WITN x Special Episode: Living with PCOS — My Personal Journey & What I’ve Learned

In this deeply personal and eye-opening conversation, Sasha opens up about her experience with PCOS (polycystic ovary syndrome) — from growing up in front of the camera while struggling to find answers, to finally getting a diagnosis after years of frustration and dismissal. She shares the raw truth of what it was like to advocate for herself, how she navigated the emotional and physical toll of PCOS, and what has worked for her in managing her health.

Plus, Sasha talks about how pregnancy, postpartum changes, and even her epilepsy have been connected to her PCOS, offering rare honesty and hope for anyone who feels alone in their journey. If you’re navigating PCOS, or want to better understand this complex condition, this episode is a must-watch.

Transcript

SPEAKER_00: 0:00

Hi, welcome to Women in the Nude, where we expose everything except for our bodies. Believe that to your imagination. All right, so I've gotten a lot of questions about PCOS, and I know that I'm super open with it, but I'm always wanting to talk about it more. I get messaged a lot about, you know, how to advocate for yourself with a doctor or what kind of steps that I take or nutrition or fitness, like, you know, trying to break it down to what I do to handle mine. And so I guess I want to start with saying I'm not a doctor. I'm not a nutritionalist. I'm only telling my own personal journey. And I want to preface with that because everybody's body is different. And My personal journey is based on my personal health issues, but PCOS is one of those diseases where it looks different on everybody. I don't have cysts in my ovaries, for an example. So PCOS stands for polycystic ovary syndrome. And so... It's kind of a silly name in that way because you don't have to have cysts in your ovaries to have PCOS. For those who don't know, PCOS is a hormone imbalance. It's a hormone disease, really. And it looks different on everybody. Some of the most common symptoms are weight gain, cysts on your ovaries, like we said, hair growth in wrong places. Hair loss in places like your head, obviously. Bad acne, gastro issues, fatigue, depression. There's a long, long list of symptoms. And if you've got PCOS, most of the time you have a handful of those. High testosterone. low estrogen or high estrogen, low testosterone. That's one of them. Vitamin D deficiency, iron deficiency, your triglycerides, your cholesterol, a lot of high cholesterol issues with PCOS patients. And it's hard because a lot of those symptoms are connected to lots of other things. But we're finding out more and more that There are so many cases of undiagnosed PCOS that have led to other things or connected to other things. And because it's so convoluted, it's hard to diagnose. But I will say it really is just about finding somebody that will listen to you. For those who don't know my story with PCOS, I... I grew up in front of the camera. I've been in the entertainment industry for 25 years, which is wild. But I was on a show called Pretty Little Liars. I started when I was 12 for the pilot. I did the first season when I was 13. I ran for seven years. I had so many different life milestones on that show. Graduating high school, driving, getting my own place, getting engaged. I did a lot of life on that show. But one of the other things that happened was as I was growing up on screen, I was also changing physically. And when I was around probably 16, 17, I started gaining a lot of weight, but I didn't know why. It wasn't just like, you know, you're getting older, your body's changing. It was something was off. I've never had regular periods until very recently. And I was just kind of told that that was age. Oh, you'll grow out of it sort of a thing. But I was pretty dedicated to eating well and fitness. And so this was kind of coming out of nowhere. And I was just feeling off. And I was trying to figure out why. I think in the end saw about 17 gynecologists. And I was either told that I was lying and I must just be eating too much McDonald's. I was told that I'll grow out of it or that I'm young. That was a big one. I was essentially told to go exercise and then come back. I mean, I was told ridiculous things. The majority of the time, it was just based on them not actually hearing what I was telling them. I was able to get my thyroid checked. It was not a thyroid issue. I have diabetes in my family, but it wasn't diabetes. And nobody could give me an answer. And in the meantime, I'm dealing with social media being at its growing stages. Twitter and Instagram were very popular, starting to become really popular. And Pretty Little Liars was such a fan-engaging show, one of the first to do a lot of what we did. And it was trying to navigate a lot of hate, and a lot of confusion coming from... I don't necessarily want to call them fans. I know you want to call them trolls, maybe. A lot of people had a lot of questions and a lot of mean things to say. And what I realized was, I'm also trying to figure it out. I don't have an answer for them. And this, you know, it girl that I'm supposed to be playing that I looked at the part for in the beginning... I don't look like everybody's vision of an it girl anymore. And that was super challenging. It was challenging because of my character. It was challenging because of the way that people were seeing me. Designers didn't want to dress me. They told me to go to Saks. I had a lot of different opinions thrown at me. A lot of... Harsh