Three weeks before Christmas, I had finally had enough and booked a doctor’s appointment. My body was telling me something was wrong and I couldn’t put my finger on it. I was bloated and gaining weight rapidly, my skin was breaking out (especially around my chin), and I hadn’t had a period in months. When my doctor told me I’d need more tests, I was disheartened. “But I am pretty sure I know what’s going on here; I think you have PCOS - polycystic ovarian syndrome.” Those four letters changed the course of my life immediately and irrevocably.
September is PCOS Awareness Month. According to the Polycystic Ovarian Syndrome Awareness Association, or PCOSAA, one in five women will develop PCOS in their lifetime. The awareness ribbon is teal and is the inspiration for PCOSAA’s #IPledgeTeal fundraising campaign. Progress is slow for this condition, as experts are uncertain what causes the dysfunction. Still, 2019 has seen massive improvements in potential treatment options for those suffering.
What Is Polycystic Ovarian Syndrome?
Most doctors believe PCOS is caused by a combination of genetic and environmental factors, but science has yet to reach a consensus despite recent advances. The name itself is a bit misleading; many with PCOS don’t have cysts on their ovaries! In reality, PCOS encompasses a wide range of symptoms. In 2013, a panel of experts petitioned the National Institutes of Health to change the name of the condition so as to avoid confusion and misdiagnosis. In general, PCOS is a hormonal imbalance that involves androgens, insulin, and progesterone.
The Impact Of A PCOS Diagnosis
Those who suffer from PCOS are far from alone as experts estimate around 10 million women worldwide cope with the condition. Polycystic Ovarian Syndrome is the leading cause of infertility; hormonal imbalance often means women with PCOS don’t ovulate and therefore cannot conceive. Because infertility is so prevalent among women with PCOS, many doctors encourage their patients who wish to have children to try to conceive soon after their diagnosis. Of course, assisted reproductive technology can help many couples conceive even with a PCOS diagnosis.
Some “cysters”, or women with PCOS, experience feelings of shame or embarrassment over the symptoms of the condition. Acne, excess hair, mood swings, and weight gain can wreak havoc on a person’s mental wellbeing! This is why the best providers encourage their PCOS patients to consider the condition both physical and emotional.
Living with chronic pain can alter an individual’s personality. Pelvic pain from PCOS is often misdiagnosed or outright dismissed by doctors who are unfamiliar with the condition. Many go years without understanding what’s happening to their own bodies or how to alleviate their symptoms. Unchecked PCOS is linked to heart disease, diabetes, hypertension, and high cholesterol - so it’s imperative that patients advocate for themselves if they feel overlooked!
Recent Advances In PCOS Treatment
Even though there is still no cure for PCOS, doctors have made huge strides in pinpointing the probable cause. Paolo Giacobini at the French National Institute of Health and Medical Research published finding that those with PCOS have an excess of the anti-Mullerian hormone. The researchers hypothesize that while in utero babies are awash in the hormone, leading to permanent changes to their hormonal balance. It appears as though the condition is genetic because mothers with PCOS have higher anti-Mullerian levels and therefore provide the environment that produces PCOS in the baby later in their life.
In mice with PCOS, doctors have been able to counteract this flood of the anti-Mullerian hormone with an already-available IVF drug called cetrorelix. After receiving cetrorelix, mice with PCOS showed a reversal of their symptoms. While Giacobini doesn’t claim to have found a cure, his experiments may lead to the best available treatment for people with PCOS.
After I was diagnosed with PCOS, my husband and I decided to move up our timeline on having children. I poured myself into research and decided to change my lifestyle. Adding exercise and eating a low-carb diet controlled my insulin resistance (a symptom of PCOS), eliminated my pelvic pain and bloating, and helped me to conceive within months. Knowing that I have PCOS has helped me cope with the symptoms and encourage others to ask their doctors about their own. Don’t wait - it’s PCOS Awareness Month and it’s the perfect time to take charge of your health!