Pt. 2 A Tale of Resilience: Nathali’s Transformation Amidst Endometriosis and Surgery

Speaker 1:
0:03

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, Elana, and this is Indobattery charging our lives when endometriosis drains us. Welcome back to Indobattery. Grab your cup of coffee or your cup of tea and join me at the table as Natalie continues her story about the triumphs and the tribulations that she has faced in her endometriosis journey. This is where we left off and where we're going.

Speaker 2:
0:58

She has me stand up and she calls up the Captain Morgan pose and I put my leg up on the thing. She does what she has to do and she's like cough. And she's like you don't have prolapse. She was like you have a severely hypertonic pelvic floor. She was like you are extremely tense. And she was like what have you been doing? And I was like, well, I do high intensity and so we'll work outs and kicles. And she was like stop doing kicles immediately. You need loosening, not tightening. And that's when I started learning about the pelvic floor. And so my husband's there and we're both like gobsmacked by this like woman just pouring all the like, you know. And he's just saying they're like yeah, those are all her symptoms, that's all her stuff, you know, like we.

Speaker 2:
1:36

I started crying honestly because I would too. I hadn't. I'm just crying out. I had. I had never had that experience of somebody validating me in that way and I literally thought I was in the Twilight Zone.

Speaker 2:
1:49

And she's like you have endometriosis. We know that for sure, we know that for a fact. And she was like I think you have hernias. Who are you thinking of seeing? And I was like, oh well, I saw that there's Dr Badali here, and at the time Dr Orbuck was still in New York and I was like I don't know who to go to. And she was like, oh well, you know, that's your choice, you set your appointments. But she was like you know, I know Dr Badali. Well, we're doing this thing called the endometriosis summit. If you want to come next year. And she was like I just had excision and hernia repair. So she was like I also have a hernia surgeon that you could talk to. And I was like, okay, and so this was August Of what year she was able 2019. Okay, and she's able to do. I don't know what she did. She's doing manual therapy on me external right, external manual therapy, internal. I start seeing her weekly.

Speaker 2:
2:37

Dr Sally was able to give me one pain free day per week, sometimes two. I could have kissed her feet because I had been in so much pulsing, throbbing, raw wound, lime and salt being rubbed into burning pelvic abdominal pain for so many years that I forgot what it was like to not have pain. And so I trusted her and she just was able to keep giving me guidance and advice, and so what I got? I decided that I just wanted to see Dr Badali and I couldn't fill his packet out. I got it in August and I was terrified to fill it out. It took me forever to fill it out, not because it was difficult but because I was like, do I need this? Well, now that I'm pain free for one day a week, maybe it's not that bad, maybe I can still fix it. You know, I'm still like I could fix it with diet, I could fix it with exercise, I could fix it with whatever. And then I'm just like you know what? I'm just going to fill it out and I'm going to go see the hernia surgeon.

Speaker 2:
3:44

I go to Dr Zolland, who was also part of the Intermediate Stress Assignment faculty, and I gave him and I brought like an old CAT scan, because I know that he usually does MRIs, and he looks at the CAT scan and he's like oh wow, yeah, no. He was like you have hernias. He's like one, two, maybe three. He was like I'm not even going to do an MRI. He's like they're clear as day. Mind you, the CAT scan report literally says no hernias, because he's an occult hernia specialist and these are different types of hernias that you get from endo, from having a hypertonic pelvic floor and you have a pelvic floor so tight that it's tugging and pulling constantly just from walking and on top of that I'm doing like jumping and weights and whatever. You're playing, superwoman?

Speaker 2:
4:25

All the time Right, and I'm tearing holes into my body and I have no idea. And so he was like so now I have two decisions to make. Am I going to have hernia repair? Am I going to have excision? Am I going to do both at the same time? And I'm reading that you can cure hernias naturally.

Speaker 2:
4:42

And again I'm falling into the same trap again. And mesh is awful. The devil evil. Mesh will ruin you and kill you, right? And so I'm like I don't know what to do. And so I'm talking to Dr Sally about it and she's giving me all the information that I need. She's not swaying me one way or the other, she's just giving me the information that I need. I go see Dr Badali. He does an intravaginal sonogram and he was like I think you have a denomiosis as well. And he was like given your symptoms, he was like I believe you're a candidate for excision surgery. I believe that you do have anemitriosis and we're going to do some hormone testing, because I told him that I wanted a family plan. Nobody had ever tested their hormones before.

Speaker 1:
5:22

So-. No one ever does, even after you don't have a uterus half the time you can't even get hormone testing. This is a whole other topic, though, but yeah, yeah, hormones. Oh God, anytime somebody tells me something's wrong, I'm like hormones.

