Opinion Advocates for ideas and draws conclusions based on the author/producer’s interpretation of facts and data.
I was 18 years old when I was diagnosed with polycystic ovary syndrome (PCOS).
Sitting on a cold, unwelcoming table, I looked around the room trying to find comfort in the mundane, uninspiring office. I was surrounded by blinding white walls and freezing under a thin hospital gown in what felt like a 30-degree room.
I knew at my age not getting my period regularly was unusual. But before my internal fears overtook me, my gynecologist walked in and nonchalantly confirmed what I had already semi-suspected: I had PCOS. Still, in disbelief, I half-listened as I was told to just go on birth control, to try to maintain a healthy weight, and to come back when I decided to get pregnant. If my doctor’s flippant behavior was any indication, a hormonal disorder that can lead to diabetes, heart disease, and even depression was just not that big of a deal.
Six years after that initial doctor visit and much self-research, I came to learn more about my body from strangers on the internet than from any of my doctors. After years of struggling with my weight and hyper-fixating on what I ate, I can finally manage my PCOS in a healthy and sustainable way thanks to an unlikely ally: TikTok. I found my confidence again after discovering a community of women who, like me, were ignored or dismissed by their doctors and decided to do something about it.
Amber Fischer went viral on TikTok after posting a video about hirsutism, a condition in women that causes the growth of excess facial hair. A year after posting the video, Fischer has become a prominent voice on the app helping women manage their PCOS.
“The response was really amazing to me. … It was really cool, because I started to build relationships with people; they would ask me questions and then I could respond. … TikTok can be a very mean place, but I always come back to the fact that that’s the space where I can reach the most people,” Fischer says. While Fischer admitted that she is a shy person and was hesitant to start a TikTok account, she quickly realized how many people needed to hear what she was sharing.
Today, I am at peace with my diagnosis because I’ve found a community with which to share my struggle.
Similar to Fischer, Chiena Brie also experienced the same reaction after sharing her journey of trying to manage her PCOS. “I’m super grateful, and I love that I have the platform and I’m able to help people,” Brie says.
For Brie, it took a couple of visits to the doctor’s office to actually be diagnosed with PCOS. “When I did get diagnosed in 2017, that doctor was receptive to what I was going through, and he actually did tests, but at the same time, I feel like doctors don’t do enough to actually do the research to learn about [PCOS],” Brie says.
“I was slowly gaining weight, even though I was extremely active and I was working out all the time,” Brie says.
Brie’s sentiment is unfortunately the reality for many women diagnosed with PCOS, including myself. In my case, I worked out feverishly, but my symptoms never abated. It truly wasn’t until I watched videos posted by Fischer and Brie that I realized my fixation on weight was misguided.
Besides maintaining a healthy weight, trying to conceive can also be a struggle for people with PCOS. PCOS is one of the leading causes of infertility—but it’s often treated like it’s only an infertility issue. When I was first diagnosed, it felt like PCOS would only affect me if or when I tried to get pregnant. “PCOS is a lifelong issue. It affects you throughout your entire life cycle, and it affects you whether you decide that you want to have children or not,” Fischer says.
In Fischer’s case, major complications arose after she decided to get pregnant. She was diagnosed with endometrial cancer in her mid-20s and had to use IVF to conceive a child, something she wished her doctor had warned her about before trying to get pregnant.
“I do feel like health care is very patronizing. … When I was pregnant, the amount of times that I had to stand up for myself in a very uncomfortable way as a shy person was really frustrating,” Fischer says.
Now, women with PCOS might not even have access to the treatments they need to get pregnant. With the Supreme Court overturning Roe v. Wade, access to fertility treatments like IVF is under threat. Because the ruling used the term “unborn human beings,” state legislatures could decide that frozen embryos are human life, making IVF illegal.
Despite the Supreme Court’s failings, Brie and Fischer have managed to form not only a community for people with PCOS but also, more importantly, a safe space for people to share their own insecurities about their diagnosis.
But why did Brie, Fischer, myself, and many others all have such demoralizing experiences with our doctors? As it turns out, it might come down to the name.
One of the only signs doctors look for when diagnosing PCOS is cysts in the ovaries. “It’s a misnomer. … You don’t need ‘polycystic ovaries’ to make the diagnosis to begin with,” says Mary Jacobson, an OBGYN and Chief Medical Officer at Alpha Medical.
Jacobson further explains that because it takes time for people’s bodies to develop, it’s hard to diagnose PCOS in adolescents. “On average, it takes people about seven years to get diagnosed with PCOS, because it’s basically a diagnosis of exclusion,” Jacobson says. In fact, in a study focusing on women’s experiences being diagnosed with PCOS, “Many women reported delayed diagnosis and inadequate information.”
This doesn’t explain the dismissive treatment people with PCOS often receive from their doctors—especially if they are overweight.
“Unfortunately, there’s a lot of stigma and implicit bias that clinicians put on people who are overweight,” Jacobson says. Education is key, and specialists should not be the only doctors diagnosing PCOS. “Primary care providers should have a foundation of PCOS since it’s so common. … Fifty percent of the counties in the United States don’t even have an OBGYN,” Jacobson says.
It won’t be until PCOS becomes a mainstream issue that people will get the care they truly deserve. This is why nonprofit organizations beyond TikTok are so vital.
Ten years ago, Megan Stewart founded the PCOS Awareness Association. After experiencing PCOS symptoms as early as 9 years old, Stewart would not be diagnosed by an OBGYN until she was 16.
“There is a reason why they call it practicing medicine; they’re doing just that, they’re practicing, they don’t have the answers. … But that’s not a full-on excuse, because where they’re lacking is the patient care,” Stewart says.
Stewart’s own struggle opened her eyes to the unfortunate reality many women with PCOS face. It’s why Stewart’s nonprofit focuses on four pillars: support, resources, information, and research.
Stewart’s overriding message for women struggling with PCOS is for them to know that they are not alone. “Do your own research, be your own advocate. … If you feel it in your heart and your soul that you’re not hearing what you need to hear from your medical professional, you have every right to take your money elsewhere and hear from a medical professional that can help you,” Stewart said.
After I walked out of that gynecologist’s office six years ago, I had more questions than answers. Today, I am at peace with my diagnosis because I’ve found a community with which to share my struggle. In the future, I hope patients like me will receive the responsible care they deserve when first diagnosed. Until then, we have TikTok.
Emma Furry lives in Pittsburgh where she is the production assistant on the Confluence, the daily public affairs show on 90.5 WESA. She is currently pursuing a graduate degree in journalism through NYU’s American Journalism Master’s Program.