How My PCOS Journey Started

Let’s start at the beginning.

I have known for several years that I have this condition called Polycystic Ovarian Syndrome, PCOS. I wasn’t formally diagnosed with PCOS when I first went to the doctor regarding menstruation concerns. As I’ve learned more about PCOS, I am sure this was the concern on my doctor’s mind at the time. Since then, I have been officially diagnosed with PCOS. This post will be about my journey to get where I am now. A prologue, if you will, to the rest of what this blog will be.

Oh, high school.

I was sixteen years old when I went to the doctor to figure out why I hadn’t had a period. I’d had two in my whole life, each a year apart. Needless to say, that was concerning! I went to my pediatrician and was prescribed some medication: probably a Progesterone pill. Then I was referred to a new doctor when that medication didn’t ‘work’. This new doctor, it felt like, was genuinely listening to me. She was all the best things that I was looking for in a doctor. She was kind, answered my questions, and helped me feel comfortable during an incredibly uncomfortable time in my life. My new doctor had me do some blood work and a sonogram. I had lots of eggs that looked very normal, woo hoo! Nothing to be concerned about, I thought. Other than the fact that I was overweight and had nothing close to a regular cycle.

I was prescribed a hormonal birth control pill. At first, I thought I was cured. I was experiencing regular bleeding every month. I felt so relieved! I would be able to have kids in the future, because I finally had a consistent period.

Here’s your warning: trying to conceive has not been as easy as I thought it would be.

College & Young Adulthood.

Fast forward a couple of years. My doctor, who I loved, went on a sabbatical. I needed to find a new doctor, again. This new doctor prescribed a different hormonal birth control pill because I was experiencing migraines during my periods. The hope was, of course, that I wouldn’t have migraines anymore with the new pill. Incorrect. It seemed like a valiant effort, though, to my nineteen year old self, so I was satisfied.

Outside of the migraines, I didn’t feel unhealthy. But, as I reflect on that time of my life, I also ignored so many symptoms. The last doctor made it clear that my weight was a significant problem. There was no discussion around it other than, “you need to lose weight. This is where you are on the BMI scale.. and this is where you need to be.” Hm. So helpful. I hadn’t thought of losing weight sooner! *Cue the middle school eye roll.* I tried diets all throughout high school and college as well as different workout programs. Did I stick with these diets and programs for very long? No, of course I didn’t! I wasn’t trying diets that were balanced, healthy, and focused on the nutrition that my body actually needed. (At this point in time, I still hadn’t been diagnosed yet.) I tried all kinds of get-skinny-quick diets.. that’s what was readily available. Nothing worked for me, and I whole-heartedly admit that I did not work for the diets either. Check out the Health page, if you want to see more about diets and exercise. Because of my experience with that last doctor, I avoided going to the doctor’s office like it was the plague.

One year later, I let my hormonal birth control prescription lapse. I didn’t love the most recent doctor that I saw. I also began feeling a huge amount of shame and embarrassment about my weight. So, I procrastinated going back to the doctor’s office. This is around the time that I watched the first few episodes of a show on tv. The show was about this girl who had PCOS and I saw myself in her. I was flabbergasted. Some of the same issues she was working through were issues that I was experiencing. I didn’t know how to go about dealing with all of this new information. I checked off SO many of the symptom boxes presented on the tv show. I braced myself with notion that, most likely, I had PCOS. How did I move forward with this information, you ask? I did nothing. Not a darn thing. I was emotionally paralyzed. Sure, it was a relief to name my problem. But when I looked up PCOS, I saw scary words like; infertile, diabetes, and cancer. Also, the thought of confronting a doctor (the same one or a new one) with a self-diagnosis was terrifying.

A few of months after not taking the pill, I had yet to have a period. At first, I thought that was just fine. Periods are not super fun and I figured that having a break from them would be kind of nice. Oh boy, I did not realize that this was indicative of some BIG problems! (Again, the emotional paralysis was in full effect here. My brain and my heart could not handle the thought of this being a bad thing. I hoped it would work itself out and all would be well in the world.)

