Navigating PCOS: Advocacy & Insights

Megan-Marie Stewart

Yes, absolutely. I am so honored to be on this episode with you, Dr. Gersh. You and I have been connected for about eight years now, and I appreciate all the work that you have done for the PCOS community as well as your wealth of knowledge and your advocacy. Thank you so much. Yes, hi. I am Megan Stewart, the Founder and Executive Director of the PCOS Awareness Association. We have been around now for about ten, going on 11 years now, and it has been an amazing journey. It starts with me, and I started showing my symptoms of PCOS when I was about nine years old. From the ages of 9 to 16, my mom was my largest advocate, and she was shuffling me from medical professional to medical professional, trying to figure out what was going on with me. She got answers such as it was just normal adolescence. It was something that I just had to go through as a teenager and as a woman. She was also told that I just needed to lose some weight. 

Anyone who has PCOS and has gained weight knows that being told that you just need to lose weight is not a viable answer. It is not an answer that is easily understood; you cannot be empowered by it. Losing weight is not easy. That was a deterrent for me. But then as well, my mom was also told that it was in my head and that I was trying to get out of going to school and being a normal, adolescent gym class, and whatnot. One of my symptoms was weight gain, of course, and then hair growth on the face. I also felt the ups and downs of my hormonal changes, and then anxiety and depression were huge in my life. 

From the time I was nine to age 16, I was dealing with so many different things. Just maybe a couple of years ago, I learned something that my mom did. She is telling the story to somebody else that I am overhearing her tell this story, and I am. Wait, you did what? She was telling somebody that when one of the medical professionals had told her that, it was in my head that she decided that she was going to give me a placebo pill, and she was going to figure out if that was true or not. She had given me a placebo pill, and she said that for about the first week, I was a whole new person and that it seemed all of my symptoms were cured. But she said about the second and third weeks, my symptoms were worse and my depression was worse. My anxiety was worse. Self-esteem was just not there. Then, at that point, she realized that it was not just in my head. It was something that was seriously going on with me. 

A couple more medical professionals went and finally found an OBGYN at the age of 16 who was able to diagnose me with PCOS. At the time, I was also diagnosed with cervical cancer. It put PCOS on the back burner because I was told, as most women with PCOS are told, that it is just an infertility issue. Of course, at age 16, I was like, You boys, I do not care about that. It is not something I want to talk about or think about at that age. Cervical cancer was high on the list at that point. Around the age of 21, my PCOS symptoms started to weigh on my life. I am going to date myself a little bit here, but years prior, age 21 was the cutoff for parents to have you on their rider, on their insurance, on their health insurance. I had no health insurance; I was 21 years old, and my OBGYN had diagnosed me. She was kind enough to use me as a paper study or a medical study for her. She was able to discount my medical bills at that point. But I was admitted to the ER because my cysts ruptured on my ovaries, and the pain was just astronomical. 

At that point, I was not the only one going through this. I just cannot be at the time. The only thing was that there were a couple of PCOS advocacy groups out there, but where you would get a lot of your information was in Craigslist chats. I went out to Craigslist chats and did a search for PCOS in my area and found a couple of other women who were also dealing with PCOS. They too were saying, We just cannot be the only ones. How is it that I am the only one suffering from this and nobody’s talking about it? It was at that point that I became very close to my family. I started making it because they were asking me, What happened in the hospital? What is going on with your health, and how are things going with you? 

I started making teal handmade bracelets because I found out the official color of PCOS was teal. I started making handmade bracelets and started giving them out to family and friends, hoping that they would help. I would tell them I am dealing with PCOS, and they would say, What is that? I would explain it to them and then hope that they would be able to explain it to others. It’d be a conversational piece that they would be wearing these teal bracelets and someone would be, Hey, what does that mean? They would then be able to further the advocacy in that aspect. At that time, Instagram started becoming a big thing. I had a cousin who had purchased arms full of teal bracelets for me. Also, at the time, Wonder Woman was starting to become a big thing as well. So my cousin posted on her Instagram, The Wonder Woman, posing with all of her teal bracelets and talking about PCOS, what PCOS was, and that if anybody needed any information, they could come to me. The next thing I knew, I had people from all over the world contacting me about PCOS and where they could get a bracelet. It was at that point that the PCOS Awareness Association was born, and it was, okay, this is something that is going to happen. We are going to run with it, and we are going to keep going. 

