“So, when are you going to have kids?” Every time I hear this question, my heart jumps into my throat. It’s usually someone’s grandma, or a friend who had a bit too many mimosas at the baby shower. Regardless, I never know how to respond. Saying, “I don’t know, maybe never?” seems a bit too bleak for the occasion, as does, “Well you see, I probably can’t.” So instead I just smile, swallow the sinking feeling in my gut, take a deep breath, and go, “Oh who knows, hopefully someday!” with a polite laugh and another sip of my mimosa.

I was diagnosed with Polycystic Ovarian Syndrome (PCOS) in January of this year, after a year of unsuccessfully trying to conceive. It was like my whole world was turned sideways – like many women, PCOS was something I had only heard whisperings about, and only ever in reference to infertility. Usually, it was the death knell I heard when someone was criticizing a uterus owner who couldn’t get pregnant. “Well you see, she has PCOS.” Given the lack of contact with PCOS information in the past, I had myself fully convinced that this was some rare occurrence, some biological tragedy, and that was why no one ever talked about it. Then I looked up the numbers, the Mayo Clinic reported in 2023 that 15% of people with ovaries have PCOS, and it is the leading cause of infertility. Then I heard about the other symptoms that go along with PCOS that anyone could recognize I have always had: acne, migraines, and irregular periods. The more I read and learned about PCOS, the more confused I was and the more questions I had. Why did it take me 22 years of life for anyone to notice this? Why, with it being so common, is it something no one talks about? What are the consequences to our mental health of us not recognizing PCOS?

Why does no one talk about PCOS?

So, why did it take me until 22 to be diagnosed with PCOS and, when I was, no one (including myself) ever wanted to talk about it? PCOS covers many areas we do not wish to talk about because it is, “uncomfortable,” or, “embarrassing.” It is no secret – women’s health is criminally undervalued in our culture and throughout the world. The World Health Organization has recently reported that, although women are living longer, we are living more of our lives in poor health. Women are less likely to see doctors and, when they do, less likely for their concerns to be taken seriously.

Looking at PCOS specifically – 1 in 10 women go untreated because they are not aware they have it. This might not sound like a big deal to some, but it can be very dangerous if left untreated. PCOS is linked to high blood sugar and, if left alone, can lead to Type II diabetes. Although I showed many symptoms of PCOS, none of my doctors thought to test me for it. When I finally found a doctor who would listen to my concerns and tested me, she found my A1C levels and insulin levels were much higher than they should have been. Luckily, she caught it soon enough and aided in regulating my insulin levels. However, if I would not have found a doctor who listened to my concerns, I would have been one of the 10% of those with PCOS who are not being treated and suffering the physical and mental side effects without any help.

When people have a diagnosis that is considered a, “women’s health,” diagnosis, 58% report that they are too embarrassed to talk about it. That means when we are having a health symptom which is directly related to the diagnosis, we don’t bring it up because we and society have deemed anything having to do with reproductive parts as embarrassing and gross to discuss. Personally, even though I have PCOS, I am guilty of perpetuating the myth that this should be kept a dirty little secret. When I can’t eat too many carbohydrates or sweets at a party, I usually say I’m not hungry or don’t have a sweet tooth- when the truth is I’m too embarrassed to tell them it’s because of PCOS. This reinforces the stereotype that a women’s health diagnosis shouldn’t be talked about.

Sizeism and PCOS

Another stigma experienced is that the majority of women who have PCOS are overweight or obese (a recent study from Barber estimates that this is around 88%). Even though body positivity is finally gaining traction, there is still an overwhelming bias against those in bigger bodies. The assumption is made that they are lazy, weak-willed, unsuccessful, unintelligent, lack self-discipline, have poor willpower, and are noncompliant with weight-loss treatment. These stereotypes are a form of prejudice, and it can be absolutely soul crushing. Imagine all the things you have accomplished, all the people you have helped, all the struggles you have overcome, being reduced to nothing because you are in a bigger body due to a medical diagnosis that you did not cause.

These stereotypes can lead to shame and guilt. These feelings originate in the fact that because of this disorder, no matter how hard they worked out or how healthy they ate, there was weight they could not lose and their body usually remained looking the same. Society did not take into account how healthy these people were living, but instead, based on how their bodies looked, judged these people to be less than. Many people with PCOS, myself included, were gaslit about our bodies. When we can overcome the shame of even mentioning PCOS, explaining to others that the changes in our body were due to PCOS, we are told that that it is simply an excuse and that we just need to, “work harder,” to lose weight.

