I Was Diagnosed With Polycystic Ovarian Syndrome Two Years Ago, And Much Of What I've Learned Since Then Is How Little We Know About It

September is National PCOS Awareness Month, and this condition may affect as much as 5-10 percent of women. Here's my story, so far.
Publish date:
September 13, 2013
PCOS, infertility

"You might have a secondary thyroid issue, which would explain some of what we're seeing in terms of your overall deficiencies....a matter of concern right now is your extremely high testosterone, which is unusual for women with fibroids, but which is a common indicator for polycystic ovary syndrome --"

"I'm sorry. I'm sorry, what?" I croaked. "Polywhat?"

"Polycystic ovary syndrome. PCOS. You’ve got it. You're actually in a couple of high risk groups for developing the condition," he mused. "Explains your anemia, too. Been bleeding a bit?" I nodded. "What are you doing for that, by the way?"

"Red meat," I said. "I am eating red meat because iron is more readily absorbed from it than from supplements and stuff." It was also cheaper than supplements and stuff, but I didn't point that out; the good thing about being uninsured in a free clinic is that you rarely have to re-emphasize how poor you are when you're in one.

"Good, good, " he said, frowning down at something on the page. "We’ll get you something to make sure your cholesterol stays low. You don't want children, do you? I mean, how long have you been with your partner? Are you...is it something the two of you have discussed? Becaaaaaauuuuuusssse..." His voice lowered in volume and pitch until the only thing I could hear was the steady, dull finality of my own pulse in my ears.

"We broke up, “ I breathed. The briefest lightning flash of empathy crossed my NP’s face. “I’m really sorry,” he said, his voice genuinely regretful. “I didn’t know.” There was no way for him to know; all four of my appointments with him were unaccompanied ones. I wasn’t in the mood to comfort him, though. His question - You don’t want children, do you? - had me worried.

“Wait. Wait, please. Are you..." I gulped, swallowing air and blossoming terror. "Are you saying I can't. That... I can't have kids?" I was suddenly a ball of sensation. A cold sheen of sweat appeared, magically, on my arms and over my mouth. The sterile examining table, comfortable and cool seconds before, was a block of ice beneath my bare ass cheeks.

"Wellllll..." the NP exhaled over the report, brow furrowed. "What we're REALLY worried about right now is keeping you as healthy as possible, and having children, well... that's not really what we're concerned with right this second. Okay?"

"Okay," I echoed.

"Let's just get you healthy. We'll worry about kids later, right?" he laughed.

"Right," I said.

"Earlier menopause is something that's not atypical for... women with these problems.* If you'd like to start a family you have options, but your situation is complex. Between your blood work and the transvaginal ultrasound report, you have a lot of stuff going on here, I gotta tell you," he said, his voice still inappropriately chipper. "But we'll cross that bridge in good time. Let's get your prescriptions written up, okay?"

"Okay," I heard myself say. Dread, icy and thick, swirled down my throat and curled around my heart before dropping into my guts like a brick. Tears formed in my eyes, and rested there. My NP's professionally detached face slowly, mercifully dissolved.

In the span of approximately five minutes, I had been diagnosed with a scary-sounding condition, informed that I was probably functionally barren, and instructed not to care. The year was 2011. It was early summer. I looked out the window at the enclosed garden near the clinic, where all of the trees that had shaken off their lush and fragrant blossoms in May now sported shiny, emerald leaves. It was a beautiful day - a regular Philadelphia summer day, unremarkable in every way, save for the fact that I had just learned that I'd never be a mom. I was 33 years old.

My journey (we’ll just call it that) to understanding and managing polycystic ovary/ovarian syndrome (PCOS) began that day. What sent me to my clinic the first time was an alarmingly heavy period, the likes of which in almost twenty years of clockwork regular moon times I had never seen.

My first consultation with my NP revealed that I was anemic, a common secondary symptom of a multitude of uterine/ovary-related health issues. Like a lot of folks, when I was initially diagnosed with PCOS, I had heard of it, but didn't know much about it. I was determined to learn all that I could.

