I was diagnosed at 16, but looking at the symptoms I've been living with it since I was least 13.
PCOS is the most common endocrine disorder in women. Despite it's major prevalence (estimates are that about 20% of women in the US may have it) it's still pretty unknown. Part of this, people guess, is because it only affects women, and also that perhaps a lot of women don't openly talk about it because a lot of side effects (like excessive facial hair, skin discoloration, thinning hair, acne, and weight gain) are embarrassing.
At its core, it's a hormone imbalance. It's not just one hormone, it's generally several that are out of whack. It is also got a relation to insulin resistance, so it puts women with PCOS at major risk for diabetes. (Insulin is a hormone, though it's all connected.) Women with PCOS are also at a higher risk for heart disease and feminine cancers. It's not a great thing.
Most women with PCOS have irregular periods and don't ovulate regularly, so it's the leading cause of infertility in women. PCOS does not mean infertility, but a just a higher likelihood of it, but some women with PCOS conceive naturally or with medical assistance.
In my over a decade of having PCOS, I've seen the medical advice change drastically. Most veterans of this health issue will tell you this: don't take doctors too seriously. And we don't mean that to bash the doctors, but seriously they don't really know what PCOS is like. I'm serious.
When I was first diagnosed the advice I was given was to take birth control pills, go on the Atkins diet, eat soy and of course, the perpetual lose weight. But I was warned it would be harder for me to lose weight than other women, due to the hormones. But I had to do it.
Well my mom and I went out and bought the Atkins diet book... that wasn't going to work for me. I only ate like five things on the big several column long list a few pages in. So we just determined that wasn't for me...
And you know what? Atkins is no longer recommended (by doctors whose information is current) for women with PCOS. It's just too extreme. Low carb is recommended, but nutritionist experts specializing in PCOS recommend a subtle restriction. I have The PCOS Diet Book, in it they say that the normal person should have 300 carbs per day (I forget the unit) and the woman with PCOS should have 225. In the initial stages of Atkins, they drop to 25-30 carb units per day. You see how extreme that is (admittedly, the initial stages are extreme, but there's never a need to go there.)
I'm not a big carb counter, and my PCOS isn't not wildly out of control. Why? Not entirely sure... but I do pick complex carbs if at all possible. I get whole wheat bread, cook with whole wheat flour (atta in India), try to buy whole wheat or grain pasta, avoid white rice, breads, etc. I do eat too much sugar, I'll give you that, but for at least some stuff I substitute honey instead. If you're newly diagnosed or just newly resolved to do better controlling your PCOS, I'd start there.
Now, as for soy, I didn't really get any in my diet in America when I was diagnosed. My family is not big into tofu, and probably the only soy stuff we ate was baco bits and soy sauce... and I personally loathe soy sauce. But I found honey roasted soy nuts pretty good, so my mom would buy that for me as a snack...
They recommended soy to me over ten years ago because soy is estrogen-like and women with PCOS often have low estrogen. Now they don't recommend soy at all. In fact if you have PCOs, cut soy out of your diet. Studies have now shown the artificial estrogen stuff in soy is detrimental, not beneficial, to balancing out your body's own estrogen.
If you're a vegetarian and feel you need soy, at least greatly reduce it. Also, I've read beans, especially lentils (dal in India) cannot be recommended highly enough. So if you use soy for protein, just switch to beans or lentils. The PCOS Diet Book says you can't overdo beans.
I was on the birth control pill for years. I am also totally scatterbrained and perpetually broke so I was always forgetting pills or refills or not being able to afford it. Eventually I went off it for years, only to have a fibroid or polyp cause a never ending period, which needed a biopsy, which combined with BCP made it go away....
New findings are now finding that birth control pills are bad for women with PCOS. Out of Germany comes the news that women with PCOS taking birth control pills have their risk of heart attack go way up. And in general, from a hormonal perspective, the way to be healthy and as close to cured as you can ever be with PCOS is balance out your own natural hormones as best as you can...
