In the summer of 2007 I had just turned fifteen years old and was starting to notice that my periods had not yet become regular. Irregular periods had been an issue for me since I started menstruating, but my primary care doctor told me that it would sort itself out. My parents started getting concerned when I was fourteen and that hadn’t happened yet. Fortunately, Boston has one of the best adolescent gynecology programs in the world, and I was taken immediately to an adolescent gynecologist. By the time school started in the fall I was diagnosed with PCOS, or Poly-Cystic Ovarian Syndrome, which you can read about here. To be perfectly honest, my life has been altered drastically since I found out I had PCOS, and it’s been rather difficult for the past four years. Here are five ways my life has changed since I learned that I have PCOS:
1) I have to really watch what I eat.
I really, really like food, and our dining hall is number 4 on the Princeton Review’s list, which means that I’m often tempted by a lot of the meals here. I’m also a believer of the “main course then dessert” set up; no meal is complete without cake or ice cream. Even so, I’ve always tried to watch portions: a bowl of yogurt with fruit for breakfast, usually a sandwich (without mayo) for lunch, a protein, starch and vegetable for dinner. And maybe a piece of cake, or some soft serve for dessert after dinner. I’m not generally a glutton, and I practice moderation. For some reason, though, if I ever try snacking between meals, or if I have too much for dessert, or just another helping for dinner, I find my weight skyrocketing up. I gained something around 20 pounds last year, which isn’t normal for the amount of food I ate. So I find that I have to be careful: no processed sugars, no starches, just lots of protein, fruits, and vegetables. This diet is kind of hard at school, at least for me, especially when I’m up late studying. I know that it wasn’t always like this: before I reached puberty I was an active kid who yeah, liked to eat, but wasn’t at all fat. The moment I started menstruating I instantly gained something like forty to sixty pounds within a year, and never lost it. Luckily, I grew taller, but it’s something I’ve had to live with for a while now. Losing weight is hard for me, even with diet and exercise. The only way I’ve been able to lose weight is not just by cutting back, but by exercising regularly and keeping a strict diet. It’s hard, especially when the dining hall just got a new soft serve machine. I’m definitely not at any sort of ideal weight right now, and I am daunted even by the idea of trying to lose it because I know it will be so hard for me.
2) I feel sick a lot of the time.
Due to PCOS, I’m taking a pretty intense drug cocktail, which includes metformin (a diabetes medication for insulin production), birth control (estrogen, the main way to regulate PCOS), doxycycline (for the awful acne that the hormone imbalance gives me), and fluoxetine (for related depression). My first medication was the birth control, and when I started taking it I immediately felt really ill. I would have constant nausea and stomach pains – I was barely able to eat anything (not that that helped my weight situation at all). My doctor switched the dose to something lower, but that hasn’t exactly helped with the PCOS as well as the higher dose did. My second medication explicitly for the PCOS was metformin, which was a bit of a blessing, because I lost around twenty pounds in the following few months, and it’s kept me from becoming a giant butterball while at school. The problem, however, was that I had to take it twice a day, right after a meal, because if I didn’t I would feel really sick. It turned out that I felt really sick anyway, and if I ever took the metformin without eating I would have to excuse myself from class and go throw up. I finally took this issue to my doctor, who then prescribed me a large dose of the extended metformin, which lasts for twenty-four hours, so you only have to take it once a day. This has helped quite a bit, and while I still do frequently feel nauseated, it’s never as bad as it was before. I keep a pack of ginger near my bed for emergencies, though.
3) I have to shave a lot more than usual.
While this one certainly isn’t as bad as the others, it’s still a problem. The fact of it is that women with PCOS are generally a lot hairier than women without, and that’s because of a high level of testosterone in women with PCOS. I find that it takes me a really long time to shave, and the hair often grows back much faster than normal. There’s also hair in places where hair shouldn’t really be: my stomach, my chest, my back. Luckily for me it’s not that bad, and it’s just light fuzz, but I still find it embarrassing. For a lot of women with PCOS it’s a lot worse, and I seem to have gotten off easy. Fortunately there’s medication that doctors can prescribe to limit hair growth in unwanted places, but it’s still a lot of constant maintenance.
4) I have to monitor my cyst every six months.
I don’t have the cysts that are talked about in poly-cystic ovarian syndrome (it’s not a necessary criteria for a woman to be diagnosed with PCOS), but I do have a dermoid cyst (which, while correlated with PCOS, is not necessarily related), which is a lot meaner than some other types of cysts. A dermoid cyst is a teratoma, and any of you who take biology or know medicine or saw that one episode of Grey’s Anatomy is cringing right now. Basically a formation of mutated stem cells, a teratoma is gross, it’s nasty, and it can get really, really big. There have been cases where a dermoid cyst can grow up to seventeen centimeters in diameter and cause a distended belly that looks like a pregnancy. Luckily mine is only a minute five centimeters in diameter, but every six months I have to go to the hospital and get an ultrasound to make sure that it doesn’t grow bigger. While the cyst is classified as benign, that just means it isn’t cancer. If a dermoid cyst grows too big it can inhibit organ function and cause other serious problems. The flipside is that removal is not simple: sometimes an ovary has to be taken out along with the cyst.
5) I’m already looking into fertility treatments.
The sad truth about PCOS is that for a lot of women, fertility becomes a problem. It’s very hard for women afflicted with PCOS to get pregnant, and if they do, they often miscarry. I didn’t start thinking about fertility or babies until this year, and I wish I hadn’t thought of it in the first place. I know that I’ll have to take fertility treatments, which consists of a lot of painful shots, or even have to use IVF. And the fact of the matter is, I’ll probably never have children. My body simply is not stable enough to create or support a fetus. It’s kind of a devastating thought, to be honest, and it hasn’t really sunk in yet. I’m nineteen years old and I shouldn’t be looking at websites about egg donation or fertility treatments. I shouldn’t even be thinking about having children. But every time I take my medication, I am reminded that I have this condition, and that it will affect me for the rest of my life.
I know that a lot of women in college struggle with PCOS, and I’m writing this article to show that you are not alone. It’s difficult, really difficult, to live with PCOS. It’s a daily struggle that affects all aspects of a woman’s life: fertility, body image, mental stability, general health. It’s also something that never goes away. But it is manageable. Don’t lose hope. After four years, countless medications, and constantly fluctuating weight, I’ve found a way to be comfortable in my own body. You just have to realize that you can control this, you can fight it, and it doesn’t have to take over your life. Yes, my life has changed, but I’m not sure it hasn’t been for the better. I’m now a lot more conscious about things like healthy eating and having regular check-ups with my gynecologist. I realize that things like my depression, or my weight, or the fact that I have to shave all the time are not my fault, and that even though it’s hard, I’ve become strong enough to manage it all. I feel that having PCOS is now a large part of my identity, and I wouldn’t want to give that part up, not even for babies.