10 Lies About Polycystic Ovarian Syndrome
It’s September, which means the kids are back to school, pumpkin patches (and Pumpkin Spice everything) are popping up, the weather is (hopefully) cooler… and PCOS Awareness Month.
When I was first diagnosed with polycystic ovarian syndrome (PCOS) in 2012 after a decade of asking to be tested for it (I bet you know how that goes!), there wasn’t a whole lot of information about it. Even family members and friends who worked in the medical field hadn’t heard of it. Which is wild, considering current research shows one in 10 women* (see number 10) in the U.S. have a PCOS diagnosis, and many more are undiagnosed, leading to an estimated one in eight who actually live with PCOS.
Eleven years later, there’s definitely a lot more awareness of PCOS, but with increased awareness and the rise of platforms where anyone can say anything, a lot of the information out there is… incorrect. So today, let’s bust 10 of the most common myths I’ve seen or heard about PCOS.
Myth #1: PCOS is a fertility disorder.
Truth: PCOS is an endocrine disorder that can cause reproductive, metabolic, and psychological challenges. I believe the fertility/reproductive disorder myth is so pervasive for three reasons: PCOS can affect fertility, the standard initial treatment is birth control, and many people are either not diagnosed until they have trouble conceiving, and/or are not treated until they want to conceive. I’ll spare you my soapbox about medical research, treatment, and “women’s issues.”
Myth #2: You can’t get pregnant or carry to term with PCOS.
Truth: Often, one of the first things people hear after receiving a diagnosis is how difficult or impossible it will be for them to get pregnant and/or give birth. If that’s something you want, or want the option to want, that can be devastating to hear, and it’s also not true. It is possible conceiving will be more difficult, and research does show our likelihood of miscarriage and/or other complications is higher, but if getting pregnant is something you want in your life — it’s really important to know PCOS doesn’t automatically mean it’s not possible. (And if getting pregnant is something you don’t want in your life, a PCOS diagnosis doesn’t mean you can throw away your contraceptive method of choice!)
Myth #3: Birth control can “fix” it.
Truth: Birth control can mask some of the symptoms of PCOS, for some people. It does not heal, “fix,” or “cure” the underlying issues, and for many of us, birth control can exacerbate the mental health challenges that can come with a hormone imbalance.
Myth #4: Low carb diets will “cure” PCOS.
Truth: There is no cure and no standard treatment that works even most of the time for most people. In fact, for people diagnosed with PCOS, limited research shows a correlating (not causational) higher prevalence of disordered eating (likely due to weight gain being a symptom for many people, and cyclic dieting on the advice of doctors and society at-large). This means low carb diets may help with weight loss in the short term, but that doesn’t mean it is addressing root issues, and may also be more harmful than helpful, as dieting can interact with a history of disordered eating and ultimately become unsustainable or lead to other problems.
Myth #5: Losing weight will “fix” PCOS.
Truth: As above, there is no cure. Weight gain is not the cause, and losing weight will not change the diagnosis or decrease other symptoms. Additionally, many folks with PCOS have non-diabetic insulin resistance, which can make losing weight even more difficult than it is for someone without PCOS, so telling them to lose weight to fix the issue causing the weight gain is… a little backwards.
Myth #6: PCOS is caused by something you did or didn’t do.
Truth: Researchers don’t know what causes PCOS, though it is currently believed to be a combination of factors including genetics, insulin resistance, and potentially trauma history. There is a lot of misinformation on the internet and in doctors offices claiming that gaining weight can cause PCOS, or losing weight can fix it (see myth #5). To that, I say: After a decade of asking to be tested, I was only diagnosed after I lost almost half my body weight. That is — losing that much weight not only did not “cure” my PCOS, it put me in a body a similar size as when I first started asking about the diagnosis. Which means weight did not play a role in my symptoms or diagnosis (beyond someone finally taking me seriously, but that was compounded by my diagnosis coming after a miscarriage. See myth #1 about not diagnosing or treating until there are fertility-related issues.)
Myth #7: The only PCOS symptoms are infertility and weight gain.
Truth: These are the symptoms society tends to care about most, but they are nowhere near the only symptoms, and often not even the most distressing symptoms for those of us who live with PCOS. Other symptoms can include irregular menstrual cycles (this can show up as more frequent cycles, cycles that disappear, heavier bleeding, lots of clots, etc). Not everyone with PCOS experiences these types of menstrual issues, but they are not uncommon. Other common symptoms include fatigue (SO TIRED ALL THE TIME), sleep problems (insomnia, poor sleep, sleep apnea), hair changes (“male pattern baldness” and hirsutism, where hair grows on the face, chin, or other parts of the body where hair is commonly associated with “male hair”), acne, darkening of the skin (particularly on the neck, groin, and under breasts), skin tags, pelvic pain (both with and without menstruation), hormonal headaches and increased prevalence of migraine, mood changes (PCOS can increase the likelihood of mood swings, depression, and anxiety, not only during the pre-menstrual phase). To name a few.
Myth #8: PCOS is #NoBigDeal.
Truth: From the symptoms above, you can probably already tell PCOS can be a really big deal and impact nearly every area of your life. But there’s more: research shows the risk of heart attack is four to seven times higher for people with PCOS than in people without PCOS. People with PCOS are at a greater risk of having high blood pressure as well as higher levels of LDL (“bad”) cholesterol and low levels of HDL (“good”) cholesterol; they are at higher risk of sleep apnea, anxiety, depression, disordered eating, or “female” cancers; and more than 50% of folks with PCOS will develop diabetes or pre-diabetes before the age of 40. And while there is a societal misunderstanding that weight causes many of those conditions, that’s also not true, and often has more to do with the full system impact of an endocrine disorder with few treatment options than it does with someone’s numbers on the scale.
Myth #9: PCOS can be diagnosed by looking at you, or taking a verbal medical history.
Truth: This one makes me really angry. Being diagnosed with a condition that has few treatment options is hard enough. Being diagnosed with that condition when you haven’t even been properly tested — because someone thought you “looked like” you had it — leads to confusion, and means other conditions may go undiagnosed and untreated. An accurate diagnosis does take verbal medical history into account, of course, but also includes at least two of the three: chronic lack of ovulation (via testing), chronic high androgen levels (via blood test, not just symptoms), and/or multiple “cysts” on one or both ovaries (via ultrasound). Having at least two of these three symptoms may lead to a PCOS diagnosis. As you can see, these aren’t symptoms someone can diagnose from looking at you.
Myth #10: PCOS only affects women.
Truth: PCOS affects people assigned female at birth. The majority of research right now uses the term “women” which is why I used women* in the second paragraph, but nonbinary folks and trans men can also live with PCOS. Some researchers also use the terms “people with ovaries of reproductive age” or “people with female reproductive systems” but those phrases aren’t accurate either, as you can have a hysterectomy or be post-menopausal, and still have PCOS. As we learned in truth #1, PCOS is a hormonal disorder, not a reproductive or fertility disorder.
The human body is complex, and unfortunately, researchers and medical professionals don’t know everything about PCOS, and trying to find answers that don’t contradict each other can be like trying to find a needle in a cornfield.
Getty image by Maria Ponomariova