Megan Pearson founded and runs the PCOSAA (PCOS Awareness Association). She shares her story, what women need to know about PCOS diagnosis and treatment, and how PCOSAA is committed to helping these women.
This is an interview with Megan Pearson. Megan founded and runs the PCOSAA (PCOS Awareness Association). PCOSAA has made amazing strides in awareness for polycystic ovary syndrome.
In this episode, you will learn about:
How 10 million (or one in five) women in the United States have PCOS
The mental, physical, emotional and even spiritual impact PCOS has on women’s lives
The symptoms commonly associated with PCOS
The two diagnostic tests available for PCOS
Non-traditional treatment options
How women can find support
Resources:
Check out our Find a Doctor resource
Check out all of Fempower Health’s resources on PCOS and Nutrition.
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Subscribe to the Fempower Health Podcast on Apple Podcast, Spotify, or anywhere else you may listen to podcasts.
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Transcript
Georgie: I’d love for you to share with us your story and what made you decide to create this amazing organization.
Megan: when I was about 9 years old, I started showing symptoms of PCOS. At the time, there wasn’t much known about it. My mother didn’t know what was going on with me. I was gaining weight even though I was an active child. I gained something like 50 pounds in a short amount of time.
It was very apparent that something was wrong. I was losing my hair, I had acne. That was excused due to adolescence. My mom was my biggest supporter and advocate and I really appreciate her efforts beginning at this young age.
She took me to the doctor, who told me to just lose weight and that my symptoms were “normal.” My mom pushed back and said all of these issues just didn’t seem right. We jumped from doctor to doctor to doctor between the ages of 9 and 16.
In that time, I had probably seen four different doctors. Around the age of 16, I was referred to an OBGYN. She took one look at my records and was like, “you have PCOS. Let’s talk about this and do some more tests.” I had never had a pap smear.
She did that and an ultrasound. Come to find out, not only was I diagnosed with PCOS but also diagnosed with cervical cancer at the age of 16. At that time, PCOS wasn’t on my mind or anyone’s mind. The cervical cancer got priority, for sure. I had the cancer removed.
Around 20-21, I really started experiencing pelvic pain. I couldn’t understand what was going on. I was so exhausted all of the time. The hair loss was even worse than before. Depression, anxiety so unbearable that it was back to the doctors left and right.
Again, they just wanted to address my weight. They told me not to worry about PCOS because I wasn’t trying to have a baby. It became more apparent that PCOS was such a large part of my life. I was admitted into the ER when a cyst ruptured.
My mom, to this day says that when we were leaving the ER she saw in my face that I was like, “nope, we’re never doing this again.” We both realized, in these life-changing moments, being told that there was nothing that could be done for me, that there had to be options. I started researching PCOS more.
I didn’t find anything that was directly related to me and yet I knew I couldn’t be the only one. I kept seeing research that made it seem like this was a really limited condition. I couldn’t find resources.
My family started asking questions about what was going on with me and how they could help. I started realizing that nobody knew what PCOS was. First, I needed to inform my friends and family. I started making handmade bracelets. I learned that teal was the official color of PCOS. These handmade bracelets weren’t anything special.
I was living in Seattle but have family in Massachusetts. Everyone started wanting bracelets. We got on Facebook. The idea was to open everyone’s eyes and make connections. I started getting messages from all over the world from girls and women that were like, “I was told that I have PCOS and I’ve never seen a bracelet or seen anyone else raise awareness. I thought I was alone! Can I get a bracelet?”
I was literally sending these bracelets all over the world. It became apparent that something needed to be done. We need support, resources and information. That’s how the PCOS Awareness Association started. I’m told it’s so selfless to have started but it isn’t: it’s entirely selfish. I needed it. Where there’s a will, there’s a way.
Georgie: what’s so interesting is that even once you received the diagnosis, you had to go through so much. It also brings to light that this is something that really impacts women’s lives in so many ways.
Now that we understand the background of what you went through, let’s talk about what PCOS is and how it’s diagnosed and then we can discuss treatment. Polycystic Ovarian Syndrome is PCOS. It affects 10 million women worldwide. Maybe we can start with the basics of definitions and common symptoms.
Megan: 10 million means one in five. I often walk into stores and do the count: including me, 4 of you have this. It’s an endocrine disorder that affects women from head to toe. It is most commonly diagnosed when women struggle with infertility. It’s the number one cause of infertility.
