Polycystic Ovarian Syndrome (PCOS) is an endocrine disorder characterized by the presence of male-like hormone levels and cysts on the ovaries. This syndrome has side-effects that affect those with PCOS in a multitude of ways. Most women's symptoms don't subside until menopause, and even then, there could still be lasting consequences. PCOS is more common than you might think and decreases the quality of life for many who have it. As someone who was only diagnosed three years ago at age 17, I still have a lot to learn, but I'm thankful that I have at least been diagnosed, as so many of my "cysters" have not been as lucky.
I reached out to some other women with PCOS and developed this list of nine things we NEED you to know.
1. We know that we're hairy
You don't have to tell us when we have a long chin hair. In all honesty, we probably plucked it yesterday. It's called hirsutism and is a side effect of PCOS. We know we're hairy and you telling us that we should've plucked before leaving this morning doesn't make us feel any better. If your friend is like me, they might have given up on trying to be hairless. It's a stupid social construct anyway.
2. We're tired of you asking when we will have kids
WE MIGHT NOT! That's just the harsh reality. Many women with PCOS struggle immensely to conceive. Will we adopt someday? Maybe, but we might want to try the "natural way" first.
If you could stop defining a woman by her ability to reproduce, that'd be great. Some of us just don't want kids, and that's OK, too.
3. Our weight is none of your business
Maybe our doctor's business, but not yours. Many women with PCOS struggle to lose weight but gain weight like there's no tomorrow! No, we can't just exercise it off, that will only get us so far. Due to our hormone imbalances, one of the best ways for us to lose weight is to cut sugars and carbs out of our diet. You try not eating pasta and bread! Not as easy as you might think.
4. We're not lazy
Okay, maybe we're a bit lazy. But mostly, we're fatigued. Hormone imbalances, cysts, and all the side effects that come with PCOS can wear on our productivity. And besides that, hormones really do play with your fatigue levels!
5. Periods are a variable topic throughout our community
Some of us have really intense and horrible periods that contribute to horrible mood swings, intense pain, and crazy side-effects. But, we could also have a lack of periods or lengthy periods with no pain, just constant bleeding. I, for example, had two periods when I was 16 (TWO TOTAL), and then three months later when I was 17, I had a period that lasted three weeks. Our experiences are variable, but most likely we have some sort of issue with periods.
6. We still have acne throughout adulthood
Stop telling us to just wash our faces, do you think we haven't tried that?! Just as you likely had acne throughout puberty when your hormones were wacky, we have acne throughout our entire lives because our hormones are always wacky. Essentially we just go through 30+ years in puberty.
7. We likely have co-morbid health issues
Besides the very specific side-effects PCOS can have on us, it can also come with comorbid health issues. It is well-known that many women with PCOS have endometriosis, which is when tissue that usually grows inside your uterus grows outside of it somewhere in your body and can result in intense pain during periods and throughout your life. But did you know there are also links of comorbidity with IBS, anxiety, depression, hypertension, diabetes, and cancer? Not only does it seriously affect our lives right now, but it can have some serious consequences down the road.
8. Birth control does not mean we are having sex
This is especially important for younger women with PCOS. There's a stigma that being on birth control means that a woman is sexually active. But women's birth control is not the same as a condom! There are many benefits to taking birth control, such as less painful periods, hormonal balance, and reduction of PCOS side-effects. For women without hormonal issues, birth control often leads to weight gain, acne, and depression, but for many with PCOS, it can do the opposite!
We need you to know this because yourself or someone that you know likely has PCOS. Sadly, many of them don't know it. PCOS has a spectrum of ways that it affects our lives, but without a diagnosis, many will think that they are just lazy, overweight, or hairy for no reason except their own shortcomings. But we need them and you to know that our fellow cysters are not alone! I traveled to India, and within minutes of talking about PCOS, I met four girls that were also diagnosed! PCOS is hard, but without a diagnosis, you'll never know how to treat it and you'll never find our strong community of cysters.
So treat your friends with PCOS with kindness, because at any point, you have no idea how many adverse symptoms they're experiencing.
And if you think you might have PCOS, reach out to your gynecologist or endocrinologist.