The following information about PCOS has been gleaned through several conversations with medical professionals. I hope you find it as helpful as I did.
Me: Hey doc, my periods are miserable – they’re heavy and painful and I’ve got this embarrassing beard thing happening. Can we fix this?
Doc: I see that you also carry a lot of weight in your lower belly. This looks a lot like Poly-Cystic Ovary Syndrome. Here – I’ll do some tests and you can have an ultrasound. Would you look at that! Your blood glucose is kind of high and you have some extra testosterone floating around. Yep, you definitely have PCOS. Now there are several fertility treatments we could..
Me: Uh, but the ultrasound didn’t show any CYSTS on my OVARIES, and I’m really not interested in fertility.
Doc: Well, they just call it PolyCysticOvary blah blah but it doesn’t always come with ovarian cysts. Now, let’s get you started on some drugs that will keep you from skipping your period so you can get pregnant.
Me: OK, but I’ve never missed a period. Like ever. I’m pretty sure each period I have is in fact several periods all at once, including the periods of the prematurely menopausal. I have wrecked clothing and upholstery and my cramps and backache are debilitating. And in point of fact, the LAST thing I’m interested in is fertility. Actually, this is one of the main reasons I came to see you. MAKE THE BLEEDING STOP! You can order surgery if you want – I’m not going to be using that region for babymaking, so the uterus is about as important to me as my appendix.
Doc: Oh. Well. I guess we’ll put you on hormonal birth control. That should regulate you and magically balance your hormones, since you don’t care about motherhood. But, like all fatties in the world evar, your blood pressure is high so you’d better take this BP medication so you don’t have a stroke.
Me: I think the fact that you’re not listening to me may be contributing to my high blood pressure. If you’ll look at the records I had transferred, you’ll see that I’ve always had low blood pressure, even at this weight. Not normal – low. Maybe also the fact that you’ve seated me in an automated machine with a too-small cuff might have something to do with it.
Doc: Oh no, that’s not it. It’s because you’re fat. Fatty.
Me: If I take the BP meds, will you give me the pill to make the scary periods go away?
Doc: Sure! I’ve written the scrip for one that’s not generic since I get a kick-back for that.
Me: Fine. But what about the beard?
Doc: That’s also because you’re fat.
Me: But, uh, I had this when I was thin.
Doc: But you’re fat, so lose weight and it will go away.
Me: OK, but I gave you my medical history and you’ll note that when I was a reasonable weight and superfit, except for the cigarettes I was smoking to curb my appetite, I was growing a beard. You have no reason to believe I’m making that up.
Doc: Stop being fat and we’ll talk.
Me: See, my family tends towards “chubby”, but I had this thyroid disorder that wasn’t discovered until after I gained 80 lbs in a couple of months. You should know this – it’s in my history, and also, you’re my endocrinologist. Right?
Doc: Look, when you have belly fat, it can do things to your hormones, and mess up the uptake of insulin, etc, so then it’s really hard to lose weight.
Me: Oh! That explains why 6 months of the gym, no cheating, and not only did I not lose any weight, I didn’t lose any inches.
Doc: Yes, So that’s why you should lose that belly fat. Because it’s making you fat.
Me: But. So. OK, the belly fat is ruining everything and making it extremely difficult to lose weight… so I should lose weight?
Doc: You’ve got it! Here’s a drug that will help. They call it a lap band in a box because it makes you forget to eat! It’s brand new and expensive and your insurance won’t cover it unless I diagnose you with Diabetes. Would you like that?
Me: Wait What? But I don’t have diabetes! And furthermore, I don’t overeat.
Doc: Of course you overeat, Fatty! Let me explain the Calories In/Calories Out theory as condescendingly as possible
Me: But… 6 moths of fruitless exercise! Insulin uptake! thyroid!
Doc: Just stop eating. That will help. Trust me – didn’t I give you the birth control pill? And didn’t it work? I see it’s helped your acne.
Me: But I haven’t had acne in 20 years. My face was red last time you saw me because I was using acne topicals on rosacea. My dermatologist cleared that up. As for the birth control, my periods are like a normal person now, but I haven’t had the chance to uh, test out the Birth Controlling properties of the pill, which I suppose is fine, seeing as it’s pretty much destroyed my libido, and seeing that there seems to be a dearth of men who want to date a bearded lady for some reason. Now about that facial hair thing…
Doc: Are you sure you don’t want to get pregnant? Because there are treatments…
Me: God. No. Please – I’d like to not have to give Gillette any more money! I’d like to stop worrying that I have shaving cream under my chin! I’d like to not worry that I didn’t get a job because of the lack of career opportunities for bearded ladies. I’d like to stop buying the same foundation drag queens wear!
