I wasn’t pregnant, overweight or too thin. I wasn’t exercising too much or eating too little. From all appearances, I was a normal, healthy woman, but by the time I was in my mid-20s, I hadn’t menstruated in four years.
My periods had never been “regular,” but I was accustomed to getting one at least three to four times a year. My doctors told me that I was a normal, healthy woman, at least in reproductive terms. But I was desperate to discover where my absent monthly visitor had gone, and why. My blood tests showed that my female sex hormones—estradiol and progesterone—were near menopausal levels, which put me at a risk for osteoporosis. I knew menopause could come early, but I was just 24.
To get answers, I turned to the internet late one Saturday night. Menopause, it told me, is “the time when there have been no menstrual periods for 12 consecutive months, with no other biological or physiological cause identified.” Using that definition as a guide, I was already in my fourth year of menopause, at least two decades early.
Most of my friends were well into their womanhood, seemingly in control of their regular periods and at the peak of their fertility. And then there was me. I wasn’t a part of the menstruation camaraderie shared between many women. Instead, I identified more with women my mother’s age.
Much of my early twenties was spent visiting doctors’ offices in search of answers. One doctor feared I had a tumor in my pituitary gland, a pea-sized organ in the brain that regulates vital body functions and general wellbeing. I was injected with a gadolinium-based contrast agent and had an MRI of my brain that, thankfully, came out negative. Another doctor misdiagnosed me with an underactive thyroid and prescribed thyroid medication. Even if that had been the problem, she also overmedicated me, throwing me into a fit of uncontrollable anxiety with equal parts impending doom, rapid heartbeat and shortness of breath. I lived in that state for several manic weeks.
It was hard to trust specialists after that experience, so I returned to my 62-year-old gynecologist, who had also been my mother’s. (Technically, we had first met when he pulled me out of her.) I felt he was someone who would tell me the truth. “Honey, relax,” he told me. “There’s no medical reason why you need to have a period. Most women would love to have your problem!” While I pushed back against his supposed wisdom, he prepped me for an ultrasound.
Next thing I knew, I was lying on my back with my feet pressed against elevated, chilly metal stirrups. “This will feel cold,” an ultrasound technician said as she moved the wand around inside of me. Clenching my jaw and bunching the medical exam tissue paper beneath me, I did my best to relax. The technician, meanwhile, casually displayed my ovaries on a screen next to us.
I hoped the images of my insides would reveal the mystery of my missing periods. The technician used a digital ruler to measure many black ovals, some over an inch in size. She described them as a “string of pearls.” Confused, all I could do was make a joke: “I didn’t imagine my first set of pearls to look like this!”
My doctor later looked at the images and my lab work and diagnosed me with Polycystic Ovarian Syndrome. Unlike most people who face a diagnosis with an odd acronym, PCOS was actually on my radar. My mother had suffered from it for decades. So why did it take years to figure out that I had the same thing? In part, it is because our symptoms are entirely different. For her, PCOS explained her extremely heavy periods that left her in crippling pain. But that had never been my problem.
I had so many questions for my doctors: How can my mom and I have the same diagnosis, but diametrically opposing experiences with menstruation? Is there any treatment? Is this the reason I’ve been feeling so depressed and anxious? Will I be able to have kids one day?
Instead of answering them, my doctor picked up his pen, scribbled some notes and sent me on my way with a prescription for anti-depressants and oral contraceptives. I had no history of clinical depression and in retrospect, the anxiety was probably from the sudden chaos inside me that the diagnoses triggered. As for the birth control pills, he said it was the only treatment for the newly diagnosed syndrome I’d been living with for years.
Unsatisfied with his answers (or lack thereof), I emailed my general practitioner to express my concerns. While I was used to him speaking in terse, broken sentences, I expected a bit more guidance. “If not sexually active, don’t worry about periods for now,” he wrote. “Enjoy life and use condoms if needed. You should be doing that anyway. Not uncommon for periods to disappear from time to time. Don’t lose any sleep over it.”
But, of course, I lost a whole lot of it as I spent hours digging to the depths of the internet to research my condition each night. I discovered that there is no single test to definitively diagnose PCOS and there is no universally accepted definition. In fact, the diagnostic criteria have actually expanded in recent years, according to the American College of Obstetricians and Gynecologists. So, while I finally had a diagnosis, it was oddly vague. And because my symptoms were not as extreme as some of my fellow cysters, I felt a sense of shame amid my struggle. It all left me wondering what, exactly, do I suffer from?
Much to my dismay, this wasn’t something Google could answer. Though I did learn that PCOS is one of the most common causes of female infertility, affecting five to 10 percent of women of childbearing age in the United States. Despite the syndrome’s prevalence, it is regarded as one of the most neglected public health issues. Women with PCOS are more prone to diabetes, sleep apnea, and heart disease, and three times more likely to get endometrial cancer.
Given the stakes, I couldn’t believe physicians weren’t more attuned to the symptoms. I wasn’t alone in that sentiment. Surveys show that women with the syndrome have a very high degree of dissatisfaction with their diagnostic experience. In a survey of 1,385 PCOS sufferers from 48 different countries—half from the United States—researchers at Monash University found that one in three women had suffered for more than two years before receiving a diagnosis. They also went to three or more medical providers with different specialties in the process.
Anti-depressants, metformin, spironolactone, herbal supplements, birth control—you name it, I tried it. Despite having the correct diagnosis, I never received the right care. That was until my first gynecologist referred me to a reproductive endocrinologist, Sharon Winer.
Dr. Winer spent two hours looking over all my tests and writing down details of my saga. Most importantly, she helped me digest and understand medical terms in a way no other doctor had ever attempted. I learned that my body produced too much testosterone—the male sex hormone—and insulin, the hormone that manages our blood sugar levels. This, in conjunction with my low levels of estrogen were likely the reason behind my missing period, weight gain and fatigue. I learned that insulin resistance is very much associated with PCOS, even though it’s not currently one of the diagnostic criteria.
Winer explained that birth control was not the right treatment for me because it was further suppressing my hormones by continuing to ‘switch’ them off. After careful consideration, she prescribed me Hormone Replacement Therapy, known as HRT, to be taken cyclically to mimic a real menstrual cycle. This is a common menopause treatment, but in my case, the doctor hoped it would wake my endocrine system up and cause it to produce these hormones.
Two months later, I got my first period in four and a half years. It wasn’t much, but in a way, it was everything. It proved to me that my body wasn’t broken. I weaned off the hormones six months later, only to see my body working as it should. It was capable all along. It just needed the right guidance. I called my mom and we both cried.
After six years, three misdiagnoses, and countless ups and downs, I have finally found a way to manage my symptoms through medication, diet, and exercise—all without surrendering to a one-pill fix. Some people keep track of the miles they run every week, others count calories; for me, the anchor that defines whether I’m in good health stems from the monthly rhythm of my menses.
Two years and three months later, I can safely say that tapping the ‘add cycle’ button on my period tracker phone app never gets old.
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