Emotional torture

The emotional torture that comes with PCOS is something they don't warn you about.  Everyone talks about the physical symptoms: horrible weight gain, uncontrollable periods, extra body hair and/or loss of hair where it should be are just a few of the delights that a woman with PCOS has to deal with.

What they don't prepare you for is the absolute emotional wreck you can be.

It's really hard to listen to women talk about how bad their PMS is or how its "that time of the month" and how annoying it is when it comes every 30 days or so. A woman with PCOS just wants to tell you how lucky those women are! They have predictability! They have body parts that work right! A woman with PCOS waits and wonders if it will come, not when. And then she wonders if she will be able to manage the horrific heavy flow that dumps more blood in a hour than many women do on a full period. 

A woman with PCOS buys pregnancy tests in bulk because, if she's sexually active, she doesn't know if she's magically (miraculously) pregnant or if her body's just fucking with her. Again. 

She tries not to hate women who are want to get pregnant and do so within a couple of months. For her, it may never happen. She has no idea if she'll ever be successful. How do you get the body to work when it doesn't have enough hormones to make your body ready for a baby every month? 

And if, like me, when she's on birth control and her period is predictable thanks to hormones, she happens to be a day or two late, she starts to hope even though she knows she shouldn't. But how can she help it? How can she not think about if the unthinkable has happened? What if some magical set of circumstances happened and now she will have the full chance to be pregnant like she always wanted? She tries not to think about it. She avoids it. If its on her mind she makes jokes about it, trying to tell herself it won't happen, don't get set on the idea. 

And then she knows its never going to come so she takes the test. And three minutes feels like eternity. It's negative.

She always knew it would be, and yet it feels like a horrific let down anyway. She's not pregnant. And her body still won't function despite the regimen of hormones she religiously gave herself to ensure it would happen.

No, that part of being a woman, no matter how annoying to those who are blessed with a normal system, is not hers. She floats some line of too much testosterone, too little estrogen, and still fully woman. A woman who, even just two hundred years ago, would be considered barren and unwanted. And now, even in today's modern medicine, she can't do anything about it. 

She's stuck, living month to month and always wondering if the period will show up when she leasts expects it or if she'll endure another month with no answers. And, ultimately, will she ever be able to handle the disappointment of not seeing that flood of red that is supposed to be there or, if she's very lucky, have eight months of looking forward to the change a baby would bring her.

She is stuck in limbo. Those who call her lucky don't understand her desperate wish to just have a normal body, normal cycle, normal hormones. Normal challenges. She feels very much alone in a body that isn't supposed to work this way.

Emotional torture. Outside a woman, fully functional. Strong. Beautiful. Inside? Fear of the unknown, unpredictable, mysterious mess. They never warn you about that.

The period problem

Periods. I remember being excited about getting my first one. It was that awesome right of passage from girl to woman. A new responsibility. My own secret to share with whom I wanted. Then it came, and suddenly it was a nightmare.

I'm sure a lot of women can share my young teenage grief of trying to hide pads (I didn't like tampons) from the boys in my class. The fear of looking at the seat every time you stood up, fearing you'd see blood. Then sometimes you saw blood and it was full on panic to see how bad the leak was. The terror of walking in front of people, afraid the stain would show when your legs moved.

Fear of being teased. Fear of being known. I was fortunate that, aside from leaks and spills, I was pain-free. I have very few cramps, nothing that even required an aspirin to handle it.

I waited for things to become regular. I knew that it would probably be "several years" according to what I read in books or online. So, since I started at 12, then maybe at 15? Nope. Sixteen? Nope. something was wrong so I consulted a gynocologist. All she said was that sometimes it takes girls longer to develop a normal cycle.

Then I went haywire. I had periods that lasted 2 weeks. Then 3 weeks later, another 2 week cycle. Then 8 months with nothing. Just that waiting, every day. One day I got my cycle so heavy, I had to change my "overnight" pad every hour. This went on for 2 days. I had no idea this wasn't "normal." And even a return visit to the OB/GYN the next year didn't ask for details to discover it was abnormal.

At 18 I was tired of not knowing the answers to why my body refused to get with the program, and I discovered there was a condition called Polycystic Ovarian Syndrome (PCOS). I went to a new doctor and had it confirmed with bloodwork. But that doctor made no recommendation on how to manage this multi-sympton syndrome except for: Here's birth control, it will make you have regular periods.

It worked! I was suddenly on a 28-day predictable cycle with manageable blood flow. Life was pretty good. Over the years my cycle has shrunk from 5 heavy days to 3 or 4 light and medium ones. In the past few years I've started experiencing cramps for the first time in my life (no, they aren't fun...). I found a doctor who encouraged me to lose weight so I could potentially reverse the symptoms and not require the fake hormones. My body could be fixed.

And then something weird happened a few months ago. My 4 days turned into 3. Three days turned into 2. Instead of starting on Thursday between 7a-9a like clockwork, they started 24 hours late. Forty-eight hours late. Three days? Was it coming at all?

Birth control tests were negative. Soon all I was doing was just spotting for a day, it wasn't even real. I didn't even need a pad anymore. It just wasn't there. I went to my doctor and she said, "Huh. That's odd." But nothing medically is wrong. I'm slightly anemic, but not in the area where my period should disappear completely.

And then last weekend, I missed the entire period. Not one drop of blood was to be found. Finally, when it was 4 days late, I took another pregnancy test. Nope. Negative.

The thing about being a woman is, a period is part of who you are. I feel like I'm missing some part of me that should be there. Yes it's been partially broken all this time, but I'm doing things where it should be there. And now I don't know why its missing. I don't know where it went. I'm not alarmed, but I'm aggravated.

Why does it have to be so fucking broken? I've put up with crap and all I want is this one part of being a woman, no matter how ugly or annoying or painful it is, just to be here. Yes they get in the way, they cost money, they cause us to act emotionally, but dammit that's part of being a woman. And somehow my body is denying me that part of me. Where did it go? When will it come back? I don't know.

It's a problem.