Most girls get their period at age 13. Not me. I was almost 15 years old. Based on what I learned in school and what I heard from friends and family, I was anxiously awaiting and dreading the moment when I became the girl with the embarrassing spot on the back of her pants. However, that never happened. My period was different. It was unpredictable. It was either the unwanted house guest that never left OR the person who tells you they’ll be at your house in an hour and never shows up.  Some cycles were accompanied by cramps and clotting, while others never even required the use of a pad.  I would go through the typical hormonal changes that signal the arrival of a period, but there was no guarantee that a period would follow. I could count on one hand the number of times I received a surprise visit from every girl’s unwanted friend.

I never hid the fact that I didn’t have a regular period, but in retrospect, I don’t think I was very open about just how irregular it was. I always knew that something was wrong, but I was never really compelled to address the issue. Menstruation is what turned girls into women and allowed us to be able to have children. I wasn’t in any pain and my quality of life was not impacted. In my mind, I was simply someone who had irregular periods.

I was 17 when I started going to the gynecologist. This was a rite of passage for every teenage girl who was either sexually active and/or preparing to go away to college. The visit was pretty routine. The gynecologist reviewed my information and then paused upon seeing that my last menstrual cycle was more than 2 months ago. She questioned whether or not I was pregnant, and then suggested that I go on birth control to help regulate my cycle.  There was no discussion of underlying causes and there appeared to be no real concern. For the next 18 years, each visit was the same. I went with the flow, whether or not there was one. It wasn’t until age 36 that I reached a turning point.  My GYN unexpectedly passed away and I had to find a new one. It wasn’t until I started seeing a new practitioner that I finally found out what was going on.

When my doctor uttered the words, “you have Polycystic Ovary Syndrome or PCOS”, I can’t say I was surprised. Three women (that I know of) on my maternal side share the same diagnosis. I had some prior knowledge about the condition, but nothing in-depth. Thanks to the Internet, I was able to learn a great deal about this hormonal disorder that is characterized by: inconsistent or lack of ovulation, increased male sex hormone production, the presence of cysts on the ovaries, weight gain, fatigue, unwanted hair growth, thinning of the hair, acne, infertility, mood changes, pelvic pain, sleep problems, and headaches.

Every woman has a different experience with PCOS. Some are asymptomatic, while others may have one or more symptoms. For me, PCOS was all about my period. I had bloodwork drawn and went for a transvaginal ultrasound within a few weeks of my diagnosis. There was no evidence of metabolic syndrome, so diabetes was not an issue.  The radiology report showed a slightly thicker than normal uterine lining, but nothing alarming.  And of course, my ovaries contained fluid-filled sacs which is consistent with PCOS. My doctor and I created a plan of care and that included a prescription for progesterone if my cycle did not come on its own, as well as weight loss and consuming a healthier diet.  No other follow up was required outside of my annual exams.

So here I am, 38 years old, and I’m a Cyster! My conversations with my GYN have shifted from casual to concerns about egg viability, infertility, and a predisposition to female-related cancers.  I don’t know what the future holds in regard to my reproductive health, but if you get nothing else from my story, get this: pay attention to your body.  As women, we are often told that we worry too much and that we are overly dramatic. Don’t accept that! You live in your skin 24 hours a day, seven days a week. Your body talks to you all the time. You know when it’s imbalanced, just like you know when things are in perfect alignment. And don’t allow healthcare providers to treat you like a textbook case. You are an individual and you require individual treatment. Do your research, understand your condition, and take an active role in your health and wellbeing.