To this day, I have never been more blessed by the reach that we have, the people that we touch, and the hope that we bring to other people all over the world. I often say that any time that we put on an event, the stress of the events and whatnot, I will say during the event that I am never doing this again. I cannot do this, cannot handle this. Then there is always that one moment during the event when somebody comes up to me and they are so appreciative of what is going on that reignites the passion and the drive in me to keep going and continuing with another event and another event. I just love our reach, the people that we help, and the people that I have met along the way, such as yourself. Dr. Gersh, it is just amazing. 

We do an event that we call PCOS Con, and it is a biannual event, so it is happening in 2023, and then it will happen again in 2025. It is something that we started as a whole; we started before the pandemic had happened, and it started as a whole weekend event in one location. Then the pandemic happened, and we went virtual for the next PCOS event. then this year to 2023 is the first year that we were back in person, and we have decided to break it down into three different events in three different locations. We are doing our first events in New York. The second event is in Houston, Texas. The third event is in Los Angeles, California. We are super excited to keep going with that process. Hopefully, in 2025, we will be able to do more, in more locations, and spread across the U.S. that much more. 

At the PCOS Awareness Association, we base ourselves on a couple of pillars, and those pillars are providing information, providing support for those who are suffering from PCOS, and those that are wanting to support those suffering from PCOS, along with providing resources. One of the biggest things we do is not reinvent the wheel. If we know that there is another organization out there that is dedicated to something that has to do with a symptom of PCOS, we will partner with them to be able to provide that resource and service. Case in point: we partner with the Crisis Text Line because we know that a lot of women with PCOS deal with depression and anxiety, and it can get to be a lot. We partner with them, and if you text PCOS to 741741, you will get a dedicated support person who will help you through any crisis issue that you are dealing with. When it comes to PCOS, whether it is feeling completely at a loss or feeling, we have even had cases of suicide. We want to be able to support women as much as possible. 

The other pillar that we handle at the PCOS Awareness Association is that we help fund the research of PCOS, and the research is being handled by Lujan Labs of Cornell University. When I was searching for a lab to support, it just so happened that Lujan Labs was one of the only labs that was researching the cause of PCOS. A lot of the other research labs are researching, whether it be infertility or obesity, and nobody was talking about, Okay, what is PCOS, where is it coming from, and why is it happening? Lujan Labs happened to be the only laboratory that was diving into that question. I think they are going to have some answers here in the next couple of years on what PCOS is. 

Those are our main pillars, but of course, we are here for anybody who has PCOS and anybody who is supporting anybody with PCOS. We have a program that we call Man of Steel, and it was started by my father. He was struggling with the fact that how do I talk to Megan about this woman issue, what to say, and how to deal with it. He finds it important that we are talking to, whether it is fathers talking to daughters, fathers supporting daughters, fathers supporting wives, husbands supporting wives, brothers supporting sisters, uncles supporting nieces, whatever it is that we are getting that male support as well. We come up with all sorts of different ways that we can support women with PCOS in different aspects. It is about the gist of the PCOS Awareness Association.

Felice Gersh, MD

Wow, that is quite a phenomenal pathway that you took. It is almost like you fell into this by chance—that you were doing one thing and then it exploded into something so much grander and so incredible in terms of its impact—as you said, global impact. I had to dissect a few of the different things that impacted me through your amazing story. The first one, which you came back to just a few moments ago, was the mental health aspects, which seem to be a big contributor to your suffering with PCOS and yet so poorly talked about. That is, the depression, the anxiety, and how that is both a cause and an exacerbation of PCOS.

Megan-Marie Stewart

Right.

Felice Gersh, MD

In terms of yourself, how did you ultimately deal with your mental health challenges? Because this is very well known, there are books and articles written about the mental health issues in women with PCOS, and they can stem from hormonal imbalances as well. As you mentioned, self-esteem issues arise when you are overweight, do everything you can, and are given these ridiculous little statements by the physicians: Just lose weight; you could just do it; I can it. It will just happen when we know there are massive metabolic alterations that are happening in the body that promote the storage and deposition of fat and have nothing to do with willpower or any of that. In terms of helping, I am sure there are many women out there listening to this interview saying, No one’s even talking about my mental health, my anxiety, my moods, or my depression. Here I am looking at this beautiful Meghan, and she has dealt with this. maybe going back and talking a little bit about how you dealt with that huge issue that involves so many women with PCOS.

