I was not pregnant, overweight or too skinny. I didn’t exercise too much or eat too little. I appeared to be a normal, healthy woman, but by the time I was in my twenties, I had not had a period for four years.
My period had never been “regular”, but I used to get at least three to four times a year. My doctors told me that I was a normal, healthy woman, at least in terms of reproduction. But I desperately wanted to find out 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, putting me at risk for osteoporosis. I knew menopause could come early, but I was only 24 years old.
For answers, I turned to the Internet late on a Saturday night. Menopause, she told me, is “the time when there has been no period for 12 consecutive months, with no other biological or physiological cause identified.” Using this definition as a guide, I was already in my fourth year of menopause, at least two decades earlier.
Most of my friends were good in their femininity, apparently in control of their regular periods and at the peak of their fertility. And then there was me. I was not part of the menstrual fellowship shared by many women. Instead, I identified more with women my mother’s age.
Much of my 20s was spent visiting doctors’ offices looking for answers. A doctor was concerned that I had a tumor in my pituitary gland, a pea-sized organ in the brain that regulates vital body functions and overall well-being. I was injected with a gadolinium-based contrast agent and had an MRI of my brain which luckily came back negative. Another doctor diagnosed me with an underactive thyroid and prescribed me thyroid medication. Even though that had been the problem, she also overmed me, throwing me into an uncontrollable anxiety attack with equal parts impending doom, rapid heartbeat, and shortness of breath. I lived in this state for several manic weeks.
It was hard to trust specialists after this experience, so I went back to my 62-year-old gynecologist, who was also my mother’s. (Technically, we had met for the first time when he pulled me out of her.) I felt like this was someone who would tell me the truth. “Honey, relax,” he told me. “There is no medical reason why you have to have your period. Most women would love to have your problem! As I pushed away his supposed wisdom, he prepared me for an ultrasound.
The next thing I knew, I was lying on my back with my feet pressed against raised, cold metal stirrups. “It will be cold,” said an ultrasound technician, moving the wand inside me. Squeezing my jaw and squeezing the medical examination tissue paper under 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 bowels would reveal the mystery of my missing period. The technician used a digital ruler to measure many black ovals, some over an inch. She described them as a “pearl necklace”. Confused, all I could do was make a joke: “I never imagined my first set of beads looking like this!”
My doctor then looked at the pictures and my lab work and diagnosed me with polycystic ovary syndrome. Unlike most people who face being diagnosed with a strange acronym, PCOS was actually on my radar. My mother had suffered from it for decades. So why did it take years to figure out I had the same thing? Part of this is because our symptoms are entirely different. For her, PCOS explained her extremely heavy period which 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 opposed experiences with menstruation? Is there a treatment? Is this the reason I feel so depressed and anxious? Will I be able to have children one day?
Instead of answering them, my doctor took his pen, jotted down some notes, and sent me on the road with a prescription for antidepressants and birth control pills. I had no history of clinical depression and in retrospect, the anxiety probably stemmed from the sudden chaos in me that the diagnoses triggered. As for birth control pills, he said that was the only treatment for the newly diagnosed syndrome that I have been living with for years.
Dissatisfied with his answers (or lack of it), I sent an email to my GP to let him know about my concerns. While I was used to him speaking in short, broken sentences, I expected a bit more advice. “If it’s not sexually active, don’t worry about the period just yet,” he wrote. “Enjoy life and use condoms if necessary. You should do this anyway. It’s not uncommon for periods to go away from time to time. Don’t lose sleep over it.
But, of course, I lost a lot by spending hours digging in the depths of the internet to find my condition every night. I have discovered that there is no single test to definitively diagnose PCOS and that there is no universally accepted definition. In fact, diagnostic criteria have actually broadened in recent years, according to the American College of Obstetricians and Gynecologists. So while I finally got a diagnosis, it was weirdly vague. And because my symptoms weren’t as extreme as some of my fellow cysts, I felt a sense of shame in the middle of my struggle. It all left me wondering what, exactly, am I in pain?
To my dismay, this was not something Google could answer. Although I have learned that PCOS is one of the most common causes of female infertility, affecting 5-10% of women of reproductive age in the United States. Despite the prevalence of the syndrome, it is considered one of the most overlooked public health issues. Women with PCOS are more prone to diabetes, sleep apnea, and heart disease, and three times more likely to develop endometrial cancer.
Considering the stakes, I couldn’t believe the doctors weren’t more sensitive to the symptoms. I was not alone in this feeling. Surveys show that women with the syndrome are very dissatisfied with their diagnostic experience. In a survey of 1,385 people with PCOS from 48 different countries – half of the United States – researchers at Monash University found that one in three women had suffered for more than two years before receiving one. diagnostic. They also went to three or more medical providers with different specialties in the process.
Antidepressants, metformin, spironolactone, herbal supplements, birth control – you name it, I tried it. Despite 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 going through all of my tests and noting the details of my saga. Most importantly, she helped me digest and understand medical terms in a way that no other doctor has ever tried. I learned that my body was making too much testosterone – the male sex hormone – and insulin, the hormone that manages our blood sugar. This, in conjunction with my low estrogen levels, was likely the reason for my missed periods, weight gain, and fatigue. I have learned that insulin resistance is strongly associated with PCOS, although it is not currently one of the diagnostic criteria.
Winer explained that birth control was not the right treatment for me because it suppressed my hormones more by continuing to “turn them off”. After careful consideration, she prescribed me hormone replacement therapy, known as HRT, to be taken on a cyclical basis to mimic a real menstrual cycle. This is a common menopausal treatment, but in my case the doctor was hoping it would wake up my endocrine system and cause it to produce these hormones.
Two months later, I had my first period in four and a half years. It wasn’t much, but in a way, that was it. It proved to me that my body was not broken. I weaned off hormones six months later, only to see my body function as it should. It was capable from the start. It just needed the right advice. I called my mom and we both cried.
After six years, three misdiagnoses, and countless ups and downs, I’ve finally found a way to manage my symptoms through medication, diet and exercise, all without giving in to a pill. unique. Some people keep track of kilometers traveled each week, others count calories; for me, the anchor that defines whether I’m healthy comes from the monthly rhythm of my period.
Two years and three months later, I can safely say that hitting the ‘Add Cycle’ button on my period tracker app never gets old.
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