PCOS Magazine

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Volume 2, Issue 1

Sept./Oct. 2009

pcos teens also:

~a review of Fairhaven Health products ~long-term emotional effects of PCOS ~monika woolsey & incyst


From the Editor

When I was a teenager... I spent a lot of time trying to figure out why my body wasn’t working quite right. On top of trying to figure out the opposite sex, working on my grades, thinking about college, going to extra-curricular activities, and the whatnot, I had whacky hormones to worry about. My acne was horrible, my periods were all over the calendar, I had this weird hair growth thing going on all over my face. It was not a fun experience. I was diagnosed with PCOS almost a decade ago. That said, I now know I was fighting with it in my teens. This issue of PCOS Magazine, for this and many other reasons, is partially devoted to teens with PCOS. I want to make sure any young ladies dealing with the disorder know that they’re not alone, that their problem is understood, and that there are resources for them. Also featured in this issue is an introduction to the inCYST network from Monika Woolsey. inCYST is a network of professionals from many walks of healthy life that are devoted to educating women and girls with PCOS about being healthier and promoting wellness. New to the magazine but not to PCOS is Holly Amarandi, who has written a great article about learning to love exercise. Holly’s article is vivid and provides some great advice about getting used to an exercise regimen (even if you think you’ll hate it). I should take her advice! Enjoy this issue of PCOS Magazine, and share your comments and story ideas with us too!

Linda Harvey Editor

lmharvey@pcosmagazine.com

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Blank Page LLC Linda Harvey, member Joshua R. Yates, member Editor Linda Harvey Contributing Writers Holly Amarandei Angela Grassi Monika Woolsey Additional Content Courtesy of: Newswise PR Newswire Photography & Artwork Courtesy of: Morguefile.com Pien Duijverman Eva Sajdak (PinkonHead.com) The editorial content of PCOS Magazine is prepared in accordance with the highest standards of journalistic accuracy. Readers are cautioned, however, not to use information from the magazine as a substitute for regular professional health care. Editorial Contact Information: 1325 W. Sunshine, #513 Springfield, MO 65807 Phone: (417) 827-8460 E-mail: editor@ pcosmagazine.com PCOS Magazine is available online from:


PCOS Now

Tai chi can help people with diabetes lower glucose levels

Newswise — A regular tai chi exercise program can help people better control their diabetes and lower glucose levels, according to a University of Florida study. In a study of adults diagnosed with type 2 diabetes, those who participated in a supervised tai chi exercise program two days a week with three days of home practice for six months significantly lowered their fasting blood glucose levels, improved their management of the disease, and enhanced their overall quality of life, including mental health, vitality and energy. “Tai chi really has similar effects as other aerobic exercises on diabetic control. The difference is tai chi is a low-impact exercise, which means that it’s less stressful on the bones, joints and muscles than more strenuous exercise,” said Beverly Roberts, Ph.D., R.N., the Annabel Davis Jenks endowed professor at the UF College of Nursing. Roberts, with Rhayun Song, Ph.D., R.N., of Chungham National University, studied tai chi’s effect on older Korean residents. The research was featured in the June issue of The Journal of Alternative and Complementary Medicine. Tai chi is an ancient Chinese martial art that combines deep breathing and relaxation with slow, gentle circular movements.

This low impact exercise uses shifts in body position and stepping in coordination with arm movements. Sixty-two participants, mostly Korean women, took part in the study. Half the group participated in at least 80 percent of two supervised sessions one hour per week, with three days of home practice for six months, and the other half served as a control group. Those who completed the sessions had significantly improved glucose control and reported higher levels of vitality and energy.

Tai chi has also been used for people with arthritis and disabilities to increase balance, muscle strength and mobility and to reduce the risk of falls. It is worth investigating its effects in other conditions, especially in older people, Roberts said. “Tai chi provides a great alternative for people who may want the benefits of exercise on diabetic control but may be physically unable to complete strenuous activities due to age, condition or injury,” Roberts said. “Future studies could examine if tai chi could similarly benefit conditions such as osteoporosis or heart disease.” Since tai chi is an exercise that involves so many parts of the body and also helps to relax the mind, it is more likely participants will adhere to the exercise, said Paul Lam, M.B.B.S., a lecturer with the University of South Wales School of Public Health and Community Medicine.

