After being diagnosed with PCOS, I advocated for my own health.
We used rubber bands to trace fine, light lights on the eggs. I had chosen a simple design motif from the thick book my friend Sarah showed me — star-like flowers, the petals outlined with white, the centers filled in with pollen-yellow. We were making pysanky, Easter eggs decorated using a wax-resist method, a Ukrainian tradition dating back to early Slavic cultures. My eyes were swollen. There was a glass of wine beside me, at two in the afternoon. Our sushi boxes were strewn across Sarah’s kitchen counters.
“At least I can still have sushi and wine,” I’d tried to joke when she opened the front door. Sarah filled our glasses.
Two months earlier, I'd been diagnosed with polycystic ovarian syndrome (PCOS). Common symptoms include obesity, diabetes (or insulin resistance), hirsutism, acne, irregular periods, irregular or lack of ovulation, polycystic ovaries and infertility. Based on what’s known as the Rotterdam criteria, if a woman has at least three of these symptoms, she can be diagnosed with PCOS. I had the last five.
Up to 75 percent of women with PCOS go undiagnosed “due to variability of patient presentation and lack of provider knowledge.”
PCOS is the most common endocrine disorder found in women and the leading cause of female infertility, which impacts about 12 percent of women between the ages of 15-44. And up to 75 percent of women with PCOS go undiagnosed “due to variability of patient presentation and lack of provider knowledge.”
I was among that 75 percent.
After I hadn't conceived in 16 months, my gynecologist had prescribed Clomid, an oral fertility drug meant to trick the brain into producing more estrogen, ideally creating a dominant follicle that will produce an egg — ergo, ovulation. Before starting the drug, I had to take a baseline ultrasound to confirm there were no other, obvious reasons for the inability to conceive, such as a blocked fallopian tube or endometriosis.
On the ultrasound screen, my ovary was covered with something resembling an open pea pod — a neat line of dark round shapes where, I was fairly certain, there should only be one. But the image was gone before I could be sure, and the call I received later said everything was fine. I was cleared to start Clomid the following day.
I did. But a few days later, I signed into the app connected to my gynecologist's office and read my ultrasound report. The last line stunned me: "Both ovaries appear polycystic."
I couldn't make sense of it. How could my doctor neglect to tell me this? And what did it mean?
I began researching, finding that cystic ovaries are not necessarily abnormal in the absence of other symptoms. Except… I did have other symptoms. My periods sometimes lasted two weeks or didn’t come at all. Ovulation predictor tests consistently came back negative. And acne had plagued me for half my life, and it was much worse now that I was off birth control.
I demanded to see my doctor the following day. Based on the Rotterdam criteria, she confirmed what, in my gut, I already knew — I had PCOS. "I'm sorry,” she said. “I should have told you. But it wasn't going to affect our course of action, so . . ."
I was furious. But instead of telling her that wasn't her place, I asked for blood work. She looked surprised, then shrugged and agreed. I could tell she thought it was pointless. I already had a diagnosis, after all. But I wanted to know: was I insulin resistant? How high were my DHEA-S (androgens) and free and total testosterone levels? Had my skin been trying to tell me about a hormonal imbalance all along, the same hormonal imbalance that would eventually lead to infertility?
First round of Clomid, at 50 mg: unsuccessful. No follicle growth.
I started the second round, at 100 mg, while still waiting for the blood work to come back. When it did, it showed that my hemoglobin A1C — my average blood sugar in the last three months — was 5.5 percent. The pre-diabetic range begins at 5.7 percent. My DHEA-S, a steroid hormone produced mainly by the adrenal cortex, was abnormally high, as were free and total testosterone. My ratio of LH to FSH, hormones integral to ovulation, was also abnormal.
I asked my gynecologist what she recommended. "Most women with PCOS are obese," she said. "Losing 10 percent of their body weight can often bring back fertility. But you'd disappear if you lost that much weight! So we'll just continue with the Clomid."
That day, she had good news: I'd developed what looked like a dominant follicle, a 24-millimeter sparkler, along with an 18-millimeter and a 14-millimeter. (There's a 15 percent chance of twins on Clomid.) In theory, I should ovulate soon. I was so thrilled that I ran out to my car and called my husband.