It can cause obesity, sleep apnea, insomnia, pelvic pain, hair growth on the face, hair growth on the back and stomach, increase in male hormones (which can cause baldness), cysts on the ovaries, acne, oily skin, dandruff there are so many. Recently, within the last couple of years, I was going to the dentist so much. They would be like, “hey, you have another cavity.” I take care of my teeth! I recently learned that PCOS actually causes tooth decay.
I would definitely suggest if someone thinks they have PCOS, keep a journal of your symptoms and how you’re feeling and what you’re going through.
Georgie: it’s funny that you mentioned this because we wrote a blog around dental hygiene and infertility. I had cavities all of the time. My brother never flossed, never had a cavity. Me, a “perfect” child, had a cavity every time I went to the dentist. I have endometriosis. It’s also linked to that. We’ve learned to live with so many things but there are root causes that could be uncovered if we pursue explanations.
You shared that even when you’re diagnosed you’re dealing with a lot. Would you say this is a very similar experience to most of the women who struggle with PCOS? How else do these symptoms impact women’s lives?
Megan: during our last PCOS CON conference, my mother came and I heard something from her that I had not known. She was sharing that, when I was being diagnosed, a few medical professionals had told her that it was all in my head and I needed mental help. In my family, there was a huge book about naturalistic medicine.
She decided she was going to give me a placebo pill that was the cure for what was wrong with me. For the first few days, my spirits were up and she thought it was working. Within two weeks, it turned into 10x worse than what it had been before.
At that point, she realized that it was not in my head and there was actually something wrong. We had to start seeking 2nd, 3rd, 4th, 5th opinions. Many women going through this process know that something is wrong and just aren’t being heard. Their symptoms may look like something else. I need and want for people to understand that it’s real. This is real. If you aren’t getting the answer that you want from one medical professional, go to another one. There’s a reason they call it “practicing” medicine. They don’t have all of the answers. That’s one of the things that PCOSAA strives for: know that you have the right to go somewhere else and get the help that you need.
Another thing that we see a lot is that it’s not just mental, physical and emotional, sometimes the impacts are spiritual. When it comes to infertility, people have religious pressure to have children. Different cultures require women to be specific ways. If they don’t fit the mold, it can be a source of shame or disappointment. In some cases, it’s a life-and-death situation. There are so many different ways it can break women’s hearts.
Georgie: now that you speak about that, it makes sense and it is tragic.
So, basically, this illness creates a lot of challenging symptoms that impact your daily life but it can be even more so than just the symptoms themselves. There can be additional impacts such as on a marriage or your position in society.
There seem to be two different sets of criteria for diagnosis: the Rotterdam or the Androgen Excess PCOS Society (AE-PCOS) criteria. From what I was seeing, it seems as if people are leaning more towards the AES but maybe you could shed some light on why there are two different criteria and what the difference is. Could that be causing confusion?
Megan: most definitely. I actually know 3 sets of criteria: Rotterdam, which requires all 3 features to be present in one person; European Society of the Human Reproductive Medicine, which requires 2 features; then the Androgen Excess PCOS Society critera, which looks at it as a hypoandrogenic with ovarian cysts.
That is so confusing. Who came up with this?
None of these criteria have been updated since the early 2000s. Medical textbooks, as far as I know, only talk about the Rotterdam criteria. There is a constant fight. Having these different criteria doesn’t help the situation. It needs to be updated most definitely.
Georgie: one of the things we talked about was that you’re not a doctor but know this space extremely as a patient and leader of this organization. With that qualification, would you say that amongst the medical community, AE-PCOS Society criteria is the more accepted criteria?
Megan: it’s confusing and AE-PCOS is trying to make their qualifications the go-to set. It doesn’t exclude or disqualify things that could be PCOS. I hope we can come up with criteria that either under-diagnoses or over-diagnoses. There are different ways that somebody with PCOS could be researching. I hope that at some point we come to an agreement.
Georgie: I know you qualified by saying that everyone will present in a different way. However, you clearly went through years of trying to be diagnosed. What was “the thing”? Was it just happening to run into the right doctor? Was it knowing the right questions? What finally got the diagnosis?
Megan: I would definitely suggest if someone thinks they have PCOS, keep a journal of your symptoms and how you’re feeling and what you’re going through. My mother did that for me. She kept a journal about how I felt: “today, Megan had horrible anxiety,” “today she just wanted to veg out on sweets.” That proved to be a valuable resource. We came across a medical professional that finally diagnosed me but it was by chance. There was no searching for a PCOS specialist because we didn’t know it was PCOS. People have to be their own advocates. If medical professionals are telling you something that just isn’t the right diagnosis, you have every right to choose someone who is actually listening to your needs and wants. We do offer, on our website, a search for medical professionals in your area who are PCOS specialists. Medical professionals, when they bill to insurance companies, they use a certain code. There is a special code for PCOS. The search engine that we offer pulls how many times a specific doctor uses that PCOS code in their practice. Whoever, in your area, uses that code the most is considered a specialist. They obviously have the eye and know to see what qualifies as PCOS and what doesn’t. I highly suggest using that resource.