“Those who participated in the tai chi sessions actually had lower blood glucose at three and six months,” Roberts said. “Those individuals also had lower hemoglobin A1c, which means they had better diabetic control.” In addition to improved blood glucose levels, participants also reported significantly improved mental health. This was very encouraging especially since people with less depression are typically more active and independent, Roberts said.

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PCOS Now

Women With Diabetes at Increased Risk for Irregular Heart Rhythm Kaiser Permanente study finds association between diabetes and atrial fibrillation

PORTLAND, Ore., – Diabetes increases by 26 percent the likelihood that women will develop atrial fibrillation (AF), a potentially dangerous irregular heart rhythm that can lead to stroke, heart failure, and chronic fatigue. These are the findings of a new study, published in the October issue of Diabetes Care, a journal of the American Diabetes Association.

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While other studies have found that patients with diabetes are more likely to have

AF, this is the first large study--involving nearly 35,000 Kaiser Permanente patients over the course of seven years--to isolate the effect of diabetes and determine that it is an independent risk factor for women. “The most important finding from our study is that women with diabetes have an increased risk of developing this abnormal heart rhythm,” said the study’s lead author, Greg Nichols, PhD, investigator at the Kaiser Permanente Center for Health Research in Portland.

“AF is the most common arrhythmia in the world, and diabetes is one of the most common health conditions. Our study points out that there is a connection between these two growing epidemics-one we should pay closer attention to, especially among women,” says Sumeet Chugh, MD, co-author and associate director of the CedarsSinai Heart Institute in Los Angeles. “The gender differences need to be looked at more closely because they could have significant implications for how we treat diabetes in men and women.”

Atrial fibrillation occurs when the two upper chambers of the heart beat irregularly and too fast, causing blood to pool and clot. If the clot travels out of the heart and becomes lodged in an artery or in the brain, it can cause a stroke. About 2.2 million Americans are diagnosed with AF; however, many more people have the condition but don’t know it. According to the study, nearly 4 percent of diabetics, or 1 million, have atrial fibrillation. The study involved 17,372 patients in Oregon and Washington and an equal number of non-diabetic patients, matched for age and sex. The two groups were followed for an average of 7.2 years until Dec., 31, 2008 or until they died or left the health plan. At the start of the study, 3.6 percent of the patients with diabetes had AF, vs. only 2.5 percent of the non-diabetic patients--a difference of 44 percent. During the study period, diabetics were more likely than non-diabetics to develop AF. But after controlling for other factors like obesity, high blood pressure and age, the increased risk was only significant among women. Women with diabetes were 26 percent more likely than their non-diabetic counterparts to develop AF.


Launch of National Video Campaign Illustrates Broad Public Support for Addressing Crisis of Chronic Disease WASHINGTON – The Partnership to Fight Chronic Disease (PFCD) recently launched an online grassroots campaign, “Say ‘Yes’ to Health Reform” (www.sayyestohealthreform.com), that voices support for health reform that prioritizes prevention and wellness and helps Americans fight common chronic diseases such as diabetes, heart disease, arthritis, asthma and cancer. The newly-released Web-based video campaign puts a human face on the crisis of chronic illness in an effort to draw the attention of national policymakers -- now engaged in intense debate on health reform in Washington -- to the profound impact of this crisis on Americans’ health, well-being, and ability to access affordable, high quality health care. Nearly one in two Americans has a chronic illness, and more than 75 cents of every dollar spent on health care in the U.S. is spent treating patients with one or more chronic diseases.