Speaker 2:
5:35

Check your hormones.

Speaker 1:
5:36

Yeah.

Speaker 2:
5:36

So this is August. Now, right In October, my now husband and I go to Japan. The surgery is schedules. I'm going to do excision surgery first In Japan.

Speaker 2:
5:46

I was wonderful, I barely had any pain. And then that's when I started learning about the mind-body connection, right, how my I'm diagnosed with PTSD and my reaction to triggers is for my body to tense up really badly, so it would make my pelvic floor even worse. And that week I was just able to relax and I was not pain-free but less pain. And I remember coming back sitting on Dr Sally's, laying on Dr Sally's table, and I was like Sally, you're not gonna. I call her Dr Sally. She hates it that I call her that, but it's her Instagram handle, so I can't stop myself from calling her Dr Sally.

Speaker 2:
6:18

She was always like can you just call me Sally? And so she's like and I was like Dr Sally, you're not going to believe what happened in Japan. She was like let me guess you had less pain. And I was like how did you know? And she was like there's something about my clients that when they're less stressed than they go on vacation, they just have less pain. And she was like it just makes sense. Right, november comes and I'm should I do the surgery? Should I not do the surgery? Should I cancel the surgery? I'm starting to feel better with pelvic floor therapy. It's getting better little by little. I'm able to walk and take a step and not feel a pulsing, burning, vibrating, throbbing throughout my body. You know, I'm just in other awful pain, but not like that.

Speaker 1:
6:57

But it's so funny how we are okay with just a little bit better, instead of like feeling not 100%, but even feeling like a human half the time, not just a pin cushion.

Speaker 2:
7:12

I think I just didn't remember because. And also, what I hadn't noticed was, like I've always been very feminine and I love expressing my femininity, so I loved wearing high heels and tight dresses and the way that I like to express it right, and that was always part of me. But like I hadn't even noticed that I was in leggings all the time and big flowy T-shirts to hide my endobeli and sneakers, which is totally fine, there's nothing wrong with wearing that but that's what I had started wearing all the time and it just wasn't me and I had lost a little bit of my identity and my confidence and like who I was, because I couldn't dress the way that I liked to and I say this because at the time it's November, I'm just like it can't be that bad, you know whatever. And then, literally the week before the surgery, I have the worst flare I've had in the years, probably the stress of it coming, and I was like, okay, I'm gonna do the surgery, like, even if they find nothing, at least I know that it's not under metriosis and I'm gonna do something else right. And that's what I tell people now, like at the very least you'll know that it's not endo if they find nothing right and like we both know that 100% of the time it's like you have endo.

Speaker 2:
8:20

I can't say enough about Dr Vidalhi, the staff at the Hoboken Hospital in Jersey and my due. This is August to December. This is a very short period of time. They were wonderful.

Speaker 2:
8:32

I told the anesthesiologist I was like you have to tell me when you're gonna put me to sleep, because I hate being put to sleep and I was like if you don't tell me, I'm gonna walk off this table. He was very kind to my and he was like I'm gonna let you know. So my mom's there, my sister, my now husband, I remember going in, waking up in the room and you know I'm like a little groggy and I already felt different and I know that you're an endocrine acesa and all that, but like I already felt different and I look at my mom and that moment before I could even ask if they find anything, dr Vidalhi comes in. He's like Natalie hi and he was like wait, and it's super self-way, yeah, yeah. And you know, and that's what I love about Dr Vidalhi, he's so passionate and proud of his work, right, like that's the kind of person you want doing surgery, somebody who's like. I'm gonna show you the picture and the video, because that's how good I am.

Speaker 1:
9:20

You know what I mean.

Speaker 2:
9:22

Like what's better than that? And he comes in and he was like you had your entire rectovaginal peritoneal area you know basically where your butt is and your vagina is, especially towards the left. I had masses of endometriosis by bronic tissue just piled up on top of each other, and I had little clear endo, which was baby endo. I call it baby endo. It's like new growth of endo, Right. It's a good word for it, though, and I didn't know baby endo is like the most painful. It can be the most painful because it's like this brand new growth.

