Today we are joined by Megan Stewart the founder of the PCOS Awareness Association. She tells her shocking story of living with PCOS, cervical cancer, and medical gaslighting. Thanks for listening UterineKind!
There is good news coming uterinekind! If you’ve listened to our earlier episodes you may remember learning about the ROSE Study for endometriosis. The study is done at the Feinstein Institute with friend of the show and endo expert, Dr. Christine Metz. Today we share the exciting information from their recently published findings and stay hopeful for the future of those with endometriosis. Please consider joining the study if interested!
Happy PCOS Awareness Month! We’re continuing our focus on PCOS this week with our amazing guest, the founder of the PCOS Awareness Association, Megan Stewart. Megan shares her jaw-dropping story of living with PCOS, cervical cancer, and medical gaslighting. Starting at an extremely young age, Megan’s severe symptoms had her missing weeks of school and doctors questioning if her pain was even real or in her head. When medical gaslighting goes this far, you know we need better care and information on our bodies! That’s why PCOS Awareness month and the PCOS Awareness Associate exist, so you can stay informed and prevent these progressive diseases from affecting your life.
Lastly, we end on a high note! Maybe billionaires aren’t so bad! Listen in on how this billionaire gave his fortune away for us all.
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol:
Do they know PCOS is a progressive disease? And by they, I mean doctors. Maybe the question to ask is, do they care? I'm Carol Johnson, and this is Hello Uterus.
This week, we are joined by Megan, sort of a PCOS advocate and someone whose experience with PCOS demonstrates just how serious this condition can get if left untreated and how lots of doctors think it's okay to wait on PCOS. But first, uterus. In the news,
Our friends at the Feinstein Institute have published research findings in BMC Medicine on their progress to develop a noninvasive test for endometriosis. This test is born out of the Rose Research Study, which, if you have been following us, we are massive fans of it's. The study of menstrual blood, or as it is clinically referred to, menstrual affluent. So fancy, so fancy. So anyway, basically, they research menstrual blood, which is donated by over 20 people in the United States and sent to the Feinstein Institute on Long Island for research by Dr. Christine Metz, who was a guest on this podcast and her team. And what they have found out is very cool. So if you haven't seen that episode, dr. Metz walked us through the efforts that it took to be able to fund the study of menstrual blood and how it can hold the answers to numerous questions. But literally, because of the Ick factor, also known as men, not wanting to study menstrual blood turns people off. And by people, I mean men. And when the people are turned off, so is the money. So we and many other organizations are fully behind the Feinstein Institute's Rose Research study. And so that is the reason why we're bringing this news to you today, to keep you up to date on their progress. So they discovered a unique subcluster of proliferating uterine natural killer cells, which, by the way, is my new band name. I mean, come on. It's a slam dunk. Uterine natural killer cells. Who wouldn't go see that band? So anyway, they identified a unique sub cluster of these cells in menstrual effluent tissues that is, and I quote, almost absent from endometriosis cases, along with a striking reduction of total uterine natural killer cells in the menstrual effluent of the samples of study participants with endometriosis. So what does that mean? That means that people who do not have endometriosis so far in this research, the research shows that they have these uterine natural killer cells. And people who have endometriosis, either they're almost absent, meaning there are none, or there's a striking or large reduction of total UNK cells in these samples. So with some more validation, the hope is that this test can get a jump start on diagnosing endometriosis, which is really important because it's a progressive disease. And we have to stop we have to stop kicking the can on progressive diseases down the road just because they happen inside of a uterus or around a uterus. That's just not a legitimate reason here to call out the obvious. All right, one more tidbit. This is a classic. Although there are a lot of stories that we could have covered this week, but we have this amazing conversation coming up next on PCOS. So we're going to have to keep it just to these two. And these are two really big pieces of news. So this second one shouldn't come as a surprise. Lindsey Graham, he of no uterus or medical degree, is pushing for a national abortion ban. You know the one they said that they would never do? Yeah, that one. It's kind of a weird situation. Just come out in the middle of a week, nobody was expecting it and just dropped this. So it smacks of desperation, but because we're not talking about like a ban on the color bread or something, we're talking about healthcare. So people are already being damaged, their lives damaged, their rights taken away, their ability to make decisions that are based on what they feel is best for their own body taken away. And now Lindsey Graham of all people decides to come out and say we're going to try to do a nationwide ban. And the good news is it seems like a total desperate bid to hang on to power. And so the better news there is that it will fail. Just stop it. This go to stunt and it is a stunt to hold on to power, will royally backfire and we'll do everything we can to ensure it because pregnant people and those who provide health care to pregnant people know better than some yahoo without a uterus. My mom used to always say it's so much easier to look at other people and point the finger at other people instead of looking at yourself. And it's like just leave abortion care up to the people who have a uterus and the people who provide health care for the uterus. That's really all you need to do. And then we can focus on improving 10 million other things that we need to do on this planet. So when we come back, we will be joined by Megan Stewart, a thriver, a doer, the founder of PCOS Awareness Association, and someone whose personal story is a flat out inspiration.
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Carol: We are so excited to bring Megan Stewart to you today on the Hello Uterus podcast. Megan is the founder and executive director of PCOS Awareness Association, the second largest nonprofit organization dedicated to polycystic ovarian syndrome worldwide. They are celebrating their ten year anniversary this year and she also lives with PCOS. And so during September PCOS Awareness Month, there's nobody better to have on Hello Uterus than Megan's store because she covers both sides of the story here. She lives with it, she had to deal with it, and then she also did something about it that we all benefit from by launching the Awareness Association for PCOS. So we are so grateful to have you here, Megan. Thank you for taking the time to be with us today. It's just a thrill to have you on the show. Absolutely.