Doc: Why worry about make-up? It’s not like you’re trying to attract a mate so you can get pregnant. Stop being fat and the beard will go away.
Me: Since you haven’t paid attention to me previously, let me try a different tack. Once upon a time there was a girl whose weight fell into “normal” parameters of those bogus height/weight charts. And she had a beard. The end.
Doc: I know! I can get you a referral to a surgeon who will install a lap band! You’re so fat I just know your insurance will cover it.
Me: Look, I’ll agree to replace the desk that I’ve damaged through repeated, enthusiastic applications of my skull if you can just answer one question – what the hell is “PCOS” and how do you treat it anyway?
Doc: PCOS is a collection of symptoms that may include ovarian cysts, acne, hormonal imbalances, etc. We can’t treat the symptoms – the treatment for the Disease is not being fat, and fertility treatments.
Me: Wait. So PCOS is only symptoms, but you won’t treat them… I don’t even… I mean. SRSLY? FFFFFFFUUUUUUUUU!!!!
Doc: Let me write you a prescription for a medication to help you control your anger.
nerdycellist 
Ugh, PCOS is so frustrating. I was diagnosed 4 years ago after gaining 30 lbs in 6 months and my periods were getting heavier. My endocrinologist has slowly gone from moderately helpful to totally dismissive and unhelpful. The last time I saw her we decided there was nothing more she could do for me… and I’m not sure what she did for me in the first place. I’ve lost 10 lbs, which was never much of a concern since I am more of an “in-betweenie”. And of course I’m taking hormonal birth control so periods are better, but like you said, libido is gone. I’m married, and that’s a little tough… I’m also not concerned with having children EVER (due to a joint problem I have, among other things). My endo once said, “you have some time to change your mind.” Grr. I take metformin to stabilize my blood sugar (though I never tested as insulin-resistant) but I’m considering not taking that anymore since I’ve figured out eating protein for breakfast tends to help my blood sugar.
I have the opposite problem with facial hair – I’ve always had a little more dark hair than a lot of women, on my face but more so on my arms, belly, everywhere. So I figure maybe I’ve always had high testosterone but no one ever checked? Anyway, I’m personally not concerned about facial hair and every appointment my endo would ask if I shave everyday and I’d have to say, no, I really don’t have that issue. She really focused on it and ignored my other concerns of being fatigued, cold and losing hair. And those other symptoms point to hypothyroidism, which she tested for (results were “normal”) but refused to consider treating even though I have family history.
So I wonder what needs to be done about this PCOS thing in general. It sounds like the symptoms are too general, the treatments too inconsistent (and not prescribed based on individual patients’ needs) and for the most part its just a mess. I’ve been seeing a naturopathic physician for about 6 months and we work on the symptoms I’m actually dealing with, rather than what a doctor THINKS I’m dealing with. So far, that’s been a lot less stressful.
It will help next year when I have access to a car – then I will go back to my old doctor (the one who said that if the metformin/bcp didn’t clear up the facial hair, she’d prescribe laser hair removal in such a way that it would be covered by insurance) and yes, probably also start seeing a naturopath.
My current endocrinologist is completely useless. At the last appointment, he “tsk”ed me for retaining about 10 lbs of water weight about 45 seconds before “tsk”ing me for gaining a whole 5 lbs in two years – which by my count, means I lost 5 lbs. I guess part of the frustration is that you can present with a couple of symptoms out of the, I don’t know – 10? – present for PCOS and the Doctor will diagnose you as if that’s it. Done! Yay! We have a name for why you’re a freak!
My doctor would also ask about those symptoms I never complained of, such as hair loss and acne, every time I went in. I’m tired of having my diagnosis be an excuse for lack of medical treatment. But then, I’m in the same boat as a lot of other women I know who have pain, migraines and/or autoimmune disorders; since they predominantly effect women, are dismissed and ignored until some brilliant doctor decides to prescribe something off-label that they’re not sure what it does, but it seems to help some patients… all because “women’s health” research seems to be limited to getting us pregnant.
What do you know?
“Stop being fat,” is also a prime treatment for endometriosis — as is “stop having ovaries, already!”
A medical professional I was seeing once decided my super-heavy periods could possibly be due to endometriosis. As she was scheduling me for an endometrial biopsy, she mentioned off-hand that a lot of women found that pregnancy was an effective cure for endo. I asked her how long I’d have to be pregnant. She didn’t make any further suggestions.
At this point, any health care provider (specialist, triage nurse, etc.) who says “cure for endo” is cause for me to leave the room, hoping I am not pantsless at the time.
Still and all, I wonder how many things “stop being fat” cures. Someday, when I have too much free time, I will make a flow chart.