Speaker 2:
9:58

And if you look at my images, you would have to be an endometriosis expert to see this, because it wasn't brown, I didn't have cysts whatever. I consider myself very lucky that I didn't have endometriosis on my uterus, my fallopian tubes. I had a little bit on my left ovary which she was able to excise. I didn't have it in my intestines. It was literally the mass of endometriosis lesions on my rectovaginal area that was causing constipation, causing the pelvic floor dysfunction. My body was literally like tightening up to protect itself from this alien tissue that shouldn't be there. And he basically scooped me out like a watermelon, like if you see the video in the pictures, like he just kind of cut in like a nice little butterfly shape. All of this mass of endo and everything he said to the lab was endo. And I cried. The second he walked out because I was like I knew it. I knew it. I'm not insane, I'm not crazy, I wasn't making it up, I'm not weak. Like I knew something was wrong and nobody was listening. No one, no one cared. No one cared to send me to like another specialist, nobody cared to send me to a pelvic floor therapist and these people just didn't know what they were talking about. So I was angry. I was so angry afterwards because it's like I wanted to. I just wanted to take that paper and be like look, I told you that I was in pain, I told you that I wasn't okay and you didn't listen. And I see Dr Badali for my follow up. He gives me the surgery video and he's like oh, by the way, do you know if you have PCOS? And I go I have no idea. And he's like you should check because your hormones came back and it looks like you might have PCOS. And I was like, should I see an endocrinologist for that? And he goes yeah, you should, which my PCP never told me to do, that he always. I asked once if I should and he told me, no, I go to endocrinologist. So not only do I now know that I have had this massive endometriosis excision, turns out I had undiagnosed Hashimoto's disease for my entire life and I had PCOS.

Speaker 2:
11:57

I made the decision to not take birth control afterwards because I just wanted to see how it would be like. It was suggested to me that I should stay on it so that the first period wouldn't be so bad post-excision, but I just wanted to see what it would be like. I can't explain how that the endometriosis pain for me was, very specifically, an raw, open wound with salt and lime being rubbed in and somebody just coming every once in a while and just ripping it apart with like razor blades. That's what it always felt like. That pain was gone, gone. Right now, as I'm sitting here, I do not feel that pain and I was shocked that it was gone. But then I had horrific throbbing, pulsating pain in my lower body and I didn't know why. Or I did know why Probably the nerve compression, right, it's 2020. The world shuts down. We don't know when we're going back to our doctors.

Speaker 2:
12:52

I had like one session with Dr Sally. Post operation I could barely commute to work. Honestly, even a month in. It was very difficult for me to walk. It was strange cause like I didn't have the endometriosis pain anymore, but I was like in what felt like worse pain than ever. But I think what it was is just in the absence of the endometriosis pain, the other pain generators that I always had were just screaming loud, taking center stage, cause that's what pain is. Pain is. Hey, pay attention to me, cause something's wrong. Right, pain has a function and I think I think we forget that there's a function to pain and so I'm trying to do virtual therapy with Dr Sally, but I think I should have known at the time cause her and I discussed it, me maybe seeing somebody else, but I was so attached to her I didn't want to leave her.

Speaker 2:
13:40

Right, really so, and I was hoping that, like when the world right and like and nobody's going to know what Dr Sally knows, right, I was so attached to her and we're doing virtual, but I literally can't walk for more than five minutes. If I walk for more than five minutes, I would say I spent those first 11 months post-excision. I was in a fetal position on my couch and thank God that it was COVID, because I would have lost my job. I just didn't know what to do and I knew that I had to just go get the hernia repair. At that point I was doing your block injections, which were helpful. I was doing pelvic floor injections, which were helpful. I was using suppositories, which were helpful. I would say they got me through those 11 months. But something physically about me wasn't getting better because I couldn't move. I just couldn't move and my body just changed so much. I gained so much weight. I'd never seen myself like this. Overnight, stretch marks erupted and it was a reckoning of my relationship to myself and my body and starting to learn how to be nice to my body and accept my body for what it's been through and be kind to it and that those stretch marks are okay. They were just making way for space that I needed at the time and being in a fetal position was my body trying to protect me from this pain that I was having.

Speaker 2:
14:56

So, november 2020, 11 months after having excision surgery, I have hernia repair and it's a little scary. We don't have a vaccine for COVID yet. It's at a surgical center, not a hospital At the time, nobody else can come. So I was just like again, if Dr Zollan goes in and he finds one little hernia and that's what it is, at least we know that it's not a hernia and I gotta find out what's going on. He goes in and he finds seven hernias. I have an umbilical hernia, I have two inguinal hernias, which is like where people would point out their ovaries. I have two obterator hernias, which are like down, like towards the inside of your thigh, and I have two no, sorry, that's femoral hernias and two obterator hernias, which are kind of like, in the same area. So I had twins on both sides of the body, equally Worse. On my left side, the openings were a lot larger and pockets of fat that had been ripped off my abdominal wall from having the tense pelvic floor have fallen into these tears and they were compressing the nerves. So he had to clean up debris out of these holes and close it up and cover it with mesh.

