is just shoving lemon and salt all over the entire cavity. Everything hurts. Everything. I’m just, it’s just pain 24 seven.

Dr. Ginger Garner PT, DPT (43:15)

Hmm.

Nathali @endocipota (43:35)

I can work out for periods of time and then I can’t. It was just awful. And I felt like something fell out of my vagina. So I run to go see my doctor, the same one who diagnosed me, and he does an exam and he’s like, you have pelvic prolapse. And I was like, what? And he was like, I’ve never seen this in a patient who hasn’t given birth. And he was like, you have prolapse. And he was like.

Dr. Ginger Garner PT, DPT (43:47)

Mm-hmm.

Nathali @endocipota (44:02)

And then again, just it turned into like this chastisement of like, what are you waiting for? You got to get pregnant. We have to do a hysterectomy and now I’m going to have to stitch your uterus to your abdominal wall because it’s falling out. And I, and was like, what do you mean? And so I was like, is this related to my endometriosis? And he was like, no, it has nothing to do with it. So, again, other devastating news, go in Nancy’s Nook. I type in pelvic prolapse.

Dr. Ginger Garner PT, DPT (44:18)

Yeah.

Nathali @endocipota (44:32)

didn’t really find much. I Google who treats pelvic prolapse, pelvic floor therapist. I’m like, what the heck is a pelvic floor therapist? I go back and Nancy’s Zuck and I’m like pelvic floor therapist and all these posts from Dr. Sallie Sarrel pop up and I’m reading all these posts and then I see that she does this thing called the endometriosis summit and she just had a bunch of videos where she’s talking to endometriosis experts and I’m like, so there was a whole episode on poop.

And I was like, this is me. I was like, I have that pain. My butthole hurts. I have constipation. it was just, and so I’m watching all of these videos and I’m like, that’s me, that’s me, that’s me. And so I was like, okay, maybe she’s the person that can help me with this and let me know if it’s also endo. Go see her. My boyfriend at the time, now husband, goes with me.

Dr. Ginger Garner PT, DPT (45:04)

Yeah.

Nathali @endocipota (45:28)

And she just gets right to business and she’s and I wrote her like a desperate email too and she was just so kind in the response to it. She probably gets so many of these and and I go in there she just gets to business and she’s like, you know, prolapse. She was like, you have pelvic floor tension. She’s like, has anybody told you you have a hypertonic pelvic floor? And I was like, how has my gynecologist been in there since I was 21 and he didn’t tell me I had a pelvic floor?

Dr. Ginger Garner PT, DPT (45:50)

First of all, yeah, how?

Nathali @endocipota (45:57)

pelvic floor tension.

And she, she’s like, you, you, well, that’s one you have hypertonic pelvic floor. And it’s funny, I actually printed this out. So this is what I took to go see her. I had a little body chart and I had put an X like tracing where like I had pain and she was like, you just mapped out your, your, you know, your inguinal nerves, your genital femoral nerves. She’s like, you, mapped, it’s all mapped out. I said,

Dr. Ginger Garner PT, DPT (46:08)

gosh, Yeah, yeah.

Mm-hmm. Mm-hmm. Like you looked

in an anatomy book and mapped it out. Yeah.

Nathali @endocipota (46:26)

Yeah, and I was like, what’s that? And she, you know, she’s like doing her thing and she’s like, I think she was like, I think you might have hernias. She was like, I can’t tell. I can’t diagnose that for you, but we can send you somewhere. And then she was like, you know, and you have the endometriosis. So, you know, this might be what’s going on. And I was like, you know, and I have ovary pain all the time. And she was like, your ovaries are here. That’s your bladder. So I got like an anatomy lesson validation.

Dr. Ginger Garner PT, DPT (46:28)

Mm-hmm.

Yeah.

Nathali @endocipota (46:54)

and you know confirmation that I wasn’t insane, I didn’t have prolapse and that endo absolutely can cause all of these horrific things that I’m experiencing all in one shot.