Birth control pills totally make this impossible. For one they're not tailored to your deficiencies and balance. Different women with PCOS have totally different imbalances with their hormones. But if the pills are delivering a similar wallop of the same hormones, it might just skew you further out.
The other thing is, the big giant sign of whether you are doing well hormonally for most women with PCOS is if you ovulate. Birth control pills are designed to stop ovulation. So you're not giving your body a fighting chance to get to the right place.
That being said, while I never plan on going back on birth control pills personally, I do think as a stop gap measure, they have a purpose. From my experience, they can slow down the acceleration of untreated PCOS... but that's all they can do. They do nothing to improve it at all, and may even be detrimental not only to your PCOS but your heart. But if your symptoms are getting scarily, wildly out of control rapidly (which happens) then maybe going on BCP for a few months while you try to figure out a new approach could be sensible.
Some women and many doctors swear by birth control pills. But as I said, very recent studies (multiple) are finding it's just not good for us, and I bet in another decade the doctors will be like if you have PCOS, you shouldn't be taking birth control pills as standard practice.
So of the advice I was given at 16, the only advice which remains current (and has been tried and tested) is lose weight. But with all that other advice thrown out, how do you lose weight? [Note: some women with PCOS aren't overweight. So I don't want to say that they all are needing to lose weight. But most are, and you know where you are, right?]
It's hard. (Unless you move to India, apparently.) I tried and tried and tried to lose weight. And never succeeded. At all. PCOS makes you cling to the weight you've gained. And I 100% believe that in some cases (my own included) the PCOS causes the initial weight gain. Many doctors dispute this, I think because the medical community is trying to war on obesity and the idea that this disease causes weight gain makes them feel like they're handing a carte blanche to the woman with PCOS, instead of making her take responsibility for her weight...
Also, I think with many women they do get PCOS because of their obesity, that is, just like with a ton of other things, obesity has increased her risk of getting PCOS along with a ton of other diseases, and she got it. But many women, myself included, got PCOS and it made them obsese, not the other way around. So if you think that's you, don't let your doctor tell you it's impossible. It's not.
I was always a normal weight until I was 13, when suddenly I ballooned up 50 pounds in 3 months. And this was right after my last big growth spurt (I stopped growing at 14) so it wasn't prep for that. I had made no changes in diet or exercise. No reason for it to happen.
However, my periods were already irregular.
Care to connect the dots?
Doctors are notorious for not thinking their patients with PCOS are trying hard enough to lose weight. I'm a member of several PCOS communities, and this is a common cry. Unless you're losing weight, the doctors blame you. But lots of women with PCOS are trying extremely hard and not able to get it off...
You know if it's true or not. Ignore them, and listen to yourself. Are you trying? Yes? Then just ignore the doctors, they're not there when you're passing on seconds or working out. No? Then you need to regroup and try, because if you can succeed in losing weight, you can improve your PCOS drastically.
This is my PCOS wisdom, from having it for so long. See, most women don't find out they have PCOS until they're trying to conceive so most women my age with it don't have my long standing history, so realize I've had time to think this over.
I think the reason weight loss helps PCOS is not just loss of fat, though that's a wonderful part of it. Fat has something to do with estrogen and throws the balance off farther.
I think it's this: when your hormones are out of balance, it's pretty much impossible to lose weight. But if you're losing weight... your hormones must have struck a balance. And if you continue to lose weight, it will only get better because of that fat thing. Plus, the more muscles you have (if you're exercising) the better you process insulin, and the less insulin resistance (which is part of the weight fight) that you have...
So while you might be trying really hard to lose weight, if you're not succeeding don't let anyone, especially yourself, discourage you. If you're not losing weight, it means your hormones need to be balanced better, not that you're not putting forth effort.
This is, of course, assuming you are putting forth effort. Come on, you know if you are or you aren't.
So how do you improve it?