things that, to be honest, I tried to block out. There are a couple that I come across that I'm like, oh, I totally forgot that happened. I totally blocked that out of my memory. But ultimately, people were confused and I was confused with them. And I think, I don't remember the date, but at some point I put out on my Instagram that I... It sounds so cheesy now. There's that like under construction thing. But I did. That's what I said. I was like, I don't know what's going on. I answered some people's questions and was just essentially like, I'm not pregnant. I don't know what's happening with my body. So I'm on this journey with you, essentially. I think it's natural for people to be interested and, you know, This is not new. People do this all the time where somebody looks a little bloated and they're like, oh, is she pregnant? We're all kind of guilty of, even if we don't agree with it, seeing certain public figures in that lens. And so I understood, but didn't accept it. It's not okay, but I understood where it was coming from. Finally, somebody told me, hey, have you been to an endocrinologist? And I said, no, but I'm willing to try anything at this point. I went to an endocrinologist. She listened to all the things that I said I was going through. And she said, I think you've got PCOS, but I need to do a blood test to make sure. And I basically said, what the fuck is PCOS? I've never heard of that before. She explained what polycystic ovary syndrome was. I already knew before that blood test that I fell into all of those categories, or a lot of them. And when the blood test came back, that was right. I had really high testosterone, very low vitamin D. My triglycerides and my cholesterol was all over the place. I had irregular periods. We weren't sure if I had system ovaries yet. That was before I got that checked out. My weight gain, for transparency, I gained 70 pounds in a year. And no matter what I did, I couldn't get rid of it. One of the first things that she told me to change was my diet. And I was like, well, I'm doing everything I can. I mean, I literally can't eat enough vegetables and I can't run anymore. Side note, what was happening was I would do HIIT classes or I would try and run or any sort of cardio activity. I would really be on the verge of passing out. My body was not handling it and I couldn't figure out why. I would literally feel nauseous eating vegetables sometimes, as stupid as that sounds. My body was rejecting anything that I had thought was healthy all my life. And so she essentially said, stop that. She said, do some low-impact workouts like Pilates, like weight training. Go on a higher-protein diet. mid to high fat diet. She said it might sound counterintuitive, but people with this type of disease, their body responds to this and it doesn't respond to all the other classic things that you've been told. And she even said things might change, but for now, let's just see what that does. She's a great endocrinologist. She's not somebody that just wants to prescribe lots of pills or birth control. I was really... nervous about putting any sort of thing in my body that was unnecessary, especially one with more hormones. And she was that way inclined that if, you know, if something is not necessary, we're not going to do it. Slowly but surely, things started changing. But I will say one of those biggest changes was just purely having a diagnosis. Because now that I knew what I had and that I had a title for it, everything felt, it felt like a huge relief because it was like, okay, now I know that I'm not crazy. And all the people that have been telling me that I'm crazy are wrong. I'm not crazy. Now the next step is how do I get better? And that was just, it felt like such a good step forward because at least now I had something to say that was real. And that was like, you know, there was evidence. But it also felt so silly. I was like, I had to find, I had to go on the hunt for somebody to just listen to me to just even go the extra step of taking a blood test, which should be standard. So I was equally very frustrated, but so glad, obviously, that I found her. And by adjusting my diet, and I ended up going on something called metformin, which is used for lots of different things. But in this case, with women with PCOS, mainly it's used to force ovulation, which is supposed to help regulate your period. It didn't necessarily help me regulate my period. They brought them closer together, but what it did do was at least make sure that my body was going through the ovulation process, which is one of the biggest reasons that a lot of women with PCOS have infertility issues. And so we were trying to get all of those things on track. And I would go through phases where I would be losing weight or maintaining my weight. And then all of a sudden I would have a stressful week and I would gain 10 pounds, 15 pounds, 20 pounds out of nowhere. And so it wasn't like it was a quick fix and everything just went away. It's been a roller coaster. And essentially it's just because you're always trying to manage your hormones to keep PCOS dormant and at bay as much as possible. But life gets in the way. Things like stress make your hormones go crazy. You're going through a hormonal change every month. Your cycle dictates different hormones and at different times. And so there are so many things like food, like environment, like stress that influence your hormones. And it just feels like this twisted game that you're playing, just trying to keep your body at a normal