Until I was 25 I’d never even HEARD of [PCOS], let alone known to put all these symptoms together as one underlying problem.
It started when I was 14. My first period. And that’s when my troubles began, but not the normal period troubles a teenage girl deals with.
We all attributed the absence of my period to the fact that I was young and it takes a little bit for it to become consistent. Well, we can’t use that excuse anymore, CAN we? Thirty years old, my body isn’t exactly “adapting” anymore.
Then at 15 my first thick black hair appeared on my chin. Oh it was hilarious. I saw it and laughed, “That’s funny.” I thought to myself. Yes. So funny, Emma.
Then the acne. And the weight gain. And more hairs. I didn’t think people noticed, until one day one of my parents pointed out that I needed to get something done about the hairs on my chin. It was at that moment I realized I was unusual and I had something on my face to be ashamed of. My life became a flurry of, “we have to fix your acne. We have to fix your period. We have to fix the hair on your face.”
I was raised in Christian Science which means I was raised to think going to the doctor’s was a sign of weakness, that you weren’t “spiritual” enough or praying “properly” or “hard enough” (I have since rejected this notion entirely). Knowledge of the body and how it functions and develops was not a thing in my family, so we didn’t know that what was happening to this child was even a sign that I needed a doctor’s help. It was cause for concern, sure, but it would be brought up and then dropped when I’d get annoyed. The issue was left to fester more. None of us knew what to do. Except pray.
Not sure what good it would have done to go to the doctor back then anyway, as doctors really had (and still have) no clue what to do with a teenager who has PCOS. It might have been for the best that I wasn’t exposed to their poor solutions in the long run.
So it was left unaddressed. Undiagnosed. For many years. My parents would ask me about my period and what I was doing and my answer was always, “I don’t know.” Fast forward to age 22. The man I was dating at the time coerced me into seeing a doctor so I went to a holistic one. That was what I was comfortable with at that time. PCOS was not among the myriad of issues she diagnosed me with. So again, unbeknownst to me, I left with no answers.
At one point I underwent laser hair removal. That was the closest I came at that time to some sort of answer. The dermatologist informed me that the procedure would get rid of the hair for a little while, but what I was dealing with was a hormonal issue. I took that tidbit of information and stored it for another day.
It was at this point that I started my weight loss journey which has lead me to what I do today. I worked HARD. I did my own research, taught myself how to work out at the gym. I did ALL THE THINGS. Resources on fitness for a properly functioning body were abundant and I had 8 years of intense ballet training guiding me on proper alignment and muscle action. I was determined to look like the girls I’d seen on TV, magazines, and movies (this damaging mentality will be saved for another blog post). I lost weight. I gained muscle. I followed all the best advice to the T. Age 25 rolled around and I was so frustrated that the last bit of belly fat was hanging around and nothing I did, NOTHING could budge it. (I must note that I do not encourage this kind of perfectionism any more. I do not encourage it in myself or others. This was a time when my body image issues were at their worst).
This kind of toxic anger toward myself lead me to discover the not-so-little demon polycystic ovarian syndrome. But I didn’t figure it out on my own. Until I was 25 I’d never even HEARD of it, let alone known to put all these symptoms together as one underlying problem. One day my then non-Christian Science (thank goodness) boyfriend (different from the aforementioned) said, "Emma, what if the belly fat and lack of period are linked?”
This was the magic suggestion.
I went home and googled belly fat and no period. Three guesses what came up first. Yep. You guessed it. Polycystic Ovarian Syndrome.
My reaction was actually excitement. My problem had a name. My problem was not exclusive to me! This was a real thing. And I wasn’t weird.
I started researching and researching ways to get help. The doctor must have an answer. Haha how naive was I to the medical system. lolllll. I quickly booked an appointment with my primary care physician.
I’ll pause here for a moment. In the faith I was raised in I was taught that we do not, under any circumstances, get diagnosed because this acknowledges that an issue is real. Don’t ask. I could get into all of it, but I’m not going to here. This PCOS discovery was the first time in my life that I’d allowed myself to accept a diagnosis and I was uncomfortable with it. But I felt I needed answers, and that’s when I learned the beauty of a diagnosis: it helps you find answers, it’s the flashlight in the dark you need to find the path. This may be obvious to some, but to me it was a giant epiphany.
Back to the story: I went to my PCP and I begged him to diagnose me. He asked me why I thought I had it and I was annoyed. He checked my thyroid. It was fine. To him I was skinny, toned, athletic. Healthy at a glance. I did not understand at the time that I didn’t “fit the bill.” Maybe if I’d been larger-bodied he wouldn’t have questioned it. Sad. Just send me where I need to go already! I explained to him everything I experienced and he decided, yes, I needed to go.
I sat nervously in my first gynecologist office. It was my second vaginal exam and pap smear, the first being the holistic doctor a few years prior, so I was extremely anxious. I knew what was coming. She wasn’t particularly friendly or understanding. She questioned why I thought I had PCOS. She did the exam and sent me for a transvaginal ultrasound as that was the only way they were going to confirm if I really had cysts on my ovaries.
Fast forward to the ultrasound. It was fine. She showed me my ovaries which she described as looking like “chocolate chip cookies.” I asked her if that meant I had PCOS. She explained not necessarily because ovaries look like that right before your period. They would have to take the images to be more closely examined. I sighed. I was so impatient. I just wanted to know already.
A week or so later I received the phone call. It was my gynecologist. “You have been diagnosed with polycystic ovarian syndrome.” I asked her if there was a cure.
“No, there is no cure. We can put you on birth control, Metformin, and progesterone.” I said I had been doing my research on birth control and Metformin and did not want to take these medications as there hadn’t yet been conclusive evidence that they were helpful and not harmful.
I said yes to the progesterone because it was just a hormone. I stayed on that for several months and had regular periods with it when I timed it right. When I moved that resource ended and I was left to fend for myself again.
That’s my story. It was made harder by my sheltered upbringing, but I continually work my butt off to change that and have become much more savvy about the human body, particularly the type with ovaries. I know so many women have similar stories of isolation, confusion, late diagnoses, doctors who don’t believe you, etc. The list goes on and on. I hope my story resonated with you as you read it.