PCOS and Infertility: What My Doctor Didn't Tell Me--And What I'm Doing About It
Photo by Adrian Collins Photography
When I made a "Health" category for this blog, I sort of hoped I wouldn't have so much to say. But after the close calls of last year, I made a New Year's resolution to be proactive about my health. That meant admitting to myself that, after sixteen months, it was strange that I had not gotten pregnant. It meant making an appointment to investigate, instead of continuing to make excuses. It means, now, saying on a blog what only a handful of people in my life know: at this point in time, I'm infertile.
Every day for months now, I've wanted to write about this. Every day I've talked myself out of it. The reason? I don't want pity. I don't pity myself (most days), so I don't need anyone else to do it for me. And yet, those two words up there are loaded, aren't they? They ricochet, once spoken out loud, and the impact they cause is beyond my control. So I can't help it if you pity me. But please don't tell me so.
Why am I writing this, then? Because I have the feeling, stronger as time passes, that it could help someone. Reading this could have helped me years ago, if I'd been paying attention to the words and their connection to my body.
I've been diagnosed with polycystic ovarian syndrome (PCOS). Most estimates hold that PCOS impacts between 5-10% of women of reproductive age--that means you probably know someone who has it, even if she doesn't know it yet. PCOS is known as the highest cause of infertility in the Western world. Here's my (decidedly paraphrased) explanation of PCOS: it usually starts with insulin resistance. This sets off a cascade of undesirable reactions: obesity, diabetes, hirsutism, acne, irregular periods, irregular or lack of ovulation, polycystic ovaries, and infertility. PCOS is usually diagnosed using the Rotterdam criteria--that is, if a woman has at least three of the symptoms listed above, she can be diagnosed with PCOS. I have the last five.
The way I found out, I think, warrants a slight digression. Based on the fact that I hadn't conceived in sixteen months, and that ovulation predictor tests consistently came back negative, my gynecologist prescribed Clomid, an oral fertility drug meant to trick the brain into producing more estrogen, ideally creating a dominant follicle that will, in turn, produce an egg--ergo, ovulation. Before starting, I had to take a baseline ultrasound to confirm there were no other, obvious reasons for the inability to conceive.
When I saw my ovaries on screen, it was after I'd already Google-imaged healthy and unhealthy ovaries. What I saw was the oval shape of the ovary covered with something that looked like an opened pea pod--a neat line of dark round shapes where, I was fairly certain, there should only be one. But the images were off the screen before I could be sure, and the call I got later said everything was fine--I was cleared to start Clomid the following day.
I did. But then, a few days later, I signed into the Follow My Health 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 they neglect to tell me this? Surely this wasn't fine. I immediately consumed myself with research, finding that cystic ovaries are not necessarily abnormal in the absence of other symptoms. Then there was the more foreboding rabbit hole of PCOS websites.
Long story short: I demanded to see the doctor the following day. Based on the Rotterdam criteria, she confirmed what I'd almost talked myself out of believing: "You have PCOS," she said. "I'm sorry, I should have told you. But it wasn't going to affect our course of action, so . . ."
I was furious. But I'm also annoying non-confrontational, and I actually liked her, so instead of telling her what I thought--It wasn't your place to make that call--I asked for blood work. She looked surprised, then shrugged. "Sure," she said. "We can do that." I could tell she thought it was pointless. If blood work was meant to be diagnostic, and she'd already given me a diagnosis, then why was it necessary? But I wanted to know: was I insulin resistant? How high were my DHEA-S (androgens) and free and total testosterone levels? The answers could help explain a symptom that has troubled me my whole life: acne.
I took Accutane twice--once in high school, once in college. But every few years, my skin worsened again, developing large, painful cysts that left embarrassing and confidence-depleting scars. I hadn't realized how much the Nuvaring was helping until it was gone. Lately, my skin had made me cry in the shower as my fingers ran over the bumps on my cheeks, chin, and jaw. I hadn't felt so self-conscious in years. Adrian, sweet, smart man, pretends not to notice, but such a feat would be impossible. At the point of my diagnosis, I felt like my face was on the verge of being destroyed. (If I were a braver woman, I'd show unfiltered, makeup-free photos here, but I think I've reached my vulnerability quota in this post.) I thought, if I knew this problem was hormonal, I'd have a different place to start when it came to finding solutions.
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--that is, my average blood sugar in the last three months--was 5.5%. The pre-diabetic range begins at 5.7%. My DHEA-S were abnormally high, as were free and total testosterone. My ratio of LH to FSH (hormones integral to ovulation) was also abnormal.
I'd been doing some reading, and I learned that women had "cured" themselves naturally of PCOS through diet. Some swore by gluten-free, sugar-free, dairy-free; others by paleo. I asked my gynecologist what she recommended, but she gave a kind of "what're-you-gonna-do" shrug. "Most women with PCOS are obese," she told me. "That's most of my patients. I tell them that losing 10 percent of their body weight can often bring back fertility. But you'd disappear if you lost that much weight! So, like I said, we'll just continue with the Clomid."
That day, she had good news for me: I'd developed what looked like a dominant follicle, a big ol' 24-millimeter sparkler, along with an 18-millimeter and a 14-millimeter. (There's a 15% chance of twins on Clomid.) These were up from the 12-millimeter cysts of my first and second ultrasounds. In theory, the 24-millimeter one was an indication of forthcoming ovulation. I was so thrilled that I didn't push her about the PCOS business. I just ran out to my car and happily called Adrian.