level. Sleep is a huge one. And so that was just such a frustrating journey. But at the same time, it was like, well, at least I can see some progress, even if there's a step back. At least there's a step forward in there. What we ended up finding out, which I haven't really shared until right now, is that my epilepsy was connected. So I don't think there's a very small amount of people that know that I have it. I had kept it from everybody at work because I didn't want there to be any—there was shame involved where it was like I didn't want anybody to think that I wasn't capable of working or that anyone would be scared to hire me because I'm a liability. There's a lot that goes into that, but I'm going to backtrack and tell you that portion because I promise it correlates. And who knows? It could help somebody. When I was 15, I had my first seizure. And I was just curling my hair in the morning, getting ready for, ironically, a press day for our first Halloween episode for PLL. I was curling my hair, and the next thing I know, there were paramedics around me. So I had a grand mal seizure, went to the hospital. They, you know, did tests and whatever, what they could in that little... that time, that overnight stay. Couldn't find anything immediately wrong. Obviously, I went to see a neurologist, but that was a couple days later. That day, this shows you how much I love my job to a detriment. Generally speaking, when you have a seizure, you have a terrible migraine and you're nauseous and your body is just going through a lot. And I was like, I have to go to this radio show to promote PLL. It's like, no, don't cancel it. I want to go. And midway through this interview, I just, sorry for anybody that's like grossed out by this stuff, but midway through the interview, I'm like looking at the guy that's interviewing me and I throw up in my mouth. And I just swallow it and had to say, look, I'm really not feeling good. I'm having, I have a really bad migraine right now. And they were like, oh, oh, okay. Well, yeah, let's wrap this up. And that's a perfect example of not putting your health first. That interview could have waited, but that's a whole side note. So went to this neurologist, had a CAT scan, had an MRI, had all the tests, and there was nothing to really explain it. And so, you know, at first you're like, well, hopefully that never happens again. Hopefully it was just this one-off weird thing. Maybe I was dehydrated. I don't know. You've got a list of things that you try and kind of rationalize that with. But that was not the case. I think it was probably seven or so months after that that I had another one. And so I started going on medication and we could never figure it out. And I would say every couple of years I would have one. And it was only until... I got diagnosed with PCOS that I started asking the question, I wonder if periods and or I wonder if my PCOS and my epilepsy is correlated. There's a lot of women in their 20s that have epilepsy that they grow out of. And it's kind of a phenomenon, but it's starting like studies are starting to show that it's hormone based. And so because I never had a regular period and didn't know when I was ovulating, I didn't know if that theory was correct. But a lot of male neurologists told me that I was crazy and that that's not the case until one. So we have correlated that a lot of my seizures or I'm at risk for a seizure when I'm close to my period or on my period, which is an interesting revelation, which shows that when your hormones are fluctuating, your body can be under stress. And if you've got something like PCOS, there's a lot happening in your body. And those two correlations, it's hormone spikes and lack of sleep. And that duo is really bad for me. Not to say that that's going to be the case for everybody, but for my reality that That's what that common denominator is. So every time around my period, I know that I'm at a higher risk of having a seizure and you kind of try and plan accordingly. But that was just throwing another spoke in the wheel. In retrospect, you start realizing certain things like that correlation where those weight gain spikes are I would also correlate that now to having a seizure. My body was under a lot of stress. It would mess with my hormones and I would gain a strange amount of weight in that short period of time and then struggle to lose it again. But man, what a roller coaster. When we decided that we wanted to have a baby... Um, we thought that it was going to be a really long journey and I didn't really know if I was ovulating correctly. I, you know, I couldn't dictate if I was, um, I didn't have a normal period. So I wasn't sure we were just kind of like guessing all the time. Um, and I was really lucky to not have any infertility issues. I think the main reason for that is because I don't have cysts on my ovaries, but a lot of women with PCOS do. Um, We got pregnant. It was a healthy pregnancy. I didn't get gestational diabetes like a lot of women with PCOS do when they're pregnant. So that was a huge blessing. But I gained a lot of weight more than expected. I had something called pelvic dysfunction, which if you don't know what that is, like I did not know what that was until I was pregnant. It's when your body releases too much relaxin. The hormone that kind of relaxes, surprise, your muscles, the closer you get to labor to make sure everything is a little bit more loosey-goosey, that released too early. And so around three to four months pregnant, my muscles basically just