"In Which I Confess Something #2"
Or "No One Buys a Broken Toy"

Earlier last month, I posted about my experience with Dermatillomania (see also Dermatophagia), a compulsive skin picking disorder.

This post is going to be about Polycystic Ovary Syndrome and the fact that 1) it sucks, and 2) I have it.

In the last confession post, I began with an apology to my Mom, and I'm afraid that I have to do that again for this post. I've hidden this particular problem from everyone but my gynecologist (I mean, it's kind of hard to hide something like this from someone who has been elbow-deep in my junk) and my sister, and it's high time I start being open about it. I know my Mom reads my blog, so I know she'll read this post. Being honest was one of my New Year's Resolutions, wasn't it? Live up to it, buddy. Live up to it...

That being said, Mom, I'm sorry for not talking to you about this. You're awesome, and I know you'll forgive me / immediately call me to talk more in-depth about it. Let's do this.

DISCLAIMER: I will be talking about lady issues in this post, so if vaginas, periods, and/or feelings make you squeamish, click the nice little X at the top right of your browser window.

What is Polycystic Ovary Syndrome?
Polycystic Ovary Syndrome (or PCOS) is a lady disorder that, honestly, I don't really understand all that well. It's possible that it's a genetic thing, but I'm pretty sure that no one in my family has it. Essentially (medical folks, please don't flame me... it's all very confusing and jargon-y),  an overabundance of male hormones (i.e. testosterone) causes a bunch of crazy stuff to happen with my ovaries / reproductive system / body.

Ever hear of "The Bearded Lady?"
Yep. She probably had PCOS.
Either that, or a really good makeup artist.
Or she was actually a dude.
Or Greek.
Symptoms (the ones in orange are symptoms that I have):
  1. Few menstrual periods or super heavy, frequent periods
  2. Hair loss (alopecia is common) from the scalp and / or abnormal hair growth on the face, chest, and other dudely places
  3. Acne due to oily skin
  4. Depression or mood swings
  5. Anxiety
  6. Weight gain usually limited to the abdomen instead of the hips
  7. Repeat miscarriages (?)
  8. Infertility (?)
  9. Hyperinsulinemia (too much insulin) / insulin resistance which cause skin issues such as dark under arms and groin areas
  10. High blood pressure
  11. Breathing problems as a result of being overweight (i.e. sleep apnea)
  12. Cysts on the ovaries
7 & 8 have question marks next to them because I have never been pregnant nor have I tried to be, so I don't know.

And this is when we get to the nitty-gritty. The number 1 reason I don't tell people that I have this disease is because I'm fracking terrified that I can't have babies. I've even taken it so far as to tell people that children scare me and that I want nothing to do with them. The truth is that I love kids. I think they're really neat and am pretty sure that I'd be a freaking awesome Mom. For serious.

I have had really long menstrual cycles for as long as I can remember (i.e. 3 months and no period, followed by 2 days of light bleeding, followed by another 3 months of nothing). I played it off as no big deal and honestly kind of enjoyed the lack of cramps, blood, etc. I thought it was awesome and didn't want to knock my great luck. I knew it was weird (precisely why I didn't make a big deal about it), but why on Earth would I want to report the abnormality and - gasp! - have someone fix it, effectively ruining this "advantage" that I have??? Then again, I was in middle school / high school and didn't know about PCOS. If I had, I would have run to the gyno as quickly as possible.

PCOS introduced itself while I was in college by way of a friend of mine who also suffers from the disease. As she was telling me about it, a subconscious checklist of symptoms popped up in the back of my head. Yes... Yes. Guh, yes.

From that moment on, the probability that I might have this disease followed me around like a little puppy dog. Every time I had random intense pains in the vicinity of my ovaries (I usually just blamed it on terrible gas or possible appendicitis), every time I went months without menstruating, every time Mom pushed me to "just go see a gynecologist already..." PCOS lurked in the background of my brain.