Speaker 2:
16:08

When I woke up, first of all, that surgery made me realize that I took the excision surgery for granted. Excision surgery is a major surgery. Yes, it is no joke. Yes, I would do 10 hernia repairs over an excision surgery any day. So and I say that for people to be kind to themselves, because excision surgeries are no joke and I can't describe it to you but the second that I woke up from that surgery, I felt like somebody had gone from the inside of my leg to my ankle and zipped me up. And it was like I was zipped up and it was nice and tight and my legs felt tight.

Speaker 2:
16:44

Dr Zollan comes in and he's like you had seven hernias and he's like it was worse on your left. He's showing you pictures Again. Another doctor who's proud of his work yeah, and you know Sally knows how to find really great doctors and he's like you know he was like have you ever had issues like not really feeling your left leg? And I was like, oh, yeah, I just you get you, you know. Yeah, of course, like sometimes I can't feel my left leg and he was like well, that should be better now, because you had a really bad femoral compression there. I repaired them all. Let's check in in a month. So in a month. The nerve pain is awful. My legs feel better, I feel sturdier, my legs feel like they can move more, but the nerve pain is like out of control. The pelvic floor pain is crazy. How could it not?

Speaker 2:
17:27

be, I had a major surgery. Then I had another surgery. I didn't have access to pelvic floor therapy, so I start pelvic floor therapy in 2021. I started going twice a week. A few months in, I started seeing a personal trainer because I was just so weak Again I had my abdomen stretched out again right, it's like six months just for your abs to go back together after surgery.

Speaker 2:
17:50

And you know, I'm not gonna lie Like I was feeling really defeated. I was like I've been. I butchered my body and I'm not feeling better. What did I? Did I make a mistake?

Speaker 1:
18:00

Right.

Speaker 2:
18:01

Maybe I'm just not fixable. Maybe maybe there's something about me that, just like, this is the life I have to live is in pain, but I had to remember what I learned from Sally I went to the endometriosis stomach in 2020, right before the world shut down Right, and that's why, like endometriosis education, post-excision is so important. Endometriosis I'm not trying to plug it here.

Speaker 1:
18:24

I'm gonna be there in March but like I'm gonna plug it real fast If you're going, you need to go. Like, if you have the opportunity and can, you absolutely should go, absolutely 100%.

Speaker 2:
18:35

And, in virtual, totally worth it. Yes, and if you can't go and you can't pay for the ticket, watch the endometriosis stomach videos. Yes, they are free 99 and you get free information from some of the best in the world yes, and so that's when I learned about like you gotta find your pain generators and you gotta work on them individually, because the excision took care of the endo, but your body got used to something being there for your whole life and it's gone now, but it's gonna keep reacting the way that it did. So it took a long time, but six months into pelvic floor therapy, I was able to walk 30 minutes. Six months after that, a year in, I was clear to lift weights and you're a power lifter, right? Yes, so in 2022, I was still working with that personal trainer, who is a goddess. I love Holly so much. She just happens to be educated in pelvic floor Because she she has worked with a lot of women who have had children, but she's I'm gonna Say how awesome she is. She's one of the directors of fitness at NYU for the athletes and we're just doing these little workouts, right, because I'm feeling better, we're trying to work up to it and then, all of a sudden I get a new job and this job has a rack with barbells on it and she's like have you ever used that before? And I'm like no. And she was like okay, let's start using it. And Then every week I was getting stronger and stronger. My pelvic pain is lessening, my nerve pain is lessening and I'm still doing injections. I'm still using suppositories. I'm using topical ketamine, valium, stuff like that to keep the nerves calm down, because you gotta calm them down. That's what pelvic pain rehab does. Oh, sorry, pelvic rehabilitation medicine, I think they're called now. The point is to get these nerves to just calm down. Right, calm the heck down. You're not in. Nothing's compressing you anymore, just right. So I'm still public floor therapy, injections, personal training.

Speaker 2:
20:32

And then I start noticing that I'm getting like really strong every week, every week, I'm gonna see if I'll lift more. And she was like you're really strong. She was like have you ever thought about powerlifting? And I was like what is that? I become obsessed. I start watching videos. That's what I saw my weekends doing. I'm like eating popcorn, watching powerlifting videos and I'm astonished at like what these women can lift. I'm like so inspired and I'm like I can do this.

Speaker 2:
20:55

Yeah, again, I'm doing so much work that, honestly, I kind of shut people out. I had to shut people out. I'm focusing on work and I'm focusing on my body because I wanted so badly just to get to some sort of better Mm-hmm. And Holly just says to me listen, I've, I'm tapped out. She's like I'm not a powerlifting coach, but I think you should work with a coach if you're really interested in this sport. And so she recommended my amazing coach, jacob, who Is just such a kind, compassionate type of person that you want to train you. It's not none of this no pain, no gain. You got to kill yourself. Whatever I explain endometriosis. He understood it and he's been so gentle with me and so he accepted me on his team, which was like insane to me. I'm an athlete now. I went from not being able to walk to I'm an athlete. I have my first meet on January 27th, which I'm practicing for. Yesterday I squatted the most I've ever squatted in my life.