video testimonials of Americans from communities across the country talking about why they “say ‘yes’” to comprehensive health reform that tackles issues of affordability, access and quality brought on by our nation’s high rates of poorly prevented and mismanaged chronic disease -- and why they “say ‘no’” to the status quo. The videos represent a diverse mix of concerned individuals -- from patients and caregivers, to physicians, nurses and other clinicians, to business owners and local leaders. Many live with a chronic illness or care for a chronically ill family member. To date, the “Say ‘Yes’ to Health Reform” campaign features over

100 videos from the 17 states where the PFCD has chapters, including Arkansas, Colorado, Connecticut, Delaware, Illinois, Indiana, Iowa, Maryland, Minnesota, New Hampshire, New Jersey, North Carolina, Ohio, Pennsylvania, South Carolina Washington, and Wisconsin. Through the remainder of the health care debate, the campaign Web site will be continuously updated with new video testimonials, which will be sent to Congressional members representing those states or districts. For more information about the PFCD and its partner organizations, please visit: www.fightchronicdisease.org.

“With the health care debate in full force ‘inside-the-beltway,’ it’s become harder to hear what people are saying outside of Washington,” said Ken Thorpe, Ph.D., Executive Director of PFCD. “With this campaign, we’re reminding policymakers of what’s at stake in health reform and who they’re doing this for: Americans, both insured and uninsured, who are asking for higher quality, more affordable and more accessible health care and a health care system that does a better job helping them prevent, detect and manage common chronic diseases.” The campaign Web site features

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REVIEW: Fairhaven Health specializes in natural fertility, pregnancy and nursing products. They offer a combination of both OTC pharmaceutical supplements and non-pharmaceutical fertility and conception aids for women. They feature a number of reviews on their site from women whose doctors suggested the use of their products during the prenatal periods. For those of you women who like to take a natural approach to conception, they’ve got some really great products to choose from. According to Ethan Lynette, partner in Fairhaven Health, the company started in 2002 by introducing a fertility supplement called FertilAid for Women. “We believe there is a growing demand for safe, natural, and affordable alternatives to more invasive and costly infertility treatments,” Ethan says. Fairhaven Health’s products are all produced in the United States.

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For those with PCOS, also knowing when ovulation *could* occur is a good thing. Fairhaven has produced a Pregnancy Wheel and Ovulation Calendar that spoke right to my analytical side. It allows you to adjust the wheel to your cycle length, to pinpoint when you are menstruating, when you might ovulate,

and then helps you track the different phases of pregnancy. In taking a good, strong look at this wheel, I noticed it also pointed out when amniocentesis, ultrasounds, and glucose screens should be done during the pregnancy cycle. On the back of the wheel are numerous preconception calendar tips. A great little resource! While PCOS is not the only focus of Fairhaven Health, Ethan says the company receives lots of feedback from women with the disorder. “While we don’t focus on it specifically, we get a great deal of positive feedback from women with PCOS who have had success using FertilAid. Ensuring regular ovulation is very important to boost one’s chances of conceiving.” Fairhaven Health’s highly successful yoga DVD is entitled “Bend, Breathe, and Conceive: Fertility Yoga,” and it was produced with Anna Davis, Ph.D., RYT. Its focus is on what’s called gentle flow yoga, with guided meditation, for all levels of yoga practitioners. On the back of the DVD are a few great little kernels of information about the connections between stress and fertility. They’re a little hard to read due to the background color, but

good information. The one that caught my eye, and even made me think about how stress affects my body, was “learn how daily anxieties and ‘fertility frustration’ can trigger the release of stress hormones that disrupt the health functioning of the reproductive system.” QUICK — where’s my yoga mat? Fairhaven’s Fertile Flame is said to combine fertility-enhancing scents with the ritual of lighting candles to improve emotional and mental wellbeing. As frazzled as we can become from our crazy lives, something that helps you center is always welcome. The candle is a combination of three scents — chamomile, jasmine, and ylang ylang. It’s potent, but soothing, made of soy wax, in its own container. Don’t be concerned if your candle arrives and there are a few small chips of wax on the top of it. This will happen in transport. You haven’t lost much. “It feels good to be in a position to help women who have been struggling with infertility, and to do so in a way that is both safe and affordable for them,” Ethan says. “We partner with a respective fertility expert and Ob/Gyn to formulate our products, and the reContinued on page 18


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eat healthier now=

less problems later!

