Sound Advice from Experts on PCOS
Posted On Sep 15, 2016
Women with the often-misdiagnosed endocrine disorder PCOS have long suffered the consequences of embarrassing, unwanted body hair. But collective efforts & education are helping to ease the pain of its difficult symptoms.
By: Amy Zavatto
Dalny Marrero doesn’t look anywhere near 40. Easy to smile with big, honest, soft blue eyes, she wears her hair in an angled page-boy style with a sweeping side part that frames her pretty face and shows off her enviable pristine, honey-kissed skin. But it wasn’t always this way. Marrero spent the last three of her four decades of life suffering from polycystic ovary syndrome (PCOS), and one of its more emotionally harrowing and visible symptoms—excessive hair growth in places where most women don’t experience sprouting. She’s far from alone: This endocrine disorder affects approximately 5 million women annually in the United States alone, but in all likelihood, doctors estimate, millions more remain un- or misdiagnosed.
Despite contending with the harsh words and psyche-scarring cruelties she suffered growing up, Marrero is actually one of the lucky ones. Her hirsutism signaled a clear path to diagnosis. Through treatments at Ideal Image, a company of aesthetic professionals in 31 states and British Columbia that offers laser hair removal services via licensed medical and nursing staff—and who have created the Changing Lives Forever Foundation, offering free help to 100 in-need women annually—she was finally able to feel confident about both her health and her appearance. But for the undiagnosed others, PCOS remains a ticking time bomb.
What Is PCOS?
Recognized since 1935, PCOS was originally called Stein-Leventhal Syndrome, named for the first to pinpoint it, gynecologists Irving F. Stein, Sr., and Michael L. Leventhal. Classified as a condition of hormonal and metabolic imbalances, PCOS causes cysts to form on the ovaries. But there is more to it than that.
“It’s a syndrome—a group of symptoms we often see—but they are not necessarily from the same cause,” says Dr. Amber Taylor, an endocrinologist specializing in PCOS at the Diabetes Center at Mercy Medical Center in Baltimore, Maryland. “Often, the main parts are metabolic side symptoms; problems like acne, facial hair, and darkening of the skin, but also cysts on the ovaries that lead to decreased ovulation, as well and a predisposition to type 2 diabetes.” Actually, the name—polycystic ovary syndrome—is a bit of an inaccuracy.
Some women don’t experience ovarian cysts at all. “It’s a bit of a misnomer,” says Angela Grassi, a registered dietician and nutritionist who, as a PCOS sufferer herself, made it her life’s work to help women suffering from it through her company, the PCOS Nutrition Center, in Bryn Mawr, Pennsylvania. “We want to change the name because not all women get the cysts.” Which, of course, leads to evermore misdiagnoses of the problem. “The [cysts] may actually be less common than we initially thought—and they’re a symptom, not the cause of it. Even women who have no ovaries can have other symptoms going on,” says Dr. Taylor. “It’s confusing!
All these things that we lump together because we don’t have a key cause yet.” And therein lies the problem: PCOS is still far from being understood by the medical community at large. No known cause has been pinpointed.
What physicians do know is the syndrome disrupts a woman’s metabolic system, causing excessive weight gain, excessive production of insulin, and in the worst case scenario and possibly the most dangerous issue with PCOS, type 2 diabetes.
“I never really had a lot of symptoms. I had monthly periods and not a lot of acne, and didn’t have excessive hair growth, but when I was a senior in college I had an episode of low blood sugar with no explanation,” says Grassi. She was misdiagnosed as hypoglycemic, but as a student of dietetics and nutrition, Grassi was tuned into her body and knew something wasn’t quite right. An inexplicable and sudden burst of extreme weight gain—40 pounds in three months—also tipped her off to an obviously undiagnosed imbalance. Soon after when she married and wanted to start a family, Grassi sought the help of PCOS specialist Dr. Katherine Sherif in nearby Philadelphia. Her bloodwork showed high levels of testosterone.
Which is another big tip-off factor with PCOS: It shows up as excess androgen, or elevated levels of male hormones, something all women possess, but which is normally kept in balance with the presence of female hormone, estrogen. In this instance, a woman will experience severe acne; excessive body hair growth, like Marrero; or even thinning or balding of the tresses on her head.