Dr. Ginger Garner PT, DPT (47:03)

Mm-hmm.

Yeah, yep.

Nathali @endocipota (47:06)

and another tearful night. so, you know, I was very privileged at the time that I could afford to see her, you know, Dr. Sallie had very reasonable rates at the time, but it was still out of network. I had an insurance plan that was able to pay me back for them. And within a few months, like I saw her, I think like in June, maybe.

Dr. Ginger Garner PT, DPT (47:22)

Yep.

That’s good.

Nathali @endocipota (47:35)

I was having excision surgery by December with Dr. Vidali here in New York City, who also just huge validation, somebody who was able to speak my language, somebody who understood, just complete like 180 to what I was experiencing before. And so we also spoke to Dr. Zolland who’s an occult hernia specialist and he

He was like, yeah, again, all my scans all my life were perfect, normal, nothing. He looked at an old CAT scan and he was like, you have hernias, maybe two or three. And so we did the excision first to see what would happen. The world shut down in 2020, two months after the surgery. And that year was hard because I couldn’t go see anybody in person for pelvic floor therapy, which I desperately needed.

Dr. Ginger Garner PT, DPT (48:29)

Yeah, this is so

important post-op.

Nathali @endocipota (48:33)

All the symptoms got horrific afterwards, post-op. mean, they were, my nerves were angry. My pelvic floor was angry. My bladder was angry. And so we were doing like, I was doing like virtual, virtual stuff. Once a vaccine came out, I felt brave enough to go in person. But the nerve pain was really bothering me. So I went for the hernia surgery because I was like, it either will fix something or it won’t.

Dr. Ginger Garner PT, DPT (48:36)

Yeah.

Nathali @endocipota (49:01)

At surgery time, turns out I had seven hernias. So it had two femoral, two obturator, two inguinal belly button. When I woke up from that surgery, which made me appreciate how difficult an excision surgery can be, and the excision surgery, it was all my peritoneal area. None on my organs really, a little bit on an ovary.

Dr. Ginger Garner PT, DPT (49:04)

my goodness.

Nathali @endocipota (49:27)

But basically like my entire, like where your pelvic floor is, like that’s where all, I had like these nasty clumps of, of endo that Dr. Vidali cleaned out, got diagnosed with adenomyosis. And he was the first person to ever run some hormone testing. And because of him, I find out that I had Hashimoto’s and PCOS, which was adding to the pain and discomfort. So just so many answers in such a short period of time. And,

Dr. Ginger Garner PT, DPT (49:39)

Hmm.

Nathali @endocipota (49:57)

I, it’s actually December 19th is going to be five years post excision surgery. I’m four years post hernia repair. My life is so different. It’s so different. My pain levels are usually a zero to a two. Periods are non-events. I, you know, they last four days now as opposed to two weeks.

I did pelvic floor therapy is really what like just saved my life. I did it twice a week for almost a year after. I started working with a personal trainer. I started powerlifting. I did my first competition this year. like it just, it just, and I’ve had ups and downs, right? Cause it wasn’t just the pelvic floor. was the nerves had to calm down.

Dr. Ginger Garner PT, DPT (50:34)

Mm-hmm.

Yes!

Nathali @endocipota (50:52)

bladder had to calm down and once and it took time for those things to kind of quiet down. And I’m in a fantastic place. Like I didn’t realize how much I had gotten used to and accepted as okay. How much doctors told me that it was normal that I was in that much pain and discomfort.

Dr. Ginger Garner PT, DPT (50:54)

Thank

Yeah.

No,

you weren’t believed, right? They didn’t believe you, that you were actually in that much pain.

Nathali @endocipota (51:19)

No,

no, not at all. And also, like I have, I know all of us with Endo probably have a high pain tolerance, but like, I also just wasn’t expressing it, probably the way they would have wanted me to. And so I just have such a different life now. I was able to keep my career, which I know is hard for a lot of people. And I like talking about that because the number one question I have is

Dr. Ginger Garner PT, DPT (51:27)

Mm-hmm.