Typically through medication and diet changes. Many people find help through herbs as well.
Some diet changes I'd highly recommend, some from experience, some from research:
-cut out simple carbs. Switch to all whole grain products, as much as is possible. In addition, it's recommended to lower your intake of these products, but I personally haven't found it necessary.
-reduce processed foods. Period.
Most everything I've seen about women who have successfully controlled their PCOS shows eliminating most processed food was part of their journey. Sure, they are way more convenient, but they're probably also making you sick.
You can do that. I'm not saying totally cut it out, because that's really hard. But if you can, GREAT. But reduce. Learn to make some stuff from scratch. Read labels, some products aren't so bad...
But actually, there's research that possibly links PCOS to plastics (BPA and all, I'll talk about that again in a minute) so maybe one reason processed foods are so bad is actually the packaging!
-go organic. Can't afford it? Try the farmer's market or advice I've seen on the internet: wash veggies and fruit with a solution of 3 parts water to 1 part vinegar (then you can rinse with water until any smell is gone). Apparently this removes the vast majority of chemicals from the skin and will make more conventional produce healthier. Some think pesticides and chemicals cause PCOS.
-avoid genetically modified crops if you can. It's nearly impossible, and it's not greatly labelled, but if you can, do it. This is suspected to be a culprit as well.
- avoid meat and dairy loaded with hormones and/or antibiotics. This is mainly for people in America, but I think China is also a big violator of this one. Again, go organic if you can. Grass fed meat can be had for a hefty price. Some milk now says 'hormone free' so you can look for that, though the FDA isn't currently regulating that claim. Still, if it's proven to be a fake claim, they can still suffer liability, so most companies wouldn't put it on there (in the US) if it wasn't true. (Here in India almost no law suits are effective, so people claim whatever, but the food seems to be healthier, so it doesn't really matter.)
If you can't avoid these products, consider eating less of them. As I said earlier, it's being recommended that people with PCOS can't have enough beans and lentils. Consider replacing several meat dishes per week with meatless meals with beans or lentils. They are high in protein, so nutritionally they are a great substitute and have the added benefit of being proven to be better for women with PCOS.
- cut back on caffeine. Okay, personally I still drink tea, and have never been a coffee drinker. But a lot of women with PCOS and a lot of research says that this is what women with PCOS should do... some even go so far as to say you need to cut it out entirely. I think that's extreme, but I think if you're a caffeine addict aiming for a third of what you currently consume is probably a good goal.
- drink spearmint tea. I personally drink a blend of green tea and spearmint, since green tea is loaded with anti-oxidants and has been promoted to help weight loss... and (gasp) it also has caffeine. Spearmint is really the recommendation though. It's promoted to reduce testosterone, so I wouldn't make your husband/boyfriend a cup, but I like it and I think it's had a positive impact in my health. My testosterone is normal as of my last hormone panel.
- substitute sugar when possible, and cut down on sweets in general. Yes, this sucks, and as I said, I'm not great at it. But some good changes are like adding honey instead of sugar to hot drinks. You can also look for other healthy substitutes like agave nectar, molasses, and stevia. Even pure maple syrup is good, in that it doesn't spike blood sugar like just regular sugar does.
Some people advocate calorie free sugar substitutes like aspertame and splenda. Personally, there's been enough crazy stuff I've heard about aspertame I say if possible, run, run, run far away. It's a nerve toxin. But splenda I've used from time to time. And I will indulge in sugar free stuff without checking what it is, from time to time. I don't think in very small doses any of the approved sugar free substitutes will kill you. I mean, if you're totally addicted to coca cola and you think you can switch to diet coke but can't imagine not having soda at all anymore... hey, it's a step in the right direction. But it'd better to switch to a healthier beverage like tea (maybe sweet tea made with honey?) because avoiding man made chemicals is a good idea for all people with PCOS.
