My PCOS Journey Pt 1

September is a busy awareness month: Childhood Cancer, Prostate Cancer, Sepsis, National Sickle Cell, Head Lice Prevention, National Yoga and more.  Who knew yoga needed a national awareness campaign? Also, whoever is spearheading that campaign needs to ramp up their message. Until a quick search, I was not aware of the awareness.

September is also the month for PCOS awareness, which I am aware of. So with the planets in alignment (or something) here is my own PCOS story:


I have a confession to make. Despite TTC (trying to conceive for those unfamiliar with the infertility shorthand) for more than ten years, I've never been big on TTC blogs, vlogs and the like. I've read some personal stories strictly from women with what I have, PCOS (Polycystic Ovarian Syndrome), in the interest of 1. what it's been like for them/what to expect/validation and 2. what might help. This condition, affecting 1 in every 10 women, is common and commonly misdiagnosed/minimized/dismissed. Almost every step forward I've taken for my health and fertility has been because of my own research, with the exception of one doctor.

And after years of improved blood work, being told I was doing exactly what I needed to, but not gaining any ground on the fertility aspect, I was told to adopt. To clarify, this doctor is an endocrinologist, but not a reproductive endocrinologist. The former you see for a variety of endocrine issues, diabetes, thyroid, etc, the latter you see to get knocked up. Insurance will cover the illness part of my condition, it will not cover the more expensive attempt of knocking someone up. I guess tens of thousands of dollars to do it medically doesn't make sense when so many people do it in the back of a car/bar bathroom/friend's couch with little more than a flavored malt beverage as an expense.

To back up a bit, PCOS has been at play long before I was married and thought I should spend my down time changing diapers and cleaning vomit out of my hair. I started missing periods by the time I was 15, but didn't understand why, and frankly as bad as felt when I did get my periods, I was grateful not to be in the fetal position for several days a month and walk around school afraid I was about to look like an extra from Carrie. And yeah, it was literally that bad. A 13 year old shouldn't have to carry a backpack full of pads to get through the day and still worry about that not being enough. But I just assumed that's what periods were for everybody. All the women/girls I knew complained about cramps. I just didn't realize that mine were off the charts.

It wasn't until the end of my freshman/beginning of my sophomore year that I talked to a girl a year ahead of me and somehow she mentioned that she sometimes didn't get her period for months at a time either. Thinking this was just something some girls went through, I continued to let it go and it never really came up at any doctor visit. Now I can't even be seen for a sinus infection or flu shot without a nurse wanting to know when my last cycle was. And then I get to explain to an annoyed nurse, unfamiliar with this condition, that no, there literally is no chance that I could be pregnant and no I'm completely ignorant of what a missed period would ordinarily indicate. Every.single.time.

Around the beginning of college is the first time I ever heard the term PCOS. I had been seeing the same doctor since the end of high school who finally took notice of how irregular my periods were. It's hard for me to give this woman very much credit. She mentioned PCOS in passing without any info, what it meant, what it caused, if it could be treated. Just that she thought I probably had it. She also balked at giving me my first pap smear. When I asked if I needed one, she told me I should at my age, but she knew I wasn't sexually active. She tried to convince me not to do it because she didn't want to take my virginity. "What about when you get married?" She worried. As a medical professional, she was assuming a lot of things, such as I wasn't lying about being sexually active or a virgin (I wasn't, but plenty of people do). And as a medical professional, she was also potentially putting my health at risk by being more worried at her social norms and morality. My lack of periods could have been a sign of other medical conditions (including cancer) which should have made a pap smear a no-brainer, but hey, if you sleep better because you didn't check me out until after I got married, that's just fine. Uh, no. Also, at a later date and when I was seriously ill and not responding to several rounds of antibiotics, this woman thought I had cancer, but didn't tell me. Moving on...

So this PCOS thing was in the back of my mind for a few years. I had no real idea what it was or if I needed to do anything for it. I got married. I guess that makes my pap smears officially sanctioned, but I had already moved on to another doctor. As a young adult learning that just because you have health insurance doesn't mean you can afford to use it, my fertility wasn't something I was really worried about. To my chagrin now, I was more worried about my husband and I getting pregnant before we were ready, and thankfully our insurance covered birth control. I had been on birth control in college, as the crazy lady doctor put me on it to regulate my periods. Married without insurance and then just married and broke meant bc pills came and went, and I eventually went more than a year without a period.

Ah, the good old days. When I didn't get a period for a whole year and naively didn't have the slightest idea about the ins and outs of what my body needed to be doing on a regular 28ish day cycle.

To be continued.