Speaker 1:
21:53

What's your PR?

Speaker 2:
21:54

and so right now, on the squat, it's 135 pounds get it, girl.

Speaker 1:
21:59

That's not even like.

Speaker 2:
22:00

Strength. That's me working on that scale that you work on when you're a powerlifter. I don't know I'm gonna lift the day of the meat. But the hernia repair worked. My nerve pain is 97% less. Sometimes I get it gets flared up. How can it not right, okay, okay, like I tell people all the time that Sunday messages, you can't undo a lifetime of damage overnight. It's only four years post-excision and three years post-nerve nerve compression repair.

Speaker 1:
22:29

Mm-hmm.

Speaker 2:
22:30

I have pelvic floor flare-up sometimes, but now that I'm exercising and I learned my body so well through pelvic floor therapy, I know how to do what I need to do to calm it down myself. And if not, I am still seeing a pelvic floor therapist weekly. Yeah, because that's just what I'm gonna need and I'm thankful that I have the privilege to have the access to it. Yeah, but I guess the thing is, yeah, you're probably not gonna feel immediately better after excision surgery. But just understand that there could be so many things.

Speaker 2:
22:57

Mm-hmm that are gonna still cause pain, that the endometriosis might have made worse and you might have comorbidities. I still deal with Hashimoto's disease, right, so I still deal with Exhaustion. If I'm not on my meds properly, I have PCOS, which I have to deal with, my severe insulin resistance there. So there's so much more to the puzzle. There's so much more to the pain puzzle for endometriosis patients and our bodies are so different. I know people that have excision surgery and are like running two months later and they're fine. That wasn't me. No, that wasn't me.

Speaker 2:
23:27

I just didn't give up. I had hope. I believed in the medical team that I built for myself, mostly through the endometriosis summit, and they're the ones that I still have now. And if it wasn't for that community of Doctors that care about their jobs, that were willing to all even talk to each other on my behalf, even talk to my personal trainer on my behalf Yep, I wouldn't be where I am. The best advice I could give anybody is like if you just had excision surgery and you're in pain, I'm sorry, have patience. Yeah, if you're in danger, if you feel like your life in the nature, go to the doctor, go to the ER, go Right, but what you're feeling may not be endometriosis pain. If it was a proper excision it might be public floor. It might be no compression right. So that's my story. I went from barely being able to take a step To powerlifting, and I could probably power lift in high heels if I tried yeah, why not?

Speaker 1:
24:22

I mean other than the pill. You know your PT might not like that, so much come the following week, but I think it's important to highlight the surgery did not cause the hernias. The hernias were there.

Speaker 2:
24:36

Yes, that is so important, that's the biggest question I get. So Sally suspected hernias way before the excision and and they were not caused by the excision surgery. They were not. They were there, like the type of damage that I had and the openings that did not happen from surgery it within a few months. That was years and years of tugging, tugging, ripping, ripping from having a hypertonic pelvic floor Right, which is this bizarre to me, that like because people say, well, how did the endo cause your hernias? I was like, well, it caused pelvic floor dysfunction and it had a hypertonic pelvic floor and it was pulling and pulling and ripped and ripped and and that's how it ended up happening. But yeah, that's a really good point, we suspect that, that I had them and I did absolutely had it before I had excision surgery. Yeah for sure.

Speaker 1:
25:22

What do you do to prepare now that you're powerlifting? I know it took you a long time and and I'm in the same boat where I have a trainer who is very aware of the public floor. So we do pelvic tilts a lot 90, 90 stretches. Making sure internal, external rotation are very important, making sure we warm up properly so that I don't hurt myself.

Speaker 2:
25:42

Yes.

Speaker 1:
25:43

Those you kind of have to work up to. I think, in a lot of ways, like it's not something, yeah, it's not instant.

Speaker 2:
25:49

Absolutely no, no, no, I mean I. I remember when I couldn't even squat like a 30 pound dumbbell right and I squatted 135 pounds yesterday. So it's yeah, I know I'm so excited. It takes time and that's what I say. It's like this progress is three and a half years of intensive work on my part, like really committing to doing it, even on the days I didn't want to, and I get it. I get it that you're in pain and you're tired and all that stuff, and you shouldn't feel bad for that. Some days I just didn't do it because I don't want to.