weren't holding my pelvis together, which is a big challenge when you want to walk and do normal things in life like climb up stairs. When you're pregnant, you're supposed to sleep on your side. And that's my preference anyway. But because of this, I couldn't. So I had to always prop myself up weird on my back. And I just basically just didn't sleep all my whole pregnancy. But I really wanted to sleep on my side one night. And so I was trying to stuff pillows and put them in the right place. And I tried to roll over. And my pelvic bones crossed over. And the crack... That was so audible. It was one of the most painful things I've ever come across, including labor. My husband freaked out. Hudson was like, what the fuck was that? Because it was awful. So I can't say that that's correlated to PCOS. That was probably just unlucky. But there were definitely challenges there. But the light at the end of the tunnel there is that Hendrix is healthy, which is all that matters. But my period's regulated after having him. And so there's a small percentage of women that when they have PCOS and go through pregnancy that it regulates their hormones. It's like a reset button. So since having Hendrix... I have flare-ups every now and then, but for the most part, my period is regular and my hormones are regular. So PCOS is, I guess, what they would call dormant right now. And I mean, that's just all we strive for is kind of, you know, if you've heard any of the other episodes that I've been talking about this, when I say constantly reevaluating and trying to grow in the right direction, this falls into that category. Ultimately, this is always about me making sure that I am doing everything I can for my health. Which gets exhausting because sometimes that's not the most joyful thing to do. But I have been exploring what that means and readjusting my diet for things that I now enjoy to cook that fits into my dietary regulations. I love Pilates. That's something that... I have just really grown to love that makes me feel really strong and it's something that I enjoy. So that has been wonderful. You know, and you just kind of find what works for you and things really do get better. So a lot of the questions that I've been asked have also mentioned that you're struggling. And I am so sorry for that because I know that feeling very well. It's very isolating. It can make you feel... I mean, it's depressing, but it can also just, it takes a lot of joy away. There's so much insecurity with it. It feels very like something is always wrong. Like you can never like get on top of it. All of those things that can be very, very frustrating. The mental fatigue and like brain fog is a big part of that too. And my biggest thing is just advocating for yourself, getting second, third, fourth, in my case, 18 opinions, and just making sure that somebody's testing for the right things. Just flat out say, I want a blood test, I want a full panel, and I want to see my testosterone levels, my estrogen levels, my DHA levels, my triglycerides, my cholesterol, my vitamin D, my iron. You really want a full panel because then you can really start figuring out what is working and what's not working. And that is your power. And so it might take some intervention. You might have cysts on your ovaries that need to be handled. You might have to take a couple of medications and figure out one that works for you, even if it's just for the short term. Quality of life is so important, and we always have to evaluate what we're putting in our body, but not all of it is bad. I know there's a big thing with Ozempic and things like that, but... Women with PCOS, hormone issues, thyroid issues, diabetes, that medication, again, I'm not a doctor, but that medication is made for you. So if you are struggling and it's something that will help, don't listen to noise. Listen to yourself. Listen to a doctor. Listen to a therapist. Listen to a nutritionalist that has your best interests. And if that seems like something that's worth trying, try it. Don't care what other people say about it. I'm not saying that's the right direction, but don't rule it out based on public opinion. Make sure that it's something that is for your health. If you don't have to do that, great. Figure out what works for you, but try going open-minded. And I think one of the biggest things with our health in general is... ruling anything out too quickly. Like for me, Western and Eastern medicine, both of those combined are necessary. It's not one without the other. I think, you know, Figuring out what works for you because everybody's different is vital. Nothing is going to just be the same for everybody, and that includes diet. Diet is one of the biggest ones. That low-carb, high-fat diet might not work for you. You might not be able to do that. Look into the Mediterranean diet. That diet is also very sustainable. Maybe that will work for you. Maybe it won't. There are so many different things out there, but try not go for the fads. Try and figure out just— from an actual data level from your blood tests, what is working and what you're deficient in. And just those little changes, it might not be overnight, but those little changes will make a difference, even if it's just on your mental outlook. And yeah, I mean, nothing will be a quick fix. It'll be a constant journey. But But getting a handle on it is so worth it. And it feels so good when you're in that place. And I want that for everybody involved. There is a question here from Joy. And she says, how do I keep my mind