Unfortunately, my internet findings often left me more confused than ever. It seems that beyond knowing EXACTLY how to keep a penis erect at any age, medical knowledge about human reproductive health is shockingly limited, even in this day and age. Statistics for PCOS often vary widely from scientist to scientist. The Disease Database states that globally, about 5-10 percent of women** of childbearing age either have PCOS or exhibit some symptoms of it.

While that’s a pretty substantial chunk of the global population, until very recently, the National Institute of Health listed PCOS as a “rare disease.” And, as of this writing, there is still some debate about what causes PCOS, and whether or not it can be classified as a genetic disease.

Here’s what everyone seems to agree about so far:

● PCOS is typically accompanied by high levels of androgens (like testosterone) in the blood

● Certain types of birth control may cause or worsen PCOS

● Certain types of birth control may often be used in the treatment of PCOS

● While not illustrated to be definitive causes in studies, obesity and/or insulin resistance are often present with PCOS and can worsen symptoms

● Medications used to treat insulin resistance can be effective treatments for PCOS sufferers who are insulin resistant AND overweight/obese - but there is a significant drop-off in the success rate if a patient is only one or the other

● In the United States, Black ovary/uterus-bearing bodies have disproportionately higher rates of a condition known as estrogen dominance (it is worth noting that estrogen dominance, which has been linked to the American diet, is rare in Black populations outside the U.S.)

● Estrogen dominance is definitely linked to PCOS; however, estrogen dominance’s relationship to PCOS - cause or symptom - has yet to be clearly established

● In vitro fertilization - IVF - is an option for PCOS who wish to bear children; however, the average price for IVF from start to finish is $50,000, and most insurance companies do not cover the egg harvesting process unless the patient has been diagnosed with cancer and must undergo radiation treatment

● Eliminating certain items from one’s diet (processed foods, high carb foods, non-organic red meat, alcohol, white sugar, etc.) and incorporating vitamins B, D and E has been shown to help alleviate PCOS symptoms

● Secondary physical conditions, such as anemia from hypermenonorrhea, may cause serious health problems for PCOS sufferers

Staying healthy without the benefit of health insurance can be tricky. Managing chronic health conditions without the benefit of health insurance requires luck, research, patience, hard work, some more luck, and ingenuity. One of the many drawbacks of managing a health condition that no one really knows about is that your medical professionals often put you through a medications loop. Basically, you wind up knocking back a whole bunch of prescription shit that works, doesn’t work, works at first but then inexplicably STOPS working, works but makes you throw up, works but only in combination with a magic ritual... you get the idea. And in between all the meshugas, you’re trying to work and be social and live your life - all while finding creative ways to disguise your thinning hair, furiously tweezing and waxing where you never had to before, and trying not to bleed to death.***

I’m happy to report that my story isn’t all gloom and doom. Six months (and an emergency iron transfusion) after my diagnosis, I was able to get health insurance through my place of employment. Some acupuncture, some therapy, some iron supplements, an outpatient procedure here, another outpatient procedure there, and in a matter of months I was almost back to my old self.

I’ve even been able to informally fashion a virtual PCOS support group with folks on Twitter, which has been tremendously helpful on the tougher days. I’ve learned that managing PCOS looks different for all of us. For me, it meant accepting infertility and the very real possibility that I will never be a mother - something I always thought would happen, someday.

I sometimes look back on my handful of pregnancy scares, and get wistful. And then I try to imagine my life, with all its whackadoodle unpredictability, with children. And as hard as it is for me to say it sometimes, it really doesn’t work with kids. I don’t doubt that if I ever got the chance, I’d be a fabulous mom. Until that day comes, I’ll just stick to being fabulous.


* PCOS isn’t the only reproductive health issue I manage, but it IS the only one I discuss at length here

** It is important to note here that not every person who manages PCOS and other conditions affecting the ovaries or uterus identifies as a woman or girl. Estrogen dominance, PCOS, fibroids, and endometriosis are all conditions that appear with disproportionate regularity in the United States among Black trans men as well as Black women; this issue is further complicated because few health care practitioners TREAT trans people in the United States

*** PCOS is frequently accompanied by moderate to severe depression. Surprise! /sarcasm