Sunday, January 27, 2013

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.


  1. I can totally relate to this. Especially the not knowing when/if you'll get your period. It was terrible for me because I never wanted kids. So I lived with that low-grade fear that I was always getting pregnant, even though I knew the odds were unlikely. I'd get myself so psyched up about it, almost resigning myself to the fact that I was pregnant, getting sick in the mornings, my boobs would be tender. So I'd finally break down and buy another test, only to be negative. And I swear every damn time, I'd start my period like an hour later.

    Then finally, my period came and didn't leave. For like 8 months, the last 4-5 I was bleeding like a stuck pig, to the point of anemia. Hormone therapy made me homicidal, even at the lowest dosage I was in a constant red rage. I bled out not one but TWO Mirena IUDs. Finally the only answer was surgical. Either a hysterectomy or an endometrial ablation. I opted for the lesser of the two, with a side of laparoscopic tubal ligation. That was 3/17/08. Best thing I ever did. No more horrendous periods, no fear of pregnancy.

    Doesn't cure or do anything for the PCOS, though, which still gives me hell. :/

    1. All I want to do is give you a great big I KNOW YOUR PAIN hug.

  2. I had this issue when I was young, add in a tilted uterus and the once every 3 months I might have a period I was in agony. Curled up in the fetal position on a bed begging to have it cut out of me. All of my babies came when I had been on birth control for over 2 years religiously. After my last child was the first time in my life I have had a period every month. But I still suffer. 2 weeks before they come I am, like today a wreck. I can barely stand upright but have to because I have to do things all day. Ibuprofen and heating pads become my friends. I hear you hun loud and clear and send you a hug that there is hope I am proof of that.