Megan: Thank you, Carol. I really appreciate you guys asking me.
Carol: Absolutely. So tell us about why you founded the PCOS Awareness Association.
Megan: Yeah, as I joke about it, I always say, how much time do you have?
Carol: All day.
Megan: All day? All day. I got a story for you.
Carol: I bet you have more than one and we're here to hear them.
Megan: Yeah, absolutely. So I actually started showing symptoms of Pcos when I was about nine years old. And at night, you don't pay attention to those things. You're just trying to live your childhood life and do what other kids are doing. And I was actually a very active child. I was an equestrian, I was a basketball player, and I dabbled in some volleyball. I just was always doing something. One of the largest symptoms that my mom saw on me was rapid waking. I gained like 30lbs pretty much overnight. And my mom that made my mom pretty nervous. And then coupled with the simple fact that I had no menstrual cycle, my mom always says that they say that you're supposed to take after your mother when it comes to when you start your menstrual cycle. And she had started hers when she was about nine. And so she was waiting. She was like looking at the clock, like, where is it? It's just start any day now. And then on top of that, I had such horrible mood swings that she literally was waiting. She was like, this must mean she's going to start any day now. But when I didn't and then also was losing hair on my head, on the top of my head. And then also have persistent, which is the hair growth on the face. And so she just became worried and didn't know what to do. So she started taking me from medical professional to medical professional to more medical professionals. I think in the time, I had seen at least two OBGYN, an endocrinologist homeopathic doctor and my primary care doctor, and they all had something different to tell her about what was going on with me, including, but not limited to that. This was just something that all adolescents going through puberty had to go through and that just give it time and it would clear itself up. She was also told that I just needed to lose weight, which was not a simple task. I remember just a quick story. I remember us doing Weight Watchers. This was way back when, and Weight Watchers used to do this thing where you went and you sat in person in a group and when you first walked into the group, you weighed you had to weigh yourself and they tracked your weight for you. And I just remember that everybody, as you sit in the group, they cheer you on for how much you lost in the prior week. I remember again, nine. I didn't make my own meals, I didn't keep track of my own schedule. My mother did, so my mother made my meals. I had a strict schedule on when I did exercise and activities and whatnot. I just remember sitting in that group and my mom the prior week, my mom had lost like £2 and I lost £.2. And I just remember feeling like, what is wrong? Why is my mom losing the weight but I'm not losing the weight? So that's part of the symptoms of PCOS is that you gain the weight and it's just not easy for it to come off. And that she was told that I just needed to lose the weight and the rest of the symptoms would clear themselves up as well. She was even told that it was in my head and that I was just faking all of my symptoms just to get out of school, because I had missed quite a bit of school due to pelvic pain and just not feeling well. Right. Just not feeling normal and the mood swings, of course. She actually just two years ago, she shared with me a story about what she did to try and figure out if it was in my head. And when she told me, I literally said to her, you did what? She actually went out and bought placebo pills and she gave them to me and she said, this pill is going to cure you of all of your ailments. Like, take this pill and you're going to be better of everything. She actually told me that for the first two weeks, it was like night and day, all of my symptoms were gone miraculously. And she was thinking in her head, like, yeah, this is in her head. She said by the third week, no, she said those symptoms came back like, ten times worse and that I had missed pretty much two weeks of school at that point is that point that she realized this was not in her head, like, something is wrong. And so back to the doctors, right back to try and figure out what was going on. Finally, by the age of 16, I was formally diagnosed with PCOS. And unfortunately, at the same time, I was diagnosed with cervical cancer. At the age of 16, I was told by my OBGYN, let's deal with the cervical cancer, of course, and let's talk about PCOS when you're ready to have children. And of course, at 16, I was like, EW, I don't like boys. I'm not even thinking about that. But by the time I had the surgery to remove cervical cancer, but by the time I was 21, cervical cancer had returned, and so did the symptoms of PCOS. My cyst rupturing. That was just horrible. I was actually hospitalized more than once I was hospitalized, but the time that I can equate to starting PCOS Awareness Association was the last time that I was hospitalized. I had no health insurance, so I haven't been to my primary OBGYN or anybody in a little bit. And I just kind of figured that was the problem, right? That I hadn't seen a job during a while because I had no health insurance. So I was at my job as a contractor with no health insurance, keeled over in pain, sweating profusely. I was pale, and they were like, no, we're calling 911. Ambulance came and picked me up, took me to the Er. My mom met me at the Er. And I just remember the attendees telling me that there was nothing that they could do for me. I just had to go through the pain. They gave me fluids, but other than that, nothing else. No hope, no anything, no information.
Carol: Unbelievable. I mean, actually, I should say completely believable.
