Chapter 1. The First Hurdle: PCOS

It was August of 2020 and we had already been trying for about 8 months with no luck, and very little signs of a normal menstrual cycle. Before this, my Dr. hadn't suspected anything wrong from my blood work other than a slightly elevated prolactin level which was easily managed with medication. With the amount of time we had already spent trying plus always having to kick start my cycle with provera, I finally agreed to get an ultrasound. Just to rule it out, I never actually thought I had PCOS.

It was quick, easy, and painless.

I vaguely remember getting a call from the Dr's office at work, and I missed it. I listened to the voicemail with my heart pounding, but they didn't reveal any of the results, they wanted me to call back to discuss further. I don't remember a whole lot from that conversation other than the nurse saying "you do have PCOS", everything else I blacked out.

I remember asking her, "well how severe is it? Can I do anything to get rid of it?" She responded with "there is no mild to severe, you either have it or you don't, and there is no cure". And that's when I realized I knew nothing about this acronym.

PCOS stands for Polysystic Ovary Syndrome, and is one of the most common causes for female infertility. You have to meet two of the three criteria to be diagnosed: 1. irregular or no periods, 2. higher levels of androgens in the blood, 3. polycystic ovaries visible on ultrasound.

But even at the time of learning I had it, I still wasn't convinced. After all, the only thing I previously knew about it was that it was most prevalent in obese women. It was shocking to learn that me, at 112 pounds, was now put into this category with other women who didnt view their health the same as me. I grew up in the healthiest eating family and learned from an early age how important food and exercise was.

Shortly after we learned of this new diagnosis, we started to feel acceptance and relief, because now there was an actual reason we were not getting pregnant. I felt like it gave us some direction, and my Dr. did as well. She immediately started me on Letrozole, which is a popular fertility medication, especially for women with PCOS and irregular cycles. We were so excited, and felt like we were making huge steps forward, but we knew this could be a long road.

I'm going to go out of order here, and take it back to March of 2020. A lot of people immediately think of Covid hitting when you say that date, but I will always remember a specific Dr's appointment I had the week before the first Covid case in Sioux Falls. Remember, this was before we knew anything about PCOS, and at that point had been trying for only about 3 months.

I vividly remember this conversation with my OB, and she strongly felt that I needed to gain 10-15 pounds so my body could learn that I was capable of carrying a baby. She told me to eat whatever I wanted for a couple of months, ice cream, full fat anything, just focus on gaining weight!

Along with that, she wanted me to cut back on exercising, as she suspected that I was overdoing it. For the record, I was not and my husband can attest to that. I did a variety of activities, but for cardio, I was only running 1-2 times a week and 3 miles at the very most.

I followed her instructions though, and enjoyed eating whatever I wanted. It was actually really fun. And for a while, I cut out running completely. Not for long though, I soon realized that I needed to advocate for myself. I felt like it was too extreme to just stop working out, and decided to take her words with a grain of salt. Because no one knows me better than myself.

After 6 weeks of this, I had a virtual visit with my OB, and she was extremely happy to hear that I had gained at least 10 pounds and was feeling good. I still didn't suspect anything was wrong, just that my body was on birth control for so long that it needed some time to really adjust, and perhaps I wasn't at an appropriate weight.

We continued to try, and month after month I was still not having a 'normal' cycle on my own, it was always prompted by medication and of course ended with a negative pregnancy test.

Now, back to the diagnosis in August. Although we were so excited to be taking steps forward, every new piece of information I learned about PCOS kept making me feel so alone. I felt like I was the only woman out there not fitting the typical box of the diagnosis. Overweight, unhealthy, borderline diabetic, and extreme acne.

It wasn't until I did my own research that I learned PCOS symptoms can be controlled, not cured, but controlled by diet and lifestyle changes. I became even more confused as to why my Dr. never mentioned that to me, especially after I spent a good couple months eating whatever I wanted. Hormones are directly correlated to your food intake.

I was so naive, and was starting to understand the relationship that Dr's have with prescriptions, not lifestyle changes. In fact, I learned more about PCOS through people on instagram and the internet! Looking back, I wish I had gotten an ultrasound when she first mentioned it in March, but I thought I knew best at that point. I had not yet learned what it meant to advocate for my health.

I'll save my Letrozole experience for another post, but my PCOS diagnosis and progression of knowledge around it has been ongoing. You hear this all the time, but it is SO important to educate yourself, and not wait around to learn more. Find resources and people who have similar stories. Every body is different, so remember that just because she has PCOS and found a way to control her symptoms and improve her cycle, doesn't mean you will follow the same path. And just because your mom with PCOS got pregnant immediately, doesn't mean you won't struggle hard.

I have so much more to say about this topic, and if you've read this far, thank you! I know I'm not a writer, and my grammar is probably not the greatest. I'm also not looking for advice or sympathy, I simply want someone out there to feel less lonely in their confusing journey. Over time, I will reveal the rest of our story, layer by layer. And I intend to dedicate another post to how I took action on my health as it relates to my diagnosis and what changes I saw after implementing them.

Feel free to subscribe, comment, or reach out to me individually if you're struggling and need someone to talk to.

Thank you for being here, and toodles for now!

- CC

Disclosure: this post is not meant to educate you on the scientific facts of PCOS, just explain my experiences and feelings related to it. I am most definitely not a medical professional!