Imagine going away to summer camp. You’re having the best time, meeting new friends, doing fun activities, and basically having a week-long sleepover of awesomeness. Until you get home and realize that you’ve dropped quite a bit of weight in that short amount of time…..and then gained it all back in the same time.
That was me and my parents started noticing this yo-yo weight loss/gain during my summers of being 13 & 14. The first summer, we thought, maybe it’s just a lot of exercise that I was getting during that week away. But then I gained it all back in a matter of days, which was the most eye-opening. When I was 14, we first discussed this with my pediatrician. After checking the boxes of “doesn’t have”, we settled on insulin resistance, and advisory to meet with an endocrinologist to do more investigating. My levels of testosterone, which were previously very high came down quickly with medication.
After months on a waitlist to see this saught after endocrinologist, he immediately looked at my tests and said, “It’s not insulin resistance, it’s PCOS. Insulin resistance is a symptom of PCOS”. It was very briefly explained to me in medical terms that I didn’t understand. Essentially, my body (like someone with diabetes) was struggling to create insulin on my own. So after trying and trying and trying, the dam broke and my body overproduced. I was put on a high estrogen birth control, told there was no cure and went on my way. This birth control is now quite controversial as it has since been linked to blood clotting and other serious issues. At the time, when I shared this concern at 16, I was informed the wife of the doctor takes birth control, is fine, and it’s ultimately my choice.
I felt so fucking overlooked, confused, and like a patient number. I never returned to that doctor again.
My body was changing like most teens experience and I had additional hormonal changes going on that I couldn’t get a hold of. The information out there was SLIM, maybe 4-5 results on Google. All saying “no cure” and offered very little explanation. My mom recently shared how concerned she was for me during this time, as I once was so overcome that I hid in my dog’s crate and had a full meltdown.
I really started a “fuck you” phase after this. I hated PCOS, hated that I wasn’t petite like my friends, that I grew hair on my face unlike my peers, and just lived in denial. My parents really respected my sadness and frustration, offered me positive options for food and exercise, and didn’t really suggest another type of doctor until my junior year of college. This was a holistic doctor. Again, didn’t really explain much of what PCOS is, and how it affects my body internally, but put me on a lotttt of vitamins. Ultimately, it wasn’t feasible financially nor for my college lifestyle to take 20 pills each day.
At this point, I found some information on PCOS outside of the 4-5 articles…all of which were on PINTEREST. Can you imagine looking on a website that we typically use for fashion & recipes for helpful information about your health diagnosis?
It wasn’t until a few years after college that my mom suggested a doctor of integrative medicine out of a local hospital. I agreed to go and mom came with me. I was living with PCOS for nearly 10 years before a doctor said to me “it’s insane no one talks about this because it affects 1 in every 10 women”. I broke down in tears, as I shared that after 3 doctors and zero information available, I thought it was just me. That I was broken and rare with this incurable disorder.
It took me a whiiile to recognize that I wasn’t alone and the comfort that brought me was overwhelming. I felt like I was finally getting the information, support, and proper care that 14-year-old me deserved.
While at 14 my insulin was unstable, it’s now nearly perfect. PCOS is still incurable, but I’ve been able to identify things that work for me and there are still a lot of ways I still need help. For those who do not know, PCOS is defined by Johns Hopkins defines PCOS as “a condition in which the ovaries produce an abnormal amount of androgens, male sex hormones that are usually present in women in small amounts. The name polycystic ovary syndrome describes the numerous small cysts (fluid-filled sacs) that form in the ovaries. However, some women with this disorder do not have cysts, while some women without the disorder do develop cysts”. It’s difficult to diagnose as it can present itself with a number of symptoms. Some are: not menstruating, acne, obesity, facial hair growth, infertility, etc. However, you don’t need to check all boxes to qualify. For me specifically, I struggle to menstruate more than 2-3 times each year, difficulty with weight loss, facial hair, and hair loss on my head.
With more than 15 years under my belt, I’ve tried it all: birth control, metformin, red light therapy, acupuncture, massage therapy, reflexology, numerous supplements, dietary changes, etc. I have since learned of sorority sisters, co-workers, friends, and family who have been diagnosed during this time. I’m now the go-to for symptoms and conversation. My journey with PCOS has pushed me to learn more about my body, how it responds the stress, adaptogens, gut health, and what it means for my body to be well.
I wanted this to be my first in-depth wellness post on Meg’s Full Plate, so you understand more about my story, drive to learn more about the world of wellness, and know that I’m always a friend to talk to.