Megan: Yeah, it was sad to the point where, as we were walking out of the Er, I'm a November baby, which makes me a scorpio. My mother said, what are you about to do? She said she saw the scorpion fire behind my eyes, and she was like, you were about to do something, and I don't know what it is, but please be legal. I thought in my mind, like, I cannot be the only one going through this. There has to be more people in the world that are dealing with the same things that I'm going through. I'm dating myself, but at the time, the only online chat platform had to be Craigslist. So I went out to Craigslist and went into the little chat misconnections PCOS. I went out there and had put in the search engine PCOS. At the time, I was living in Seattle, Washington. Two message boards popped up, and I was like, oh, there's people local to me that are dealing with PCOS. Let me get in these message birds and see what's happening. It was really disheartening because their messages were sad. They were very kind of like, why is this happening to me? I don't understand. Is there anybody else that's going through the same thing out there? And nobody was responding. Nobody else was responding. So I responded. It was kind of like a chat back and forth. And at the time, well, I'm very close to my family. My family is very in tune to, like, me and things that are going on. And they knew that I had been re diagnosed with cancer, and they also knew that I had been in the Er. So I had family members from all over asking me, like, what's going on? What's happening? Tell us what TCOs and Why is this happening to you? And so in my mind, I thought, okay, well, to help educate, I'm going to go ahead and start making some teal bracelets. Teal. As I have found out through the message boards, through a couple of other websites that were out there, there was a website called Soul Sisters, which is still out there, and it's really a message board for just all people with PCOS talking about what's going on with them and whatnot through there. I found out the color was teal, and I started making handmade teal bracelets. This was about the time that Instagram had first started. And I had a cousin who had asked me for at least 24 of these handmade teal bracelets, and she armed her arms with them and was on Instagram in a picture where it was like the Wonder Woman posed. And next thing you knew, she tagged me in the picture. Next thing you knew, I had people from all over the world asking me for bracelets and saying that they felt very alone I'm with PCOS. And they had no idea that there was other people out there with PCOS too. And they were all excited, like, can I get a teal bracelet? So that's when it kind of popped in my mind, okay, let's do this. Let's go ahead and make all these teal bracelets, mail them out. Postage was more than I was selling these teal bracelets for, but by the time I had sent out to India and Hawaii and just from all over the world, I took the proceeds from those sales. And I started PCOS Awareness Association ten years ago. And I really try and make PCOS Awareness Association a hub for not just information, but to be a place for support, also resources, because that was what was really driving home. The needs for me is the simple fact of, yeah, I can sit here and say I have her satisfaction, which is the hair growth on the face, but what can I do about it? What is a resource out there that's able to help me with that? Or I could sit here and say, I have weight gain. Okay, we know that weight gain is a symptom and it's dangerous impossible to get rid of the weight. What are some resources that I can have to help me in that area? We try to look at each symptom and we try to give a resource for those different symptoms.
Carol: That's fantastic. And are you still on Instagram?
Megan: Yeah, we, of course, have made an official PCOS Awareness Association page. So on Instagram we are Pcosa on Facebook. We are PCOS Awareness Association. On Twitter, Pcosa and on LinkedIn. PCOS Awareness Association. And people keep trying to ask me about TikTok and I'm horrible at videos, so I don't know if TikTok is going to happen.
Carol: Yeah, you're like, okay, somebody else needs to step up and take that on because I think you're doing quite a lot. I think you've done enough. Just don't stop doing what you're doing. Megan we can't have that happen.
Megan: Oh, no, I won't. Like you said, this is our ten year anniversary and it always amazes me. A couple of years ago, we were asked by Essence magazine to come to Essence Festival in New Orleans and we hosted a booth. It always amazes me when you can tell. I can sit there in a booth and I can scan the crowd and I can tell that person from across the room that have CCOs because they're literally looking at all of the different booths and all of a sudden they see mind you, the way I manage a booth is I put teal sparkles all over the place, right? I'm big on sparkles. My friends will tell you that if it doesn't glitter and if it doesn't sparkle, it's not Megan. Oh, I love it. Sparkles everywhere. And so you can see them scanning the room of all the booths, and all of a sudden their eyes lock in on the teal sparkles and their face just lights up and they beeline to the booth and they're like, oh my gosh, this is about PCOS. Oh, my gosh, I have PCOS, right? Just the excitement. And it's not exciting about having PCOS, of course, but it's the excitement of knowing that you are not the only one, and knowing that there is a support system and resources and information out there. That's what it is. And at Essence Festival, the most memorable one was a gal. I watched her from a distance come beelining to the table, and as soon as she got to the table, she was like, wait, are you Megan? And I was like, yeah, Megan. She's like, this is PCOS Awareness Association, isn't it? And I was like, yes. And she was like, oh my gosh, I've been following you since day one, and you've helped me so much. Your organization has been there for me in ways that you could never imagine. And she was like, I'll be right back. And I'm like, okay,
Carol: this can only be good. She was just so nice to me, right?
Megan: Next thing I knew, she brought her whole family over to the booth. It was her mom, aunt, her cousins, and everybody was just like, so happy. There were tears of joy in all of their eyes and they were just like, can we hold hands and pray? Sure, we could do this. So they were just so thankful of PCOS Awareness Association and stories like that that keep me going, right? It's things like that that keep me going. Because trust me, there's been plenty of times where we've run an event. During the event, I'm saying to my team, like, never doing this again. I'm not doing this again.
Carol: The old I'm never doing this again routine, right?
Megan: And by the end of the event, you can forget it. I'm like, okay, so when are we doing the next one?
Carol: Right? So next Saturday, cancel the baptism because we have an event to do. I don't care about your cousin's wedding. We're going to be talking to PCOS. I can certainly understand the tears in the eyes because PCOS, out of all of the conditions that we deal with, for me, it feels like the one that's the most squirrely. I'll say so many things that can be infuriating. Some of the things that you mentioned in your story, telling us about why you started the association, the fact that you were told at nine that it's in your head and I'm just going to get on a little vent box right now. I'm just giving everybody a heads up because this has been known to happen. The fact that your mom was gaslit too, right? So you're gas lit at nine. Then your mom is gas lit to the degree where I don't think she was trying to catch you in some act. But I think what she was trying to help. She was trying to do anything possible after multiple doctors. Tons of conflicting information to give you placebo pills. Which really struck me as wild on a couple of levels that we have to talk about. But to put your mom through that, I mean, good God, what does it take to just stop and go, this might be a condition? It seems like in my practice, I'm seeing multiple people with this. Maybe I shouldn't blow it off anymore. Right? That strikes me as something that could very easily be done. People could just stop blowing it off. That would require not being biased, racist or misogynist. So I know that those three things are ridiculously hard to unwind. We are in a Wild West in uterine care, right? It's the beginning of real uterine care. Because up until this point in time, we didn't have it. We had birthing babies and placate them or keep them quiet before birthing babies and after birthing babies.
