I Didn't Know I Had PCOS. | The Odyssey Online
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Health and Wellness

I Didn't Know I Had PCOS.

Many people suffering with Polycystic Ovarian Syndrome have no idea what's happening to them.

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I Didn't Know I Had PCOS.
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It is a truth universally acknowledged that "Fuck a fucking menstrual cycle."

Honestly I don't know a menstruating person without at least one horror story about their period. We've all got them from the early days. The puberty freight truck. The Red Badge of Courage.

My mom, freaking angel that she is, made sure I was prepared: she bought me a thin book with a blue cover and the word "Period." written on it, accented by a bright red dot. I read it and I felt enlightened. Like I was sure, with this wisdom, that I knew everything I needed in this life. At the age of twenty-whatever, I still actively use the "hang your uterus upside down" pose that that book taught me for relieving menstrual cramps. That book (along with a ton of detailed help from Mah) made me feel like i could take on anything Aunt Flo threw at me.

And then I started missing periods. Multiple in sequence. And when they would return, they were full of vengeance, and clots, and a record SEVENTEEN days of bleeding -- just enough to slap anemia on me. Being the perfectly well-balanced, not at all anxious person that I am, I started researching. The menstrual cycle is controlled by the pituitary gland, which triggers the production of estrogen and progesterone. My period was out of whack. Therefore -- pituitary tumor, obviously. (Disclaimer: I do not now, nor have I ever had any type of tumor. I'm just an anxious garbage person).

I started growing more hair on my body than was normal for me (and, as a card-carrying, black-hair-armed Puerto Rican, that was a lot). It was a condition called hirsutism, which caused thick, plentiful hair to grow on my body. As one of those kids who got stretch marks as a present just for turning 12, I was horrified. I had plenty of body issues on my own without excess hair growth and a randomly spouting vagina. My skin became oily and difficult to manage. I was exhausted and moody and had slowly been gaining weight despite how active I was.

When the periods stopped altogether and instead I simply produced a thick, dark, tar-like sludge in lieu of my normal red-brown blood, I panicked even harder. Convinced myself it was ovarian cancer this time. How could it not be? Doesn't anyone know that I'm the most unlucky person in the world? I'm menstruating liquid asphalt! Validate me!

It didn't matter that I'd been to plenty of doctor's over the years who had given plenty of vague nothings about what was happening to me. I finally got an answer:

I had PCOS. And I had no idea what to do.

Polycystic Ovarian Syndrome is a shockingly common hormonal disorder which can cause a plethora of symptoms -- or hardly any at all. It is experienced differently by anyone who has it. And as there is very little definitive diagnostic criteria, it is especially hard to pin down without unnecessary testing.

Even the facts about PCOS in the recent years have been up in the air. While many PCOS-sufferers do have trouble becoming pregnant, the first doctor I ever saw about it informed me that, because of my condition, I would never be able to have children.

I remember going to the beach to star gaze with some friends the night I found out. They were all cis men. They could not possibly empathize with the gravity of the situation. I didn't even think I wanted kids -- but I found myself straying from the group after a particularly intense talk to stand in front of the dark ocean and cry over my newfound barrenness.

It wasn't until years later that a physician finally told me that a PCOS diagnosis is not equivalent to a life of sterility.

Like -- thanks for the information six years after I've built my existence around the tiny fact that my broken reproductive system won't allow me to create life. JK though. Here's some birth control. And start using more condoms. (Not at once. Don't ever use more than one condom at once, friends.)

It's been a couple of years and a shocking number of different birth control trials (I. Hate. Birth Control.), but that was the only treatment I was given. I go in for routing blood tests to make sure that I'm not developing signs of Type 2 Diabetes, and occasionally i end up with a tube stuck deep inside of me checking for cysts (Pro tip: keep your bladder full so they don't have to catheter you because Jesus Christ.) But that's it. No treatment plan. No options to consider other than my pretty white/blue/green pill to take in the morning and the sudden realization that I could indeed end up pregnant.

I have friends who suffer from it now, as well. I was able to predict my best friend's eventual diagnosis years before a healthcare provider ever said the words out loud to her. When I mention it now on a particularly hairy (ha) day to another person who suffers with the condition, it's like, an immediate bond that cannot be broken. They get the pain and the frustration and the occasional D&C you have to endure to continue being a living person with a menstrual cycle.

And it may sound far-fetched if you aren't familiar with what is generally referred to as "Women's Health Issues" (though this is an othering and cis-sexist phrase that I do not currently have an alternative for), but PCOS is one of many conditions affecting menstruating individuals and those with "female" reproductive organs that has no real treatment. Nothing close to a cure. No focus or attempts at better understanding that are widely available to the public or anyone outside of the scientific community.

We are drowning in our own mixed-cocktail of hormones and, if we're lucky enough to get a diagnosis at all, we get thrown a package of birth control pills. Like, for forever.

I truly have no idea what the game-plan is for once I've aged past the safe range for use of contraception. Or for when/if I decided I'd like to have biological children. And for many people, this vague and uncertain future is something we have in common. For now, what we can do is stay on top of our health and attempt to live the lives we've set out to.

For you, the best thing you can do iseducate yourself. You never know whether you or a loved one will need the information.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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