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What PCOS looks like (iteration 1 of 4,800,000)

September 10, 2009

For more facts about PCOS click here.  For advice on how to deal with PCOS once you know you’ve got it, click here.

One of the most obnoxious things about PCOS is that it looks different in every woman who has it, which, on top of the fact that there is no tried-and-true test for it, makes it very difficult to pin down.  It’s a sneaky little bugger.

We can’t leave it to lurk around on its own, though, because it will wreak havoc if left to its own devices, and the best way I can think to bring it out in the open is describe what it’s like for individuals and hope that each story will ring warning bells in a few other heads, because 96% of women with PCOS don’t know they have it (I’ll state that fact again and again until every one of those 4.8 million have their diagnosis, so at least they have a fighting chance).  I can only tell my story, so here it is – there are a lot of TMI details, but very little about PCOS is pretty, so just don’t say I didn’t warn you.  And if any of you out there reading have PCOS, please write your version of the story in the comments!

I got my period for the first time when I was 12 and very quickly decided that this “being a woman” thing sucked.  My periods only came every 6 or 8 months, but when they did it was like getting hit by a train.  The cramps were incredibly painful and laid me out completely (possibly, I was just a wimpy 12-year-old, but possibly they really did suck that bad).  I would then bleed for about 3 weeks, and heavily (like 2 super-maxipads in a night).  My doctor sent me to get an ultrasound to look for cysts, but nothing came up.  Once I went on birth control around age 14, things evened out a bit in that department.

But then everything else went haywire.  I started to get acne – 14 years old, totally normal, etc. etc. – but it was bad, really bad, and my zits just straight-up ignored any treatment of any strength.  Some of them were like, fuck this shit, and set up camp on my back instead.  The Accutane I took a few years later dispatched the acne but came too late to stop the scarring. Then, I started sprouting little wiry hairs on my chin and breasts.  I started developing a happy trail, too (not so happy on a woman) and a little downy mustache, a la this dude

which, let me tell you, doesn’t help the already-crushing awkwardness of being a teenager.  I developed a weird obsession with plucking (as in, I still occasionally will pluck leg hairs that seem too dark), which at least kept the hair sitch under control.  Then the dandruff arrived, which was awesome.

When I was a sophomore in high school, my gangly, adolescently thin luck ran out, and I began to gain weight; slowly at first, then faster and faster and faster, so by high school graduation I’d gained 50 pounds.  It was years before I would look at pictures from my graduation.  For the next few years, into college, my weight bounced up and down – up 40 pounds in 7 months, once.  Some women with PCOS have experienced more than twice that in half the time.

I should have felt lucky it wasn’t more, but I didn’t know about PCOS, only that my body was completely out of my control and seemed to be sabatoging my bids to enter the college mating game.  I topped out 3 pounds short of being classified as “obese” according to the admittedly-imperfect BMI scale.  I went a little crazy after that; I starved myself for 4 months, eating an average of 150 calories a day and exercising for around 3 hours a day.  I also purged and did some chew-and-spit.

I needn’t point out that this was a bad idea, because at the end of those 4 months I’d lost only two pounds.  Slowing metabolism aside, something should have happened in those 4 months besides me fainting from lack of food and often being an incorrigible bitch because I was so tired.  Though I’d had trouble losing weight in the past, my internalized self-hate and fat prejudice had me so convinced that it was because I was lazy and stupid (as all fat people are, just ask MeMe Roth), so I was too ashamed to ask for help.

After the 4 months of pointless starvation, though, I knew something had to be wrong, so I started going to doctors and asking for help.  Their reaction was basically this

No doctor considered – even for a moment – that I was telling the truth, or that they should consider listening to a heavy person, because again – they’re lazy and stupid and have no self-control or self-respect.  This includes, by the way, a doctor who specialized in weight-loss problems and the same doctor who had treated me for the irregular periods, the acne, and had panels and panels of blood tests that had thrown up giant blinking neon arrows pointing toward PCOS.

It was a friend of my mother’s who finally diagnosed me, a doctor who does some internal medicine but whose practice is primarily concerned with Botox injectionsAnd she spotted it without ever seeing me or any of my medical records – only what my mother had told her.  That, more than anything else, proves to me that my other doctors really should have seen what was wrong.  Something about those stupid white lab coats make them believe that they needn’t listen to their patients.  I’m being unkind, I know – fat prejudice is far more widespread and systemic than these few doctors.  PCOS is hard to diagnose.  But I still get angry at them anyway.

My mother’s friend had me in, examined me, sent me off to give approximately 1 gallon of blood for tests and do an MRI, and finally came back with the decision that it had to be PCOS, because it certainly wasn’t anything else.  It’s how a lot of women are diagnosed – it’s called diagnosis by exclusion.