Nathali @endocipota (51:47)

Is is like, you know, can I do I have to give up on my dreams and I’m like, I Don’t know But let’s talk about your symptoms and figure out if you if you can keep all your dreams Because it would be really cool if we could keep some of them. Maybe some have to be let go but some we can keep That’s my like diagnosis excision story story. I’ll stop there

Dr. Ginger Garner PT, DPT (51:59)

Yeah.

Yeah.

Yeah.

It’s like you face so much more discrimination. You may face so many more barriers. And, you know, as a first generation college student that and from the South where some of those cultural

super, super conservative, very limiting beliefs that are going to limit women specifically, right? We’ll be very specific about that. They’re only self-limiting for women or imposing those limits on women. So when you add all those up, it’s just, I just want to applaud you in so many different facets for everything that you’ve overcome because you just didn’t overcome Endo. If you were just

the midwesterner that you’re talking about, right? And you had to overcome Endo. Okay, that’s a lot to overcome Endo, but then you add all these other variables that probably at one point, probably at 15 points along the way felt like they were too much to overcome, that you wouldn’t be able to overcome them because there was too many things stacked against you.

Just being a woman means your pain is not going to be believed and you’re not going to be taken seriously.

Nathali @endocipota (53:24)

100%.

Dr. Ginger Garner PT, DPT (53:24)

And then you add,

yeah, you being, then you add all of the other variables in that we have talked about, the identity of the intersectionality of being both a Latina and a woman, navigating a healthcare system that doesn’t even know how to properly screen for endometriosis, right? And that the burden, and this is where we can, you know, say real clearly, we’re not trying to blame a system

Nathali @endocipota (53:43)

No. No.

Dr. Ginger Garner PT, DPT (53:53)

However,

if you look at what OBGYNs are faced with, it’s like, okay, we should think about there being OBs and GYNs, not OBGYNs. We should also think about there being non-surgical gynecologists and surgical gynecologists. There are cardiologists and cardiothoracic surgeons, right? So why don’t we have that for every single specialty in the body, except for women’s health, there is

Nathali @endocipota (54:03)

Yes. Yes. Yes. Yes.

Dr. Ginger Garner PT, DPT (54:24)

the non-surgical provider and the surgical provider. And then yet in OBGYN, the whole laundry list of everything that could go wrong or right with a woman’s body is laid down on one person to do everything. It’s really so unfair, so unbelievably unfair. And then, you know, we talk about navigating endometriosis across the spectrum, you know, of your life too.

Nathali @endocipota (54:37)

Yeah.

Yeah.

Dr. Ginger Garner PT, DPT (54:51)

So there’s just the need for specialized care in Endo and to be able to properly support Latino women with similar experiences to yours is the importance of that can’t be overstated. So, okay, so based on that, I have a few questions. One, I know that you didn’t have that support of community.

That deeply resonates with me because growing up where I did, there was a similar lack of support. Had they known, had your community known and been empowered with that information, it would have been different, but it wasn’t. It was what it was. You didn’t have that support. how have you, finding Nancy’s Nook, finding Dr. Sallie Sarrel, finding a community of women who’ve also gone through this,

Nathali @endocipota (55:27)

Mm-hmm.

Okay.

Dr. Ginger Garner PT, DPT (55:46)

How does community play a role in managing your condition like right now and moving forward? And what other resources have you found to be helpful?

Nathali @endocipota (55:56)

Yeah, no, that’s, that’s why, that’s why I’m even here talking to you. So, as usual, I always overthink things and do like a risk analysis. And it took me two years before I was like, am I going to talk about my story publicly? And does it matter? Right? Does my story matter? And more importantly, I don’t even care so much about my story. It’s more that I just want to help people navigate.

this in the way that like I wish somebody could have supported me just to tell me that like my life wasn’t going to be over or that and that I wasn’t have to give up on everything because I have endometriosis and and and and so at the endometriosis summit in march 2020 I was there I was fresh out of surgery I had signed up to volunteer right we there was like

Dr. Ginger Garner PT, DPT (56:44)

my gosh.

