Tuesday, April 29, 2014

What It's Like to Be a Cyster

Five years ago this week, I was sitting in tenth grade geometry, pretending to learn about something I’m sure had to with angles and shapes. I say pretending because I was doubled over my desk in pain. So much so that I had reservations about being able to make it to the nurse’s office when the bell rang. How humiliating would it be if I had to crawl? However, I made it there with most of my dignity intact and laid on a cot for a couple hours while the women in the office that day murmured behind my back about a burst appendix.
Fast forward to that night and I was in the hospital because the doctors weren’t quite sure what was wrong with me. Yeah, that’s a statement that should send a flood of confidence through you, when the medical professionals are unsure. But after more tests (and learning I am indeed allergic to the lovely CT scan dye), they told me it was not my appendix and I would not need surgery. In fact, it was good news. I had a rather large ovarian cyst that had burst sometime around that early morning math class.
It was the worst good news of my life.
They gave unhappy sixteen-year-old me instructions to take Tylenol and drink lots of fluids and sent me on my way with no other words of comfort. Nothing to warn me that this wouldn’t be the last time it happened. Not a word about how I was about to go on one hell of a rollercoaster ride that probably wasn’t going to end until I was dead. Thinking back, I’m not sure I would want to break that to me either. Or, more likely, the doctors probably just didn’t know.
So I curled up in misery for a week, lamenting the loss of five days of school because back then, I was kind of a stickler for the rules and the worst thing that could happen was that I missed that big English test because I was too busy moaning in pain from this…thing. I didn’t like to say ovary back then either.
Then a woman my mother worked with sent her home to me with a strange acronym. Four letters that would change the direction of my thoughts forever, that would shape my life in impossible ways for the next five years and beyond.
You might know what it stands for. If we’re close friends, it’s possible I’ve told you about it once or twice but it’s okay if you don’t remember. Because even though PCOS affects 1 in 10 women worldwide, it sadly goes wrongly diagnosed, or even worse, completely undiagnosed until much later in a woman’s life. So you might know what it stands for but probably not.
It stands for Polycystic Ovarian Syndrome. It’s a mouthful, I know. But if you look at it and break it down word by word (hello, English major), it kind of defines itself. Poly means many (think of a polygon; see I did learn something in geometry!) and cystic means cysts, which are fluid-filled sacs that can gather at different places in your body. Ovarian is just a fancy way of saying relating to a woman’s ovaries. All together it’s something along the lines of: many cysts on the ovaries, and then they throw syndrome after it to make it sound fancy and also because even though many women are working to change syndrome to disease, those medical professionals can’t decide what to call it, so syndrome it is.
Polycystic Ovarian Syndrome. Now that you know what it is, it doesn’t sound so alien-like, does it? So what is it? In a very simple explanation, PCOS is when a woman’s hormone levels are messed up. Messed up in ways that don’t allow their body to function in ways that a “normal” woman’s should. I’m not going into details about all the different symptoms because 1. There are many and each woman has their own unique mix of them and 2. Because despite you probably never hearing of PCOS, you can Google it (yes, just those four letters, you don’t even have to spell it out) and a pretty list of symptoms will pop up on your screen.
But I don’t really want to talk about the inabilities and flaws of my body. Sure, they’re there and I’m dealing with them, will deal with them my entire life in some way or another, but they are not what’s important, at least not today. Not for you to know.
I want to talk about the way PCOS makes you feel. Don’t roll your eyes – I can see you doing it – because I’m not talking about sharing our feelings in a group circle with refreshments afterwards. If you cringe away from the phrases such as “makes you feel” and “sharing our feelings”, then perhaps it’s easier for you to think of this post as a public service announcement. I promise you that my only intention of making this post public is because it’s time for people to know the truth. And I – like countless other women – are tired of hiding in corners, of being afraid or anxious when topics like this get brought up.
Polycystic Ovarian Syndrome is not talked about and there are a couple big reasons for that that I’ve pieced together over the past five years. One is because this stuff is downright embarrassing. If you’ve done your Google search like a good little reader, you’ll know what I’m talking about. PCOS strips us of our femininity and god, if that’s not a bit shameful. No one wants to talk about extra hair growth or forty extra pounds that just showed up in the last two months. Not even me, writer of this very post. So people – women – keep their mouth shut and lie about what’s going on. Because not having your period for six months at a time is normal, right? It’s the reason that I spent years trying to hide the big blue pills I have to take every day from my friends, often going into the bathroom at restaurants to avoid questions. Which is stupid, isn’t it? Lots of people take pills; that’s the way our society works nowadays. My grandmother even has a special container that labels all her pills for her and tells her when to take them. So I should just get over it.
Except it’s uncomfortable because we’ve been taught that it’s wrong to talk about such personal stuff. There’s also that nagging suspicion that your friends and family aren’t going to quite understand when you tell them you might not be able to have kids (“Oh, wow. Uh, that’s too bad.”).
Reason number two is a lot easier to understand. It’s because lots of doctors simply don’t know what PCOS is, have never heard of it. Like us common folk down here in not-that-smart land, PCOS is unfortunately not talked about a lot in medical circles. That’s something that we, as a community, are trying to change and although it has grown in recent years, it’s still not near enough. Most OB/GYN’s have little knowledge of it (if they’ve even heard of it before). Lucky for me, I found a wonderful endocrinologist near my hometown who has been supportive and helpful (and knowledgeable!) from day one.
So back to our feelings (or the PSA, whichever one you prefer). Because this syndrome is not often talked about and also because it can be an uncomfortable topic to broach, this means that we with PCOS often get weird looks when we're forced to bring it up to people. Like that time I was at a spa with my roommate and one of the ladies gave me this completely disgusted look when I had to explain what the list of medications was for. It was humiliating and she made me feel like a bug beneath her ugly shoes. All because she didn’t understand what I was going through and that it wasn’t exactly my choice. As if I would choose this.
My favorite encounter was one that happened just this past Christmas break when an x-ray technician inevitably asked when my last period was. And my inevitable answer was a big sigh and then a mumbled “I don’t know, like three months ago? Four?” Here’s how the rest of the conversation went:
“And you’re not pregnant?”
“Are you sure?”
Wait, hold on, it’s all coming back to me. I just now remembered that one night back in September and oh god, you’re right! I must be pregnant!
“Yes, I’m sure.”
Big, disbelieving frown on her part.
“Well what other possible explanation could you have? Lying about it is not going to change anything and this could hurt a potential baby.”
Is this for real happening? Did she just say that? How much trouble would I get in if I punched her?
“I have PCOS,” I tell her bluntly, looking over her shoulder at the wall. “It’s polycystic ovarian -.”
This is the best part – when she cuts me off.
“Oh fine, you don’t have to explain. It doesn’t matter.”