“It’s a terrible thing. It’s very different than just having chin hair or some fuzz on the face. Some of our patients have full-blown beards. Hearing their stories is incredibly touching,” says Bruce Fabel, president of Ideal Image Development Corporation in Tampa, Florida, a laser-hair removal company that has focused much of its treatment on women in PCOS. “I was in one of our treatment centers and a 60-year-old patient hugged me with tears in her eyes and told me the treatments changed her life. Before, she didn’t want to go to church or the supermarket. It can be devastating.”
Finally, for women of child-bearing age, PCOS can cause irregularity to the menstrual cycle via the formation of cysts on the ovaries. “I went for an ultrasound and that’s when we saw the cysts on my ovaries,” says Grassi. “They looked like a string of pearls.” But that lovely image belies the deeper problem. During ovulation, fluid-filled sacs, or follicles, hold eggs and release them when they mature during the monthly cycle. But with PCOS, the follicles crop up, forming large cysts that trap the maturing eggs, never releasing them down the pike to bring on menstruation or for them to be potentially fertilized by sperm. Because of this, a woman with PCOS will have a menstrual cycle that stretches far and away past the usual 28 to 30 day cycle, skipped periods, no periods at all, or a menstrual cycle that lasts longer than a week and can be either extremely light or overly heavy.
While the cause of PCOS remains elusive, an ever-mounting pile of evidence points to the fact that PCOS is genetic. “We think that it does have a strong genetic predisposition,” says Dr. Taylor. “Many women in a family will tend to have it. But as far as what the mechanism is that causes it? We don’t know yet.” Grassi agrees: Her sister, it turns out, was diagnosed with PCOS as well.
One of the biggest ways to wrangle control over the effects of PCOS—and, especially, PCOS-induced diabetes—is nutrition, which Grassi learned firsthand when getting her own PCOS symptoms under control. “Most people with PCOS have higher levels of insulin. A healthy diet is extremely important,” coaches Grassi. “Avoid foods that can spike your insulin levels, like sugary foods or sodas, juices, and flavored waters, as well as refined carbohydrates and processed foods like white rice, crackers, a lot of cereals, and baked goods.” What should you eat? Whole grains, quinoa, brown rice, and sourdough bread, as well as lots of fresh veggies and fruits, legumes, and foods high in omega-3 fatty acids and unsaturated fats, like fish, nuts, seeds, olive oil, and avocado.
“I try to get people not to focus on what they shouldn’t eat,” offers Grassi, whose book, The PCOS Nutrition Center Cookbook: 100 Easy and Delicious Whole Food Recipes to Beat PCOS ($25, Luca Publishing) hits shelves in September 2015, “but what they should eat more of.”
For women like Marrero, physical remedies like laser hair removal have helped to ease the devastating outer burdens of PCOS, important not only for healing emotional scars but putting them on a good foot forward in healing the physical ones as well. Feeling positive about one’s appearance, after all, affords the once-lacking confidence to get back to the gym or outdoors to increase physical activity, vital in controlling PCOS-induced weight gain and potential issues with diabetes.
“I was very self conscious—I had very coarse hair on my legs, hair all over my arms. I had big sideburns, actually, when I was growing up. They used to call me Elvis… they used to call me Sasquatch. Not only does it hurt you self-consciously, but it causes depression because everybody’s having fun, jumping in the pool, showing their skin, and feeling sexy—and you’re not. It was very painful to grow up with,” says Marrero. “I’m not afraid to show skin anymore.”
This year, Ideal Image created the Changing Lives Forever Foundation, which will give away free hair-removal laser treatment to 100 women in North America who suffer from PCOS-induced hirsutism, and who normally could not afford the expense of hair-removal services. “It’s not a cheap procedure by any means,” says Fabel. “The effects aren’t just physical, they’re emotional. We had one patient who didn’t want her son to touch her. He said to her, ‘How come your face feels like Daddy’s?’,” says Fabel. “She didn’t want him to touch her face because it was prickly. Now her life is changed.”
Ideal Image staffers are registered nurses, nurse practitioners, and physicians assistants with an extra 120 hours of requisite training in laser hair removal technology on top of their already credentialed education and training. The company also subcontracts with registered dieticians, says Fabel, to counsel PCOS sufferers on the all-important role that diet plays in getting the disorder under control. To learn more, or to apply for one of the Changing Lives Forever packages, contact Ideal Image at idealimage.com or 1-800-BE-IDEAL.