Nathali @endocipota (56:48)

We had heard of this pandemic thing, but it wasn’t the world wasn’t shut down yet. And and I got I got there and I was sat next to this other person who’s volunteering. Her name is Sarah Ramos, and she was a gorgeous Mexican woman from California. And she was probably one of the only other Latinas in this space that I had seen.

Dr. Ginger Garner PT, DPT (56:50)

Wow.

Nathali @endocipota (57:16)

And to meet another Latino with endometriosis was like, you know, again, not that I couldn’t empathize or talk to other people, but I was like, my God, we just clicked immediately. And we were just like, my God, you had to deal with that? Me too. Like, it, you know, how do you explain it to your parents? How do you explain it to your cousins? When you’re trying to eat differently, do you get judgment for it? You know,

Dr. Ginger Garner PT, DPT (57:25)

Yeah.

Nathali @endocipota (57:44)

what does it feel like to talk about fertility or lack of fertility in a culture that values family and building a family so much? It’s almost like my our sole purpose as women. And like it was just a venting session, a connecting session. And I mean, we built a sisterhood there that I didn’t know I was missing and I needed. And…

Dr. Ginger Garner PT, DPT (57:56)

Right.

Nathali @endocipota (58:10)

Because of the end of summit, I did meet other patients there and there was four of us who then were in a group chat during the pandemic, which was so needed because I had just, a few of us had just had surgery. Somebody had had a surgery a year out. Somebody had had, was going to have surgery. So we were able to all support each other and be like, I’m having this weird pain. this, know, we were all able to share information, talk to each other and just, just.

be able to talk about our symptoms and not have somebody be like, my God, do you want to go to the ER? And it’s like, no, the ER makes it worse or, or, or, my God, like, are you okay? And it’s like, no, I’m not okay. And, and, and, and just have like a group where I could just talk about endo and not be the person with endo cause everybody has endo. And, and so

Dr. Ginger Garner PT, DPT (59:01)

That’s it. Yeah.

Nathali @endocipota (59:04)

As we, and then Sarah and I talked about like, should we share a story? Should we talk about Endo? We don’t, we don’t, there, and there was a lot of like accounts that had started popping up on Instagram and you have like some of my favorite people and friends, Endo Fuck This Osis, right? Shannon’s a PhD and, and…

Dr. Ginger Garner PT, DPT (59:22)

Mm.

Nathali @endocipota (59:27)

and counseling and she’s, her perspective on endometriosis and how she navigated the disease and she would write about it was just so like, it was like this dry wit humor, and and either you either got it or you didn’t and that was so helpful I was navigating. Endo Girls blog, Katie, just, she’s a chemist. So she was giving her perspective on the disease and her assessment on stuff through the lens of a chemist.

And she was just facts based and that really resonated with me because, you know, that’s how kind of like my brain is wired. And there were women talking about their experiences and processing the disease and all those things. And so her and I were just like, you know, this is wonderful that we have this and we can talk to some of these people and be seen, but I don’t see anybody that’s Latina talking about it. I don’t see emphasis on Latina. We don’t see them on panels.

We don’t see them being invited to speak. And so we were very cautious about it and it took a while. So I was like, let me just do it. So I created the account Endo Cipota. Endo is short for endometriosis. Cipota is a colloquialism used in Central America. Salvadorans use it a lot. And it just means like girl, like kid, you know, but a woman.

And and I was like people will then know I have endometriosis and I’m Central American at the very least and And I just wanted to just talk about everything we’ve talked about like the first-gen struggles a lot of the Central Americans in the United States our first generation were the diaspora of of El Salvador Civil War and and

Dr. Ginger Garner PT, DPT (1:00:51)

Yeah, yeah.

