Living With PCOS, Part I

Living with the realities of Polycystic Ovarian Syndrome—usually shortened to PCOS—can be overwhelming and alienating.


Just ask Tabia from North Carolina, who speaks about living with PCOS bravely and honestly:


I’m dealing with being a bearded lady, overweight, not menstruating, and then add on depression. Depression is another side effect. […] Dealing with the emotional effects of it is more stressful than everything else because you have to face the world and no one knows. People on the train are looking at you and you don’t get a chance to explain. I can’t say: “This is why I look like this, I have PCOS.”


Given how stressful a PCOS diagnosis can be, the last thing a recently diagnosed woman should have to deal with is sifting through conflicting, opaque, or just plain inaccurate information. Unfortunately, even though the condition affects the lives of an estimated 5–10% of women, it can be daunting to know exactly what PCOS is, how to separate PCOS facts from PCOS fiction, and know just what steps to take when you’re diagnosed.

That’s where we come in. Over the course of a three-part series, we’re going to be tackling all that, plus a little extra.

So: first things first. What exactly is PCOS?


We’re going to hand the mic over to Robert L Barbieri, MD and David A Ehrmann, MD for the breakdown:


Polycystic ovary syndrome is a condition that causes irregular menstrual periods because monthly ovulation is not occurring and levels of androgens (male hormones) in women are elevated.


That might sound a little daunting, but it’s important to know that PCOS affects different women in different ways. While a diagnosis of PCOS may be a game-changer, most women who have been diagnosed with PCOS go on, to quote Dr. Barbieri and Ehrmann again,  “to lead a normal life without significant complications.”


We don’t want to sugarcoat it, though: living with PCOS can include frustrations and complications, even if all the complications aren’t considered significant by the medical community.


Cause And Effect


One of the #1 frustrations of PCOS is that its cause isn’t 100% clear.


We know; that’s not exactly helpful. But here’s what we do know.


Normally, a menstrual cycle goes like this: in the first part of the cycle, a woman’s pituitary gland increases levels of the follicle-stimulating hormone FSH. This causes the ovary of develop a follicle—think of this a bit like your egg’s escape pod. That follicle in turn prompts a surge of estrogen, which causes the uterine lining to thicken… which then turn kicks off production of a luteinizing hormone, or LH. (So many hormones.) This LH is what prompts the egg to “escape” from the ovary follicle (i.e., ovulation). If that egg isn’t fertilized, you get your period.


But when a woman has PCOS, the menstrual cycle looks a little different. Instead of one larger follicle to act as the egg escape pod, multiple small follicles appear instead. None of these grows large enough to trigger ovulation. The result? Hormone levels—of estrogen, progesterone, LH, and FSH—become imbalanced.


Again, the jury’s out on why normal ovulation doesn’t occur. There are a couple of prime suspects, however: abnormal levels of LH or elevated levels of male hormones (i.e., androgens).


Signs and Symptoms


Most diagnoses of PCOS come about because of the presence of its main symptom: irregular periods. When ovulation doesn’t occur, the uterine lining doesn’t shed. Of course, this could be a symptom of another condition, like diminished ovarian reserve (or DOR), so your doctor will probably want to do an ultrasound to check the visual appearance of your ovaries.


Normally, ovaries are streamlined and smooth, but ovaries in a woman with PCOS have a bumpy appearance due to all of these small follicles—they look a bit like they’ve been encased in bubble wrap. Your doctor might also check your hormone levels to determine if you have elevated levels of androgens, as well as measuring your FSH and Anti-Mullerian Hormone (AMH) levels.


Other symptoms of PCOS may include insulin abnormalities, excess hair on your face or chest, acne, and weight gain. (In fact, if you’re struggling with your weight or notice signs of hirsutism, you might want to consider getting tested for PCOS.)


And we’d be remiss if we didn’t include another important set of symptoms: emotional and psychological  ones. As Tabia can tell you, being diagnosed with PCOS—and dealing with symptoms like hair growth—can be difficult.


What Now?


The next step after a diagnosis is how to treat your PCOS—and we’re talking about both the physical and emotional symptoms that go along with that.


Step one: having your period at regular intervals is vital for your health—without proper shedding of the uterine lining, you’re at increased risk for endometrial cancer. You’ll want to talk to your doctor about possible options, such as getting on hormonal birth control or taking Metformin or Progestin.


The next thing you’ll want to tackle—yes, even before figuring out the best depilatory method if you have excess hair growth, or skin regime if you have acne—is your mental health. Many women with PCOS suffer from feelings of alienation after a diagnosis. Reach out. Join online forums and communities. Share and listen to stories of women like you.

And don’t just take our word for it. Tabia also thinks that this is a super important step for the recently diagnosed:

I would definitely tell them to be a part of a community of other women who have PCOS. […] PCOS is not a death sentence. It will be difficult to deal with it, but as long as you have a support system around you it makes a world of a difference.

Once you’ve joined a community—whether online or IRL—it’s time to start learning how to separate the myths from the realities when it comes to all things PCOS. Check out our next post in this series for some tips on what you can do to help your PCOS symptoms, and what advice you should feel free to ignore completely.