PolyCystic OMG this sucks Syndrome

I found out something last week that’s kinda thrown me for a loop. Isn’t that a quaint saying. The more I think about it the less I understand it. What exactly is the loop referring to? does it mean you’re all of a sudden off track, and have to loop around to find it again?

I don’t think I’m quite off track.. I’ve just stopped for a bit to digest.

Last week I finally got in to do the scans that my Doctor had finally referred me for, and lo and behold, they found Polycystic Ovarian Syndrome. We’d tested for it before by blood – twice, actually I think, but PCOS is notoriously difficult to pick up that way. After the call I kinda shrugged and thought ‘whatever’ to myself. It’s not some huge earth shattering revelation. I’ve suspected it for almost three years now. That’s why I’ve been pushing and pushing for tests. Now that it’s confirmed it should just be a moment of ‘I told you so’.

Except…

It’s not really the moment I thought it would be. For one, I don’t feel very casual about it at all. I’m angry, scared, vindicated, anxious and stressy. Also: dieting, which probably doesn’t help the mood shit-storm.

I have a friend who has been living with it for ten years or so now, and whenever anyone ever gets a diagnosis, they show up at her doorstep for advice.  She tells me you go through almost the 7 stages of grief when getting a diagnosis like this one. I kinda giggle a bit, because: really? It’s just PCOS. It’s not exactly life threatening. And besides I knew it was coming, it was just a matter of finding a way to prove it medically to my Dr.

I think I may have giggled too fast. I’ve been reading an amazing book called ‘The Patients Guide to PCOS’ by Dr Walter Futterwiet*, and some of the stuff I’m reading so far is scary. Scary like I have a higher chance of type 2 diabetes. Like cardiovascular disease is more of a risk. Like I’m predisposed to high blood pressure. Terrifying like my body actively fights against weight loss – and the more weight I gain, the more at risk I am of developing more crappy PCOS symptoms.

Less important is the fertility stuff. At 27 I think I’ve earned the right to say I don’t want to birth my own spawn, but should that ever change, pregnancy with PCOS is not impossible, but it will mean likely climbing a mountain of fertility treatments.

None of the symptoms are fun ones – like, Oh, if you have PCOS, then you get better vision than everyone else. Pretty much you’re the closest thing to a super hero with xray vision. Nope. Instead you get to be the closest thing to a super villain, with excess hair, wonky periods, insulin resistance, excess stomach fat, high rates of obesity, links to endometriosis, high rates of depression, feeling constantly tired, and with the fun potential for painful inner lady-parts malfunctions and maladies requiring surgery.

The book has been a revelation. I did wonder why the hell I’ve never in my adult life been skinny – I mean, between the ages of 21, and 24 I used to go to the gym for 6-8 hours a week. And I worked out HARD. I’ve been on a variation on one diet or another since the age of 23 (when I realised that the gym wasn’t doing a damn thing) and have done nothing but gain weight.

And the fact that depression knocked me into bed for three months or so last year (which is not to say I wouldn’t have experienced those same feelings without PCOS, bit I’ll bet their scale, and my response would have been different.) The fact that over the last two years I’ve felt tired down to my bones so often I’ve begun taking handfuls of multivitamins and iron supplements every morning. The fact that often I supplement my supplements with handfuls of carbs and easy sugar in the afternoons.

The period that never used to arrive and – now that I’ve had what the medical community refer to as a ‘significant weight gain’ – doesn’t go away. (Cue swearing.)

The adult acne that has been present around my mouth in Every. Fucking. Photo. I have taken since the age of 18. The wooly mammoth effect I get in winter.

Mostly right now I feel tired with a side of pissed off at my GPs past and present. The problem with PCOS is that you can manage the symptoms, but it requires weight loss, and maybe (likely!) medication. And that’s it. That’s as good as it gets – management. It doesn’t go away.

I guess that’s what has thrown me for a loop. the fact that in this case, the loop is going to be me, going over and over and over again through dieting and the wonderous plethora of fun symptoms that require management. Then again, perhaps management won’t be so hard – I have only just hit the first chapter of part two: Getting Well Again.

And,  if this is a loop, then it means I get to tell my GPs over and over again “I told you so.” “I was right.” “I told you so.” “Sucks to be you right now loser GP.” Surprisingly I’m ok with that.

*Futterwiet is a funny word. I couldn’t let a whole post go by without acknowledging that. Futterwiet.

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4 thoughts on “PolyCystic OMG this sucks Syndrome

  1. Yikes, that sucks!! I can understand how scary it is to know that you have PCOS. I have been having an (or a couple) ovarian cyst(s) for the past two years, and for a while I did a lot of Internet research on ovarian cysts, including PCOS, suspecting that I might have it. What I have learned is that western medicine doesn’t “cure” you, like you said, it just “manages” the symptoms. Maybe you can try alternative medicine, combine that with exercise and diet, and see if it’s more effective. Hang in there!

  2. Yay? I mean, at least you have an answer. What would have been a better answer would have been “We’ve discovered someone putting butter in the water and it’s causing weight gain, strange hairs and pimples in the community! Sign this petition to get butter out of water!”

    The good news is that birth control can help a lot with cyst symptoms. It minimizes the hairs, the strange breakouts and cysts from forming and “resolving” themselves while you lie on the floor hoping someone will hit you on the head with a blunt object. Still, it really sucks to feel like your body is staging a revolt.

    If you ever want to commiserate, please write! 🙂

  3. Argh- GPs and their ‘im not familiar with that, so it isnt a thing’ mentality.. Is there a doctor you can get referred to locally that is more versed with your diagnosis? Perhaps a nice Futerweit disciple? I had to say it too….

  4. I have PCOS too. I understand the frustration. You either need a really good OB/GYN or and Endocrinologist. The best way to beat this thing into submission is healthy eating (low carb) and exercise. Losing weight will help so much! I wish you all the best. xo

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