Nathali @endocipota (1:01:09)

And now a lot of us came over, our parents came over in the 80s, had us in the 80s, and so I’m 35 and we’re not kids anymore. We’re educated, right? We were the ones that, a lot of us went to college, a lot of us are educated, a lot of us are navigating the corporate world, the education world, the healthcare world for the first time. And so I was like, I can speak to those people, right? Like I can tell them like,

You want better insurance? Like I’ve navigated the corporate ladder. Like, let’s talk about what kind of insurance plans you should pick and that stuff. And I was like, I can share those experiences. Or just like, you know, the jokes that, you know, Latinos are kind of known for like picking on each other as a love language. I don’t really participate in that as much because I’m a little sensitive, but I was like, you know, sometimes you’ll get those questions from aunts like, you look fat. And it’s like, do you really want to be like,

I have endo bloating. I have this disease called endometriosis, which is, which is endometrial like an issue that grows outside the uterus, you know, like, it’s, it’s, like, how much is an explanation? Do people even get it?

Dr. Ginger Garner PT, DPT (1:02:21)

Right.

You don’t want to have to be a public health siren wherever you go.

Nathali @endocipota (1:02:25)

Exactly. And

so those conversations are on the holidays or why haven’t you settled down? Why don’t you have kids yet? Maybe in fertility something’s super difficult to talk about right now. And you know.

Dr. Ginger Garner PT, DPT (1:02:36)

Mm-hmm.

the level of boundary setting that you have to have in that cultural situation is like, it just got turned way up, you know? Yeah.

Nathali @endocipota (1:02:50)

Yeah, yeah.

so then like, so something like Below the Belt, which is a fantastic film, like we’ve all been so excited about it because it’s a real film that we can show with doctors and patients and legislators talking about this in a way that our families can be like, wow, like this is a serious thing. But even that film, right, like.

One woman, her relative is a representative, right? And in our government, one woman is like mortgaging her house to be able to afford excision surgery. Nobody in our family’s own homes, some do, not in my family, that like, my parents can’t mortgage any, know, like some of the advice to have excision surgery just doesn’t apply to people that don’t even know what a 401k is, right? Like,

Dr. Ginger Garner PT, DPT (1:03:41)

you

Mm-hmm.

Nathali @endocipota (1:03:44)

or

Dr. Ginger Garner PT, DPT (1:03:44)

Yeah.

Nathali @endocipota (1:03:45)

understand that you can advocate for certain benefits or advocate for certain things at a doctor’s office who maybe don’t even have the language to do so. Intergenerational wealth isn’t just things. It isn’t just money. It’s knowledge. So when I did the screening of Below the Belt here in Brooklyn with another amazing advocate, her name is Alicia Degrosa.

And she does a lot of advocacy in St. Kitts, which is where her mother’s from. And she also has that first gen multicultural experience. We made it on purpose. Everybody could have come. Everybody was welcome. But we were like, we want BIPOC people to know that you’re at the forefront of our minds. If you’re LGBTQ, you’re at the forefront of our minds. There’s a space for you here. You don’t have to identify as a woman and have endometriosis and come to our event.

And there’ll be a Latina and a Black woman here to talk to you about this disease, right? Like you can come and chat with us. And we wanted to make sure it was free because even though, and I like this quote about Latinos in general, right? Like we’re minorities, but we’re the new majority, right? We’re becoming a group that’s really powerful. We’re like the third most powerful voting group.

Dr. Ginger Garner PT, DPT (1:05:02)

Mm-hmm.

Yeah.