PCOS and Infertility

There is another major area where guilt and shame is focused – infertility. 70-80% of women with PCOS experience infertility, bringing its own shame, coined as, “infertility stigma.” This is when people are treated differently due to their infertility. It comes in the form of comments like, “You can’t be a REAL woman if you never get pregnant,” as well in the, “As soon as you stop worrying about it, that’s when you’ll get pregnant.” It can even be found in the dreaded, “So, when are you going to have kids?” Studies have shown that women who are infertile suffer from this stigma more, and that infertile women are more prone to emotional and psychological ill effects.

Coming from someone who has experienced infertility stigma, there is nothing more isolating. When I was told by my doctor that I may not be able to get pregnant, I felt my future was snatched away from me. My plan was interrupted and having never known anyone who was infertile or adopted a child, I felt lost. During this time I was desperate to reach out, to have support. Huge shout out to my parents and husband, who held this space for me. However, every other friend I reached out to had a similar response when I brought up my infertility – an uncomfortable laugh and a quick assurance. The more I got this response, the more I internalized that no one wanted to listen, and that I was a “problem” to those around me. So, eventually, I just stopped talking about it, even to the people who were more than willing to listen.

From a mental health perspective I can tell you, this leads to a boiling and simmering inside that eventually explodes. I exploded the week my friend went into labor, I could not stop crying and mourning what could have been. Luckily that support system mentioned earlier was there to remind me that my feelings mattered. However, I can’t help but be concerned for those with PCOS who don’t have this support system. Those that are led to believe their infertility is something to be ashamed of putting themselves into isolation, shoving all the scared feeling into a corner.

PCOS and Mental Health

How does the shame of having to keep something a secret affect our mental health? As one can expect, not great. Shame can have disastrous impacts – being linked to the development and worsening of both anxiety and depression. Shame often co-exists with isolation, making you feel trapped and powerless. Both are particularly dangerous for one’s mental, cognitive, and physical health. Isolation has been associated with depression, poor sleep quality, impaired executive function, accelerated cognitive decline, poor cardiovascular function and impaired immunity at every stage of life.

Society’s response to PCOS already lends itself to a host of mental health concerns. As if that was not enough, PCOS also has biological links to anxiety and depression. Let’s start with our hormone which rules our anxiety response – cortisol. Cortisol is made in the hypothalamic-pituitary-adrenal (HPA) axis. When a fight or flight response is activated, cortisol comes rushing into our body and gets us prepared to fight or flee. When we are safe, the cortisol dissipates, waiting for us to again be aroused. In those with PCOS, this system does not work as it should. Our HPA axis is over active. So, when we enter fight or flight mode or become stressed, our body makes way more cortisol than we need, which makes us more stressed than others. Also, because there is more, it takes longer for the cortisol to dissipate, meaning we experience that stressful feeling for longer than others.

Where do we go from here?

When it comes to PCOS, first line help should come from a gynecologist or other specialist in the area. A diagnosis and specialist can provide support in regulating your cycle, decrease the risk of developing Type II diabetes or other negative side effects of PCOS.

The anxiety, depression, shame, and isolation are all things which a counselor needs to be seen about as they can severely hamper one’s quality of life. A counselor can help you break down cultural messages you have been receiving as well as help you identify and sort through the multitude of emotions (including guilt and shame) that you may have surrounding your diagnosis. We can help you challenge your anxious thoughts and make a plan for coping with a life condition.

In my office, if you came in with concerns regarding PCOS, let’s work towards dismantling the shame society has told us we should feel about having this disorder and reimagine what our lives can look like. This can be done through many different treatment modalities. Personally, I subscribe to both Narrative and Social Constructivist Theory. Even though we do have PCOS, how can our lives be fulfilling? I think we often lose hope when we get this diagnosis, falling into the trap that just because our future looks different means it looks worse. I have experienced those emotions, and if I am being honest sometimes I still do. However, as both a counselor and someone with PCOS, I can also assure you that our lives still hold tremendous meaning and future despite what may be happening in our ovaries.