PCOS: Polycystic Ovarian Syndrome, or Pretty Curvy Obviously Sexy?

For National Infertility Awareness Week earlier this year, Sasha Ottey who is the executive director of PCOS Challenge: The National Polycystic Ovary Syndrome Association reached out to me as and asked if I could come up with a few fun Tweets around polycystic ovarian syndrome (PCOS). Sasha and I had met at the year before at an advocacy day event the year before and I shared with her that I had been diagnosed as “borderline PCOS” which means I’ve been “borderline fat” (or curvy) for many years now. This has been borderline annoying. “Borderline PCOS” has meant that I have trouble losing weight, I have thinning hair, I break out on my chin, I have some facial hair (although I blame that more on being Italian), I’ve had trouble getting pregnant, had ovarian cysts, been diagnosed with infertility – but where I don’t fit the profile is my periods are regular as regular can be. They are beyond on time…like clockwork.

This has, well, sucked. Even my infertility diagnosis technically is “unexplained.” To be borderline PCOS and “unexplained” means I can’t be treated. There’s no medicine for me to address going bald or getting heavier. There’s no protocol or roadmap to whatever is going on with me because I’m uncategorized. My category is just me. Whatever the hell that is. It’s like “The Muppets.” There’s Kermit, who is a frog. Miss Piggy, who is a pig. Fozzie, who is a bear. Me? I’m Gonzo you guys. I am a curvy, infertile Gonzo.

That being said, I should share that remarkably, I am among the fortunate that has two children now. One through my third in vitro fertilisation (IVF) where I literally only had one embryo to transfer and one through actual sex. (I know, right?) The “sex baby” (as Angela, my friend and fellow infertility advocate refers to it as) was truly a long shot. My egg quality sucks and I was weeks away from turning 41, so I want to be clear that “just relaxing,” not thinking about it, drinking a special tea or none of any of that did the trick. This was a lot of luck and a hail Mary sex act that resulted in a second child. At present, I’m still infertile (not to mention almost 45 now), my eggs these days are powdered, my hair is more of a mere suggestion and losing weight is like getting blood from a stone, so there will be no more children. I remain unexplained and borderline Gonzo.

So, here I am. A mom of two boys. I have PCOS (sort of), IVF weight, baby weight and I’m trying to put myself out there as a presentable human being, not to mention a woman’s health and infertility advocate. How do I do this? Well, I employ drag queen tactics. I use hair extensions, I invest in make-up (I also love the Kevyn Aucoin Books and highly recommend them for make-up tips), I have been known on occasion to invest in gel nails, I get eye-lash extensions, I wear by Spanx and I do go to the gym even though it’s incredibly difficult to lose weight – and yes, I’m very fucking bitter about that. I share all this because I work very hard to try to compensate for what I don’t feel I have. As Dolly Parton says, “It takes a lot of money to look this cheap.” Well, I hope I don’t look cheap, but the point is, I did not wake up like this – but I’m doing my level best to look like the way I wish I could look when I woke up. There have been times I’m shocked I’m not dragging around a fog machine and fans honestly.

This brings me to the lovely diagnosis of PCOS, what it is and redefining it (if we can). Polycystic ovary syndrome is a hormonal disorder common among women of reproductive age and shockingly, it is very often misdiagnosed and/or undiagnosed for far too long. Truth be told, when I’m on the New York City subways, I see women who fit the PCOS profile and think, “I really should tell her she has PCOS.” This is because sincerely, too many don’t know they have it. Again, some of the symptoms are:

1. Irregular menstrual cycle.

2. Too much hair on the face, chin, or parts of the body where men usually have hair.

3. Acne on the face, chest, and upper back.

4. Thinning hair or hair loss on the scalp; male-pattern baldness.

5. Weight gain or difficulty losing weight.

6. Darkening of skin, particularly along neck creases, in the groin, and underneath breasts.

September is PCOS awareness month and I’m writing all of this to:

1. Help spread the word.

2. Reach out to my fellow PCOS sisters in seeing if we can somehow empower ourselves from what a pain in the ass this diagnosis is.

And that brings me back to when Sasha reached out to me. What I wrote back to her was, wouldn’t it be great if PCOS stood for, “Pretty Curvy Obviously Sexy?” I mean, for crying out loud! When you have PCOS, you have so much shit to deal with that it would be great if we could find a way to take this condition and make conditionaide (if you will).

One person who I’ve been following on Instagram is Ashley Graham. Yes, yes… I know. It may be cliché as she’s become the poster woman for curvy women, but have you seen her? She’s gorgeous! There is a reason for it. And what I freaking love about her (yes, I’m having a fan girl moment) is she has cellulite you guys. Cellulite. And she’s still sexy. And she doesn’t apologize for it.

In the last couple of months, I still am using all of the tricks in my arsenal (make-up, extensions, etc.) but I have actually walked out of my house like, “You know what? I have hips and boobs and that’s OK.” It was a great feeling. Another thing I’ve done is stop looking at the size of clothes and just buy clothes that look flattering. If I look good in it, that’s what matters. All these little mental adjustments are working.

What I’m saying is PCOS is tricky. As we raise awareness, we absolutely want women to get properly diagnosed even though we know how difficult this diagnosis is. It is a big ol’ scary bummer. Your hormones will rage, you may have difficulty conceiving and losing weight. However, really, not getting diagnosed or being properly treated will be so, so much more worse. Believe me.

And while we do deal with this: There is no reason on God’s green earth that we shouldn’t feel sexy or attractive. We may have to work a little harder, we may have to think outside of the box, but with all of these hormones, if anything, we are more than the average women and we should celebrate it. At least that’s what I’m going to try to continue to do.

My final thought is this: As we advocate for our health, let’s advocate for also thinking we’re sexy goddesses too, OK?

Even if we also occasionally refer to ourselves as the weirdest Muppet of all (I still stand behind that reference).