Ah, married life.

Let’s fast forward again! I’m now 22 years old in this timeline, married, and on a fast track to completing my Master’s degree. My husband and I often had discussions about how we would ideally parent our future kids. While we had these discussions, I had this lingering thought way off in some dusty, cobwebby corner of my brain that I couldn’t quite catch hold of. It was a little worrisome. I told myself that I wouldn’t forget, if it was super important. I fully realize that this sounds ridiculous. I had been in such denial about my lack of menses that, eventually, my concerns faded away. I had become so used to not having a period, that it didn’t even cross my mind anymore. I also was in the midst of a high stress season of my life: getting engaged, going to France with a group of high schoolers, planning a wedding, applying for grad school, getting married, graduating with a Bachelor’s degree, starting grad school, the death of one of my husband’s parents, and learning how to mourn with my new husband. This all happened in 17 months. Not a sprint, y’all, that was a marathon. I said this was a stressful season of life, right? Not all bad things, but high stress for a highly anxious human.

After being married for a year, my husband and I decided it was time to start trying to have kids. And then I was hit with a ton of bricks. Figuratively, of course. What was the figurative ton of bricks, you ask?

How were we supposed to try to conceive if I didn’t have a period and ovulation to track?

All of my other symptoms of PCOS were actively taking up a lot of space in my life. My prominent symptoms were: continuous weight gain despite diets and exercise, extreme cravings, constant acne, and hirsutism (the bane of my whole existence).

I had this whole mess of stuff to deal with. Plus the deadline of ‘I wanted to be pregnant, like, yesterday’! I decided it was time to suck it up, and go see a doctor. (Still no diagnosis, at this point.) Because it had been so long since I’d seen my doctor, I needed to find ANOTHER new doctor.

Good news, folks! I discovered that the doctor I loved was back.

The doctor took me on as a new patient (again). It felt like we started the whole process over again. There was some shock that I’d gone so long without a period, and we discussed my weight. I also got orders for new blood work and a sonogram. If you kept track of my journey with medical professionals, this is the same doctor that ordered those tests years ago. Guess what! Everything came back pretty normal. There was no clear explanation as to what I was experiencing other than my symptoms. Because of all of the symptoms I was experiencing, my doctor diagnosed me with Polycystic Ovarian Syndrome. I did not have to bring it up either.

I. Felt. Validated.

Then.. I was told that there was not much we could do. There were a couple of different medications to try and, as always, try to lose some weight. The two medications to try were the hormonal birth control pill and metFormin. Since I was trying to get pregnant, birth control wouldn’t be the right fit, which left metFormin. This is a medication typically prescribed for diabetes. It is also very commonly prescribed for patients with PCOS presenting symptoms. I thought, ‘heck yeah! I can throw a medication at this and it’ll go away?’ That was exactly what I thought I wanted. Six months later, I had a period. Three months after that, I had another period. Like before, I was convinced that I was cured. And again, I wasn’t cured.

This post feels a little like that children’s book series where unfortunate events happen to the characters. A series of events, if you will. With a few good things thrown in the mix so the reader doesn’t get depressed. If you catch my drift.

I was also prescribed Spironolactone to relieve acne and hair growth. This medication’s primary purpose is to be used as a diuretic for blood pressure. It also is supposed to inhibit androgens. My acne did improve, but, the hirsutism did not. All through this, I was getting blood work done about every six months to keep track of everything. My numbers were stable. Still no consistent periods. Still most of the symptoms.

Two. Years. Later.

Cue the music, lights, and confetti!

Through trial and error, I am learning what actually feels good for my body. It’s time consuming, but SO rewarding. If you’re interested in walking through this journey with me, keep an eye out for next week’s post. I’ll share about what I’m trying right now

Thanks for being here!