Speaker 2:
26:21

But but the thing is like it was three and a half years of work and after three and a half years of like really listening to your body and I mean really listening because it was, if it wasn't friend of me, true, so I would have never learned to listen to my body I can feel the separate types of pain. I know when it's nerve pain now. I know when it's pelvic floor tension now. And so before I power lift, or even sometimes in the mornings, before I go to work, to someone to walk, I'm gonna commute right. I'm gonna use the tools that my fit pelvic floor therapist gave me and my personal trainer gave me. I keep my dilators clean and ready, with the lube next to it, because maybe in the morning, while I'm doing my makeup or Curling my hair before I go to work, I have a dilator in, because I can feel the tightness and I know that if I just go with that, the tightness starting, it's gonna get worse and by the end of the day it's gonna be much worse than it was before.

Speaker 2:
27:11

So I kind of know now I need to use a dilator today or I need to put a suppository in today I used to have to take one of those suppositories daily. Now I take it sporadically. Yeah, and when I first started lifting and it was really funny If we would start a new training block, a new type of movement my body immediately would go into pelvic floor flare and I learned this about myself. So, exactly like you said, I do warmups that are all about telling my body it's safe, preparing it for movement, telling my body that it's gonna be okay, that this isn't going to hurt me, and I know that sounds silly, but I do talk to my body and I'm gentle with it. I'm like thank you for tessing up because you're trying to protect me, but I don't need it, it's unnecessary, don't tense up.

Speaker 2:
28:01

And your diaphragmatic breathing. It's a simple, it's a very simple thing to do, but it's so effective. You're calming your central nervous system now and I know that for me, that is definitely one of the factors is I already have a diagnosis of PTSD from other things that have happened in my life and I'm absolutely a person where I immediately get the bodily symptoms from it. That's me. So I will do these warmups that are hip openers, public floor relaxers, and just do as much as I can. Sometimes it doesn't work, sometimes my public floor is upset and it just doesn't want to be nice and cooperative and it's gonna be tense the whole time and that's fine. And after my workouts I will sit there and do a cool down right Crocodile, breathing, happy baby, which my husband, every time he sees me in happy baby, he's like are you calling the mother ship?

Speaker 2:
28:51

And he makes he's like and I'm like yes, I'm calling the mother ship with my vagina, that's right, and you'll thank me for that later.

Speaker 1:
28:58

okay, yeah, exactly.

Speaker 2:
29:02

Only we need to know about this that do happy baby pose and I don't care if I do those in the gym in front of people. They can watch what they want. My public floor health is more important than that. And as far as like nerve pain goes, a lot of times again I don't really feel it as much anymore After my workouts that's when I do, or before I do those pelvic tilts right and thrusts just hip thrusts are amazing for rectal tension for me.

Speaker 2:
29:25

Oh my God if I get a nice heavy barbell on me and I do like a really good hip thrust. It'll release that tension. There's something about me where tension on tension just like releases it, it cancels it out. And when I'm not working out, I'll just make sure to like do little things, like making sure that I'm sitting in a way that's not making it worse, using my dilators, doing my diaphragmatic breathing. It's just part of my life now. It's part of the process.

Speaker 2:
29:48

I don't see it as a chore anymore. It comes natural to me and being mindful of what kind of shoes I wear, being mindful of what kind of clothes I wear, if I feel a nerve flare coming, I'll try to stop it with. Maybe sometimes I don't need the stuff from the Pimpas I address. The lighted came patch over the counter. I could just pop it on there and like stop it before it goes nuts. So I've learned it through pelvic floor therapy, working with a personal trainer and just listening to my body and what it needs. It doesn't always work, it's not always perfect, I'm not always on top of it. I'm human. But for the most part I'm trying and that's the most important thing that I can do.

Speaker 1:
30:29

It's just try for myself.

Speaker 2:
30:30

Yeah, that's my days now and I'm gonna say, as I'm sitting here, like these past few weeks, especially when I lift, when I lift I feel really good. I've been like 90% and no pain, right. I'm having a weird like rib cage pain, nerve pain. I have no idea why. We'll figure it out eventually. That's how I approach things now.

Speaker 1:
30:49

I'm like I'll figure it out, I'll figure it out, but you know the proper channels now, too, where it's like okay, I'm not gonna just ignore it, I'm going to actually investigate what it is. Okay, I'm gonna start with step one. Is it my pelvic floor? Is it pulling on that? Is it something else? So you know the proper channels, but you didn't get there overnight. It wasn't like oh, I know what that is. It takes a long time.

Speaker 2:
31:12

No, it takes a long time. And I also have just never stopped learning about a new metriosis. And thank God for Heather, for Sally, for Amy Corfally, for Katie Boyce, for you, for people that just keep talking about it and talking about how it affects us all so differently. Because I think that a lot of times you'll have a symptom and you'll just attribute it to something else and then you'll just hear that one conversation and be like holy crap, it's my endo. My endo is the reason why this is happening. And so I'm just gonna keep doing what I did when I was 20, which is just keep learning about how my diseases affect me.