I'm ashamed that it took me so long to go see the gyno. I was - don't judge me - 25 when I finally sucked it up and choose to face the inevitable, and she almost immediately diagnosed me.

"Have you ever heard of Poly Cystic Ovary Sydnrome?" she asked in the middle of her exam.
"Yes, I have," I said, then took a deep breath. "I have that, don't I?"
"I can't confirm that, but you do have several of the symptoms. We'll need to do some blood work before I can say anything definitive."

She then went on to explain a little more about it, most of which went in one ear and out the other. I was mostly disappointed. I wanted so badly for her to say that my lady parts were normal, that conceiving wasn't going to be a bitch for me, that life as a mother at some point in my life was possible.

But nope. The blood work came back a week or so later, and it was official: my ovaries are stupid because of PCOS, and they do not like babies.

Screw you, ovaries.

Now, there are a bunch of tests that I could do to determine if I am, in fact, infertile or if I have even the slightest chance of conceiving, but I'll get there when I get there. At the moment, I just have to face the fact that children might not be in my future.

And I have to learn to be OK with that.

Yes, adoption is always on the table, but adoption is freaking expensive. I'm not rich, and with the way the economy's going I don't see myself becoming rich anytime soon.

Another thing that sucks is that I have to tell potential boyfriends this.

"So, I have this thing..."

I feel like a broken toy that no one wants (perhaps I should go to the Land of Misfit Toys -- see right), and that, in and of itself, is pretty heartbreaking.

Every time I see another "WE'RE PREGNANT!!!" post on Facebook, I want to claw at my abdomen, curse my terrible luck, and scream at God for doing this to me. It's just not fair. And it sucks.

I mean, seriously? God allows something called a "Snookie" to procreate and raise what is destined to be the anti-Christ, but I can't have a kid? SERIOUSLY??? In what world does that make any sense?!

Yes, I am angry. Yes, I'll get over it. But that will never change the fact that it sucks big time, and right now I don't give any of the fucks.


Peace.
Stef.

Comments

Jeff Evans said…
I'm so sorry you have this, and hope it won't prevent you from having kids. I sort of understand that, even though I'm a guy (and an old one, at that)--I don't have any kids and had to have surgery a couple of years ago that my doc said would probably make me sterile. I have no idea if it actually did. I'd like to have kids--though I'm starting to get too old for that sort of thing--but the thought that it may never happen because of physiological reasons (instead of me just being hard to want) is kind of upsetting. Anyway, thank you for sharing. I know it was hard for you.
Lisa Marie said…
Wow, Stef. I am so sorry. Kudos for sharing. While I don't have PCOS, I do have raging endometriosis and recurrent ovarian cysts.

Plus, when I was 20, I had tumors removed from both ovaries, and the surgeon promised me early menopause when she "left as much of my ovaries and as many of my eggs as she could" and that I should just get a hysterectomy as soon as possible. Screw that.

12 years, 6 miscarriages, and 2 babies later, I deal with ovarian pain constantly and yes, it sucks. My periods are weird, I am considering having my heating pad surgically attached to my belly, and if one more person looks at me funny when I say "my ovaries hurt", I'm gonna slap them.

It's not fun, I'm sorry, I love you. Feel better, damnit!
Linda said…
Hi Stef,
I'm sure this condition doesn't necessarily mean you can't have children. I always had PCOS: I had 2 operations to remove cysts. Then I had a 3rd operation and they ended up removing one of the ovaries too. AND I still had a fourth child after that! So please don't worry too much!
Winnie said…
I'll admit I didn't read this whole thing--my own 1-year-old running around makes me too busy to do some things--but I do just want to say that God is still in control and I understand the anger at what could be, but don't forget that He DOES still have a plan for you and you just may have kids. My friend's sister has PCOS and got pregnant and the only reason her baby didn't make it is because the stupid military hospital in Korea where they were stationed didn't care enough to try and keep the preemie alive.