Megan-Marie Stewart

Yes, well, first, let me just tell you a story about trying to lose weight. Again, going back to ages nine through 16, I remember, at one point, Weight Watchers. back in the day, again, dating myself. Back in the day, the way Weight Watchers used to work was that you would sign up and every week you would go into an actual physical location and you would be weighed, and then you would sit in a meeting that talked about all the Yays and the congratulations, guesses you lost 5 pounds or you get a little star, that type of thing. My mom signed us up for Weight Watchers, and of course, being ages 10 or 11. I was not making food; my mom was making my meals, sending them to school with me, and making sure I had my meals set for the days and nights and whatnot. 

I just remember this one time going into that weekly session. My mom, because she was doing it with me, had lost something like 2 pounds. Megan had lost .2 pounds, eating the same thing my mom was eating and doing the same exercises. My mom was doing It was very hurtful. It was a horrible feeling. Everybody in the room is getting the star because they lost two or more pounds, and Megan did not lose anything. It feeds into the depression and can make you feel a certain way about yourself. I think for myself, and one of the things that I do is be intentional about the way that I think and the way that I speak to myself. I try not to put down hours on myself daily. I also try not to look at other people’s paths and roadways through life because that is theirs. That is not mine. 

I think that social media can be hurtful. You are looking at people’s lives through what they want you to see, what they want, and what they are posting. what they want you to see. That is one of the things I will not even lie about. My family, my extended family, sometimes complains to my parents because of the things that I post on my personal social media page because they are. That was a little too honest and a little too open. But what? I have to be. Because if I am not who is going to be honest and open about the fact that I am dealing with anxiety or depression or that I have even been diagnosed with PTSD, certain things in my life have happened. I think just being honest and open with yourself and honest and open with others is key to helping to heal and helping to be intentional in the way that you think about yourself. 

Also, another big thing that I did was therapy. Don’t knock it, because it is amazing. It can help you. I can give you different stepping stones to get to where you need to be and to feel better about yourself, and then, when it comes to weight loss, they always say to lose 20% or whatever and get active. That was one of the things that I needed to do. After the age of 21, I realized that I had bought a Fitbit and that I wasn’t getting any steps. My job is to be stationary at a desk all day. I wasn’t getting anywhere near 5,000 steps a day, let alone 10,000 steps a day. I was being very intentional in that as well after I got the Fitbit. It was, okay, let us get up, let us go walking, let us do this, let us do that. I think that even today I work out with a personal trainer twice a week and I am just active, not because I want to lose any weight, but just because my mood is that much better after I get those endorphins to start going through my body and I start feeling better about myself. Those are the key points that I had to say.

Felice Gersh, MD

Well, I love that. We always try to focus on health, Because so many people who try to lose weight with or without PCOS do it through starvation, which is hopeless, How many times do you have to reinvent the wheel, that does not work? We know that no one can starve themselves. Well, what one in a million will stay on a starvation diet for life? Because that is what you have to do. Because as soon as you start refeeding, you gain the weight back, and it becomes harder and harder to not be malnourished. You are on a starvation diet because how do you get all the nutrients in on that crazy diet, and then your hair falls out? That even adds insult to injury. We do not advocate for that. We advocate for what you said: focus on health and the things that you can control. When they have, I am not against using antidepressants, but when they have compared antidepressants to exercise, which works better for depression, it just turned out that in most cases, exercise worked better with you. 

You discovered that therapy, exercise, and when needed, of course, medications, are all important. Another thing that resonated with me about your story was your real desire to have a community—to have others who were going through what you were going through that you could connect with—and you had to go to Craigslist. I know one has to do that anymore because there are people like you who have created a community. I thought maybe you could share with our viewers and listeners the community that you have created and how they can utilize the PCOS Awareness Association to get connected with people who have the same similarities in terms of what they are suffering and their journeys, sharing stories so that they can both commiserate but do much more than that. Learn from each other and build support to grow together on this journey.

Megan-Marie Stewart

Yes, absolutely. I have to say that when we first started the PCOS Awareness Association and we were on Facebook, it was just Facebook by itself, and people would send in questions and private message questions all the time. What I would do is take their names out of it and take any identifiable information out of the questions. I would repost it onto the Facebook page as a PCOS question, and people would start answering, providing advice, or letting others know. This is what I did for this, and here is how I handled it. I think that that is super helpful, not in the sense of medical guidance,  or whatnot, but in the sense of the community drive that you are talking about and feeling. Oh, okay, this question’s out here, and I am not the only one that is dealing with this now. I know that it is not just me, and on top of that, for women with PCOS, my PCOS symptoms could look very different than somebody else’s PCOS symptoms. 

