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.
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.
Post pill (after birth control)
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 private 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.