Polycystic Ovarian Syndrome (PCOS) is the most common hormonal disorder in women of reproductive age. It can put those affected at risk for serious health conditions including high blood pressure, heart disease and diabetes. PCOS can also cause infertility, a loss of hair on the scalp, excess body hair, acne and weight gain.

The disorder affects between 7 and 10 percent of women of childbearing age.

I am one of them.

During my sophomore year of college, I noticed I was getting more acne around my chin and jawline, but attributed the breakouts to high levels of stress, abnormal sleep habits, poor diet and alcohol. My teenage years were plagued by irregular, heavy periods and obvious mood swings.

Sitting in my doctor’s office, alongside my mother, I was diagnosed with PCOS after a dermatologist with the disorder suggested I get an ultrasound. I was 19. I was told I would face fertility issues. To reduce side effects, I was prescribed birth control. That was it. The conversation ended there.

I wasn’t informed of the common mental-health issues associated with PCOS. I didn’t know depression and anxiety — both of which I experienced a few years later — are reported by women with the disorder at a higher rate.

I didn’t know the unwanted facial hair under my chin was a common symptom. Instead I joked the hair was a reflection of my grandmotherly habits.

The reality was that I knew very little about the disorder I was living with.

The number one issue facing women with PCOS is awareness, or lack thereof, says Megan Stewart, founder of the PCOS Awareness Association. Stewart says the absence of information surrounding the disorder comes from staunch disagreements among those within the medical profession.

“A lot of medical professionals aren’t well versed [with PCOS],” says Stewart. “So when they see the symptoms, they may equate it to thyroid complications, or even Hashimoto’s disease.” She also attributes the more than 50 percent of women with PCOS who go undiagnosed to the same disconnect.

Ricardo Azziz, an obstetrician-gynecologist andfounder of the Androgen Excess and PCOS Society, says the greater disagreement comes with how broad the definition is.

Everyone can agree that individuals with excess male hormone effect, polycystic looking ovaries and absent ovulation have PCOS, but, he says, “the larger question then becomes: Do people with just polycystic ovaries or irregular ovulation qualify for PCOS? Or is it the combination of the [three]?”

Because of its broad definition, Azziz says speaking to the specific combination a patient has is both necessary and beneficial in determining a proper diagnosis and treatment plan.

One woman, who asked to remain anonymous, says many of her insecurities stem from PCOS. Diagnosed at age 18, she says she’s struggled with weight loss, adult acne and visible hair loss, which has affected her the most.

“It’s been extremely difficult,” she says over email. “It started when I was 25, [and] it’s gotten so bad that I have to wear a wig now. It’s without a doubt been my biggest challenge.”

Sasha Ottey, executive director of PCOS Challenge, says PCOS patients face specific difficulties tied to their mental health and well-being. Many women often report feeling inadequate due to unwanted hair growth, body fat and fertility concerns, she says.

“Across the board, women with PCOS have been given a disservice because a diagnosis isn’t being made, and once they do get [a diagnosis], there’s a great dissatisfaction in the care and treatment options,” says Ottey. “Unfortunately, many physicians aren’t equipped to know how to advice patients once they do give a diagnosis.”

Ottey’s organization is working to improve the narrative surrounding PCOS — for both medical professionals and patients — with the introduction of H.Res.495 in the U.S. House of Representatives. When I spoke to her on the phone, she was en route to Washington, D.C. to speak on the topic.

It’s the first such resolution to mention PCOS and is asking for more research funds, additional care options and for September to be designated as PCOS Awareness Month.

While writing this piece, I struggled to find an appropriate conclusion. Should I point readers towards a network of support systems? Should I urge them to call their representatives? Should I encourage those living with the disorder to speak up, to begin a conversation? Instead, something Stewart said during our conversation came to mind.

“The number one thing is awareness: be your own advocate, be aware of your own body. And find a support system.”

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