Megan: You're really right. And that has come up numerous times in my family. Just that in general, because they say PCOS is genetic. There's no one else that I know of in my family down my direct genetic line, but it did come out, like, within the last couple of years, that my great grandmother, she died in 1936 or something like that. She was actually told she had had my grandmother and she was told, do not have any more children. Something is wrong. And she went and she got pregnant again with my great aunt and died giving birth to her. So in my head, like, what was wrong? But the fact that it's been kept hush hush this whole time, since 1936 or 37 in my family alone, why are we keeping this a secret? I don't understand. I should have known about this. This should have been something that I should have been able to tell a medical professional. When they ask you for your family history, I should have been able to write this down.
Carol: for sure. Yeah, but there's so much shame and also worse, right? Like, as women or as young girls, we're not taught to by society. Even if our families teach us this, it doesn't matter because we walk out the front door and we're told everybody yeah, that we don't matter. When you said at 16, they said, we'll deal with this when you go to get pregnant. This kicked in at age nine. Exactly. How long are we supposed to suffer before we're deemed worthy of treatment?
Megan: So we did a study, we sent out a survey about every two years. We asked questions like this, how long did it take for you to be diagnosed? And so the last time we did a study, it came out about 90% of those that took the survey said it took two to three years. So why is it taking so long? Why are we masking things with birth control pills? Why are we not talking about family history? Why is it that I needed to wait to hear about getting to the root of PCOS when I try and go have children? Why is that?
Carol: That really says to someone at the age of 16, your purpose on this planet is to birth children. And anything that gets in the way of that, we don't really have the bandwidth to deal with. Okay, you guys better evolve because I'm telling you, the kids that are coming through now, it is not their primary purpose to birth children. And you should kind of get your tough skin with people like Megan and me, because when you're faced with the youth that we're raising that are going to walk in your doors, they're not going to put up with that nonsense.
Megan: No, it's actually very liberating to hear. I talked to my cousins about PCOS and about health issues and whatnot, and they're like, oh, no, I'm not dealing with that. Right. Like, it's liberating to hear that they aren't going to deal with things like that from hearing from their doctor. You just need to lose weight. I actually recently got a new doctor and I got her for two reasons. One, she's of color, and two, she's a little chubby. She never tells me as soon as she sees that weight on that scale, when I go to her, she never tells me I need to lose weight. And she's literally stated to me, like, I'm not going to tell you that because I need to lose some weight.
Carol: I hate this whole blame thing. Even if losing weight is let's just say that in one particular situation, it literally is the single thing that stands between you and perfect health. Okay? It still feels like blame. And so in the medical community, mainly men, if you could please stop saying you need to lose weight. You got to stop saying that because it doesn't work.
Megan: No, I would much rather hear, hey, let's lose some weight. And here, let me show you how. Here are some ways that we can work on some weight loss. Don't just put it out there. Lose weight. Because that is, like you said, it's very hurtful, especially as a woman with Pts. If you're going to give me avenues and ways and resources, too, is the way. Sure. I've tried all sorts of things from diets, exercises, everything, and nothing has helped. So how? Tell me how.
Carol: I would want to also ask them why. Right. I have this vision. I'm beyond menopause, so I don't have the ability to do this. And I'm telling you, on the way into the studio today, I was wishing that I could actually fake the ability so I could go in and kind of try some of this stuff out. I want to be like the two year old that just learned the word why. And I want to ask that 52 million times in a physician consultation, you need to lose weight. Why? Well, because it's been shown that symptoms are alleviated. PCOS symptoms are alleviated when you lose weight. Well, why is losing weight alleviating the symptoms? Well, we don't have the data on that. And then that would lead into a series of questions about the cause of PCOS. What causes PCOS? Let's just stay at the table here. We don't know. We do not know. Why don't we know? They have no idea. Yeah, they have no idea. It's not because they're not smart. It's because they're not funding research on PCOS. As a matter of fact, the National Institute of Health still does not have PCOS listed in the database that we can all go search to determine how much they're actually spending on research.
Megan: Yeah, so there was a statistic that was out there a couple of years ago, and it said .2% of national funding went towards PCOS, the research of PCOS. And that's just why. Okay, so I don't have yes, breast cancer is very important. It's important to research breast cancer. It's important to research cervical cancer. It's important to research uterine cancer. It's important to research all of these things. But PCOS can lead to. Those things. So why aren't we researching PCOS as well? I just don't understand.
Carol: That's my point. I want to get, like, a group of physicians in a room, but I don't know, physicians, researchers, patients, whomever maybe I should just go talk into the wind because it's maybe not going to do anything. I'll come with you. Okay, cool. Because I keep wanting to drag them down into the root cause. So if weight is an issue and we know it's hormonally driven, activated, pissed off, whatever you want to call it, then we're giving hormonal birth control pills. We're introducing hormonal birth control pills into a hormonal environment that we don't understand. And we don't understand the mechanism of PCOS itself. You indicated that you gained £30 practically overnight. You'd have to live inside of a 31 Flavors ice cream shop to gain £30 in a month. That's not happening. That is literally the disease. Okay, so given that there's no treatment for it, you don't know what causes it telling people to lose weight or that it's in their head is called gaslighting and you really should stop doing it, then everything else is about as valid a suggestion as if I came up with it. Right. Because there's no foundation of knowledge around it.
