A History of PCOS by Me – aged 31.

Yesterday as I staggered around Borders wishing for early death (not to be overly dramatical) I told The Boyfriend I’d picked up the PCOS Diet Book and Managing PCOS for Dummies.  He said surely I could write a Dummies guide to PCOS by now, having immersed myself in it for so long.

Apparently not! Quite apart from the fact that there’s more information in one single paragraph of these books than I ever got from a single specialist, the information in them is stuff I’ve never heard linked to PCOS before. Which has put me in between relief – “Oh good, it’s not just that I’m weird, it’s the PCOS” and anger – “Oh great, another fucking thing to go fucking wrong”.

Much of my “knowledge” of PCOS is gleaned from websites, communities and books. Simply because the specialists I saw were there to treat or look at one aspect of the whole, and therefore they’d do that and wander off. So as new information comes to light about the effects this condition has on the body, I need to make sure I keep up. In this case, it’s interesting to note that poor sleep and oversleep have been linked to – you guessed it – PCOS.

However most if not all of the worst parts of the syndrome can be bashed on the head with a quality low GI diet which includes a lot of whole grains and whatnot. This is a relief. I’ve avoided looking into PCOS diet simply because of the mental “I suck at diets” block. To find page after page of nummy things to eat that I can eat daily – big big big relief. My favourite of the three books I got yesterday – The Ultimate PCOS Handbook – even includes options and advice for vegetarians like myself. Hurrah!

So now for the history part. This post will be long, you can take a nap in the middle. I already napped today, so I’m good for a while. Ready? Let’s begin. (Boys should note at this point, I will be mentioning periods. Don’t be scared)

In about grade 5 (age ~ 10) I went from a tiny elfin little creature to three times my original weight within about 5 months. BANG. At age 12, my periods started just before I started High School. They were heavy, horrible and I missed a lot of school due to exhaustion and other things related to a 5 month constant period. Then they stopped, started, stopped, started… they never lasted less than 4 weeks.

No cause could be found for this cycle, nor for my massive weight gain apart from “You eat too much and you’re lazy”. I was, at this stage, not overly lazy. If I went to a friends house, for example, we’d walk into town, catch the train to the city, walk the city for the day, come home and walk back to their place. I was moving. I wasn’t a great sportsperson because I was fat and therefore slow, and my knees and ankles were giving way in alarming manners.

The ankles were addressed by a doctor who had me use insoles to support the foot, but the problem remained.  A specialist in something or other tested my blood and said, without looking up from his notebook “Ah, yes. You probably will not be able to have babies. Everything else is fine. Goodbye”.  Meanwhile I was growing body and face hair like whoa, which got me a referral to a dermatologist who – and I am not joking but I wish I was – said she couldn’t help with the hair problem but I clearly ate too much junk food. When I said I didn’t, she stood over me and blasted me for lying to her because I was so fat I was clearly eating junkfood every single day. Unable to defend myself, and crying hysterically,  I swore off doctors for a long time. The Boyfriend can attest it’s a nightmare to try and get me to see a medical person these days.

However, I happened to read a magazine article about PCOS and the symptoms seemed to fit so I marched  back to the GP and asked to be tested. In the darkened room of the ultrasound booth, a lovely smiling little Chinese specialist sat me down and pointed out on the pictures exactly where all the cysts were, and confirmed that yes, I did have PCOS. Without doubt he is the best specialist I have ever seen, not just because he took the time to explain what was going on, but because he was sympathetic about the whole deal.

Anyways, that was 9ish years ago and back then (listen to me like it was 1963) the treatment was the Pill. This was purely to get the periods ontrack again, and resulted (in me) in  more weight gain and feelings of suicidal depression. So I stopped it and gave up for a spell till I read on the internet that someone had found a link between PCOS and Insulin Resistance, and treating the IR would help the PCOS.

AND HOW. Taking metformin, a drug used for diabetics, and adding a tiny bit of activity to my life I dropped almost 25 kilos.  The drawback? I felt, constantly, like I was about to puke. Medication didn’t stop that, it was just something to put up with and I decided I didn’t want to put up with it anymore and stopped met. BANG, 25kilos straight back on. I dabbled with met again earlier this year, but I really cannot stand the feeling of nausea and the idea that if you cough, you’ll need to change your pants (sorry, TMI?).

Which brings me, rather neatly, back to diet. Currently I can only do parts of it, but I hope even a little bit of the diet will help in little ways (this is because I still live at home, and my mother considers the phrase “Low GI” to be something someone made up to make money).

I’ll start slowly, mostly because I’m spending most of my time with the books reading through the case studies and thinking “Oh yeah, me too. Me too”.