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Appearances Can Be Deceiving

Whenever I tell people, especially health care professionals, that I have PCOS (polycystic ovary syndrome), they’re always surprised. PCOS is a condition that can affect your hormone levels, menstrual periods, and ovaries.1 Signs and symptoms are different for everyone, and range from pelvic pain and fatigue2 to excess facial and body hair and severe acne or even male-patterned baldness.3 It’s also estimated that as many as four out of five women with PCOS are obese 4 and that more than half of all women with PCOS will develop type 2 diabetes by age 40.5 I am very fortunate to not have excess facial and body hair, severe acne, or male-patterned baldness. I also weigh a healthy weight and don’t have diabetes. But this means that I don’t look like the average woman with PCOS.

That shouldn’t be something that I need to point out; just because I look different than you’d expect doesn’t mean that it’s impossible for me to have PCOS. Just because my symptoms aren’t visible anymore doesn’t mean that I don’t have PCOS. But I’ve had doctors think they’ve grabbed the wrong patient’s file when they see me, and I’ve had doctors act surprised when they hear my diagnosis. It can be frustrating, but I also know that I was very lucky compared to most; I was diagnosed when I was 16, and it only took my doctors a few months to figure things out. My pediatrician fortunately knew a lot about PCOS and thought that some of my symptoms might point to it, so she referred me to a pediatric gynecologist.

From what I’ve heard, this is highly unusual. Many women don’t find out they have PCOS until they are trying to get pregnant, and sometimes that knowledge only comes after years of wrong diagnoses and struggles with medications and fertility. Unfortunately, PCOS is not as well-known as it should be, and there’s no definitive test to diagnose it, so it’s pretty common for a diagnosis to take a long time. I was very fortunate that my diagnosis only took a few months and that it only took a few years to resolve most of my immediate symptoms, but there’s no way of knowing whether or not I’m going to have PCOS-related issues in the future, which is a scary prospect. PCOS is an incredibly complex disorder with many potential complications.

To name a few: Women with PCOS have a higher risk of developing insulin resistance, diabetes, high cholesterol, heart disease, and stroke throughout our lifetimes. We’re also possibly at a higher risk of developing endometrial cancer.6 Having PCOS can make it tough to get pregnant, and it can also cause pregnancy complications like preeclampsia, pregnancy-induced hypertension, gestational diabetes, premature birth, or miscarriage.7 As if these physical symptoms aren’t enough, we’re also more likely to experience anxiety and depression. As many as 50% of women with PCOS report being depressed, compared to around 19% of women without PCOS.8 The exact reasoning isn’t known, but PCOS can cause stress and inflammation, both of which are associated with high levels of cortisol, a stress hormone.9

Oh yeah, and there’s no cure for PCOS, which makes everything even trickier. There are some treatments that can help most people manage their symptoms, but there’s no cure. Different things work for different people, but my doctors and I have found what works for me, and luckily, it’s pretty simple. I see my gynecologist regularly, and this, along with lifestyle choices like eating a (mostly) healthy diet, exercising regularly, and maintaining a healthy weight, helps me monitor my health so I can easily know if something is wrong. There’s still no way of knowing whether or not I’ll have any issues in the future, but I know that I’m doing all I can right now, and that’s good enough for me.

If you’re reading this and think that you or someone you know may have PCOS, talk to your doctor. It’s not as well-known a disease as it should be, and has many vague symptoms, so it can be hard to diagnose. If you, like many people I know, have already come to your doctor with PCOS symptoms and have been brushed off, don’t feel weird about standing up for yourself and getting a second opinion from a different doctor. You know your body best, and if you feel something is off, you’re probably right.