- have cinnamon. Okay, some people take cinnamon pills, this is an herbal treatment that supposedly does wonders. But for a less regimented approach you could simply choose to make cinnamon friendly things or add cinnamon to stuff more often. Some example, instead of having pie, make a baked apple in the microwave by hollowing out the core (leave the bottom if you can) and adding some cinnamon into the hole created. You can also put in sugar (or a substitute) though some apples are sweet enough not to need this, butter or a little oil, or graham cracker crumbs depending on your own taste. Another example is just adding cinnamon to oatmeal (yummy whole grain breakfast... lol). Or, in a lot of Indian dishes, cinnamon is an ingredient, so I might just add an extra amount to up my dosage.
Also, there's something going around the internet about cinnamon and honey. Google it, it looks interesting. But it recommends just mixing the two together and eating it by the spoonful, or adding water and drinking it first thing in the morning. Studies have shown lots of health benefits, including weight loss.
- have tumeric. This one has also been showed to help women with PCOS, and my Indian diet is loaded with it, so it's possible that this is part of the reason the move to India has helped me so much.
Okay, I know that's a lot, and I don't want you to be overwhelmed. Pick a two or three and start there. And there's plenty more advice out there, this is just mine right now.
In addition to this I recommend:
Exercise, especially weight training (not always meaning lifting weights, also can use your own body, like squats- just try to build up some muscle, because muscle makes your metabolism lift and helps insulin process better and a little more muscle might be just what you need to tilt your hormones towards healthy.) But do a healthy balance of lots of different kinds of exercise, and try to find what you can actually stick with!
Join a PCOS community, because seriously rare is the doctor who can really give you the right encouragement and advice at the same time. There's lots of them on facebook, that's where I am, and there's a famous forum called soul cyster you could google. I never really got into it, but I did join a while back.
See an endocrinologist, or at least an ob-gyn. Don't rely on a GP ever, they know squat. Ob-gyns know a little, since only women have PCOS. But PCOS is an endocrine disorder and endocrinologists actually get training in it specifically. (Though, and I know this is a bias, if you have a choice I'd try to find a relatively young one, since obviously ten years ago they knew very little about PCOS, so if they are too far out of medical school, they only know what they've educated themselves on recently. Still if they have plenty of PCOS patients, they could be an expert so I'm not saying older endocrinologists should be dismissed entirely!) If you're trying to conceive, or even if you're not, finding a reproductive endocrinologist is especially recommended, but I've not done that myself.
Consider medication like metformin, myo-insitol, or others. You'll soon learn about these if you keep looking into it. Do your own research on top of whatever the doctor has told you, as PCOS is a rapidly growing field.
Consider herbal treatments. I haven't done it, but on the communities I've met women who have it under control through herbal and homeopathic remedies and it might be a possibility for you too. What I'm doing right now is working for me, my last hormonal panel only showed one hormone out of whack (my thyroid) and weight loss is easy for me now. So I don't feel like I need to mess with this, but if it got skewed again in the future, I probably would look further into it.
Don't spend all your time on the PCOS communities. Yes, I know I just told you to join one, but a lot of the women come and post to communicate their despair and distress at the bad stuff, and if you spend too much time at it you'll get depressed or paranoid, I swear. But they're still totally worth joining, as I've learned so much more about this disease since I have.
Do what works for you. There are many different methods for getting your PCOS under control. And your PCOS is actually uniquely yours in that your imbalance and symptoms are probably totally different from mine or anyone elses. Some women consider their "irregularity" because each month they vary by 5-10 days... some women are like me and can have periods from as far apart as 18 months (or longer for others) to as close together as five days and have never had a regular cycle, ever. EVER. As I said, some women have never had weight gain, others are enormous. Some women have every symptom, others just a couple. Some women don't even have cysts on their ovaries! (It's not a required symptom, despite the name.) Some women conceive easily, others struggle for decades and never do... So just focus on yourself, encourage others, and do what you know you can. I believe in you, that you can find what works for you... but it might be something you stumble on... like me moving to India!