Ten days of negative ovulation predictor tests. Sharp pain in my right ovary. Ten more brutal days of waiting. Three negative pregnancy tests. My period.
It turned out the "dominant follicle" was only a larger cyst, fueled by the extra estrogen. It was now 48 millimeters, four times the size of the original cysts. My doctor advised me to wait a month before trying Clomid again for a third and final time. If that didn’t work, I should see a reproductive endocrinologist.
While I waited, I read a 100-page e-book on PCOS, dozens of articles, both anecdotal and scholarly and a handful of dense medical studies. I felt sure that diet was key, but I wasn't sure which approach to take. So I emailed a former client of mine, Tom Sult, M.D., author of Just Be Well.
Dr. Sult is a functional medicine doctor, passionate about finding the root causes of disease, rather than just Band-Aiding the symptoms. He wrote back immediately, saying that I was, in fact, showing early insulin resistance, and that he'd recommend a ketogenic diet to sharpen insulin sensitivity.
By drastically reducing glucose, the body's sensitivity to insulin may sharpen, potentially resetting the hormonal effects that define PCOS.
This was in 2017, before everyone knew what “keto” meant. The diet requires lowering carb intake to as little as 20 grams per day, from the average consumption of 250-350 grams. On keto, carbs should comprise approximately 10 percent of your daily nutrients, protein 20 percent and healthy fats 70 percent. When the body no longer has glucose to use as energy, it will turn to stored fat, producing ketones, which can be measured through blood, breath or urine. That's known as being in nutritional ketosis. By drastically reducing glucose, the body's sensitivity to insulin may sharpen, potentially resetting the hormonal effects that define PCOS.
Studies support Dr. Sult’s recommendation. One study, in the Journal of the Academy of Nutrition and Dietetics, compared the effects of different dietary compositions on anthropometric, reproductive, metabolic and psychological outcomes in PCOS, found that low-carbohydrate diets did best for sharpening insulin sensitivity. Another study by the University of Alabama concluded: "A moderate reduction in dietary carbohydrate reduced the fasting and postchallenge insulin concentrations among women with PCOS, which, over time, may improve reproductive/endocrine outcomes."
A third study, in The American Journal of Clinical Nutrition, looked at the broader effects of a ketogenic diet, concluding that "Because of the improvement in insulin resistance, LCDs [low carbohydrate diets] could, in theory, be useful for any condition related to insulin resistance, and thus any such condition should be a topic of future research."
The day Sarah and I dipped our eggs in dye and heated wax over candles, I had just found out I wasn’t pregnant — again. My reproductive endocrinologist had told me — kindly, gently — that I had less than a two-percent chance of conceiving naturally. I had been taking Metformin and Letrozole, and injecting myself with hormones. I was exhausted.
Shortly after that, I took a break from fertility medication. I focused on the diet.
Over the next three months (five total on keto), my skin cleared. My periods regulated. My symptoms of PMS all but disappeared. But I still had not conceived. My husband and I decided to proceed with an IUI (intrauterine insemination). First, I needed to get my period — but it was, for the first time in months, late. As always, the home pregnancy test came back negative.
“What’s the point of this stupid diet?” I cried to my husband after our doctor’s appointment. “I’ve given up every food I love and for what?” They had taken blood and performed an ultrasound. Based on the results, I might need to take progesterone to jumpstart my period — I was crushed.
We went home, and I took a nap. Then I received a phone call.
“We got your results,” my nurse said. “Looks like you’re not going to need the progesterone after all.”
“Great,” I said flatly.
My daughter is 15 months old. She is wild-haired and adventurous and beginning to walk on her own. My husband and I are talking about trying for a second child. I have been off birth control for four months and on keto for two. Once again, my skin has cleared and my periods have regulated.
I believe it’s only a matter of time.
Katie Gutierrez lives in San Antonio, Texas with her husband and daughter. Her writing has appeared in The Washington Post, Catapult, Lit Hub and more. Find her on Twitter @katie_gutz.
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