Megan: Part of the PCOS Awareness Association is that we help fund the research of PCOS through donations that we receive. And when I came up with that stance that that was something we were going to do, and I went out to go find research on PCOS, it was maddening because most of the research had to do with infertility and weight. I was really like, okay, what is it? And I found one lab researching the wave of PCOS, legend Labs out of Cornell University. And so we became partners with them. And so now a percentage of our donations go to the funding of the research of PCOS from Lugin Labs at Cornell University. And Dr. Lujan, she is amazing. I tell her every time I speak to her, like, this is why we are choosing to help fund you is because you are not researching. Yeah, she's doing studies on weight gain in PCOS. She's doing studies on infertility, but her main study is, what is PCOS and why is it happening? Excellent. I swear she like, blushes every time I speak to her because I'm always on her case. Like, when is the study? When are we going to find the answers? And she's like, okay, well, we're at the beginning stages of X, Y and Z, and we probably won't have anything for another five to six years. And I'm like, why so long? Like, come on.
Carol: You know, it's so frustrating is that it's not because we didn't have the technology to study it. It's because there were no dollars, because I'm going to say it for probably the 10th time. The person running the National Institute of Health is a 72 year old white dentist from upstate New York, a dentist, of all things. I do recognize the importance of dental wellness and that it can create lots of problems, but can we please not can we just not go there? That makes me think that there are only two qualified people to run the National Institute of Health, and one of them is no longer living. And this was the second guy, because you know that there's a million people that are more qualified than a 72 year old dentist from upstate New York. And I'm just going to say that nothing against other dentists in upstate New York, but none of you people chose to go run the NIH, right? So I want to know, where does the money go? Who's this person? So let's talk a little bit. You mentioned earlier about birth control pills. We are pro birth control pills. Anybody that needs to have contraception should have access to contraception. I think it should be free. I think you should be able to get it out of, like, vending machines, right? You get condoms out of vending machines for free. Totally. That is stated. We can also say that there's a segment of the physician population in gynecology and primary care that prescribed birth control pills for everything.
Megan:It's like candy. It's like Halloween here. Everybody gets birth control pills, right?
Carol: I joke around and say, like, is your chili too salty? Just throw a couple of birth control pills in there, clean them right up. It's crazy. But what really gets at me, or eats away at me is what we don't know. We don't know how hormones operate. We don't know how they inflame cause or exacerbate these multiple conditions that are all hormonally triggered or activated. Fibroids, endometriosis, PCOS. If there's blood work being done before someone's given birth control pills, it's probably very basic blood work. It's not an indepth hormonal panel. How come nobody is saying, like, guys, this is like going into an underground cave without a map? It's no headlights, no water, no nothing, no map. And you know who's going in? Not the physician. It's the person who's taking the hormonal medicines. Right? You're getting sent into a cave, nobody's telling you how bad it's going to get. You don't know if there are spiders in there, and if you have any issues with being in that cave, they're going to make fun of you for it. For example, oh, those aren't side effects of birth control pills. I have hundreds of patients, thousands of patients on birth control pills, and I've never seen that before. Awesome. What a way to make a person feel like a liar. So how is it that this is how we're doing it? That we're using medications that we don't fully understand, to treat a disease that we don't understand?
Megan: I have no idea. But it is like their catch all for everything. Because, like, when I was nine, that was the very first thing that they did. And my mother, I just remember her being like, she's nine, what does she need these for? And they sold it as to help with hormone balances. Not for birth control, like the name, but to help with any imbalances that I may have. Okay, so what is there? There are 90 different types of birth control pills out there. I believe it's the number. I just remember them using me as a test subject for it and giving me at least six or seven different ones. Right. Oh, this one didn't work. Okay, we're going to try this one. What do you mean? So I think because hormones are so individual, we can't just hand out birth control pills like candy on Halloween. We just can't.
Carol: Yeah. We are guinea pigs in that situation where instead of operating with a baseline understanding of what's going on in our body, like, forget the pills just for a second, unless somebody says, I need contraception and I'm dealing with this. Okay. But even then, I really feel like we need to start taking a really deep look at hormones. I think some physicians believe that we're cookie cutters or that we're like cut outs and that we're similar to each other, and then they also don't take into consideration all the environmental hormones that we're bombarded with all the time. So I feel like if we had a baseline understanding of our own individual hormonal makeup, one, I think that would help with the madness that goes on in our heads when we're trying to understand what's going on in our bodies, being able to know, like, okay, here's what's going on. Hormonally for you. And here's some information about hormones so that you can understand why this is so important. Because essentially, it's like breathing. It's our system. It's our whole system. Right. So tell me about your experience with hormones and how you look at it and what you would say to somebody who feels like, well, I feel like I have to take them because, like, they say that the side effects are not as bad as the condition itself. How would you coach somebody?
