I’m taking a huge leap of faith by making the post. At first, I didn’t want to tell anyone this because I didn’t want people to view me differently, but now I’m aware of how prevalent this condition is and how important it is for me to speak out and share this with you all. A couple months ago, I was diagnosed with Polycystic Ovarian Syndrome, but I diagnosed myself several months prior. To understand the context, we have to rewind to my freshman year of college.
Quick aside: I know people like to read my more ‘controversial’ posts like the one about fuckboys, but this is the most important blog post I’ve written because it could help you, a friend or loved one, anyone. Thank you for reading this.
The Context
My freshman year of college met me with a lot of challenges. I was severely depressed and slowly on the rise from a borderline suicidal phase (we can talk about this some other time). The transition from high school to college was a crash landing. I began missing periods, gaining weight, and had persistent and severe cystic acne. My doctors said it was because of college, and that I’d get used to it and these symptoms would go away. Missing periods was pretty concerning to me considering my cycle is religiously regular, but what concerned me the most was my acne because it was more tangible. I went to a dermatologist who prescribed me birth control pills (mind you, I can barely swallow pills) and topical medications, but I had to cut that shit out because the pills literally destroyed the inside of my body. Like seriously, if I missed my pill by five minutes, all hell broke loose in my body.
I also had dark patches on my skin, especially on my neck. It’s become a huge insecurity of mine. (Aside: Please stop mentioning it to me, y’all. I know it’s there. It’s not a birthmark or a burn ): ) My dermatologist said there’s nothing we can do about it.
Diagnosing Myself
I don’t remember when I became suspicious, but after months of irregular periods, cystic acne, weight gain, and dark patches, I figured that there had to be some cause of these symptoms, and I was frustrated that every doctor I encountered dealt with each individual symptom and not the big picture.
Ever since I was a teenager, I tried to do my own research and diagnose myself before I went to the the doctor. I do this because as a black woman, if you go into a doctor’s office and just tell them that “my periods are irregular”, they’ll just throw a box of birth control at you and send you on your way. Or even “I have frequent migraines” and they’ll send you home to take Ibuprofen instead of giving you a CT scan. It’s unfortunate that black women have to advocate for ourselves but we have no choice. Once I found out what PCOS was, I knew I had it.
What is PCOS?
Polycystic Ovarian Syndrome (PCOS) is a syndrome that affects the endocrine system and metabolism. Not many women know what it is, but it’s terrifyingly common in the U.S. 1 out of 10 women have it, and a lot of them don’t know that they have it. It’s characterized by small cysts on the ovaries, irregular periods, elevated male hormones (ie testosterone) which results in acne, excess facial hair, etc. The cause of PCOS is unknown and there isn’t a cure. If left untreated, it can lead to Type 2 Diabetes, Heart Disease, infertility, and some cancers.
My Official Diagnosis
I was diagnosed through a blood test first, then an ultrasound of my thyroid. When I went to a gynecologist, she dismissed all the symptoms I told her I had, and guessed from my blood work that I had hyperthyroidism and/or a mild version of Grave’s Disease by only looking at my TSH levels. I knew for a fact that she was wrong because I had the exact opposite symptoms from the ones associated with hyperthyroidism and Grave’s Disease. I cried from her office into my car because I was so frustrated. Lastly, I went to an endocrinologist. She was the first doctor that finally listened to me. I, an undergraduate college student, spelled out for an MD the symptoms Grave’s Disease has, what symptoms I have, that I KNEW I had PCOS, then I demanded an ultrasound of my thyroid to prove that her colleagues’ diagnosis was wrong. She did it. And of course, my thyroid gland was textbook perfect. We went back to her office to briefly talk about treatment for PCOS, then sent me to the lab to get my blood tested one last time to rule out any other diseases or conditions. When my blood tests came in the mail, they confirmed that I was right all along.
How I’m Dealing with It
It took me 4 doctors to get diagnosed with PCOS. After watching numerous YouTube videos of women with the same condition, it seems like this is common. My treatment options were 1) take pills every single day for the rest of my life or 2) change my lifestyle habits. I chose the later. Taking pills everyday would’ve made me feel like I was impaired. A barely functioning human being like a broken toy. Plus, I’d have to explain to people why I take these pills during road trips, sleepovers, etc. Now, I try to work out as many times as I can in a week, but the gym feels so foreign to me even though I used to be a gym rat when I ran track and lifted weights in high school.
I guess it’s because I’m working out for a different reason now.
Eating healthy is difficult as fuck in college when you’re broke and your campus has cheaper and unhealthier options that are more accessible than healthy foods. One of the reasons why I decided to move back home and commute to school was to have access to affordable, healthy foods again. Sometimes I slip up and eat foods that I know I shouldn’t. Please don’t call me out or anyone else out on it. It’s not an easy transition, and we don’t all live in California where I can easily ask for a lettuce bun on my burger without the staff getting annoyed.
From now on, I’m trying to eat more protein and fats and less carbs. Cutting potatoes out of my diet has been painful, and I’ve decided I am not permanently cutting potatoes out. I’m here for a good time not a long time. If you see me ordering french fries or getting seconds of mashed potatoes at Thanksgiving, mind your business.
For some women, PCOS completely controls their life. For me, at least right now, it’s just an inconvenience. I won’t bust into flames if I don’t go to the gym this week, and I won’t be hospitalized if I eat a bacon cheeseburger on a non-gluten free bun. (I’m exaggerating btw) That doesn’t mean my symptoms can’t worsen.
I’ve been really struggling with my eating habits lately because I honestly don’t know how severe my PCOS is. After all, my periods are getting back to normal and my face has cleared up, so how would I know? I’m going to see a Nutritionist this week to get some answers.
I chose to write a paper about my diagnosis for my Medical Anthropology class this semester, and through it I’ve met quite a few girls that have similar experiences as me with PCOS and other reproductive/endocrine conditions by just the fifth class meeting. We shared and laughed about the shitty doctors we’ve had and how we’re coping with it all.
Takeaway
If you’ve read this far, thank you again. If you’re a woman reading this, trust your gut in the doctor’s office. You know your body better than anyone that went to medical school does. If you’re a woman of color, advocate for yourself in order to get the health care you deserve. Everyone else reading this, watch after your sisters, friends, partners, mothers, daughters, etc. Hopefully this could inspire you to get checked if you think something is off and broaden your awareness of this common illness. And lastly, I am okay. I’m not a victim of this condition. It’s honestly just another fact about myself to share at Getting-to-Know-Each-Other activities during Syllabus Week, alongside the fact that my favorite show is Stranger Things.