My PCOS Diagnosis Taught Me Why We Need to Advocate For Our Own Health

You know your body best.
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You know your body best.

pcos

Art Credit: Tina Sosna

Having a period is an incredibly integral part of female identity. It allows you to have children⎯the ultimate “I am woman” empowerment. Most of us women join the masses in complaining about mood swings and PMS and symbolically partaking in a pint of Ben and Jerry's (because I have my period, of course).

But I seemed to miss out on this rite of passage. Ever since I had my first period at age fourteen, my cycle has never been “regular.” All of the doctors and gynecologists I visited, up until a year ago, told me that "it's normal," and "it's not necessary to have a period every month," and "that's just the way your body is."

I wasn't convinced. I started paying attention to other symptoms that, in my mind, surely indicated my body wasn't functioning the way it should be: thicker and darker-than-normal nipple hair (sexy, indeed) and what appeared to be a treasure trail below my belly button. (I later learned this is called hirsutism.) I was alarmed that the management of these things was becoming part of my grooming routine.

Then came the acne—the throbbing, cystic type—on my jawline. I'd seen dermatologists from the time I hit puberty, and they all said this kind of acne was hormonal. By age fifteen, I had been given countless topical creams, washes, and laser treatments. They all failed, so I was prescribed birth control, which I stayed on until I was twenty-two, when I wanted to see how my body and skin functioned without it.

On top of it all, I worried about my womanhood—or lack thereof. Women everywhere were experiencing their period every twenty-eight days. Why wasn't I? What was wrong with me?

After graduating college, I moved to Texas to start a new job, and I realized I hadn't had a period in four months. My body had been cycling once every three, so the extra month without a period was alarming. My body should naturally be doing this! Frustration fueled my investigation to figure out what was wrong, and I began looking into possible diagnoses. After some simple Google searches of symptoms, I came across polycystic ovarian syndrome (PCOS). I had never heard of it before—nor had any gynecologist I’d ever visited brought it up.

I learned that PCOS is a female hormonal disorder most commonly characterized by irregular periods usually from an excess of androgens, a group of hormones that includes testosterone. The eggs that fail to be released by the ovaries collect into small cysts, which form along the border of the ovaries. Doctors have not found a specific cause of PCOS. According to the Department of Health and Human Services, up to 10 percent of women have PCOS.

I immediately scheduled an appointment with a new gynecologist to express my concerns. I showed her the hair growth and acne, and I told her I thought it might be PCOS. She agreed, but in order to diagnose me, I needed to have a transvaginal ultrasound.

The ultrasound technician said she was looking for ovaries spotted with "chocolate chips," meaning the eggs that failed to mature into formed clusters on my ovaries. And there they were on the screen above me. It was confirmed—I had PCOS. It was non-climatic, but I was relieved. The weight of my worry and fear of the unknown had lifted. Surely my diagnosis would yield a cure.

I was discouraged to hear that there was no cure—and my treatment options were limited.

My doctor had me go back on the pill to jump-start and regulate my period, as well as help lower my androgen levels. My next stop was a dermatologist. Although I received some relief from the birth control, my skin was still struggling. This dermatologist prescribed a strong topical, plus a drug called spironolactone, which is frequently used in women with PCOS to help with acne and weird hair growth. I was shocked this doctor seemed so knowledgeable after numerous before him failed to recognize PCOS.

Things went well for six months, until I started to experience a dull pain on the lower right side of my abdomen. I let it go for about two months, mainly due to another move that forced me to find a new gynecologist. But the pain continued to throb, and it almost felt like a burning sensation at times. It would flare up and then go away.

I knew that I would need another trans-vaginal ultrasound to see what was up. After some diligent research and recommendations, I found a great gynecologist in my new town and had the ultrasound done. Again, I saw my chocolate-chip ovaries on the screen, and was told that a cyst had burst. The evidence? Fluid was resting in my uterus from the "explosion," which would explain the pain I was having. I was given an anti-inflammatory and told to take it easy for the next ten days so my body could heal.

It's been almost a year since my PCOS diagnosis. Through all of this, I have learned so much about my body, and how unique the reproductive system is. How fragile, delicate, and quite frankly, mysterious it is, which is a problem. If PCOS affects up to 10 percent of all women, how had this never been discussed with me during a trip to the gynecologist? My own questioning is what led to my diagnosis. That's scary. I think a lot of women with irregular periods struggle in silence, questioning themselves and their bodies. There is shame and embarrassment about symptoms (who wants to discuss hairy nipples?) and deep-rooted insecurity about the inability to have a period. PCOS is the most common cause of female infertility as no period translates to no kids—something I might wrestle with in my future. But while PCOS may make it more difficult to conceive, it is not impossible to overcome, and I have to hold on to that.

With no cure for PCOS, I cannot control the cysts—when they form or when they burst. Yet good things have come from my diagnosis. I've learned to be gentler with myself—more attentive to my body and my overall well-being. I have learned to worry less and to accept that my body can’t be compared to other women. And any fear I have about infertility will be addressed if and when it needs to be in the future.

I hope my experience inspires you to do some research and ask your gynecologist about PCOS. Talk about any weird symptoms or concerns you’re having. Don’t be afraid! Your gynecologist has literally seen and heard it all. While many answered questions still surround PCOS, there is some research—and relief—out there for you, too.

Photo by Tina Sosna