One of the biggest things that we also drive a PCOS awareness association is that what works for one may or may not work for another. We try to provide all of the options for all of the different resources, such as hair growth on the face. We have a partnership with Milan Laser, and we also promote electronic assets. We want to give you all of the options and let us leave it in your hands to have that power to be able to say, Okay, well, this works for me and this one does not. But I think that that choice and that decision because before it, I did not have any options. What am I doing? How do I get rid of this? That is one of the biggest things. Now we are not just on Facebook; we are on Instagram, Twitter, LinkedIn, and Pinterest. I cannot even think of anywhere else. But, all the places that are on social media that we could be in, we are thinking about TikTok, but I do not know; getting me on a TikTok video is probably not the best idea.

Felice Gersh, MD

Well, that is so wonderful to know that you are out there and that you are providing both the community and the resources that women who do not know where and sometimes their health care providers do not know where to turn. One of the things that you mentioned was linking people, me, and health care providers who want to participate in the whole community of PCOS with awareness, education, and global mobilization. All the research and so on, there are healthcare providers out there as well who are listening in. They think they are probably out there among our audience now. It could be that a third could be health care professionals, but they can also help. They can work with these.

Megan-Marie Stewart

Yes, please. We love our healthcare professionals and partners. We started the way Dr. Gersh and I met, and I think it was around maybe the second year that the PCOS Awareness Association was around. I partnered with an organization called OMICS that puts on medical professional conferences. In my mind, there was a need to get the PCOS medical professionals in a room. We got to talk about this. We are talking about this. They had, I think, the first session in Seattle, Washington. I want to say there were about 30 or 40 medical professionals. It was such an informative bunch that I learned things that I could never even imagine or fathom. As the years went on, it turned into, Well, I think we need something that combines both the professional roles with the patients because the patients want to hear this too, even though they may not talk and fully understand everything that is being said. They want to hear this, too. Not only that, but medical professionals such as yourself were telling me that you wanted to hear the patient’s side of things. Bringing that into a PCOS that was having that whole weekend-long event was amazing.

Felice Gersh, MD

I know I loved being part of it, and I am looking forward to being part of the Los Angeles PCOS Con that you are going to be putting on. We are talking now, and we are ahead of that. But when this goes live, it will be in the past. Maybe you can talk, because this is going to happen again. It is going to be bigger and grander. That is for all of you who may have missed it, but we are going to get this out on social media. Hopefully,  in hindsight, you will say I did get there. But, in case you did not, maybe you could just talk about what is happening and what will be happening, and then it will be in the past tense when this plays out. But what is being planned is that this will happen again in the future. Then they can still, even if they missed it, access some of this information that may still be available or archived somewhere.

Megan-Marie Stewart

Absolutely. With our first PCOS Con and then our PCOS Con that we had to go virtual, we realized a couple of things. One, we needed to get more global with the locations. That is why we have decided to do three locations this year. Then two when it came down to now being in three locations this year. How much money is always involved? How much can we do in each location and still be beneficial to those who attend? One of the things that I said to the team was, Okay, so we are not flying, and we are not flying medical professionals out to any of these locations. We need medical professionals in each location because that will be beneficial to the women who are coming. Look, if they are coming, if they are attending the L.A. one L.A. location, PCOS Con, they are going to want to see L.A.-located medical professionals because then they could be, Okay, well, I am going to go to them in a week and make an appointment. 

We have what we are trying to focus on in a couple of different aspects in each location for L.A., and I believe we have Dr. Kirk. She is coming, and I believe we have a mental health medical provider. Then we have a couple of other specialists that are also coming to L.A. and then the same in every one of the other locations as well. We are also bringing along one person who is traveling to each of the locations with us. We found that this topic in particular was huge at the very first PCOS con, and it was PCOS and sexual health. That is something that we do not talk about as a group of women. We do not talk about our sex lives, but we all know that PCOS is affecting our sex lives. She is going to come to all of the locations on her own, on her bill. She is amazing. She is a sex therapist. She is going to be joining us at all of the locations. We are excited about that in the future. We want to do more than three locations, and we do not want to have it barebones because this year it will be barebones. We are testing the waters to see how it is going to work. 

My vision for the future is that each location will have a weekend. It would be literally, you can come on Fridays, mingle or network, on Saturdays, start a whole full day of different speakers, and then on Sundays the same. I like the way our first PCOS Con went. We threw in some fun activities, such as yoga, in the morning, and I think the next day we had Whitney Way Thore, who is the actress on My Big Fat Fabulous Life. She came out and did a whole workout and dance session one morning. Just a very chill vibe. I do not want it. I never wanted PCOS to feel that it was uptight and that nobody could relate to each other or speak to each other. Just remember camp when you were younger and how you went camping, and you were very happy; you made new friends; you went home; and you wrote letters afterward. That is the type of thing that I want to feel when I come out of PCOS. Yes, I am excited about what the future of the PCOS Conference will look like.

