When I was 23 years old, I sat in my OB-GYN’s office looking at black and white pictures of my insides. “See?” he said, gesturing to the round, straight-lined cysts showing up on ultrasound images of my ovaries. “Like a string of pearls.” This was the main criterion used to diagnose me with polycystic ovary syndrome—aka polycystic ovarian syndrome, Stein-Leventhal syndrome, and PCOS—along with cystic acne that was in full bloom, a BMI that was nearly in the “overweight” range for my height, and a sprinkle of body hair in unexpected places. My gynecologist also told me that my relatively short menstrual cycles were proof of this hormone condition, which is estimated to affect between 8 and 20 percent of reproductive-age women worldwide. He wanted to put me on oral birth control, which I’d gotten off of in college because I felt like it was spiking my anxiety, and metformin, a prescription medication used to stabilize blood sugar levels in people with diabetes. I was told that the former would prevent new testosterone-producing cysts from forming on my ovaries (something that could lead to more acne, body hair, and infertility down the road), and the latter would keep me from becoming insulin resistant. I happened to be going through a particularly intense phase of eschewing traditional medical advice, and I said “no thank you” to both. After extensive personal research, I’d decided to try to treat the condition through diet and exercise—eating a whole-foods, lower-carb diet and trying to reduce my weight by 10 percent, which I’d read could help regulate cycles. The double-edged sword of women’s (understandable) affinity for alternative medicine is that through the process, they may become more informed and empowered about their bodies—but they may also overestimate their ability to interpret scientific studies as laypeople and consequently forego essential medical advice.
Fortunately, this time, it looks like I was right to not listen to my doctor. The next year, living in Madrid, Spain, I went to an alternative-medicine OB-GYN, who took an ultrasound and said that I looked like I was about to ovulate (PCOSers supposedly don’t ovulate with regularity, if at all) and that she didn’t think my diagnosis was correct. A few months ago—a full six years after my PCOS diagnosis—another ultrasound of my insides showed that my ovaries were not abnormally cystic. My new (mainstream) OB-GYN assures me that my short cycles are normal. (Though the average cycle length is 28 days, regular cycles can range anywhere from 21 to 35 days.) He also says I should be perfectly fertile if ever I decide to reproduce. So, do I have PCOS? My old gynecologist said yes, my current one says no, and I say probably not but honestly who really knows? Whatever the case, PCOS is a real condition with real effects on those who suffer from it. Symptoms vary from woman to woman, and confusion abounds about how to diagnose it correctly. But we’ve compiled some information here that may be helpful to you if you think you or someone you care about may have PCOS.
Watch for these signs.
There are typically three telltale symptoms associated with PCOS, and according to Mayo Clinic, doctors will diagnose you with the condition if you have at least two of them: irregular periods, polycystic ovaries, and excess androgen. “Infrequent, irregular or prolonged menstrual cycles are the most common sign of PCOS,” says Mayo Clinic. “For example, you might have fewer than nine periods a year, more than 35 days between periods and abnormally heavy periods.” When a woman fails to ovulate during her monthly cycle, cysts can build up in her ovaries. While you might reasonably assume that polycystic ovaries would be a definite indicator of PCOS, this is not always the case. Not every woman who has cysts on her ovaries has PCOS, and not every woman with PCOS has cystic ovaries. As for excess androgen, this is just another way of saying “too much testosterone.” Women who overproduce the hormone may experience symptoms including acne, male-pattern baldness, and excessive hair growth. Let’s take a minute, though, to acknowledge that the standards for “excessive hair growth” are probably skewed. As you’ll recall, having some dark hairs in unusual places was enough to be considered suspect by my old gynecologist.
Listen to the stories of other “cysters.”
Because there’s so much confusion among both medical experts and patients surrounding this condition and how to diagnose and treat it, one of the best things you can do is get involved with a community of other women who are suffering from PCOS—or as they very charmingly call themselves, “soul cysters”—and learn from these personal accounts.
