About a year ago, after many trips to many different doctors, I was diagnosed with Polycystic Ovary Syndrome, or PCOS. In a nutshell, Polycystic Ovary Syndrome is a condition where your ovaries are enlarged and are more prone to develop cysts, which can rupture. It's actually pretty common with women of reproductive age, but often goes undiagnosed because the symptoms are embarrassing and/or non-life threatening. Women who suffer from PCOS are pretty quiet about how the syndrome affects them, but I want to shed some light on the things that we PCOS warriors wish other people knew.
1. PCOS affects everyone differently.
Some women with PCOS have hormonal acne. Others have clear skin. Some women have excess hair growth, called hirsutism, while others suffer from hair loss. It's easy to make assumptions about women with PCOS but it isn't that simple. Women with PCOS do not all exhibit the same symptoms, although we all have the same underlying issue.
2. Just because we have PCOS does not mean that we are infertile.
A big misconception about Polycystic Ovary Syndrome is that we cannot have children. There are plenty of women with PCOS who have no issue conceiving children and go on to have healthy babies. For some women, having a baby actually reduces the effects of PCOS.
3. However, conceiving is a struggle for a lot of women with PCOS.
PCOS primarily affects a woman's reproductive system. Unsurprisingly, a lot of women have to undergo expensive and painful fertility treatments to conceive a child. A lot of women go on special medication to try and conceive. Some women spend years trying to get pregnant, to no avail. Women with PCOS are also at an increased risk of having a miscarriage. Pregnancy is a sensitive subject for a lot of women with PCOS.
4. A lot of us struggle to lose weight, so please don’t tell us that it “isn’t that hard.”
Sure, a healthy diet and regular exercise do help with weight loss for most people. But it isn't always that easy, especially for women with PCOS. PCOS can lead to issues with your body's production and intake of glucose, which can eventually lead to a high risk of type-2 diabetes and many other disorders. Because our body's hormones are out of whack, it's not always easy for us to lose weight. Many of us try very hard to lose weight with minimal results.
5. Just because you cannot physically see PCOS doesn’t mean that it isn’t painful.
A rupturing cyst feels similar to being stabbed in the abdomen. On the two occasions that I have had a cyst rupture, I passed out from the pain. Women with PCOS often experience more painful ovulation and stronger cramps. Cysts forming are also painful, especially if they're large. PCOS is essentially invisible but it is very real and very painful.
6. PCOS is often a lifelong, untreatable condition.
There is no "cure" for PCOS. Doctors recommend losing weight to help with symptoms, but like I said above— it isn't always that simple for us. The one thing that helps us the most is the thing that is so difficult to do. Other women go on the birth control pill to regulate their hormones, and although this is very helpful for a lot of women, it isn't a cure. As a result, many women suffer from symptoms of PCOS until menopause.
7. We may act strong, but PCOS gets us down sometimes. Please be patient.
There are a lot of things that I am insecure about because of PCOS. I pluck my facial hair, conceal my acne and still spend all day wondering if anyone is noticing the things I'm trying so hard to hide. I worry all the time about not being able to have children some day. Whenever I feel a particularly painful cramp, I wonder if I'm going to have a ruptured cyst. PCOS warriors go through a lot, so please be patient and kind. What we need from our loved ones is support while we keep fighting our battle.