Important Nutrition Needs of Teens with PCOS Believe it or not, one of the best things about having PCOS is being diagnosed at an early age. An early diagnosis can make a huge difference in your health. Making lasting changes to your eating now can prevent PCOS from getting worse in the future and even prevent you from getting diabetes. When you decide to have a baby, establishing healthy eating habits now can also help you get pregnant. The root cause of PCOS is believed to stem from insulin resistance. Therefore, a healthy diet for PCOS is one that focuses on reducing insulin. This can be achieved by eating a diet that is primarily based on whole grain foods, lean proteins and omega-3 fats. Yet despite having PCOS, teenagers are in the process of completing their growth and development; they have specific nutrition needs to be aware of, many of which can also help with improving PCOS. Below are some important nutrition needs you may want to think more about having in your diet. Whole grains. Did you know that eating the right type of carbohydrates can make a significant difference in your PCOS symptoms and help with weight management? This is because of the nutrients found in whole grains, such as chromium, magnesium and selenium, along with dietary fiber and antioxidants work to improve insulin levels and decrease the risk of cancer and diabetes. Whole grains can even improve your insulin and blood pressure. Fruits, vegetables, legumes (beans, lentils and peas) and whole grain starches are examples of whole grain foods.

You can easily spot whole grains in the grocery store by looking at food labels. If the word ‘whole’ is part of the first ingredient, you’ll know it’s a whole grain food. The key is to make sure you have several servings of fruits and vegetables each day. Also, try replacing foods that are refined (foods without the word ‘whole’ in the first ingredient) with ones that are whole. For example, instead of white bread or white rice have wheat bread and brown rice. There are now many whole grain alternatives to refined foods. Even whole wheat pizza dough is now available, making it easier to eat out with your friends. Bonus: Whole grain foods are rich in fiber so they’ll keep you fuller longer. Vitamin C. Vitamin C keeps you from getting sick and helps your body fight infections – it can even keep your skin looking good and help you absorb more iron (see below). Citrus fruits such as oranges, kiwi and lemons, tomatoes, red pepper and sweet potatoes are great sources of vitamin C. Eat these types of foods on a daily basis and you will easily meet the recommended amount of 60 mil-

BY ANGELA GRASSI, MS, RD, LDN

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ligrams. Bonus: Vitamin C will help your body absorb more iron. Iron. Your body is continuing to grow up until around age 18. Growth requires adequate amounts of iron, a necessary mineral that helps your cells carry oxygen and provide energy. Iron-deficiency anemia is one of the most common diet-related deficiencies during adolescence. It can be caused by not eating enough iron-rich foods and/or heavy bleeding during periods. Having low iron stores results in chronic fatigue, bruises, pale skin and poor wound healing. Ironrich foods include lean meats, fish, dark green leafy vegetables, beans, iron-rich cereals and other grains. Here’s a great tip: Eating vitamin C with an iron-rich food maximizes the amount of iron you absorb. So, for your next breakfast, try having an orange with your bowl of cereal or strawberries with your sandwich at lunch. Bonus: Iron-rich foods will also help to improve your eyesight. Lean protein. Protein is an important part of a health diet for PCOS – so much so that protein should be included with every meal and snack. The reason? Protein


helps stabilize blood sugar levels by decreasing insulin surges and keeps you fuller between meals. Eating protein with meals and snacks may even help manage cravings. Choosing proteins that are lean (less fattening) are the most healthful as they lack the saturated fat and cholesterol of their full fat counterparts. Some examples of lean proteins are skinless chicken, turkey, tofu, eggs, low-fat cheese and yogurt. Bonus: Lean proteins are low in calories and make meals more satisfying. Calcium. Right now at your age, your bones are acting like a sponge. They absorb calcium like crazy which is good because after around age 30, your bones can start getting depleted of calcium. Think of it this way: You are saving up calcium like a retirement account. The more calcium you build up and put away now, the longer you will have it later. You should aim for 1,200 milligrams of calcium each day. This amount will reduce your risk for developing osteoporosis later in life. Dairy foods (milk, cheese and yogurt) are excellent sources of calcium. To give you an idea, 8 oz. Continued on page 19