Megan: That's a good question. Definitely like what we're saying. Ask questions. Make sure you're going into a medical professional's office with a list of questions. A lot of us get sidetracked or anxiety hits while we're in the office. So definitely have your list before you go into the office, and then ask follow up questions while you're in the office. Get all the information. Also, before you decide to take birth control pills, find out which one they're trying to prescribe you and go out and find all of the information on that particular. I was put on. Yes. And as a lot of us know and have seen the commercials in the past, those lawsuit commercials, have you been put on? Yes. Have you ever read if you were put on? Yes. And you experienced X, Y, and Z call this number because money could be available to you. Right? Right. I actually never had any problems with the ads myself. I just remember if they gave me the generic version of the ads, which I can't realize of me, remember the name right now, but that one would cause me added weight gain in me and it also caused a lot of spotting. There would be times where I would be like, wait, I'm on a full blown period and I'm halfway through this pack. I don't understand what's going on. So it just didn't work for me and for whatever reason. So I had opted a couple of years ago to not be on any birth control pills anymore. But to this day, if I do decide to be back on birth control pills, then my medical professional knows that you cannot have generic. You have to have the real deal saying cost you more, but it's going to help. I just feel like I've heard this so many times from our followers that it has masked their PCOS symptoms. They have literally come off of the birth control pills only to be full blown in a horrible state with PCOS. And they even have more symptoms of PCOS than they did prior to being put on the pills. A lot of women, I've heard that they had no symptoms of PCOS, were put on birth control pills at a young age for whatever reason. And then they came off of them and now they have PCOS and it's like, wait, what happened? Where did this come from? More than likely well, not more than likely, but because PCOS is incurable and it's just in you. You had it before. It hadn't manifested itself to the extent of you could notice things until after you came off the pills. And it was like your body was like, what are you doing? It has its time, its place, and its reason. Just as you were saying, most women with PCOS are put on metformin. Metformin is not for PCOS. Metformin is for diabetics, for diabetes. But because PCOS tricks your body into thinking that you are diabetic, they put you on metformin. Let me tell you, metformin is horrible. At least 99% of the people that I know that take metformin have a complaint about it. It either causes you bad stomach issues and I've even heard people that are on it that have to take time off of work and that they have to make FMLA cases for it because they spend most of their day in the bathroom with metformin. It's just a horrible medication. And it just so happens that my dad was prediabetic for a second there and they gave him metformin. And I just remember him taking it and he was like, Wait, this is what you're on? And I was like, yeah. And he goes, this is horrible. He's like, I can't eat, drink, sleep, move, function, nothing. He was like, I'm just always in the bathroom. He had a weird feeling for it. He said it made his body feel crunchy, like whatever that means. He said he just made his like every time he moved, just felt crunchy to him. And I was like, what does that even mean? Don't go to the doctors talking about your body feels crunchy, please.
Carol: I know, but that's really interesting because I love that kind of feedback, actually, because when we think about these medicines going into our body, I don't know, sometimes I think we have like a sort of cartoonish idea in our head that it knows exactly where to go and it's not going to mess with anything else. And it's like it's like, no, your liver is taxed, your kidneys are taxed. Everything is just freaking out. And if you're taking birth control and then you're taking that drug and you're taking pain pills, your body I'm not being woo woo about this or like super crunchy granola about this. I'm being legit real. Your body cannot metabolize all of those medicines.
Megan: We have not evolved no medicines and any sort of nutritional anything because let me tell you my form and will send you to the bathroom so quick. And that's funny that this happens because they say that you actually can lose weight on metformin. And I strongly believe you losing weight because you're on the toilet all day.
Carol: Yeah. Your entire colon is going to go on hiatus because it's not going to be pushing out anything that's normal. You mentioned something that I found really interesting. Well, I actually want to come back in general to this idea that you really got to get a definitive diagnosis. I know how good it feels to get out of a gynecology appointment in less than 15 minutes and still have some degree of your sanity and selfesteem intact, but you have to get at the root cause. As Megan said, these medications are symptom suppressors. So especially if you're not really intimate with how your body feels, then you might be thinking that there's an improvement when really the disease is progressing. There's not an improvement. Or maybe there's been a slight improvement in some areas, but you're not conscious of the other hits that your body is taking. Right. So getting a definitive diagnosis and for whatever reason, it seems to be a challenge. And I'm going to personally put the blame on birth control pills. I think it's an easy out with your doctor has about seven minutes to solve your problem, and that's going to be the fallback. So we know that people with PCOS have elevated risk for diabetes and cervical cancer and a myriad of other conditions that are hell on earth on top of PCOS.
Megan: Diabetes, heart disease, fatty liver, non alcoholic fatty liver disease, cervical cancer, neurotune cancer, breast cancer, just a whole slew
Carol: of terrible conditions. We Know that it's hormonally agitated, and you said it in a way I'd not heard said before, that it tricks your body into thinking you have diabetes. And diabetes is also hormonally agitated. And then I also think about the stress that people are under. Stress agitates your hormones too, so it can release loads of cortisol and create various imbalances hormonally in your system. And one of the hormones that runs amok in PCOS is androgen that is called a male hormone. But I don't even buy that stuff because I'm like, you know what? You don't know anything about. Androgen so you can call it male if you want, or female if you want. You could call it a ferret hormone for all I care. You don't know enough about the freaking hormones.
Megan: So yeah, androgen levels being high, testosterone levels being high. And they think that's probably what causes the male pattern baldness in women with PCOS is because you are getting more testosterone in your system than you should. And then that also causes, like, the facial hair as well. But yes,
Carol: and then diabetes. Do you have any insight as to how?
Megan:insulin it's affecting your insulin levels? So therefore, that's why it tricks your body into thinking you're diabetic. But then if you're going too long, of course you get prediabetes. And if you're going again too long without treating that, then you're diabetic. So, yeah, it's type two diabetes. It can definitely lead to me.