Nathali @endocipota (1:05:09)

And so I wanted to speak to them. I wanted them to know they were prioritized to come, but anybody could come and it was free and anybody who signed up to get a seat got a seat. And after the film, people were like blown away. We’re so glad that like there was a word for this thing that they were also navigating. They weren’t sure if they had endo maybe. Now after watching the film they do, but they’re like, I don’t have money to.

see an excision surgeon, like my family can’t help me pay for one. Like those doctors, can I even go see them? And conversations of like, you know, how does somebody like me navigate this? Like I don’t have a college degree, like I work this type of job and like these, I don’t know what my insurance is like. So that’s when I was like, all right, that’s okay, we’re gonna have conversations around this. And I’m like, Dr. Sinvero is an incredible doctor and if you…

you are dealing with the erastic lung issues, like we probably want to go talk to him and just reach out, reach out to the center for endocare, right? Heather Guidone leads the charge there. She’s an incredible advocate that has done so much for us. And I was like, just talk to them. Who knows? You know, let’s find out if there’s payment plans, right? And that’s kind of like the conversations that we’ve had because then it’s also like, well, why aren’t these doctors in network? And that’s like whole nother other podcast.

Dr. Ginger Garner PT, DPT (1:06:34)

That’s a whole lot of her.

yes, definitely. yeah. I was just going to point listeners to Heather’s podcast because she will be speaking with us as well. Yeah.

Nathali @endocipota (1:06:39)

But for some, but for a lot, sorry, go ahead.

Yay! Heather

is fantastic. so just these conversations of like, you know, family, you know, these other first gen Latinos who are like, well, doesn’t health insurance pay for everything? Shouldn’t they cover everything? So is this surgery safe because it’s not covered by my insurance? And so they’re like, some of this advice just kind of doesn’t make sense for me. And then like pelvic floor therapy. When I tell some first gen…

Dr. Ginger Garner PT, DPT (1:07:04)

We wish.

Nathali @endocipota (1:07:19)

women and people with with endometriosis about pelvic floor therapy, they’re like, the doctor puts their hand inside, you know, and I’m like, well, not always like if you’re not ready for that, you can talk to a pelvic floor therapist about other ways to mitigate those things. And and it’s just like, there’s just so much taboo around things that have to do with the culture have to do with the religion. And so I think that that really opened up my eyes to okay, there needs to be more conversations happening.

towards Latinos and more representation towards Latinos. And so when I started the Instagram page, which is like my only platform, I was like, I’m gonna have people talk that don’t typically get to talk, don’t typically get asked about their experience or how they navigated it. And so through a lot of like this digging, I’ve been able to meet pelvic floor therapists for a Latino and can maybe really directly understand so many of the things that we’re talking about.

that can understand that sometimes Latino families do everything united. If somebody has an illness, we’re all getting in there and it’s our business and we’re getting in it. having the support of your family is so important when you’re making a decision. Everybody gets a voice and an input and a judgment. And sometimes a doctor just being willing to talk to a parent or an aunt uncle or a sibling to explain it.

is so profound. And because we make decisions as a community, that’s our mindset. It’s always very community based. There’s a lot of individualism in the United States, which is a great thing. also, but it also can create isolation and it create a whole different type of spiral of shame, right? That like you could create for yourself. And so,

And so when I talk about this, like, this constant, like, and a lot of people are like, my God, my whole life I’ve been trying to measure up to this work ethic that I haven’t been able to be a part of because I have a chronic illness. And then I like it when people come to me because I could say, but you are so strong. Like your body survived like chronic.

Dr. Ginger Garner PT, DPT (1:09:15)

Yeah.

Nathali @endocipota (1:09:40)

excruciating pain for years and you still had a family, you still got married, you still went to school, you were still able to have this job, you were still able to do all these things. And I just have to reframe strength a little bit sometimes with other first gen kids. So it’s those kinds of conversations or conversations around being told that our food is unhealthy, right? Being told that our food is what’s making us sick.

And doctors really not taking a moment to look into what we’re actually eating, right? Yeah, because I was like, really the avocado and the sofrito, which is all the vegetables and the steamed chicken, like really that’s unhealthy, you know? And so having those conversations and reframing a lot of those things and putting it into a perspective of like, let me connect you with a Latino nutritionist that can maybe help you navigate the stuff if this is something you want to tackle.

Dr. Ginger Garner PT, DPT (1:10:12)

what you actually eat, yeah.

Right.

