PCOS: My Story
Polycystic ovary syndrome (PCOS) is a genetic, hormone, metabolic and reproductive disorder that affects up to 15% of women in the U.S. (over 20% in some parts of the world). It is one of the most common human disorders and the most common endocrine (hormone) disorder and cause of infertility in women. It can lead to lifelong complications, psychosocial disorders, type 2 diabetes, cardiovascular disease, endometrial cancer and other serious and life-threatening conditions.”
pcosawarenessmonth.com
When you’ve reached your wit’s end with unexplained symptoms, you’re feeling crazy because your mental health remains unstable despite all your efforts to fix it, and you start to blame yourself for your “broken” body and mind, you’re willing to try anything. You try fad diets, whatever trending beauty products you can get your hands on, and even start to look outside your own religion for spiritual solutions to fix your so-far helpless and entirely unwarranted depression and anxiety.
“Maybe, if I could just lose this weight, I won’t be so fatigued anymore and my joints won’t hurt so much.”
“Maybe, if I can establish a decent skincare routine and find the money to go and get waxed consistently, I can finally manage this cystic acne and facial hair.”
“Maybe, if I can just deal with the chemical irritation on my scalp from this hair treatment meant for adult men, I can stop my hair from thinning at the ripe old age of fourteen.”
“Maybe, if I try hard enough, I can look and feel normal.”
It’s rough on its own. Then, you go and add the stresses and pressures of puberty and a typical teenage life, and it becomes hell.
I was fifteen years old when someone else, my dear Mom, pointed out the hair loss for the first time. We were out of state visiting family and I took a picture with my cousins on the swing set in front of their grandparent’s house. Afterwards, Mom pulled me aside to look at it and pointed out that my usually thick hair had fallen flat on the crown of my head and that it didn’t look quite right. We decided that day that I needed to see the doctor.
I wasn’t too thrilled about this idea— in my experience, doctors loved to just hear my complaints, tell me to lose weight, and then come back if my symptoms persisted once my BMI was back in the healthy range. I was twelve when I complained about joint pain to the doctor for the first time. My hips hurt so bad all the time and I could feel the joints pop when I walked. I got the usual “lose weight” lecture and was sent on my way. That was the point at which I’d started to slowly lose hope for answers and solutions.
I had tried to lose weight, don’t get me wrong. I wasn’t big on exercising so I tried to fix it through food: better food, less food, no food at all. Nothing worked.
Nevertheless, I went with Mom to the pediatrician later that summer and explained everything to her. By this point, I’d already turned sixteen and my self-image was at an all-time-low. Mom thought it might be a thyroid issue, as hypothyroidism runs in her family, so the physician assistant ordered a round of blood tests to look at my hormone levels and such. I thought back to my six-year-old self, undergoing blood tests and scans to see why I was showing clear signs of puberty in the first grade. I dreaded blood draws now.
We went back to the office when the results came back, and my PA told us that she was going to refer me to the women’s health clinic in the same hospital. “I think I know what it might be, but this isn’t something I can diagnose you with quite yet. They can run more specialized tests there.” Little did I know, she had PCOS too.
My chart and labs were forwarded to the clinic and we made an appointment for later that week. The gynecologist had already reviewed my lab results and ordered an ultrasound, which I was much more excited for than the blood draw. After she came back to the room and sat down across from me, she smiled and said, “I know what the problem is. And once I explain it, it might sound scary, but I can tell you that you’ll be just fine. I deal with it too.” She said I had polycistic ovarian syndrome, and that there was no cure, but that once we found a suitable treatment regimen, it would be easy to manage. After explaining her own health history, Mom was unofficially diagnosed with it too and we were told that I inherited it from her. I could’ve cried from the relief.
I started on the birth control pill and remained on it for the next four years. It regulated my periods, fixed my acne, and helped me stabilize my weight. I gained confidence in my outward appearance and lived with less pain. But on the inside, I was falling apart quicker than ever.
My mental health took a nosedive after the first year or so, and only got worse from there. My general anxiety had morphed into a beast that threw me into panic attacks with no clear trigger and eventually prevented me from eating outside of my own home. Heavy food smells in restaurants made me nauseous and I started sitting in the seat closest to the door in classrooms and lecture halls just in case I had to run out to go throw up. My poor vagal nerve was struggling to keep up and every once in a while I’d randomly black out for seemingly no reason. The depression stayed hidden most of the time, but when it reared its ugly head, it went from bad to worse nearly instantly. In as little as five minutes, I could go from my normal self to an emotionless shell with no appetite, unable to sleep, and always on the verge of tears for no good reason. Sometimes these “episodes” would last a week or more.
But hey, I got a regular period and my acne had gone away.
It wasn’t until I was twenty that I put the pieces together and figured out that the birth control was to blame. I switched prescriptions a few times but eventually quit it cold-turkey without telling my doctor. Shortly after, I found a new nurse practitioner who took me seriously when I said I didn’t want any more pharmaceutical hormones, but would try literally anything else, so that’s what we did. She ran more blood tests, which I was very used to at this point and had no qualms about, and found that my blood sugar and insulin levels were very far out of the normal range. She diagnosed me with insulin resistance due to the PCOS and started me on Metformin— my personal miracle drug.
Today, my hormone levels are within healthy range and my A1C is where it needs to be. I’m on a twice-yearly routine of monitoring scans and tests for diabetes, heart disease, endometriosis, and uterine, ovarian, and cervical cancers. I still deal with stubborn fat, slightly irregular periods, and facial hair, but my heart, kidneys, pancreas, and brain are healthier than they’ve ever been. I won’t know exactly how my fertility was affected by it all until I actually start trying to get pregnant, but my odds look better now than they did when I was sixteen.
Without early diagnosis and treatment, nothing about my current health would be possible for me right now. All it took was three women— a physician assistant, doctor, and nurse practitioner— who were compassionate enough to hear me out, take me seriously, and look for answers. They empowered me to take charge of my own health and to prevent my symptoms from controlling my day-to-day life. I got lucky. With a diagnosis at sixteen, I’m in the minority of women who are diagnosed with PCOS before they reach adulthood.
In fact, an estimated 50% of women who live with this condition are living completely undiagnosed.
There are women living with inexplicable chronic pain and mental illness symptoms. Women who wonder why their body hair is dark, why they grow facial hair, why their voice is so deep, why they’re well out of puberty and still dealing with cystic acne like they did in middle school. Women who have to diet just to maintain their weight and can’t seem to lose a pound no matter what they try. Women who suffer with the constant questions of “Why can’t I seem to get pregnant?” and “Why do I keep miscarrying?”.
Nothing about this condition is easy, and the lack of awareness, research, and literature doesn’t help. Perhaps one day symptoms won’t be overlooked and misdiagnosed. Maybe one day we’ll even get a cure. Until then, I’m content to continue on my mission of raising awareness for PCOS and advocating for women’s reproductive health and wellness.