I recently reached out to women in my own social network who’ve been diagnosed with PCOS. Here are their experiences, some of which have been edited slightly for space and clarity. Krista shared her story: I was diagnosed with PCOS when I was 25. I had ovarian cysts since puberty but not other issues until I experienced a miscarriage at age 24. My cycle never returned after the miscarriage and we were unable to conceive (due to anovulation). I was sent to a fertility specialist … and after an ultrasound, hysterosalpingogram [x-ray of uterus and fallopian tubes], and a TON of lab work, I was diagnosed. Immediately I was given metformin to take twice daily, and I conceived our oldest living child the same month. I started hormonal birth control at age 16 so any of the symptoms I may have had prior would have been masked by the hormones. I still have issues with hirsutism, hair thinning and loss, and acne at age 30. I am fortunate to not be insulin resistant and don’t have issues with weight gain. I am currently being treated daily with metformin and have no issues. In Rachel’s case, PCOS is a family affair: My sister also has it. Though I have ‘fat PCOS’ and she has ‘skinny PCOS.’ My sister is a urologist, and when I was still in college (19), she said I had the textbook description of it. The only issues I dealt with when I was younger were irregular/nonexistent periods and hirsutism. When I hit my mid-20s, I was diagnosed with anxiety and depression, so I was put on selective serotonin reuptake inhibitors (SSRIs). At 25, I had AWFUL cystic acne along my jaw and far cheek area close to my ear. I was put on spironolactone then and I also use a prescription topical retinoid cream called Tretinoin when necessary. I forgot to mention that I was first put on birth control at 17 after I went through a period of six months where I had no period, and then when they started again, I would bleed for a month straight. I’m currently on birth control, spironolactone, and I’m switching from Prozac to Trintellix. My sister has irregular periods and hirsutism (hers is milder than mine). She was able to conceive after one round of Clomid and delivered my older nephew in 3/2014. She never had a period after delivering and did not go back on BC, so she had a surprise baby 20 months after my older nephew. I’ve been told by a reproductive endocrinologist to not even try to get pregnant on my own (when that time comes) and that I should go straight to her. My current gen phys and the repro endo mentioned the name [polycystic ovary syndrome] needs to be changed because so many women don’t exhibit cysts (neither my sis nor I have cysts). Kara first learned about PCOS in a magazine for teens: I was about fifteen when I was diagnosed. I had a subscription to Seventeen magazine and read an article that said to see your doctor if you’d had your period for more than a couple of years and it still wasn’t regular (I’d had mine for about 4 by then).
Sure enough I had PCOS, in conjunction with insulin resistance (these two go hand in hand a lot). My doctor put me on metformin for the insulin resistance and a good diet and I lost 40 pounds in a year without trying. She also put me on the pill to get the cysts to shrink (apparently the estrogen in the pills shrinks them). I had 1 large cyst (14 centimeters across) that the ultrasound tech couldn’t believe wasn’t causing me pain, and two other small ones if I recall. The large one turned out to be located on my fallopian tube, so it didn’t shrink like the ones on my ovaries did. Had surgery with general anesthesia at 15.5 years old to remove the large cyst and my doctor took 2 cups of fluid out of it. This was right before band camp in high school and having to explain my medical condition to a bunch of teenage boys was interesting! But they were all very supportive (I played a traditionally male instrument in the band). I’m still on metformin and the pill 12 years later to manage insulin resistance and to prevent the cysts from forming. Sometimes I worry about difficulties I may have if I ever want to get pregnant, and I think this is just another reason I’m leaning towards not having my own children. It’s amazing how many women have PCOS and don’t even realize it, so I’m thankful that Seventeen article was written all those years ago! Tiffany has jumped through a number of hoops trying to get her PCOS under control: I was diagnosed with PCOS almost 15 years ago. I would say that since I’ve been diagnosed with PCOS at age 14, things have been difficult. One of the main treatments for this condition is birth control pills. That was quite a process trying to find a pill that didn’t make me feel terrible. Another popular treatment for this condition is a medication called metformin. This medication would always make my stomach hurt so bad. It would always cause nausea as well. In addition to side effects from the medication, the symptoms of PCOS can be devastating. I experienced issues with the excessive hair growth, particularly on my face. The hair growth got so bad that I was able to grow a decent beard in just over a week. The hair removal process is annoying and it can also become very expensive very quickly. Also, at the age of 18, I was told that I would probably never be able to have children because of PCOS. That was kind of devastating. In retrospect, the doctors that I visited for treatment didn’t really know a lot about PCOS. In the last 6 months, I have obtained a new OB-GYN and she has enlightened me on PCOS. Some of the issues I have, like muscle and joint stiffness, hot flashes, and loss of appetite, stem from PCOS. After many many tests and a crazy medical adventure with blood clots, it’s hard to say whether or not I still suffer from PCOS.
Seek out second opinions.
Another reason I’d been suspect of my long-ago PCOS diagnosis was that I learned my gynecologist had also diagnosed one of my friends and both of her sisters with PCOS, despite all of us having different symptoms. Though now I know that the symptoms can vary widely, at the time I wondered if this was some kind of faddish health hysteria—like vitamin D deficiency or gluten sensitivity—that would soon be debunked or a conspiracy wherein pharmaceutical companies were in cahoots with OB-GYNs to make more women take more prescriptions. When it comes down to it, doctors simply still don’t have a good understanding of PCOS. But getting a PCOS diagnosis doesn’t mean you have to do whatever you’re told.
“Don’t just trust what the first doctor you see says without doing some research,” one PCOS sufferer, Sara Eaton, tells The Atlantic. “Find another woman with PCOS, go online to some of these support groups. Find a reproductive endocrinologist who knows what they’re doing. Talk to other cysters, read the articles, look for doctor recommendations. We have a syndrome that is so complicated and confusing, one of the best ways we can help ourselves is to be proactive and make sure we find the best and most knowledgeable caregivers available to us.” When you’re not sure where to start, trust what the majority of scientific experts are saying—because science, however imperfect its conclusions, is the best hope we’ve got for figuring out the truth. Know all of your options. Weigh the costs and benefits.
Above all, keep on moving.