Nathali @endocipota (1:10:37)

Or let me explain to you how you can explain to your parents in Spanish what endometriosis is. And maybe they can understand it that way. Or do want me to talk to your parents? I can talk to them and explain to them what it’s like. And a lot of times, like the first gen kids, all we care about is making it whatever that looks like, whether it’s a career, whether it’s college, and being able to tell them, this is what you can do at work. You can ask for accommodations. Like you have the right for this. This is how you can navigate your healthcare.

This is what you could do at school to make things easier for yourself that I wish I had done. And so, or maybe you can’t have surgery right now, maybe you can’t afford it, but maybe you could see a physical therapist that’s covered by your insurance because pelvic floor therapy isn’t accessible to you right now. Because I know that that’s one of the biggest hurdles for a lot of people is accessing pelvic floor care. And so just finding other ways to get to this, because I think there could be a narrative like…

You have to have excision. That’s the only way you’re ever gonna survive this. And some people just can’t do that. They can’t afford it. Or they don’t wanna have the surgery. And I think it’s okay to have the conversation where it’s like, as long as it’s an informed decision and you understand what you’re signing up for, that’s okay. And not making people feel guilty or ashamed for their choices, because we have so much of that already.

Dr. Ginger Garner PT, DPT (1:11:46)

you

Right,

right. Well, and that kind of shored up my second question too, which was moving from the community and support into empowerment and advocacy, really. And so I was going to ask a question, which you’ve already answered, so you don’t have to, about advice you would give to other Latina women who are struggling but hesitant to seek care and how health care providers can better support Latina women in navigating endo.

So if you guys didn’t hear this brilliant answer, just press rewind and listen, because I got to ask the question last, but you answered it first. So thank you very much. I think that the importance of the experience of women who aren’t what we think of and what we see a lot of, which is the WASPy type of…

whether it’s the midwesterner that you mentioned or whomever it is, to be able to have that representation, to be able to see that there’s an entire spectrum of women that were probably likely, the more we talk about it, the more that we research it, realize that it’s at least one in 10. And if you look around, how many women, how many dozens of women do you see in a day?

Nathali @endocipota (1:13:25)

Yeah.

Dr. Ginger Garner PT, DPT (1:13:29)

Okay, there’s a lot of them that you just passed by from all different backgrounds, races, locations, gendered identity, et cetera, that have endo and that we need to reach. And so I really appreciate your time in taking the opportunity to say, okay, for all Latino women,

Here are the resources. Here is how it can look better for you. Here is your story, which is an incredibly, incredibly powerful story of a lot of suffering that I wish that you didn’t have to go through and that I know you and I both hope no one has to go through after this. And to mention too, I think one more point I wanna draw out about talking about excision surgery.

being a part of it, and it is our gold standard, but it isn’t the only thing that you have to do, and is the only, not the only thing to do, and if I draw and draw in like a personal piece of that puzzle, it’s why I think that I was able to delay diagnosis as long as I did, because that’s what I do for a living. And so, integrative medicine.

lifestyle medicine, functional medicine, managing inflammation, managing the nutritional triggers that can create systemic inflammation, making sure that estrogen metabolism is great and that we’re not introducing a bunch of xenoestrogens and fake estrogens into the diet that can really fuel it. If someone is carefully monitoring those things, then

you can mitigate and minimize the impacts of it. You can decrease pain if you are going to pelvic floor PT as well, because that’s yet another way to be able to manage and mitigate. I see a lot of patients with endometriosis and having endometriosis provides a unique perspective on that. But there are at least a half a dozen solid variables that are important.

even after someone has excision surgery that you well know has to be addressed from the pelvic side of things. And so I just can’t celebrate you and your journey and your story enough. Everybody needs to hear it. So thank you, Nathali.

Nathali @endocipota (1:16:03)

Thanks.