Ten days of negative ovulation predictor tests. Sharp pain in my right ovary, where the dominant follicle should have already dropped. Ten more brutal days of waiting. Three negative pregnancy tests. My period.
Turned out, based on my next ultrasound, that the "dominant follicle" was only a larger cyst, fueled by the extra estrogen. It had doubled in size from the 24 millimeters. My doctor advised me to wait a month before trying Clomid again for a third and final time.
Through the waiting period, I'd been doing some seething in the form of more research. I read a 100-page e-book on PCOS. Dozens of articles, anecdotal and scholarly. A handful of dense medical studies. I felt sure that diet was key, but I wasn't sure which approach was the best. So I emailed one of our former RTC clients, Dr. Tom Sult, whose book, Just Be Well, I think everyone should buy.
Tom was the first functional medicine doctor I'd ever met. He immediately felt like that brilliant professor whom you also want to grab a beer with after class. He's passionate about finding the root causes of disease, rather than just Band-Aiding the symptoms. Truthfully, I had not known doctors like him existed. But now that I do, he remains a trusted source of advice and information. So I emailed him a detailed summary of what was going on, including all of my blood results.
Tom immediately wrote back, saying that I am, in fact, showing early insulin resistance, and that he'd recommend a ketogenic diet to sharpen insulin sensitivity. I had to Google "ketogenic diet." It encompasses lowering carb intake to as little as 20 grams per day (most people eat 250-350 grams; I was easily at the high end). On a ketogenic diet, known as "keto," carbs should comprise 10% of your daily nutrients, protein 20%, and healthy fats 70%. The idea is that 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. The idea is that by drastically reducing glucose, and therefore insulin, the body's sensitivity to insulin will sharpen, resetting all those other hormonal effects. Tom said that if I did well on keto, I could experiment with paleo, and then--maybe--low G.I./paleo.
Studies, like this one, support Tom's recommendation. In fact, it makes perfect, beautiful, obvious sense. I had no idea where to start, so I bought a book Tom recommended, The Art and Science of Low Carbohydrate Living, plus a ketogenic cookbook. Then I cleaned out the fridge and pantry and went grocery shopping. (What the hell was ghee? Where was I supposed to find it? In the baking aisle, apparently.)
I'm not going to lie: the first week was hell. I had headaches, brain fog, and was deeply lethargic, canceling Pilates workouts and sleeping during the day. This is known as keto flu, when the body is transitioning between energy sources. It took me a week to reach full ketosis, around which time the fog lifted and energy returned. I was getting the hang of it, I felt. Zucchini noodles weren't pasta, but with Adrian's meat sauce, they were close. Coffee blended with butter and cinnamon? Delicious. But I wasn't getting enough fat (still am not, most days) and was starving most afternoons around three and again before bed. Plus, I missed the foods I love. My food, the food I grew up with, the food that's always nourished and comforted me: rice, beans, potatoes, tortillas. A freakin' apple has 19 grams of carbs. Some days, I felt--feel--depressed and angry. Some days, I feel defeated. But you know what I don't feel? Shame.
Shame is not a word I've contended with much throughout my life. I feel shame when I behave in a way contrary to my integrity, and I believe that shame is warranted. But shame simply for being? No. So most days, I don't feel shame for PCOS, for being infertile. I don't feel it's my fault or that I'm less of a woman because of it. I do feel sad. Sad for myself, sad for Adrian. I feel compassion for a body that's been trying to warn me about this for years. I feel, thanks to Tom and to this diet, a sense of control--of hope--that I wouldn't have otherwise. I've always been a person who rises to a challenge. Tell me I can't do something, and I'll tell you where to go while you watch me prove you wrong. So being told I'm not ovulating, that I can't get pregnant on my own, is not a blow under which I'll cower. At least not for long stretches of time.
In addition to going keto, I've switched up my skincare and supplement routine. For skin, I've been using the Clarisonic Mia, a probiotic line from Eminence, a vitamin C serum, a prescription topical with 15% azelaic acid, and the One Drop Wonder pomifera oil from Limelight by Alcone. I'm taking Green Pastures Fermented Cod Liver Oil, plus a probiotic, a prenatal, Vitamin D drops, and Ovasitol, all shown to help women with PCOS.
And here's the thing: my skin, the same skin that made me cry just a month ago, is now mostly smooth under my fingertips! It still has hyper-pigmentation and scars, but for the most part, I'm not breaking out. This is huge news, because I now see my skin for what it is: a mirror reflecting what's happening inside my body. If my skin, which was in desperate condition, is improving, I can only imagine it's because my hormones are beginning to regulate. That is no small victory.
Recently, I reached out to a friend I hadn't spoken to in awhile, a friend who got pregnant through IVF (which will likely be our next pursuit). We talked for almost an hour--it turned out that she, who is slim and athletic, also has PCOS. Her gynecologist also told her that diet wouldn't help her. We talked about our experiences, and about how experiences like ours generally aren't talked about. We don't go around advertising our disappointment, our many tried and failed attempts to do what so many others do without effort. We "like" sonogram pictures on Facebook, gender reveals on Instagram, throw out congratulations as if the word doesn't catch something in our chest. We grieve quietly, privately, for the thing we lost but never had in the first place.
But I don't want to do that. I want to share this in hopes that it will reach who it needs to reach. I'm only starting this journey, so I'm far from having all the answers. But if you need someone to tell you to advocate for your health, to do your own research, to consider that food is often more effective than medicine--and to remind you that you're not alone, you're not less-than, and that you do have hope, I'm your girl. We're in this together.