It doesn’t matter.
Oh but it does, I wish I had told her. It matters so, so much. Because it’s an invisible disease and you never know who could have it. Your sister, your mother, your best friend, that girl you slept with last weekend. Your wife, your girlfriend, your grandmother. This syndrome is not prejudiced against skin color or religion or lifestyle. And there is no cure. All we can do is manage our symptoms with a nausea-inducing cocktail of medicines that can take years to perfect.
It’s taken five long years for me to except my body the way it was made, imperfections and all. Five years before I was ready to acknowledge to the world that I’m a little different than the other 9 out of 10 women in my statistic. But I am. And now I know it’s okay.
I didn’t write this post out of self-pity. In fact, I would have been more than happy to never tell anyone ever again about my PCOS. But I can’t ignore it. Neither can you. I posted it because there are women out there who deserve to have the basic rights to their body explained and protected. I’m hoping that by telling my story, I can help get the word out about PCOS and the need to stop shying away from it.
I might never have had the courage to write this post if it wasn’t for the incredibly supportive online PCOS community who have changed my life in bigger ways than this syndrome ever could. And to them, I send a huge thank you for letting me know it’s okay to talk about it and that these are challenges no woman should ever have to deal with alone. Even if she feels like the one woman on Earth who drew the shortest straw.
You didn’t, honey. We’re out here, I promise.
I hope that you, reader, are ready to listen now too. And maybe – hopefully – I’ve convinced you it’s safe to open your mouth. This goes for all illnesses and disorders. Word of mouth is the fastest way you can help. Word of mouth and acceptance.
If you made it this far, thank you so much for reading. You’re already helping.

*To learn more about and/or find support for PCOS you can go here: http://www.pcosupport.org/symptoms.php

1 comment:

  1. You are a perfect and beautiful woman. Your sharing will make you stronger and affect others who read your story!