Here it is; my first post. When my sister (hey there, Abbie) first mentioned the idea of starting a blog, I dismissed the idea. What would I talk about? Who would care to listen? The more I thought about it, though, the more the idea grew on me. How awesome would it be if I could use my struggles to speak into the lives of others, even if it’s just one person? I hope I can at least spread awareness of PCOS and shed light on the disorder’s prevalence. Whether you’re here because you have PCOS, chronic fatigue, or some unknown illness; whether or not you have any idea what I’m talking about, or whether you’re simply here because you know me, I hope you’ll read on.
As forewarning, you might learn more about me in this post than you wish to know, but that’s the point. PCOS is an uncomfortable subject and one many prefer not to talk about, but it’s time we change that with open conversation. So, without further ado, here’s my story from the beginning.
PCOS: Polycystic Ovarian Syndrome. It’s a hormonal disorder common among women of reproductive age. So common, in fact, that it affects about 1 in 10 women. The disorder is distinguished by at least two out of three of the following major signs: irregular periods, excess androgen (testosterone) and polycystic ovaries. PCOS is complicated because it affects women in different ways, meaning that symptoms present in one individual may be completely absent in another, or visa versa. Common symptoms of the disorder are: hirsutism (too much hair on the face and body), acne, headaches, hair loss on the scalp, weight gain and difficulty losing weight, darkening of the skin in certain areas, and depression. Further complications can lead to: fatigue, miscarriage, infertility, mood disorders, metabolic syndrome, diabetes, insomnia, sleep apnea, endometrial cancer and obesity. Obesity is associated with PCOS and because of this, doctors often fail to diagnose PCOS if a patient doesn’t “look the part.” The reality is that women of all shapes and sizes have the disorder.
In June of 2017, at the start of a fantastic summer working at a children’s camp in Maine, I started experiencing symptoms. It began with headaches; where before I only got headaches once or twice a year at most, they now came upon me with increasing regularity. By July, I woke up nearly every day with a headache. It also became a regular occurrence that I had to sprint to the bathroom any time I needed to pee, and I ended up getting tested twice for a UTI (it came back negative both times). I began noticing increased acne but attributed it to long days outside, I noticed that I was losing more hair in the shower but didn’t think much of it, and I started feeling extra tired but connected it to the fact that I was working with small, often difficult children for up to 10 hours a day. I also began gaining weight, but I figured that was because I had become more relaxed with my eating (this was true, but it certainly wasn’t the whole story).
An important thing to know about me is that I love being active and working out. Every summer since I was four, I have participated in a sport or was active on my own: swimming, tee ball, softball, basketball (which was a disaster), and finally volleyball, which I played year-round from the age of nine until attending college at 18. I took up my own rather extensive workout routine for a couple of years until joining triathlon club in the spring of 2017. Swimming, biking and running for anywhere from 6 to 12 hours a week became the new norm. It may sound extreme, but I did it because I enjoyed the challenge, met amazing teammates and, as a bonus, felt incredibly fit. I ended up becoming Vice President of the club halfway into the semester and carried on with the workouts into the summer, which brings me back to Maine.
At the start of the summer, I managed to keep up my routine despite working more than full-time hours at camp. As the weeks went by, however, it became more and more difficult for me to fit in workouts due to how tired I was. Motivation began waning as well, and before long I had trouble getting myself to do anything after the camp day was over. One day, I felt so shaky and light headed I had to miss work, and another evening I was so overcome by the same symptoms coupled with exhaustion that I was in bed before 9:00pm on a Friday. I didn’t wake up until after 9:00 the next morning.
I did manage to compete in a short race that summer, but I fell off the training bandwagon pretty soon after. Now, don’t get me wrong, I recognize the need for breaks and there’s nothing wrong with them, but I could tell something was off. I reached the end of the summer feeling guilty for my lack of motivation and still experiencing the aforementioned symptoms, so I scheduled an appointment with my doctor.
The other thing you need to know about me is that I haven’t had a regular period for years. In fact, it’s been rather non-existent. Until very recently, my time of the month had become my time of maybe-once-or-twice-a-year, and even then only when induced by birth control pills or progesterone (a hormone produced in the ovaries). So, when I walked into my doctor’s office complaining of new symptoms and still presenting without a period, I was given blood tests and then told I had PCOS. I didn’t know what to think, but I felt a bit scared and intimidated (especially following a good ol’ Google search…the internet becomes a terrifying place when you’re searching anything related to sickness). My doctor discussed medicine that would start my period again, but didn’t have any help to offer in regards to my other symptoms. My mom and I set up an appointment with an endocrinologist a few weeks out, and I went off to my senior year of college, hopeful that the symptoms would work themselves out.
I was soon to learn otherwise, but that’s for the next post. If you’ve made it thus far, I both applaud and thank you for reading through it all! And if anything I wrote here has resonated with you, I encourage you to reach out and to share this with others – you never know who it could help. Meanwhile, if you would like to learn a bit more about me, check this out.