Felice Gersh, MD

Well, I know that in the ones that I have been a part of in the past, everyone was just themselves, there was so much fun and friendships were made, you had interesting people who came and brought their products, and so on. There was that educational part as far as, well, supplements, other devices, and so on. It was a wonderful blend, and everyone just had so much fun. I cannot wait for the one that is coming up in L.A., and I am so excited that this is going to be ongoing. I said bigger and grander because this is evolving. 

We are all on our endless journeys that hopefully are going to go on and on, and we are going to keep evolving and getting better at managing PCOS and our lives in general and so too with PCOS Con, It is just getting, it is multiplying, It is very prolific now in terms of all the cities that you are going to be dealing with and so on. I thought I wanted to know that when you submitted some information, you talked about a book that you had written a preface for. I thought maybe you could just touch on that because that is another interesting area in which you have now written a preface. Tell us a little bit about that and the book, perhaps.

Megan-Marie Stewart

Yes. I believe I did yours as well.

Felice Gersh, MD

I know. You are in my book. Yes.

Megan-Marie Stewart

I had a PCOS diet book, which is not a diet. It is written by Tara Spencer, and she has done a couple of PCOS books, but it is named again: PCOS Diet. But it is just a bunch of recipes that she puts together that are fact-based and guided by what a woman with PCOS should have in their diet. I follow a couple of the recipes in there. Not a cook. Having the recipes around is great. Yes, I would definitely go out to Amazon and find the PCOS diet book, and then, of course, the Dr. Gersh SOS PCOS book was amazing as well. I still talk about the first PCOS Con, the things that Dr. Gersh was saying, and how, man, there are certain things that you think about PCOS, and then somebody will say something and it clicks. That makes so much sense. Dr. Gersh does that in her speeches as well as in her book. I say to go out and get those.

Felice Gersh, MD

Well, thank you. We just love all the things that you are doing for advocacy and your journey, which has been a struggle, but with so many successes. When I hear about your family, what your dad has done, and how your family has supported you, I think it is so important. You said that your honesty was another thing that resonated with me—how you were honest. You are always honest and open, and you try to be about, you talked about what you were going through with your family and how your mom was there for you and took you to multiple doctors for several years before you finally got a diagnosis at a very young age. 

For everyone out there, if your family is supportive, just thank them every day, because that is one thing. If you just happen to have a family that does not understand, maybe somebody professional can come in and help them understand what you are going through. Because it is not always obvious to family members what you are going through if they have not gone through it themselves. This is new to them.

Megan-Marie Stewart

Not only that, but I think for a lot of people, if it is not physically in front of them if it is internal, they cannot see it, therefore they do not understand it. But if it is physical, if you are walking around with a broken arm, somebody is going to be there. Let me help you. But since PCOS is more internal, it is, yes, nobody. You have to be honest about it and let people know that you need help.

Felice Gersh, MD

Because support is so important, and that, to me, is one of the huge things that the PCOS Awareness Association can provide for people, even if they do not have you. This amazing supportive family you can have is the family you create. One that you did not get born into, but the family that you create through networking and through associations of yours that can help them find people they can associate with and understand. They do not have to have the same symptoms, but they are part of this same community of women striving to be healthier and happier and find answers, and you are there helping to provide them every day. Can you, share? How can they find your organization? How can they watch you and see what is going on on these different social media platforms?

Megan-Marie Stewart

Absolutely. We are definitely on our website, which is  www.pcosaa.org. But we are also on Facebook, which is Facebook.com/PCOSAwarenessAssociation. Then our other handles on Instagram and Twitter are going to be PCOSAA. You can also find us on LinkedIn, and I believe that one is the PCOS Awareness Association.

Felice Gersh, MD

Well, that gives them so many options to choose from, and hopefully, they will try them all and go down the road to one of the many PCOS cons that will be coming in the future to a city near you. I will be seeing you. Well, I am not sure if you will be in LA, but

Megan-Marie Stewart

I will. 

Felice Gersh, MD

Well, you will be. I am going to see you pretty soon. Yes.  We will always stay connected because that is what we do. Thank you so much for joining me on this episode and for your continued success and joy in all you do. Megan.

Megan-Marie Stewart

Thank you so much. Dr. Gersh, same to you.