Carol: And now we come full circle back to the appointment that you had when you were 16 and the doctor was saying, we're not going to deal with your PCOS until you're ready to have kids. And you could have been like, well, dude, that's not going to happen until I'm 40. And in the meantime, now you've got three additional complicating conditions, one of which, diabetes is a terrible disease. So I wanted to kind of paint that picture because much like when you found your people on Craigslist, which I think is so hilarious, I love it. I just love everything about Craigslist, actually. I really do. I want you and clearly. Meghan has devoted ten years of her life to this to know that the crazy is not in you. It's in everything else that surrounds dealing with PCOS. Diagnosing it treating it as a matter of fact. Just to bring us close to our closure. Because Megan has a life and I could talk to her for the next ten years. But I don't think that's what she wants to be doing.
Megan: Yeah, there's definitely more to the stories that I can definitely share just in what you're saying. Exactly. So I had cervical cancer three times. Three times. And so I had the surgery to remove it twice. And then the last time, I took chemo pills. But just recently, within the last two years, something just was off. Learning your body. Learning your body and being your own advocate, I figured something was wrong. So I actually went to the doctors about two years ago now and said something was wrong. And they looked at me like I was crazy. And they were like, no, no, we've run all of the tests. Nothing's wrong. I said, no, something is wrong. Finally, after the second time's visiting, lo and behold, because I had the surgery to remove the cervical cancer twice, that put me at a higher risk for Bovar cancer. Lo and behold. Bovar cancer. No way. So just like you're saying full circle, right? Just in learning your own body and being your own advocate, you have to speak up for yourself. You have to speak up for yourself. And for as like my mother, speak up for your loved ones. You need to go in with questions. You need to get your answers. You need to get the full story because my mom remembers them telling us that if you have the surgery more than once, it's going to put you at a higher risk for vulvar cancer. I do not remember such things. I was too young, too young to remember things. But now here we are today, right?
Carol: Just unbelievable. Honestly, mistreatment from the get go. The only reason it's not because this is such a mysterious disease or it's so fast. I mean, I'm not suggesting it's easy to crack things like this, but what I am saying is that we could have started this 40 years ago, right? And there's so much damage has been done to people trying to solve their bad or irregular periods, to the people living with those conditions, to their families. And we talked about what your mom went through. It has to come to an end right now. I came across a quote in an article about PCOS from a doctor in Las Vegas. Her name is Doctor Cindy Duke. Do you know Cindy Duke?
Megan: So Dr. Duke is jabari off of Black Panther. That's his sister. So Dr. Duke, we have spoken a couple of times, helped us in a couple of PCOS campaigns that we've done.
Carol: I love her because she says it like it is. This quote, most of what we use to treat PCOS is reappropriated from other medical conditions. They're not putting research and development into therapy specific for PCOS because there's no money in it as a field. But there's money if you're infertile and you need treatment. And so your experience at 16, the doctor was like, oh, we'll talk about your PCOS again when we can make money off you. We can get babies. Oh, my gosh. Just the whole idea of like, in closing, if someone leads with lifestyle. If they leave with lifestyle changes, I would say that's not the right situation unless they are so empathic and compassionate about it. And the way that they're leading is not saying you need to lose weight, but it's actually saying one of the things that can happen when you're living with PCOS is that you can gain weight outside of your control. There's nothing you can do about it. And also, you may not be able to lose the weight. You could run marathons. You could cross Death Valley. It doesn't matter. It's not going to come off. Because there is an imbalance in your system. And this particular system, much like all living creatures on this planet, is calibrated within a Harris breath of life. Like, I don't even know what that phrase means, but that's how I feel about this. Okay, so we have to stay in balance. And so Megan said something so beautiful that she knew something was wrong. And so I say, all of your intuitions have a medical degree right now. That doesn't make you all doctors. I'm not a doctor. Megan's not a doctor. But our intuitive capability and our ability to observe our bodies and what is happening to them is the evidence that a good doctor uses to get you well. So let's definitely be paying a lot of attention to ourselves. And then if somebody tells you to lose weight, just call me or Megan.
Megan: Right. I will take that call. Just put me on speakerphone. I'll just be on speakerphone so I can yell at the medical professional. Like, no, stop.
Carol: Wouldn't that be great? Yeah, it'd be such a cathartic job. It would just be like at the end of every day, I would just feel so good and drained in the best way. Right. Because you would be taking those calls all day.
Megan: My mom actually said something, and she said it since I was little, that I have to remind myself it's that there's a reason why they call it practicing medicine. It's because they're doing just that. They're practicing.
Carol: It's so true. And I think a good doctor will tell you the same thing. Yeah, right. Because our bodies are continuing to evolve. And as we said before, they're exposed to a myriad of things in our environment, and nobody has a clue how that's affecting us. Not at all. I want to have an episode that is just it'll be boring to listen to, but it might need to be required. Just called, not a clue. And we're going to list all the things that nobody knows anything about that we think, I'd listen to that. That wouldn't be boring. I'd listen to that. Yeah. It's crazy how much we go in thinking like, oh, they know everything, and then you find out later.
Megan: That's a reminder in itself right there. Like, they don't know everything. And therefore, you need to remember that you are paying them just like you pay your nail salon. Just like you pay your hairdresser, you pay them. So you have every right to take your money someplace else if that's how you feel.