and my body healthy with PCOS as a teen? And that's a very specific question. And I was a teenager when I was dealing with this. I didn't get my diagnosis until I was an adult. But I remember all of those feelings. And... Being a teenager is such a shitty time anyway. There's fun to be had, but you are trying to learn about the world. You're trying to learn about yourself. You're trying to navigate everything all at once, and everything is changing around you. Your body's changing. You've got little freedoms, but not fully, and it's a lot. You are going through, I think, one of the hardest parts of life as a teenager. And to add this to it is just exhausting. So first, I'm really sorry, Joy. That sucks. But I want you to know that there's lots of hope there. And people are only understanding it more. And there's only going to be more progress in this space. But ultimately, it's, I think, just... trying to handle your mental health and find, like I'm saying with all of these adults, what works for you. We are never gonna have the perfect body. We are never gonna be in the perfect mental space. And I think the sooner we can let go of that expectation, the better. Try and enjoy your life. Find the things that you love that you're interested in and try and make the best health decisions you can. If you have access to healthcare, try and make sure that you're advocating for yourself and that you still get those results from your blood tests and you figure out what works for you. Advocating for yourself is gonna be your most powerful tool Thank you so much. I'm sorry that you're going through it, but there's definitely light at the end of the tunnel, and we'll be figuring it out together. Hannah said, what did I do to look and feel healthy again after pregnancy? And we've kind of covered this, but I'm definitely happy to go into it more. When I recovered from my diastasis recti surgery, which... It's basically just my abs didn't come back together. I could feel my organs, and that was a really weird feeling. But getting that surgery done was essentially just putting my abs back where they were supposed to be. And because of that, a lot of my chronic back pain went away, which is miraculous. And because of that, I was able to train my core again, and Pilates became the biggest... a really big joy. I'll just put it that way. I really enjoyed it. I started feeling strong and before looks that was important to me. I was like, you know, I want to feel strong. I was trying to reevaluate my mental space and, and it was less about bouncing back and more about just getting to a place where like, I felt good. I just want to feel good. I just want to feel healthy and feel good. And so, um, everything was kind of happening at the same time where my periods were regulating. Um, because of my hormones going back to normal. I was able to really work out my core again and start, and that affects everything, not just sleep, but just any type of other exercise. It all helps each other. So I was getting stronger. And then I started really loving food again and understanding what was working for my body. So the biggest part on that side was just figuring out what was like attainable and sustainable when it comes to just everyday life. Um, you know, it's, it's not easy to make a full feast every single day, three times a day or however many times you're eating. Um, and, and, and make it healthy. It's just, life is just not that way, especially with a newborn and navigating life. Um, and so I, um, I have my cookbook, Sasha and Good Taste, and now I want to make a new one that's PCOS inclined. And so I'm just falling back in love with that as well, which has been fun. And I'm so much happier now, not just because I'm feeling good, but because I have now learned all of those little things that can be adjusted if something's not working. And I think that's what we need with PCOS and our tool belt is being really in tune with our body to know when something is not working, that there's these things that we can try and evaluate. And it's easier to find the problem than it was before. And those adjustments are easier when you understand how your body is working or not working. So I think that's the huge part. that for me another big part of that is just the mental health aspect of of doing my best to manage my stress i travel a lot i work a lot obviously a full-time mom i'm also a ceo of my company um you know like just i'm a wife you know i'm a partner i'm a best friend like all of these things that we we um that make up our lives is stressful and so I'm always trying to find ways of managing stress. A big one for me is sleep. Sleep is where you recover. And, you know, we tell our kids that they need to get sleep to have rest, to have energy to play. And, you know, we preach this, but it really is so vital. It's vital for PCOS. It's vital for women's hormones, regardless of PCOS. It's something that is, you know, that restores us, is good for our brain. It helps us function properly. It helps us digest things properly. It It's one of the most important things in life, and it's one of the first things we neglect. And so that has been a priority for me. That has helped my seizures tremendously. And so, you know, it's, I think, just ultimately about prioritizing the right things. And they all start to kind of shift into the right place when you're doing that. And that will be my goal forever now moving forward. But I highly encourage that. for anyone in this position. Everyone in general too. Yeah. Signing off.