I overcame years of fear to finally get a PCOS diagnosis
I OVERCAME YEARS OF FEAR TO FINALLY GET A PCOS DIAGNOSIS
Now, I’m sharing my story to help other women take control of their health
(Due to the sensitive nature of this topic, the author of this post wishes to remain anonymous.)
Fair warning — this story is going to get pretty personal. And I want it to. I want to share my PCOS story because it feels like closing a chapter in my life — a very long, painful, complicated chapter. But being this candid is tough for me. There are parts of my story that I’m embarrassed by, because I let PCOS run my life for a long time before I had the courage to take control.
So here it is. I had symptoms for 16 years before I saw a doctor about it. Yeah that’s not a typo.
The title of my story tells you that I made it to the coveted “diagnosis” side of this condition, a place that takes some women many years of doctors and tests to get to. But for me, it was the very idea of being diagnosed that kept me from seeing a doctor for years.
I got my period when I was 12. I was watching a Spice Girls concert on pay-per-view, got up to use the bathroom and saw a spot on my pants. My mom, true to her open, liberal, hippie nature, was beyond excited and saying things to me like, “You’re a woman now!”
I was like, This is dumb. I was pissed. My 12-year-old self had absolutely no desire to talk to my mom, or anyone else, about sex or periods. I just wanted to watch Spice World and focus on Ginger’s fabulous sequined boots.
I knew that my mom had super intense periods, and I wanted absolutely nothing to do with that. And for about the first four years, I didn’t. My period was pretty normal, but then it stopped. I mean, completely stopped. From the time I was 16 until I was 21, I had absolutely no period.
And as messed up as it sounds, I was soooo happy. I was like, Yes! Dreams are coming true, I don’t even have to worry about it anymore! Looking back now, I know it was irresponsible to ignore the signs of my body and continue acting like nothing was wrong, but at the time I saw my period as problem that was suddenly solved. Not having a period became my new normal.
I lived blissfully without a period for about five years. And then the flood gates opened. When I was about 21, my period came back. And it didn’t stop for eight months.
My flow would range from spotting, to steady, to I-absolutely-can’t-leave-the-house-today heavy.
But again, I normalized it. I figured hey, I didn’t have a period for so many years, it makes sense that now I’d experience the opposite.
For the next 10 years, I lived in a constant state of re-normalizing the symptoms I was experiencing.
My period is super irregular? Well I’m completely stressed out because of college, or a job, or a family/friend situation, so that must be it. I’m gaining weight quickly? Whatever, I’m going to find a new pair of bomb-ass jeans to fit my new size. I’m really tired? Well I’ll just go to bed at 10 and drink an extra cup of coffee tomorrow. My skin is super oily and I’m breaking out? Ok, well, this is a side effect of literally every stressor in a woman’s life.
Adaptation is a survival tactic engrained in women’s brains. I heard once that when a woman has a child and that child grows, the mother’s body just becomes incrementally used to carrying the growing weight of that child. A mom can hold her child for hours and hours without getting tired, but if she were to pick up another child with a varying weight, she’d get tired very quickly.
My symptoms felt like my child. I had been holding onto them for so long that I didn’t know what it felt like to not be tired, to not have unpredictable periods.
Ironically, it was the predictable chaos that gave me a false sense of control over my body. I never wanted to see a doctor about my symptoms because I hated needles, I hated the sterile atmosphere, and most of all I hated the chance that I could walk into a doctor’s office completely loving the person I was and walk out with a diagnosis that could shatter my positive self image and leave me feeling sick, weak, or abnormal.
Finding my voice
When I was 32, my symptoms started getting worse to the point that I could no longer excuse them. I had really weird, aggressive hair growth on my chin, and I couldn’t go two days without removing it. One day when I was lazy and hadn’t plucked the hair, I was having a conversation with a coworker and I could see the person looking at my chin instead of my eyes. I was so humiliated that I left work, went to a drugstore and bought a razor, went to the bathroom, and used lotion as shaving gel to try to remove the hair.
Luckily, I had a close friend at work who opened up to me about her really difficult pregnancy, and her openness gave me the courage to start talking about my periods. It had been 16 years since my period started and I had never talked so another person about them.
I told her everything.
She immediately said, “You need to see a gynecologist.”
I realized in that moment that I was living in this comfortable darkness where it was easy to trick myself into thinking there wasn’t anything wrong.
She gave me one year to make the appointment. And I wish I could say I did just that, but it’s not true.
A few weeks later, I went out to dinner with friends while I was having an I-can’t-leave-my-house period. I could only wear black jeans and had to change a super tampon every hour and a half. The restaurant had fabric booths, and when I stood up to leave, there was a massive red stain. I was mortified. I quickly paid and then darted out of the restaurant, and vowing never to go back again.
I remember getting home, going to the bathroom, and being covered in blood. That was the moment when I thought, Enough.
It was time to start paying attention to my body and taking care of myself.
That night, I told my mom about everything I was going through. As if it was something I should have always known, she told me, “Oh, well, PCOS runs in our family.”
A light bulb flashed, and I felt relieved because I finally had a name to put all of these symptoms to.
I finally went to the gynecologist, and ended up loving her. She was super funny, sassy, and she didn’t scold me for waiting so long. The whole exam was pretty quick. She listened to all of my symptoms, tested my blood for indications of PCOS, and ended up putting me on birth control to regulate my periods.
I realized that my fear of going to the doctor and being pushed into a situation where I had zero control was completely unfounded. I turned out feeling the opposite — I was so empowered when I left the doctor’s office.
My OB-GYN put me on birth control immediately, but I went to a few different clinics to get blood tests, a pelvic exam, and an ultrasound to rule out cancer and other conditions. It was combination of my symptoms, the ultrasound and my family history that helped my doctor confirm I have PCOS
Today, it’s been less than a year since my diagnosis, but I’ve seen such a life improvement since I’ve started working with my doctors. Saying “I have PCOS” makes me feel like I have so much more control than saying “I have no idea what’s wrong with my body.” It’s that feeling of confidence, of taking control and knowing you’re doing the things you need to do. That confidence translates to other parts of your life.
There’s no cure for PCOS, but the things I’m doing have made me feel much better. I get regular blood tests to check my hormones and cholesterol levels. I take birth control, which has evened out my period and given me a sense of routine that I was never able to have before.
And it’s not perfect. I still have one or two days each month when I have really bad cramps, but it’s much more manageable than before.
I’ve also realized how important it is for women to have open, honest conversations about our bodies. There’s this whole trope in our society that women are masters at making suffering look beautiful. And if you think about it, women’s lives are punctuated by pain. We accept that we’re going to have pain with our periods, having sex for the first time, giving birth, going through menopause. We’re primed to experience pain. We just need to talk about it more so we don’t end up feeling completely alone.
For anyone reading this who is suffering in silence from a health condition, I can’t stress enough how important it is to talk about it, especially with your doctors. Sharing your experience lifts an incredible weight off of your shoulders and can hopefully give you a support system when you need it most.
I may not be ready to shout my story from the rooftops or add my name to the byline of this story, but I’m able to share it with my closest friends and have built an incredible relationship with my doctors. And anonymous or not, I hope my story can inspire others to find their voice.