Carol: Absolutely. And also if you're in a consultation and you feel like you're not being heard, I feel like you have the right to get up and say, hey, I want my copay back. This isn't working out. This is not a shared decision making experience and I feel like you're dismissing my lived experience. So I want my cash back. And then find someone who does hear you. And I think that is the high note that I want to leave everybody with here is that it's changing. We said it's the wild west at the top of this show. It's changing because of people like Megan, because she's not shutting up. So eventually the amount of information that clears up the misinformation is enough for you to feel confident, to advocate for yourself. And that's where I think we both hope that you all land is in a position to advocate for yourself. Megan, thank you. This has been amazing. We've been talking for an hour straight. I could talk for another 5 hours. I really hope that you come back on. Yeah, okay. That would be amazing. And also where can people find the association?
Megan: Yeah, so our website, which houses all of our support, information, resources, all of that good stuff would be www.pcosaa.org. And again, we are on all except for TikTok. We're on all social media, so you can find us on Instagram, Facebook, LinkedIn and Twitter.
Carol: Excellent. And if somebody is a Tik tok Aficionado and living with PCOS, please reach out. I need help. Yeah, I hear you. Well, we commit to help you as well. You don't kind because one of our focuses is going to be on funding research and funding organizations that fund research. Because the one thing that I can't sugarcoat, that I can't like, stitch a silver lining into is that if we don't have the research and the data, we have no foundation from which to operate with strength, we will go backwards. Yeah, we're seeing that. We're seeing it happen right now.
Megan: That's a whole other episode.
Carol: Exactly. And actually it's an episode that I would love to get into because one of the things that we didn't address with PCOS is that you have a high likelihood of spontaneous abortion. We don't say miscarriage anymore at Uterine Kind because it's totally blamey.
Megan: I love it.
Carol: So you have a high chance of spontaneous abortion and so you got a no going in. Thank you, Megan, for already committing to come back on the show. You like how I just did that?
Megan: Count me in. Thank you. I appreciate you guys. Absolutely.
Carol: Thank you so much. And we will be right back after this short break with ending on a high note.
Ending on a high note. It's hard to end on a high note after you've interviewed somebody like Megan, because that's a high right there. I could have talked to her all day long, as I'm sure you all figured out by now. And it just personally makes me feel like a complete slacker in my life. And when I look at what some people are dealing with, health complications and their jobs and their family and then launching an association, and it really does inspire me to just continue to work my tail off in the areas that I'm focused on, which will hopefully help as well. But boy, Megan, you're a rock star. So we do have another high note, though. The founder of Patagonia, which is an outdoor apparel company, I mean, it's more than just outdoor apparel, but generally they're known for their indestructible outdoor apparel. They are taking 114 planet and the founder and I've practiced this. Hopefully I don't butcher it. Yvon Chouinard. Nah, I think it's Yvon Chouinard. I think that's how you say it in French. I'm teaching myself French. Clearly I'm not doing a great job. So anyway, donated Patagonia, the company, to a trust, the company that he and his family built, so that now all profits that aren't used for company initiatives will be poured into nonprofits working on behalf of the planet. Typically, I'm like oh, yeah, sure. Now all profits not used for company initiatives and in most companies be like, all right, guys, let's bleed those profits out over here so that we give $5 to a nonprofit. But in this case, you're talking about a guy, a billionaire, who probably has like three pairs of pants in his closet. That's how he lives. He believes that you invest in a small amount of key things that you need. So in this case, clothing, just a small amount, and you get on with life. I really respect that a whole lot. And I'm sure there's a lot of complexities to this arrangement. But think about it. I haven't watched succession. Everyone says it's amazing, and I really want to watch it. But think about this is a family business and they were able to pull it off. You can imagine some families, people would be like, no, we're not doing that. And then there would just be this horrible break apart and what have you. But in this case, Yvonne Shui Naar made it happen. It's a win for the planet, his beneficiary, and it's a win for humanity. May it also cause other billionaires to self reflect. No, I'm serious. Self reflect. You got to learn how to do it. Really just stop it with the yachts where you have to take apart a bridge in order to get them out of the place in which you had said yacht built. Just cut it out with that stuff. We have serious things to do here. You're only Mr. Billionaire on the planet for a fraction of a nanosecond, comparative to the planet. Could you just do something really awesome for your time here. It would be great. I'm kind of speaking to Jeff Bezos, but anyway, I hope everybody does. So thank you, Megan, for being with us today and for taking the lead on PCOS awareness through the PCOS Awareness Association. You are impressive AF, and we're really glad you're here. Pitch in with Megan and her team, please, by visiting Pcosaa.org. Their organization funds research and partners with organizations that are working to advance research and humane treatment of PCOS and PS. Megan, a shout out to your mom for caring and taking PCOS seriously. I hope I get to meet her someday. Thank you all for spending this time with us. And thank you to Angel and Mary Elle for producing the podcast. You guys rock. And to the team at Uterine Kind for bringing your agame to solve the problems faced by those living with chronic uterine or uterine adjacent conditions. Visit uterinekind.com for more information about our app and to enter our Beauty Heroes Gift Away, just submit your email address. We will not sell it. We will not spam you. We're just really going to put it into a randomizer and pick it out because we're gift givers here. We like to give gifts and spoil people. So let us spoil you with some killer, truly clean beauty products. And do come back next week for an important conversation with a gynecologic surgeon who does not mince words when talking about bias in uterine health care and the realities facing uterine Kind today, as their doctors need legal teams in the or. Staying on top of uterine news and learning about uterine care helps you become a citizen scientist of your own body, and this gives you a power, but b also the best opportunity for wellness without delay. And we try to make it a little fun, but our main goal is to keep you informed and aware, plus a little fun. So till next week, be cool, be well, be kind.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is to not be used to diagnose or treat any medical condition. Please speak with the physician about your health conditions and call 911 if it's an emergency. And thank you you're for listening.