Georgie: I love the way you created the methodology for that.
Let’s talk about the different kinds of PCOS. I see it almost like a grid.
Insulin resistance
Post pill (after birth control)
Inflammatory related
Adrenal related
Are there any summaries you want to provide about that? I recommend reading The Period Manual by Dr. Lara Briden.
Megan: I have heard of that book. People with PCOS present in different ways.
Insulin resistant PCOS is the most common. It looks similar to diabetes.
Post pill PCOS: a lot of women, after they come off of birth control pills, they don’t get their period back. I personally feel like the pill masks symptoms. When you’re on the pill, you may not know what’s going on with your body.
Inflammatory PCOS may be helped by lowering stress and taking vitamin D. You may want to see a medical professional to lower your inflammation.
Adrenal PCOS can present itself in a way similar to thyroid disorder. I’ve heard that lowering stress is very important (easier said than done, I know).
I haven’t heard of different ways to diagnose these.
Georgie: it seems like there has to be a methodology and more than a set of criteria.
We posted a question in our Facebook group about what they wanted me to ask you. One question was about triggers. Are there triggers that could cause or inflame the PCOS?
Megan: sure. For me, when I was 9 and started showing symptoms, stress was huge for me. Emotional stress was a huge issue for me.
With acupuncturists, they look at your body as “happy” or “sad.” My provider showed my body as being sad, dark and gloomy. She framed it with the question, “what happens in cold, dark spaces? Mold starts growing.” She looked at my PCOS as “like a mold” growing inside my body.
I’ve also heard of analyzing the things we’re putting into our bodies. Are you eating fast food all of the time? Are you smoking? I’ve even heard agent orange from the war.
There are so many different things that haven’t been fully researched. Maybe there aren’t enough people researching PCOS or enough research to make this happen. That could open up a whole level of understanding if we understood the triggers or causes of PCOS.
Georgie: it’s clear that PCOS can impact every part of a woman’s body. How does that impact treatment? For example, I’ve heard so much about serious mental health concerns that PCOS patients present with. I’ve even seen alerts on Reddit groups to address suicidal thoughts or feelings. How does this wide variety of symptoms impact treatment? Do doctors look at one aspect and medicate? How do treatment decisions tend to be and are there any gaps that women face?
Megan: when I first started the PCOS Awareness Association, one time we got a message in our inbox that sounded suicidal. I literally had to play detective and find out where this young lady was located and call her local precinct to have someone check on her. We recently started another resource: if you text PCOS to our crisis helpline, you can get immediate help. I felt strongly about having that resource because the mental health component of PCOS is so grave. If women go to an OB/GYN or endocrinologist, they may not take that into account. Or, if you’re like me, you may just be given antidepressants. That may not really address the cause, though. That mental health piece is often overlooked.
We also often get talked to about weight all of the time. Telling somebody that they have to lose weight and that’s all you need to do to stop PCOS symptoms feeds into mental health issues and anxiety. It’s a vicious circle. Finding a medical professional that looks at you as a whole person is very important. You may not even find one medical professional to do that. You may have to go to multiple people. I see an OB/GYN and an acupuncturist and a therapist. I’m trying to address all aspects of my PCOS.
Georgie: that’s really important to bring up. I had spoken to one of the clinicians (read interview) who runs the PCOS clinic out of University of California San Francisco. She was saying that, ideally, you need a team. I think you’ve identified what that team is.
I’ve heard a lot of people talk about the hair loss and what to do about that. I’ve also heard that a nutritionist can help. From a hair loss perspective, do OB/GYNs have the training to treat that? Or are they more just prescribing medication like metformin.
Megan: I’m trying to think. My OB/GYN never addressed hair loss, thinking of it. My hairdresser has. She’ll give me little ideas and tips and tricks. I really haven’t come across anybody else that’s trying to help the male pattern baldness.
Georgie: one thing I do want to share: at Fempower Health, we’re trying to shed light in these interviews on the fact that no one is saying doctors are bad. One thing that is coming clear, even in this interview, is that how doctors are trained, how guidelines are set, what research is done, where funding is spent is a complex network. If you consider, a doctor who’s 60 won’t have the same knowledge as someone who got out of med school. There’s also just a breadth of knowledge that makes it impossible for a doctor to know everything about every condition.