My own experience, I'm sure I don't even have PCOS as a reason, but we tried for 3 1/2 years (and oh my gosh, you'll hear the multitudes of advice about how to get pregnant and the main one is "don't try so hard" and we were told that and all I could say was "if we tried any LESS, there'd be absolutely no chance of a baby!"). We never went medical routes, and finally, we had our baby, so don't worry, people who are told they can't have babies have babies because God is the one who allows them to come. Just remind Him of your desire and trust His plan.
Kennedy said…
I just happened to stumble upon your blog and have very similar issues (or concerns with potential issues)... I have raging dermotillomania for picking my thumbs (good thing I don't have acne or my face would be a wreck with the amount I pick). My mom does it too and just calls it a nervous habit but I think she also has mild anxiety. It's such an impulsive thing that I can't stop and it's annoying when friends are like "ew that's so gross, stop". OBVIOUSLY I WOULD IF I COULD!! I don't know if I should go to the doctor or if it'd be pointless because no one really has a solution to the problem; any tips? And now you're probably wondering why I'm commenting this on here because this post isn't even about that but I also fear I may have PCOS (maybe I'm just being dramatic) but I'm a sophomore in college and haven't had my period in 11 months. In high school I would get it probably 3 months off and then a light one (very similar to you). I think it was because I was very athletic, but now I rarely exercise so... Anyways my mom thinks it's normal because she was like that in college (although I think she was probably underweight). Should I be concerned? Would planned parenthood be able to address this problem or should I see a specialist (gyno)?
Kennedy, thank you so much for your comment.

Planned Parenthood would be a good place to start. If more specialized care is needed after that, then a gyno or an endocrinologist would be able to help you further.

That being said, you can never know for sure if you don't bite the bullet and get tested. I wish I had gone earlier, because I would have known earlier. None of this "maybe" sort of stuff.

So my advice is to go to PP ASAP. They're there to help. :) It is never a bad thing to ask for help when you need it.

I wish you the best of luck and hope that, even if you don't get good news, you take it in stride and adapt well. It's not the end of the world, and there are people who have lived healthy, full lives with this disease. Why not you?
Hannah said…
Hi Steph, I really like your style of writing - very easy to read and relate to.

I wanted to let you know a couple of things. One is that I have three sisters, two of whom have Polycystic ovaries, and both of whom have had absolutely NO trouble conceiving twice (two little boys each). One of them even has a hormone imbalance giving her acne as well. And yet, no problem having two babies. Seriously - two weeks it took to get up the duff, both times. So don't writ yourself off completely. Worry about having babies when you want babies.

I don't have kids yet. I'm 27 and, as I have never tried, I don't know if I can. I floated this with my GP when I went to ask her about irregular periods, and she said honestly not to worry. This is the second thing I wanted you to know - she said when you're in your 20s or early 30s, things can be done to help conception along. It gets tricky after that though.

Oh and as an aside, I also bite the skin on my fingers compulsively. I didn't realise there was a name for it, and I don't think I have it as badly as you do, but I really can't not do it. I used to bite my nails until they bled as well, and I have managed to stop doing that. Now I just bite the skin around them. Until they hurt. Or bleed. Or both. I don't know if it's connected but, even more compulsively, I pick at the skin on my scalp. I know, gross huh? My boyfriend hates it.

Anyway, back on topic, if it turns out I can't have kids - it's more cash saved that I can put towards buying a house and more time saved so I can get on with writing that novel I have always wanted to find out if I can produce. Silver linings eh?

Oh yeah - watch Silver Linings Playbook - it's GOOD.
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Kristen said…
Thank you for posting this. I found out last week that I have PCOS and as my husband and I are trying to conceive, it is very frustrating not knowing if I will be able to do so. I've tried to stay hopeful because God can do IMMEASURABLY more in my life than I ever give Him credit for, but it's still hard to stay positive. Thanks for being so honest and showing that it's okay to be ticked at this stupid syndrome.

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