Wouldn’t it be lovely if the world was that clear-cut? Alas, it isn’t. The most commonly-used name for this disease leads to the misconception that having polycystic ovaries is all that defines the condition. But that old idea just doesn’t reflect reality.

Recent research in both the US and the UK is, thankfully, changing the discussion about PCOS. The prevailing guidance is that a woman likely has PCOS if she has a preponderance of symptoms within the syndrome cluster, even if she doesn’t have cysts on her ovaries. Why? For one thing, cysts can come and go over time. A firm diagnosis can’t be made after a single exam. Secondly, many healthcare professionals are, frankly, operating on old information. They follow the rules they learned in medical school and don’t always have the time or inclination to keep up with the latest research. A woman can have PCOS even if her ovaries don’t produce cysts. I know because I’m one such woman.

Not necessarily. Many PCOS patients struggle with weight issues, but not everyone who has PCOS is overweight. I wasn’t overweight until I went through IVF at almost 40. Going by my symptoms, I’ve struggled with PCOS for over 20 years. My 35 pounds of “baby weight” has been nearly impossible to lose.

The truth is that PCOS affects a woman’s metabolism, which is why many of us struggle with weight issues. Whether a woman has always been heavy or has put on weight with age, etc., having PCOS does make it harder to lose weight. But it’s not impossible.

Ask any fitness expert the secret for healthy, sustainable weight loss and you’ll get the same answer – diet and exercise. That’s especially true for those of us who struggle with PCOS. Maintaining a healthy weight is important for everyone; but for us PCOS Cysters, it also helps us manage our symptoms.

It would be great if there was a magic pill or a spell or one particular diet or exercise plan that worked for everyone, but no such panacea exists. There are plenty of nutrition plans out there, so do some homework and find one that works for you. Try several. Work with a dietician. Hire a personal trainer or join a gym if you can afford it. Or just stalk Pinterest like the rest of us to find free exercises you can do at home using your body weight to build muscle. Walk the dog. Heck, walk the cat. (And if you do, please post pictures! I want to see that, and to know how you did it so I can apply your technique with my cats. They could stand to lose a few pounds too.)

The point is that weight loss IS possible, and it’s super important for those of us suffering with a chronic illness like PCOS. You just have to decide you want it bad enough.

Uh, no. Some patients (emphasis on the 'some') find relief for their PCOS symptoms by taking birth control pills. Think of the pill like taking a Mucinex for your cold. You've still got the cold, it's just easier to live with after a hefty dose of decongestant. The difference between a cold and PCOS, of course, is that a cold will run its course and then go away. PCOS is a chronic condition, which means it never goes away. Symptoms can be better or worse throughout the course of your life, but you're stuck. I hate to be the bearer of bad news, but there it is.

Keep in mind that PCOS is, at its root, caused by hormonal imbalance. Taking out your plumbing (hysterectomy) doesn't change your underlying hormonal structure. True, you won't have periods anymore, and you won't have children; but all those chemicals that you had swimming around in there before surgery are still there. There's no miracle cure for PCOS.

You know what? I'm just going to be honest here. You may have an awesome doctor who knows exactly what he or she is talking about. I hope you do, because you deserve that. We all do. But, it's important to remember that doctors are people too – no magic powers, no super-human infallibility. They make mistakes. They get busy. They get stressed. They get consumed by things going on at home. Like other career professionals, they get so comfortable in their routine that sometimes they don't stay abreast of the latest research. Does this make them bad? No. Does it make them incompetent? In most cases, no.

So what's my point? Simply this: You are the only you there is. Your healthcare, to a large extent, depends on you. A chronic condition like PCOS requires the patient to become educated. Google it. Ask your doctor for good patient resources. At the bottom of articles you read, look for sources, and go read those. Join a social networking group (or several) and ask other patients questions. Become a student. Learn to think critically about everything you read and hear.

When you go into your doctor's office, take a list of questions and observations with you. Pay attention to how your body responds to changes in diet, exercise, and medication, and be prepared to talk to your doctor about them. Make sure s/he listens. If your doctor is inattentive or dismissive, give 'em the Trump line: "You're fired." (Ohmigod, I just quoted Donald Trump. The world might officially end soon. Stay tuned.)

There are a lot of Web sites out there to help you find a good doctor in your area. We have a list of recommended doctors here on our site! Every doctor was recommended by at least one Cyster after deciding that they were knowledgeable and helpful in their plight to manage PCOS. Check it out HERE. A few to get you started are: www.ratemds.com, www.healthgrades.com, www.vitals.com, www.webmd.com, and www.consumerreports.org. Don't trust one source, but cross-reference sources, and don't forget to ask those around you who they see and what they think of that person. You deserve a doctor who remembers what while he or she has tons of technical training and experience, you're the only person who lives inside your skin. You know things about your body and how it operates that no one else could possibly know. At the end of the day, whether or not you get a good result matters more to you than it does to anyone else. Don't take that lightly.

This is a broad category, and I'm not even supposed to be talking about fertility in this post, but there are a couple of general guidelines I feel very strongly about. Here they are:

Having a period doesn't mean you're fertile. In order to have a chance at conception during any given month, you have to ovulate. With PCOS, you might or you might not.

Having PCOS doesn't necessarily make you infertile. Someone women with PCOS conceive and deliver fairly easily. Some have trouble, but are able to manage with medical intervention of some type. Some wind up Involuntarily Childless.

Because many women with PCOS struggle to get an accurate diagnosis, and then struggle further to find an optimal treatment plan; it's important that women and girls with PCOS don't ignore the fertility piece. Your fertility is heavily influenced by your hormones, and PCOS monkeys with your hormones. So having PCOS is kinda like playing Russian roulette with your fertility whether you want that to be true or not.

• DON'T take it for granted that you'll someday be able to conceive and deliver children.
• DON'T assume "It'll all work out whenever it's supposed to."
• DON'T you dare believe those old wives' tales like, "Well, drinking pineapple juice (or whatever other silly thing you stumble across) worked for So-and-So" or "So-and-So had a baby at 42, so I can too!"

I'm here to tell you from personal experience that such assumptions lead to debilitating heartbreak for some women. Take charge of your healthcare and your future. Make sure you're doing what YOU need to do to find the right healthcare providers, put together the right treatment plan, and make the lifestyle changes necessary to maximize your health. If you think you might want children some day, give serious thought to your plans for future family. Talk frankly with your doctor about how to protect or improve your fertility. Don't leave it up to chance, because with PCOS, you just can't afford to be that careless with your health or your future.