What it's like having PCOS and a chronic invisible illness
I have PCOS.
After suffering from years of symptoms related to the illness and visiting multiple doctors seeking answers, I decided to venture to a new gynecologist who touted “Specializes in PCOS” on their website hoping to find someone who would believe me and listen to my symptoms.
It took my doctor less than ten minutes to diagnose me, and it was all very impersonal. It caught me off guard. For years I suffered. I had multiple surgeries, took birth control, tried and failed to lose weight. And then suddenly, I had PCOS. The whole ordeal was like when you discover you dislike something. It doesn’t take very long and doesn’t require much.
After my gynecologist gave me the news, I sat in that cold, dimly lit doctor’s office, and didn’t move for a while.
“Mom, I have PCOS,” I said into my headphones as I drove from the doctor’s office. I had taken the whole day off to have multiple appointments, and the gynecologist was the last appointment.
“So what does that mean?” she asked.
“Well, it means that I have a hormonal disorder. My body is producing more male hormones that normal, thus causing irregular periods, the acne, hair growth. It’s what made me fat,” I laughed sheepishly. “I’m relieved I know what’s wrong.”
The relief came from knowing that I wasn’t crazy. That the years of chronic pelvic pain, weight gain, endlessly growing hair, and acne weren’t things that I was bringing on myself. That the mood swings weren’t me—but a byproduct of the hormonal imbalances in my body. That the irregular periods weren’t normal. That I wasn’t just making up my symptoms, but I had an actual chronic illness that was serious and needed to be taken seriously.
“I know. Now you can do something about it.”
I didn’t have to explain to my mom why I was relieved. She understood.
In 2003, she took me to my pediatrician and then the children’s hospital when I had such excruciating pelvic pain that I couldn’t walk. We thought it was a side effect of another horrible menstrual cycle, but my period wasn’t due for weeks, even though it was irregular. After multiple tests at Children’s Healthcare of Atlanta, a doctor finally recommended that we complete an ultrasound of my ovaries. I had emptied my bladder for the X-Ray they had taken just minutes before, so they proceeded to insert a catheter into my vagina to refill my bladder, which was necessary for the ultrasound. That’s when they discovered I had two ovarian cysts sitting on my ovary. One was the size of an acorn, the other had swelled to the size of an orange. They scheduled me for emergency surgery and an hour later a male nurse was wheeling me down the halls to the O.R.
We stopped to take my picture before going into the O.R. and I smiled the brightest and whitest smile I could muster.
“You know most people don’t smile when they get their picture taken before surgery,” he said to me.
“I’m not most people,” I explained.
That surgery would turn into others over the years. Small laparoscopic surgeries to remove ovarian cysts, accompanied by irregular menses and pelvic pain so horrible I couldn’t go to work. It was a cycle that plagued me for years after that first surgery at age 14.
Being diagnosed with PCOS was the best of the worst thing that could happen to me, and my mom could tell by the strength in my voice that I did feel relief. I didn’t want to ruin her vision of me by also telling her that I was panicked. Would I have to have more surgeries? Would I ever be able to lose the weight? Would my skin go back to normal? Would I be infertile? Is this why I’ve been feeling depressed? Will it stop?
I had so many questions that my doctor hadn’t answered about the chronic illness, and while there is more information available for PCOS-sufferers now, ten years ago information on the disease was scarce.
PCOS affects nearly 5 to 10 percent or 5 million women of childbearing age in the U.S., and 6 to 10 percent of women worldwide. It’s a startling statistic, and more so because 70% of women are undiagnosed. And that was me—until a few months ago, no doctor could tell me what was wrong. They kept saying “Just diet and exercise. Drink lots of water. Take birth control.”
PCOS is the most common hormonal endocrine disorder for women. It can take women several years and up to seven doctors before they find someone who can help them with the condition. Every doctor I went to was largely unhelpful, they didn’t believe my symptoms, or they simply misunderstood the signs of the disorder. Part of the problem is that there isn’t a definitive test for PCOS available—it’s a diagnosis of exclusion. So while a womyn may be getting their acne treated by a dermatologist, irregular period by a gynecologist, and weight gain by a dietician, they don’t necessarily have all of your health history, and may not ask about it in order to properly diagnose.
The birth control was always the solution given to me by doctors, but I had been on birth control since I was 14, and nothing really changed. I felt stuck and immobile, which many women of color or folks with chronic invisible illnesses have expressed in other articles, stories and support groups.
The thing about having a chronic invisible illness like PCOS is that while people may be able to physically see some of the symptoms, such as weight gain, acne or hair growth, these symptoms aren’t synonymous with the disease and won’t make people do a double-take. Unless your disability or illness is physically-obvious, able-bodied people often assume you’re just like them, and people with invisible illnesses are often marginalized through the media and community itself. They could merely assume the weight gain is from lack of proper exercise and diet, or the adult acne as a hygiene problem. They don’t realize that there’s an entire chemical hormonal imbalance occurring inside your body that produces these symptoms and makes it almost entirely impossible to manage. Most people have no idea what it is like living with a chronic illness, let alone an invisible one like PCOS. And that’s not to mention dealing with the stressors that come with life and strict work schedules, insurance coverage, and functioning day-by-day.
After a few months of living with my diagnosis, I have tried to tell myself that the depression I feel is fleeting. That the weight will begin to slide off—I will feel comfortable in my own body again. That my menstrual cycle will regulate. That the pain, isolation, and anxiety I feel around explaining my disorder will get better over time. That my fear of infertility is valid, but that miracles happen.
That I will get better.
It is one of the most underfunded and misunderstood illnesses affecting women worldwide. Understanding the illness and treating it can prevent serious health risks. The sooner a womyn is diagnosed, the better their chances of receiving the care they need to fight off other potential disorders. Women with PCOS are three times more likely to develop endometrial cancer than those without; it’s the most common cause of female infertility; and, it also increases your risk for diabetes, high cholesterol, and high blood pressure.
And, while I work towards getting better, I will advocate for those of us with PCOS. This disease is relentless, and we need to be relentless in our advocacy to find a solution.
To learn more about PCOS, visit: http://pcoschallenge.org/