If you've never heard of Polycystic Ovarian Syndrome (PCOS), consider yourself lucky. The condition, though not life threatening, is painful and annoying, to say the least. In my years since the original diagnosis, I've heard my fair share of opinions on the subject and I can honestly say, there's some things women with PCOS are tired of hearing and explaining. After all, I'm proof.
While the Mayo Clinic describes PCOS as "a common endocrine system disorder among women of reproductive age," I've lived with the chronic ovarian pain as long as I can remember. Symptoms include "enlarged ovaries that contain small collections of fluid — called follicles — located in each ovary as seen during an ultrasound exam, infrequent or prolonged menstrual periods, excess hair growth, acne, obesity, and infrequent or absent menstruation."
My experience was mostly that; horrendous menstrual cramping and all the listed side effects described. I was afraid to go to the doctor for answers. Paranoid, I feared the worst; cancer or something that wouldn't be easily fixed with medication or even surgery. I felt this way because it was that painful. When I finally made the appointment, my doctor described PCOS, explained that the condition's exact cause is unknown, and how it's been a factor in my every day health as well as my journey of trying to conceive. I look back on that day with a little regret, partially because I waited so long to get checked out and also because while PCOS is super annoying, there are things to aid in my comfort I neglected. Basically, I suffered for too long and when I didn't have to.
Now that I'm grown with two children, I recognize how difficult this condition is to manage, even after all this time. There's things happening inside my body not seen on the outside and, as a result, the list of exhausting statements and questions I've heard over the years has only accumulated. So, with that in mind, here are a few things those of us living with PCOS are sick and tired of hearing (so maybe you'll think twice before ever saying them again). You're welcome in advance.
"When Was Your Last Period?"
Not that it's anyone's beeswax except my doctor's, but it was last Thursday. Oh, it also started again, about an hour ago and it will probably creep up on me in another week. Living with this kind of thing means not always knowing when the last cycle started and/or ended because it feels continuous. Because it is continuous. PCOS is like a really annoying neighbor that just won't leave.
"Doesn't Your Medicine Make You Gain Weight?"
Maybe. It's not like I can just stop taking the doctor-prescribed pills that help regulate menstrual cycles because I'm up a pant-size so back off, will ya?
"Can You Still Have Children?"
Some questions should never, ever be asked. Like ever. Anything that has to do with possible infertility is probably near the top of that list. Sadly, I've been asked this question many times — specifically when my partner and I were actively trying to have a baby with no results.
How do you even answer this kind of brash question? It's not like I knew for sure if I'd ever have the ability to experience pregnancy again. Having PCOS makes it really difficult to conceive but it's not impossible. So, how about we pretend this question never happened?
"Why Don't You Have Your Ovaries Removed?"
Excuse me? Why don't you have your ovaries removed?
If you're a very close family friend or concerned (and again, close) family member and/or my doctor, technically it's a fair question. I did have my right ovary removed to ease the pain of PCOS but it didn't come without hormonal consequence and my left ovary is just as painful. Having both removed would be the equivalent of sending my 34-year-old self into pre-menopause and, uh, I don't think so. For now, I'll live with the pain, thanks.
"You Should Try Birth Control. It Helped My Friend."
Well, good for them! As a matter of fact, a lot of us with PCOS have either already been on birth control or it didn't work as hoped so we dropped it. I'm of the latter group because my pain and cysts were too severe and after taking those pills for years, I never felt relief or regularity. That, coupled with trying to get pregnant a few years back? Nope. Different strokes for different folks, my friends.
"How Are You Still Breaking Out Like A Teenager?"
You know what? It's not my fault. PCOS causes hormones to rage, hair to sprout in weird places, and breakouts whenever the hell my body feels like it. I have zero control over any of it except in becoming an expert in using concealer so how about we stop reminding me of my infinite puberty.
"It Can't Be That Bad. You're Alive."
It's true I am still alive. However, PCOS will make sure my life is painful. Much like any other chronic disease, like endometriosis or Crohn's Disease, it's sole goal is to cause cysts just uncomfortable enough to keep me from enjoying normal activities like, you know, sitting, standing, or simply being. I've had the cysts removed a number of times but like those trick birthday candles that don't blow out, they grow back and will always grow back. It's part of the vile backbone of having a condition like this.
Some days, I might feel fine (maybe even great), but other days I'm lying in the worst pain since childbirth. So, please don't try to "cheer me up" by telling me it can't be "that bad because [fill in the blank]." It's cruel and insensitive to think I'm otherwise ungrateful for being alive just because I'm hurting inside.
Having PCOS is frustrating enough in and of itself. Having people say all of the above, repeatedly, is just plain unnecessary. The next time you're wondering what someone living with this condition is going through, put yourself in their shoes, err, ovaries. A little empathy might mean the difference between offering support and revealing ignorance and, trust me, it helps more than you might think.