As far as treatments, there are common treatments I hear about with PCOS. Pill, going on a diet (keto, cutting out sugar, minimizing carbs), metformin, myo-inositol.
Many doctors will prescribe the pill. Like you said, there’s major concern that the pill simply masks symptoms. When young women present with, not just PCOS symptoms but other illnesses, they get the pill and then are told, “come see me when you want to have a kid.” At a high level, what are your reactions about what people should be aware of when it comes to the pill and PCOS.
Megan: none of it is bad. What works for some may not work for all. As far as the pill, I was on it for a long time after I was diagnosed with PCOS. It regulated things and kept some of my levels in order. When I came off of the pill is when everything started happening (20, 21 years old). I was admitted to the ER and things just started falling apart. The symptoms were masked. The pill can do that. On top of that, there are so many types of “pills.” I think there are over 90 types of birth control pills. What I always like to say is, if one pill isn’t working, try another one. Find the right pill for you.
As for diets, I actually just did a call with a doctor who’s an advocate for keto. He put it into perspective. Quick, fad diets (which keto is not) don’t work. For me, I end up gaining weight back times ten. If you find a diet that works for you, I’m not going to discredit whatever works for you.
If you talk about metformin versus vitamins. Metformin can have bad side effects. It’s actually a pill for diabetes. My dad is prediabetic and they put him on it. A week later he said, “I don’t know how you do this!” It works for some people and doesn’t work for other people.
There are pros and cons to vitamins, too. You just have to find the combination that works for you. That may mean trying everything and figuring out what works. You can take metformin and myo inositol together. It really depends on what you are trying to achieve. It all comes down to what your ultimate goal is and what symptoms you are trying to alleviate.
Georgie: it sounds like there is no one-size-fits-all, which is also what makes PCOS so difficult. There are potentially four different kinds and it requires different treatments. The good news is, there are a lot of options and things to try.
Given that you work with so many people and I see this question a lot, the diet issue that causes drastic weight gains and losses. Have you seen women that you work with talk about this?
Megan: this is the first time I’ve heard of that. I would love to talk to somebody who this is happening to. There are some different types of keto. There are different types of PCOS. There’s some research to do there.
Georgie: what else have you tried that has worked?
Megan: acupuncture changed my life. A few years ago, I decided to try to be more healthy and natural. I wasn’t counting calories and intake just being more conscious about what I was putting into my body. I started working out but was feeling so tired all of the time. I had run into someone who was a women’s health acupuncturist. The first few sessions were like a therapy session. Then she told me about myself and it made a lot of sense. Then it was a regular treatment plan that began to help me. My energy level went through the roof. My workouts went from 2-3 times a week to 7 days a week. With that and eating right, I lost about 60 pounds in 7 months. It’s leveled and evened itself out since I started treatments like these.
Georgie: we actually interviewed Dr. Marc Sklar out of San Diego, who is a Doctor of Acupuncture and Chinese Medicine. Feel free to check that podcast out, too. Thanks for sharing.
What I love is that you have such a personal story with illustrations of challenges and successes, which will be so helpful for women.
I think it would be helpful for you to summarize your greatest concerns about PCOS and available resources.
Megan: the number one concern is finding the right doctor. Out of 1,000 people we’ve surveyed, 80% of them are unhappy with their treatment. That’s a huge number. We really have to work on that piece of the relationship between medical professionals and patients. That’s one of the reasons why we started PCOS Comm, which is our biannual event. We wanted to have that happy ground of medical professionals and patients coming together towards the common goal of making things happen. That is our greatest concern as well as the research aspect. There isn’t enough research going on. In the past, we’ve worked with Lujan Labs, which is out of Cornell University. Not everybody is trying to lose weight or have children. It’s important for us to get to the bottom line of symptoms and treatments. We know that 0.2% of government funding goes towards the research of PCOS. We want to get to the bottom of all of this and help.
Georgie: do they have a research timeline?
Megan: they have information on their website.
Georgie: given your work with all of this, what is your greatest hope for women’s health?
Megan: I hope that one day we are on the same level of attention and awareness as any other disease or disorder. So many women have PCOS and other health issues. We often get pushed under the rug. When we first started, we were trying to reach out to celebrities and prominent figures… we heard back from two PR people total. PCOS isn’t sexy enough to support. That’s so hurtful. It’s not sexy for us either! That shouldn’t be the goal. The goal should be to help and fix. The ultimate goal is to shed light on it and make sure that everybody who needs the support gets the support that they need.
**The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.**
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