Ask anyone in a sorority and they will tell you that sisterhood is priceless. I’m not in a sorority, but I am not a stranger to the concept. I have two biological sisters of my own and recently joined another sisterhood inadvertently: the women suffering from polycystic ovarian syndrome (PCOS).
Sure, it’s not your typical social club. It is certainly not as much fun. But women with PCOS have a bond as close as you would find in any sorority. We are a scientific cysterhood, you might say.
I first caught a glimpse of my emerging PCOS when I gained close to 40 pounds in six months. I was in my second year of college, and though I was well aware of the “freshman 15,” I was doubtful that a “sophomore 60” was another rite of passage. I had low energy and extreme mood swings. I had my thyroid levels checked more times than I can count.
Polycystic ovarian syndrome is a common but complex endocrine disorder affecting a woman’s hormones, metabolism and reproductive capabilities. It is the leading cause of infertility among women. Some 5 to 10 percent of women suffer from the disorder worldwide, and the number in the U.S. is as high as 15 percent and climbing. But as common as it is, it is equally confusing.
The name of the disorder suggests multiple cysts in the ovaries, which is only partially true. You do not need to have any cysts to be diagnosed with the syndrome. To add even more ambiguity, the “cysts” associated with the disorder are more accurately categorized as “follicles,” since they are not lined or fluid-filled, and are significantly smaller than the typical cyst. The National Institutes of Health’s PCOS workshop panel even moved to rebrand the syndrome, since the current name “causes confusion and is a barrier to effective education.”
Misnomers aside, the syndrome has some characteristic symptoms that wreak havoc on the body. One of the hallmarks of PCOS is hyperandrogenemia, or extremely elevated levels of male hormones (testosterone, DHEA and more). Hormone imbalance by itself can cause many side effects—excess body hair, mood swings, anxiety and depression, insulin resistance, and uncontrolled weight gain, to name a few. In addition, PCOS women usually have irregular ovulation, which can make it hard to get pregnant regardless of whether the mother is otherwise fertile.
On top of the day-to-day challenges, women with PCOS are at much higher risk of life-threatening diseases. According to the advocacy group PCOS Challenge, polycystic ovarian syndrome makes a woman more likely to develop cardiovascular disease or type 2 diabetes. In fact, the NIH predicts that over half of women with PCOS will have diabetes or prediabetes by the age of 40. These women are also two to four times more likely to develop some types of reproductive cancers such as endometrial or breast cancer.
Once I finally learned that I had PCOS, I tried numerous unsuccessful treatments. I started wearing an estrogen patch, which made me so depressed that I was lying in bed for most of the day, bawling my eyes out to Coldplay songs. I took inositol, an alternative to synthetic progesterone. I drank turmeric and cinnamon. And I ended up taking metformin, a diabetes drug and common off-label treatment for PCOS sufferers with insulin resistance.
These are all accepted treatments for PCOS, along with the inevitable recommendations about diet and exercise. None of them are perfect remedies, and thus there is no official cure for the syndrome. Doctors constantly emphasize the importance of lowering weight and body fat, but weight loss is nearly impossible because of the unique hormonal and metabolic challenges of PCOS.
As for the cause of PCOS, the story gets even more convoluted. The syndrome was first described over 80 years ago by the gynecologists Irving Stein and Michael Leventhal, yet researchers today are not much closer to figuring out the root of the problem.
At the Endocrine Society’s annual meeting in San Diego this past March, experts brought up plastic as a potential aggravator of PCOS. Microplastics get into the body from food and water. Once there, plastic is a major endocrine disruptor because it mimics hormones in the bloodstream. The Endocrine Society’s official scientific statement notes that chemicals found in common household plastics have been linked with PCOS in both rats and humans.
The fact that genes underlying the syndrome continue to be passed on in such high volume is puzzling for scientists because PCOS decreases fertility, thus minimizing reproductive success. Many people have posed explanations for this confusing genetic inheritance, such as the idea from Sabine Eggers and her colleagues that childless women have inclusive fitness because they help raise other women’s children. I am unconvinced.
In 2017, another theory started gaining traction when a study led by Paolo Giacobini claimed to identify both the cause and the cure for PCOS. In experiments on mice, Giacobini’s team traced elevated levels of two hormones, anti-Mullerian hormone (AMH) and gonadotropin-releasing hormone (GnRH), that when present in the womb caused fetuses to develop PCOS. GnRH is inhibited by various well-known cancer medications, so by treating adult women doctors could, in theory, prevent future generations from developing PCOS. Researchers and patients were temporarily abuzz, but with a big caveat. The potential cure was only viable for PCOS mice without excess body fat, meaning it is not applicable to most cases of the syndrome.
Even with theories like these swirling around the scientific community, there is still no cure, no comprehensive treatment and no definitive cause for PCOS.
Doctors often fail to diagnose people with this condition—so often that 50 percent of women with PCOS do not know they have it. In a survey published in the Journal of Clinical Endocrinology & Metabolism, nearly half of women visited three or more doctors and a third of them took more than two years before receiving a PCOS diagnosis.
The general public and scientific community are equally slow on the uptake. Even though more than 10 million American women might suffer from PCOS, the NIH research budget is significantly lower for PCOS than other prominent women’s health issues.
Why? For one, PCOS is extremely complicated, possibly without much payoff for big pharmaceutical companies. There have been fewer than a thousand clinical trials ever conducted on PCOS patients, and only about 10 percent of these were done by industry.
Likewise, polycystic ovarian syndrome involves a complex network of scientists, physicians and patients. The breadth of different disciplines involved makes knowledge-sharing difficult. The field is ill defined, and scientists have barely even come to a consensus about what the syndrome is.
PCOS affects women only, yet without the celebrity status of other women’s health issues like breast cancer. But if the #MeToo movement or International Women’s Day are indicators, today’s women are not willing to sit idle. Enter the PCOS sisterhood.
Women from all walks of life are banding together on social media to support each other and learn more about their PCOS. Actress and comedian Lauren Ash, famous for her role in the NBC show Superstore, accidentally became an activist for PCOS when she announced her diagnosis on Twitter. “It was one of the best things I ever did,” she said in an interview with Women’s Health Magazine. “Within hours I had thousands of replies and messages from other women saying, ‘No way! Me too!’” She decided to make an Instagram page (@pcos_sisterhood) where she accepts the stories, advice and questions of other “PCOS warriors.”
Support groups have been working tirelessly to gain awareness for the syndrome. The organization PCOS Challenge met on Capitol Hill in March for a PCOS Advocacy Day, with Lauren Ash joining the group to speak to lawmakers. The PCOS Awareness Association recently established September as PCOS Awareness Month.
Although there have yet to be major strides in funding and discovery, patients have been active in making incremental changes and providing support to one another. The countless social media pages dedicated to PCOS have actually been able to contribute to the knowledge base by aggregating data from women with the syndrome. For instance, women have uncovered a high incidence of PCOS-related binge-eating disorders and have helped to reveal the inefficacy of some formerly accepted treatment plans.
PCOS is on the rise worldwide and is especially problematic in the U.S., where there is an existing infertility crisis. We need to prioritize PCOS research. It significantly impacts every woman who endures it. If you suffer from polycystic ovarian syndrome, take this chance to become part of the sisterhood—and know that you are not, so to speak, ovary-acting.