Speaker 2:
31:49

Like the way that I picked my endocrinologists and to help me with my PCOS and Hashimoto's. I was like, can you explain to me biologically what's happening in my body? Why do I feel this way? What's the mechanism that's failing, that's causing the symptoms that I'm having? I remember there was one doctor who got so offended by that question and he was like, well, it sounds like you're pretty right up on it, so whatever you think. And I was like I'm never coming back here again.

Speaker 1:
32:13

That's nobody asked you, so it's right.

Speaker 2:
32:17

That's why I asked you and it's like just because I can be so educated and researched and whatever, I'm still not a doctor. So I say, endometriosis has been my cruelest abuser but my best teacher. I know how to advocate for myself when I have other things wrong with me, I know what kind of questions to ask, how to show up to the doctor, and no one. It's time to move on. And maybe when I feel like I'm not being heard and that's why I started my advocacy page, because I'm first generation and I had to learn all that by myself.

Speaker 2:
32:45

No one in my family knew what the American healthcare system is like and you don't think about that.

Speaker 2:
32:51

A healthcare system in another country is just different, and in Latino culture you're taught not to question doctors, because in the United States people don't understand, like, if you're from in America, honduras or El Salvador, like my family is, if you become a doctor, that means one that you're super smart, because some of the best universities are public and you have to pass grueling exams to get in, or two.

Speaker 2:
33:13

You come from extreme wealth and privilege, and so the thing is in the United States I'm not saying that just anybody can become a doctor. That's not the truth, but it is just a little bit easier. But the thing is that prestige and that mentality of like you don't question that type of authority is ingrained in you as a kid and, like you know, you're a kid like translating the legal documents, medical documents. I literally took a job at a health insurance company when I was like 25, just to learn what health insurance was like, because I didn't understand it. I didn't learn what health insurance worked like until I took a job at a health insurance company and now I know, and I know that it's a whole mess.

Speaker 1:
33:52

We're going to have to have another part two on that, because that's a big. You didn't know you opened up that can of worms, did you? Yeah?

Speaker 2:
33:59

I know I didn't Like a lot of things that I've done in my life. I just did them to learn about them because I had no other person to turn to and I asked. I tried to look for mentors, but I think I realized like so many of us just don't really know what we don't know if we're not dealing with it right. Not everybody's in a chronic pain so they're not going to know how to navigate. Talking to doctors College again.

Speaker 2:
34:23

I did that on my own I wish somebody would have told me you could transfer to a different university. You can do all these. Just because you studied psychology doesn't mean you that's what you have to do for the rest of your life. It matters what you do if you have a master's program for certain things, and you know, I've had to learn so many things on my own, and so that's why I created endosipota. I wanted people to immediately know from the name I have endo, and then I'm a Sipota, a Central American girl, and that's the perspective that I have. I'm the first in the family to do everything and endometriosis. I'm the first in the family to do endometriosis, and it explains, maybe, why my grandmother had horrific periods right she's not with us now, but, oh man, maybe grandmother had endometriosis right or just being more empathetic and sympathetic to like the other woman in our family that might be dealing with this. So that's what I want to do.

Speaker 2:
35:20

I understand the cultural reasons why you might not go to a gynecologist because you're supposed to be a virgin until you get married. I understand that our family teaches us that tampons take your virginity. I understand that we're very natural, organic, fresh food from the farm focus and we think that that's going to solve all the issues and that surgery is extreme and lazy. This is a lot of the programming that I got just from my own family, so you have to fight also against that cultural part of it that can be tough. I'm explaining a disease that may cause infertility to a Latino family where, like having a child is, and American culture is the same Having a child is the biggest accomplishment that a woman can have Becoming a mother, becoming a matriarch, developing her matriarchal line.

Speaker 2:
36:05

There's so much honor and pride and carrying the family name. I never talked about it because I got tired of my family asking me when I was going to have a kid, because I'm just like I'm in pain. I can barely take care of myself right now. I passed out on the bathroom floor and when I woke up I had pooped myself Right.

Speaker 1:
36:28

I can't have a kid right now. I can't even take care of myself right now. It's like you can't, right, I'm the baby Right. And you know I will tell you, as someone who had two ablation surgeries and then I was able to get pregnant, my endosymptoms came full force after my first child. It is not easy to parent with endo. You have a lot of guilt associated with that and you have a lot of trauma associated with that. And my oldest will tell you now mom, I remember when you were on the couch. I remember when you were throwing up. I always have like Ziploc bags for my kids to throw up in. You know people have buckets. I have bags because it's easier for them to carry around. But I had those and so my daughter remembers me carrying around my Ziploc bag. And then, after my second child was born, it got so bad that I mentally some days couldn't handle being mom and endopatient and the guilt associated.

