Six years after first hearing about polycystic ovary syndrome, I'm still not sure if I actually have it.

By Kasandra Brabaw
December 13, 2018

Every few months for the last two years, I’d type the same message to my editors: “Oh no, another PCOS period. Working from home to deal with this mess.” It was a great excuse, except it was kind of a lie.

I’m not saying that I faked sick (though I may have done that once or twice too). The underlying issue—ridiculously heavy periods with a flow so fast I couldn’t keep up—was 100% true. It’s the diagnosis I was iffy on. I’d say PCOS (short for polycystic ovary syndrome) because having a name for the ailment that kept me home felt more legit. But, truth is, I don’t know whether or not I have PCOS. Two doctors have said I almost certainly have it—and one has said I most likely don’t.

RELATED: 8 Signs You Could Have PCOS

PCOS is a hormonal disorder that has a laundry list of potential symptoms, including wonky periods like the ones I have, excess facial hair or other “male” pattern hair growth or balding, and severe acne. The condition can also cause issues like weight gain, infertility, diabetes, liver inflammation, high blood pressure, high blood sugar, and abnormal triglyceride or cholesterol levels—and therefore a risk for heart disease, sleep apnea, depression, and endometrial cancer. While doctors still aren’t sure what causes PCOS, they do know that it’s characterized by an (“male” hormones like testosterone), as well as excess insulin, according to the Mayo Clinic.

Yet, not everyone who has PCOS will have all of these symptoms. Some women who have PCOS gain a lot of weight during puberty. Some don’t. Some who have the syndrome struggle to get pregnant. Some have no issues with fertility. Some have full beards or faces covered with pimples, and others have baby-soft skin. The collection of symptoms is so diverse, it’s no wonder that doctors struggle to agree on what constitutes a diagnosis.

In my case, a few symptoms pointed my first doctor toward a PCOS diagnosis. The first time I heard the term, I was sitting in the clinic at my university. I was 21, uninsured, and had been bleeding from my vagina for nearly six months straight. I went to the school clinic just hoping someone knew how to make it stop, but the health care providers there were worried. Had I ever heard of polycystic ovary syndrome? they asked. How was my weight—had I gained a lot recently? What about hair growth?

I told them what they wanted to know: I gained a lot of weight when I was 12 and had been a “bigger” lady ever since, and my hair was maybe a little thinner than I’d like but still fine. Then, they signed me up for a transvaginal ultrasound to check for cysts on my ovaries. A few weeks later, I was lying on an exam table with an ultrasound wand in my private bits. In the end, I was cleared—no cysts. The doctors at the health clinic suggested I lose weight, and when my period stopped a few weeks later I stopped worrying about it.

RELATED: Can Ovarian Cysts Actually Be Cancerous?

What I didn’t know at the time is that even though it’s called polycystic ovary syndrome, you don’t actually need to have ovarian cysts to have the disorder. To get an , you need to have at least two of the following: multiple cysts on one or both ovaries, high levels of androgens in your blood, and irregular periods, according to the U.S. Department of Health and Human Services (HHS).

So just because my first vaginal ultrasound didn’t show any cysts didn’t mean that I was PCOS-free. Five years later, a doctor brought the condition up again. This time, I went for a checkup because I had stopped having periods. And when they did show up (usually every three to four months), they were so heavy that I had to change my pad or menstrual cup every hour. I couldn’t go anywhere for fear that I’d bleed through my pants, I was so fatigued I nearly fainted every time I climbed a set of stairs, and my hair had gotten seriously thin. My primary care doctor also noticed a dark patch of skin forming on the back of my neck, which she said was a sign of insulin resistance (it’s called ). With this combo of symptoms, she suggested I see an endocrinologist, because I almost certainly had PCOS.

RELATED: It Takes an Average of 2 Years and 3 Doctors to Be Diagnosed With PCOS

My first endocrinologist thought so too. She drew blood; asked about my history of weight gain, when my periods would show up, and how long they lasted (at that point, every three-ish months for about 10 days); and checked my skin for signs of acne or strange hair growth (the two thick, dark chin hairs that grow back every time I pluck them apparently don’t count). When my blood test came back, it showed high insulin and slightly elevated testosterone. That was enough for her, and so I had an official PCOS diagnosis.

She prescribed metformin, a drug that’s typically used to treat diabetes but is also sometimes prescribed for PCOS to help with insulin resistance. The drug would supposedly help me lose weight and get my periods back on track. The problem? She never actually sent the prescription to my pharmacy. She was cold and implied that my symptoms were my fault for having “let myself” gain too much weight. So, I chose not to push the issue. I didn’t want to see her again anyway.

A few months later, on new insurance, I met with a new endocrinologist. She did the same round of blood tests and asked the same questions about my weight, my periods, my hair, and my skin. Although everything seemed to be the same, this doctor wasn’t convinced that I had PCOS. What I absolutely did have was insulin resistance and severe anemia. The lack of iron could explain my thinning hair, she said, and periods can go wonky for all kinds of reasons. She also prescribed metformin and suggested I talk to a gynecologist for birth control, which could regulate my menstrual cycle.

RELATED: These 8 Women With PCOS Are Embracing Their Beards and Body Hair

For people who do have PCOS, birth control acts kind of like a Band-Aid. There is , according to Planned Parenthood. The best people who have the condition can hope for is a way to manage their symptoms. Hormonal birth control can help by dampening the hormones that cause acne and regulating periods, which reduces the risk that you’ll get endometrial cancer. Doctors often also suggest that -size people who have PCOS lose weight, because weight loss can help lower blood sugar, improve insulin resistance, balance hormones, and help fertility, according to the HHS.

Unfortunately, telling someone with PCOS to lose weight can be a double-edged sword given that PCOS makes it incredibly easy to gain weight and very hard to lose it—so metformin is often prescribed to help with that too. People who have excess hair on their chin and upper lip can get electrolysis and use hair removal creams to try to manage the symptom, and there are also some anti-androgen medications that may help.

For my maybe-PCOS, the treatment plan includes both metformin and birth control, as well as a recommendation to eat better and exercise more. Still, I don’t have an official diagnosis. Six years after the day I first heard about PCOS, I’m back at the beginning, waiting for a transvaginal ultrasound to once again check for cysts. The gynecologist I saw last month prescribed birth control to regulate my periods but also wasn’t 100% convinced that I have PCOS. What will cinch it, she says, is if I have cysts on my ovaries. If not, then I guess there’s no real explanation for my weird periods.

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