PCOS: My Ovaries Are So Classy They Wear Pearls

By Caitlin Seida 

To anyone who’s read my story on Salon.com, I’m already speaking what you know: I have polycystic ovarian syndrome (PCOS). A lot of women have written me telling me they have the same. An equal number of women have written me asking for more information on the syndrome and wondering if they should ask their doctors for tests because of their symptoms. Today, you’re going to get the nitty gritty about PCOS, what it looks like and what you should do if you think you might be one of the estimated 350 million women (source) affected by this disease.

What it Is 

Cysts are little fluid filled sacs. With polycystic ovarian syndrome, cysts can accumulate on your ovaries. Sometimes women with PCOS have no cysts at all (wrap your head around THAT one!), sometimes the
number of cysts reduces or increases based on hormonal changes. Sometimes the cysts burst in a painful bout of misery that leaves you crying for your mother and cursing your female anatomy. One of the first clues women with PCOS have may be highly irregular or missed periods - going more than 28 days without a period, skipping a month, or going far less than 28 days between periods. Again, it all comes down to hormones. Speaking of hormones, women with PCOS almost always have high levels of androgens - these are erroneously called “male” hormones (like testosterone), but women make them too, just in smaller amounts. When you’ve got PCOS, the levels of testosterone, estrogen and progesterone (the latter two being typically “female” hormones) are all out of whack.

What it Looks Like 

Copyright Tony Alter, Used under a Creative Commons 2.0 License

 The bitch of it is, PCOS looks and feels different for every woman. As I mentioned, some women never experience the (ahem) joy of ovarian cysts. Some women have painful, heavy and long periods. Other women have short, light and almost non-existent periods. Thanks to the androgen levels, some women experience excess hair growth in areas where there isn’t typically any - on the upper lip, stomach, chest or back for example. Other women find that they’re losing hair in a way that makes them look like they have male pattern baldness. A lot (but not all) women notice extra and sudden weight gain - especially around the midsection. Acne, oily skin, dry skin, and dandruff are all possibilities. Some women suffer from skin tags (little blips of skin that pop up, usually where body parts rub together like the armpits, neck, or bra line.) Anxiety and depression, if not already present, can get worse. Some women experience a symptom called acanthosis nigricans - where patches of skin around the neck, arms, breasts, thighs or knees look thick, dark brown or black and are velvety to the touch. Because it’s all related to YOUR individual hormonal balance (or imbalance, as the case may be), the symptoms are so widely varied from person to person.

Best Friends 

The bad news is, PCOS often (but not always) comes with co-morbid conditions. What this means is that PCOS has a bunch of little buddy syndromes that hang out with it. Insulin resistance is a common one. Insulin is hormone that helps regulate blood glucose levels. Your body becomes tolerant of the normal dose your body produces, and your body has to make even more of it to keep your blood sugar levels regular. So you end up with this excess store of insulin in your body. It can make you feel tired after eating, generally fatigued and yes - it can make it feel almost impossible to lose weight. This puts you at risk for diabetes in the future, if not managed properly. Women with PCOS are at a higher risk of having high cholesterol, high blood pressure, sleep apnea and heart problems. Although the link is shaky, a lot of women with PCOS also experience hypothyroidism

Let’s Talk About Sex (Babies!) 

Copyright flickr.com/Agryopoulos, used under a Creative Commons 2.0 License

Women with PCOS usually figure out they have the condition when they’re trying to conceive - but as I’ve explained, the syndrome has much more to do with your overall health than whether or not you can get pregnant. But for a woman who dreams of having a family, a diagnosis of PCOS can seem like the end of the line. The good news is, there are treatments available to help women with PCOS get pregnant, and the sooner you seek help, the better your chances are. Young women who are diagnosed with PCOS are often - erroneously! - told they’ll never have kids. It’s just not true folks - I’ve got a “surprise” 17 month old daughter who, according to doctors, never should have existed. If you’re not one of the PCOS “cysters” who wants children - ALWAYS USE BIRTH CONTROL! And if you are wishing to be a mama, it’s important to keep tabs on your PCOS even after you get your little bundle of joy - your health depends on it. Really.

So How Did I Get It? 

You didn’t catch it from sex, or a dirty toilet seat, or eating the wrong kind of ice cream. Simply put: Nobody really knows what causes it. There’s a suspected genetic component - my mother and I got diagnosed at the same time - and there’s a thought that hormones in food, or changes in diet, or stress, or exposure to a million and one things theorized to cause PCOS. But really? Nobody has a clue. So don’t beat yourself up over it and don’t let your doctor (or anyone else) make you feel like this is YOUR FAULT. It’s not. If you want to blame anyone, blame those damn hormones that are out of whack.

Diagnosis 

Copyright Walt Stoneburner, used under a Creative Commons 2.0 License

Getting a diagnosis is as simple and as complicated as visiting your doctor. She or he will take a physical exam, family history, do a pelvic exam, an ultrasound of your ovaries to see if cysts are present and take
some blood to check your androgen levels, blood glucose levels and insulin levels (taking care of the insulin resistance buddy, as well!). It may take several visits to get things sorted out - some women notice their doctors brush off their concerns. if that happens, seek a second opinion and don’t stop until you get answers. If you have the ability, speak with an endocrinologist about your suspicions.

Treatment 

Since PCOS is so varied in symptoms and severity, treatment depends on your individual case. Women not wishing to get pregnant find their symptoms can be controlled by hormonal birth control pills. Women looking to get pregnant have an array of fertility treatment options, but it’s important to keep treating PCOS even after your childbearing time is over - this is a life-long condition. Insulin resistance is treated in much the same was as non-insulin dependent diabetes, with a pill called metformin. If you’ve got high blood pressure or high cholesterol, your doctor may prescribe medication to lower those. But the big thing across the board is diet and lifestyle change. Insulin resistance and PCOS respond well to a low carb (not Atkins!) dietary regimen and lots of exercise. The bitch of it is, you might not see any weight loss from these things, but they’re the right things to do to help your overall health - even though it’s not reflected in the scale or the mirror.

Where to Get More Information
Obviously your first stop should be your general practitioner, gynecologist or endocrinologist. But if you'd like to do some research on your own in case your doctors aren't familiar with the problem (and many aren't!), these sites should be of some help: 
National Institutes of Health: PCOS
The Polycystic Ovarian Syndrome Awareness Association
PCOS at the Mayo Clinic
Polycystic Ovarian Syndrome Association
PCOS Foundation

Caitlin Seida has been writing since 2006, with her work appearing on various websites including Livestrong.com, TypeF.com, Salon.com, Dogster.com and The Daily Puppy. A Jill-of-All-Trades, she splits her workday as a writer, humane society advocate and on-call vet tech. What little free time she has goes into pinup modeling, advocating for self-acceptance, knitting and trying to maintain her haunted house (really!). You can find her on Facebook, on Twitter, and of course here on I Feel Delicious!