I appreciate

that and and I think I and I’m not trying to be like practice humility, but it’s it’s like so many of us have this story and and and some of us have been through such harrowing things and and Latinas con endo the point of Latinas con endo which Sarah and I co-founded together is is going to be that is that this disease can be so awful and dark and it can really put you in a mindset where

It can be very difficult to feel hopeful, but you can live your life. You can enjoy your life. You can have fun. Right. Like one of the most depressing things for me, and this is going to maybe sound a little stereotypical, was like not being able to dance or wear high heels as a Latina. Like it’s part of my cultural identity to do those things. And I was able to get back to it thanks to pelvic floor therapist.

Dr. Ginger Garner PT, DPT (1:17:02)

Yeah!

Nathali @endocipota (1:17:05)

and excision surgeons and

Dr. Ginger Garner PT, DPT (1:17:07)

Yeah.

Nathali @endocipota (1:17:07)

Sarah surfs, know, she has thoracic endo and she’s out there surfing, teaching salsa lessons. And that’s what we want is that you can still live an actualized life and you don’t have to give up everything. And we’re not medical professionals. We can’t tell you how to navigate the disease exactly, but if you’re missing that, the like…

Dr. Ginger Garner PT, DPT (1:17:14)

Mm.

Nathali @endocipota (1:17:33)

How can I get back to being in touch with my culture because a lot of it is so much dependent on my body? Like come talk to us. We’re happy. We have virtual group chats, you know, we have events where we have doctors talk to patients in Spanish and English. So that’s the point of it. That’s all of that suffering for this. thank you Dr. Garner for thinking about the cultural impact.

Dr. Ginger Garner PT, DPT (1:17:43)

Awesome.

Fantastic. Yeah.

Nathali @endocipota (1:18:01)

to endometriosis that people’s different identifying cultures has. It just, it does give it a different lens and thank you for recognizing it and for having me talk even though I’m not like, you know, a doctor or medical professional, but I am a patient that maybe I hope if a doctor’s listening, a medical professional, they can think, I didn’t think about that. That maybe my Latino patient might be struggling with this and maybe that’s why they don’t want this treatment.

Dr. Ginger Garner PT, DPT (1:18:09)

critically.

Yeah.

Nathali @endocipota (1:18:29)

Or maybe that’s why they’re hesitant to do this. It’s because of something cultural. So thank you.

Dr. Ginger Garner PT, DPT (1:18:34)

Yeah,

you’re welcome, you’re welcome. And really, it’s me thanking you for having the courage to be on. And because of that, I want everybody to know how to find you. So I know you have several different things happening. You have the Latinas Con Endo mission. Tell us about where we can find you. I know you’re on Instagram, so just give us kind of a rundown.

Nathali @endocipota (1:18:58)

Yeah, so if you want to talk to me, you can talk to me on Endocipota on Instagram. That’s E-N-D-O-C-I-P-O-T-A. You could join my WhatsApp group there. Well, we’ve turned it into the Latinas con Endo WhatsApp group, and it’s just a bunch of Latinas, but everybody’s welcome. If you have endometriosis and you need community, come join us. We have monthly virtual chats. Sarah hosts some in-person ones in LA.

You can follow the Latinas con Endo Instagram to find out more about what events are coming up. There’ll be educational ones as much as support ones. And yeah, I did give a list of resources that I love. So Endo Girls blog for science based facts. Rosemarie, Phillip and Katie from Endo Girls blog made a fantastic course that you can take. It’s free that’ll just teach you.

A to Z on endo. And I think education is such an important part of our of your own advocacy is really learning about your disease so that you know when a doctor maybe is telling you something that doesn’t sound great. And yeah, just you can find me on those places. I’m Nathali and I’m always happy to talk. I will get on a phone call with you. And if you need Spanish, English, I got you. I’ll speak to your parents. I’ll speak to your cousin. Just reach out.

Dr. Ginger Garner PT, DPT (1:20:05)

Yeah.

Amazing, incredible, incredible.

Thank you so much, Nathali, for joining us today.

Nathali @endocipota (1:20:26)

Thank you.