Speaker 2:
37:28

So I can't even imagine.

Speaker 1:
37:29

I mean, I think that is something to you know culturally, when you're expected to have a child at a certain age or at a certain stage of your relationship, but you physically just feel like you can't.

Speaker 2:
37:41

It's okay. And I was also told that I was infertile, right. So I was 30 when I had my excision surgery and Dr Vidal, I was like you're fine, you can totally have kids. There was no physical damage to your sex organs and your AMH is fine. I had already prepared for a life without children.

Speaker 2:
37:58

And then I met my husband, who made me want to have kids and we're going to hopefully try soon, but it's a sensitive topic, right? Just what you explained, right? Like, even if you're having a no matrices and you're able to have children, it's still a very difficult conversation to have, because I've heard from a lot of moms that they have this guilt. I admire you because I just think, like, how lucky that those kids have an endo mom, because you're somebody who is going to be so compassionate and empathetic to when they're in pain or they're not feeling well, and you'll know to just pay a little bit more attention to that detail and when it comes to their medical care, oh my God, who better than you? I think it's a privilege to be loved by an endo mom, so I think you're awesome and I think those kids are very lucky, even if they have those moments that they bring up where you might feel guilty. So thank you.

Speaker 2:
38:49

I think it's a great way to have a drink that not everyone does, so yeah, that's a great way to put that.

Speaker 1:
38:56

Thank you, that was a little confidence booster, but I'm still saving for therapy for them, just for other reasons.

Speaker 2:
39:07

It's like I told my therapist I'm like I'm so afraid of messing my kids up you know that I don't have and she was like that's okay, there's going to be a therapist for them too.

Speaker 1:
39:16

Yeah, for us all and that was a good point. Yeah, I was like the therapist can fix it. That's right, I'm saving for it. It's fine. This has been so fun to sit down. I feel like we need to do like a part two, part three, part four, part five. I mean we'll do this again because you're a wealth of knowledge, but your compassion and your background and your story it highlights just some beauty within the endometriosis community In the disease. That is not beautiful. You have created such a beautiful outlook about it and just the way that you have navigated that, even though it's been tough, is impactful. Thank you, oh my gosh.

Speaker 2:
39:57

I can't turn the red here. They got to make a bomb.

Speaker 1:
40:01

No, I just I've been following you for a while anyway online and then it was like hey, you know we had connected and I was like you are just a really sweet, sincere person that has a lot to offer so many people, and that's why I'm so excited that you're doing your new publication posts. I'm really excited for those.

Speaker 2:
40:18

It's just going to be Latinas who are first one. Like me, it'll be in English. Perfect, and I eventually will. I do have some stuff in Spanish and I will always speak Spanish because I am bilingual, but yeah, no, these will be in English. So if, even if you're not Latina, you're more than welcome. If you have endometriosis and you want to hear from somebody else who has endometriosis how they're navigating college, career search, self-advocacy, how to find the right doctors, come and sit with us, you're more than welcome.

Speaker 1:
40:45

Yeah, and that's the chronic RBF. That's what you're starting.

Speaker 2:
40:50

Yes, name of my newsletter yeah, because I always got a curious of having resting bitch face and I was like I was in pain. That's all I was. I think I was better than anybody. I just literally was trying to fall off my chair and oh, I was pretty irritable.

Speaker 1:
41:03

My mom will tell you. Actually she came on the podcast and she was like you were pretty irritable. I was, but I was, it was because of my pain. Response to how could you not be?

Speaker 2:
41:11

Right, you're in pain every second, like how could you not be irritable? That's why I have so much compassion now for anybody. Like anytime anybody tells me like I hurt my back, I'm like I get it. Sit down, relax, I'm going to baby you, it's going to be okay.

Speaker 1:
41:25

You can come my way and baby me any day when I hurt my back.

Speaker 2:
41:29

I will happily do so.

Speaker 1:
41:30

Okay, perfect. Natalie, thank you so much for taking the time and just spending that with me. I just really appreciate you. Thank you.

Speaker 2:
41:39

I appreciate you too, and your podcast is badass. Thank, you. Thanks for all the work you do.

Speaker 1:
41:44

Oh.

Speaker 2:
41:45

I can't imagine how much work it is, but I'm sure it's a lot.

Speaker 1:
41:47

It is a lot, but it's worth it. When I know that people have been helped, it is totally worth it. Every hour, until next time, everyone continue advocating for you and for those that you love.