It took me 8 months to get that diagnosis (during which I continued to starve myself).  For some women, it took years, or decades.  Only the very lucky will get the diagnosis without some serious persistence on their part.  The diagnosis isn’t a magical cure, obviously – there is no cure for PCOS.  It’s chronic, but it is possible for almost everyone to drive away the symptoms to the point where they are barely noticeable.  It’s not easy, but it’s possible.

The reason why the diagnosis itself is so important is because it gives you back control of your body.  It explains to you that your body was just playing a different game the entire time and then hands you the rulebook.  Once I got the diagnosis, I felt so – I hate this word, but there’s no way around it here – empowered.  It was like a shield that I could hold up against the scorn and shame and hate that I’d feel whenever I looked in the mirror.  It was incredible.

Part 2, coming tomorrow: what I’m doing to battle PCOS.  What I’ve done won’t work for everyone, but it’ll work for many.  (I’ve lost 20 pounds in the last 2 months – I hit the “normal” range in body fat percentage and BMI for the first time in 5 years TODAY!!)

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6 Comments leave one →
  1. Lauren permalink
    June 14, 2010 12:35 am

    This was a real weird article. -.-

    • phnuggle permalink*
      June 14, 2010 1:21 pm

      haha – uh, thank you? I’m not sure what’s weird about it, so perhaps you can enlighten me

  2. September 28, 2012 11:58 am

    Yes, yes. yes. I have felt everything the author has felt. I totally feel a kindred spirit wrote this.

  3. Dee permalink
    June 3, 2013 2:17 am

    I also experienced weird patterns with my period. Nonexistent and then heavy for several weeks. I was 17 when I have birth to my son. He was induced because I had preeclampsia. In the third trimester, I suddenly was packing on pounds. Abnormal pound packing from working maintenance and eating a turkey sandwich for lunch?? My ring even needed to be cut off one night, I had become such a round thing SO fast. The doctors couldn’t find nothing but my Internet research pointed to preeclampsia. Two weeks before my son was expected, oh they discovered I had preeclampsia and induced. I was 226 pounds at delivery. Went down to 190 soon after, but then boom! I was packing on and suddenly I’m 280, hairy (upper lip, chin, nipples, you name it). I also couldn’t get pregnant again and my periods were horrible. Wouldn’t stop bleeding when it came. A tampon wouldn’t last half an hour before my draws were soaked. Went to ER twice-no help. My life was miserable and there was no help for it. I didn’t eat like you expect a 280 lb woman to eat. 7 years later I finally lost weight by eating more often but smaller portions (lean cuisines) and walking.
    I went down to 150. Got implants, a tummy tuck, started nairing my upper lip and shaving my chin (no more just bleaching). Shaving is a no-no but I messed up and now I have to shave my “beard” everyday. Anyway, I started having normal periods, became pregnant and all. I didn’t keep the baby but had gained some weight. I ended up having mirena iud put in me so as not to get pregnant. I continued to gain weight. Doctors checked my thyroid-nothing. I was 230 lbs and misreable within a year. also, my physical revealed I’m pre-diabetic but doc didn’t say much about it. I have high cholesterol and low good cholesterol. I don’t eat like a fat person and have been so confused as to why my body is going nuts again. Now I realize what my problem is and has always been-pcos. I did look into it before when trying to figure out what was wrong with me, but a doc never diagnosed it so I kept it moving.
    So I’ve been trying to maintain a better diet (eating more often, smaller portions and looking into low carbs since I’ve read pre-diabetics have an insulin issue) and have been going to gym for cardio and weight training. I’m scared ill get big muscle tho if I lift too heavy. I’m full of testosterone, I’m sure! I’m also thinking about pulling out the iud. I have been reading this doesn’t help pcos.
    I take vitamins, but I’m still tired. I’m looking into laser treatment for the hair.
    I’m just so unhappy with how I look. And I’m angry this will be a constant war.
    I just want to be normal. I recently was laid off so I have no insurance. How will I get any medication? A different pill that will help my hormones? And which pill would be best? I feel lost and alone and helpless.

    • phnuggle permalink*
      June 16, 2013 9:12 pm

      I’m so sorry to hear about how much you are struggling. I also felt very isolated in my disease irl, until I discovered how big of a PCOS community there is online. I’m sure you’ve already found them, if you’ve gotten to my forgotten corner of the internet, but the ones I like are pcoscommunity.com, soulcysters.com, and reddit.com/r/pcos. Good luck and stay strong.

Trackbacks

  1. Do you have Poly-cystic Ovary Syndrome? If you do, you probably don’t know it. « The Mixed-Up Files of Phnuggle

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