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You Only

THINK You Hate to Exercise {By Holly Amarandei }

A couple of years ago, I came across this great website that advertised challenging 75-minute outdoor workouts that could burn up to 700 calories. Never being a fan of working out in a gym, this sounded perfect! I decided to try it even though I was a little nervous that I wouldn’t be able to keep up. After all, I couldn’t help but remember the time I got off the bike after a spin class and passed out cold. Or the time I had to run out of a kickboxing class and vomit into a bush. Once the class got going, I became very aware of exactly how out of shape I was. The leader walked faster than anyone I have ever seen. I struggled to stay in sight of the rest of the group. I’d love to say that I had fun chatting with the other newbies, but I was breathing much too hard to talk to anyone. I felt all right until the leader pointed to this very large hill and said we were going to climb it. The really athletic people were having trouble climbing up, so I began to panic a little. I tried

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not to let it show as I put one foot in front of the other, grabbing onto trees and trying not to fall to my death. My fear of heights started to kick in, and there was a point when I wanted to just climb back down and forget the whole thing. But the leader was understanding and kept offering positive encouragement. I did reach the top, and as everyone disappeared into the distance, I had to stop a minute and throw up. No one saw me, which kept my ego intact, and I was quite proud that I managed to avoid passing out. I trekked on, and finished the work out. And I went back the following week. And I still go. I chose not to focus on the nausea, vomit and lightheadedness but rather on the benefits that came with a more active lifestyle. Exercise is a crucial part of selfcare. It is the ultimate way to honor yourself and your body. It is a great stress reliever as well and can even serve as a form of meditation. Research has proven that exercise can be as effective as medication in treating depression. You deserve to look and feel great, and you need to make time for this. You have probably been told by more than one professional that exercise is part of the prescription when it comes to fighting PCOS, and you may be viewing it as something that you “have” to do, which may be keeping you from actually doing it. So how do you start working out and keep yourself motivated long enough to see results? You need to change the way you think about physical activity. And you need to change the way you talk to yourself before, during and after you work out. First of all, stop making excuses. You can learn to enjoy being more active. You can find the time. Yes, you may be uncomfortable at times, but you can handle the pain. No money to join a gym? There


are inexpensive classes you can take, videos that you can buy, and you can always walk, run, or bike outside. No more telling yourself you “should work out.” You will, and you will enjoy it. Pick something that appeals to you and put it on your calendar. Make sure that you have everything you need to make it a positive experience, such as a well-fitting pair of shoes and an iPod loaded with your favorite music or an audio book. If you are working out and you find that thoughts such as “I hate this,” “this hurts too much,” or “this is so hard, I can’t do this” keep creeping in to your head, turn those thoughts around. Imagine yourself feeling fit and being able to complete a work out you once thought impossible. You are doing it with ease, and you feel so great that you forget that you have PCOS. Play an image in your head of your fit self smiling as you sweat. Your muscles are getting stronger and more defined, and your fat cells shrinking. All of your worries and stress are exiting your body with each breath and are floating off into the wind. Your body is becoming more balanced and all of your organs are working in sync with one another. You are healthier, more vibrant and you are radiating positive energy. Remember to tell yourself “I love how working out makes me feel” and “I can do this”. I would encourage you to set a goal (or goals) for yourself so that you can measure your progress. It should be realistic, but you should have to do a fair amount of work in order to achieve it. What are you striving for – what does it actually look like? Where do you want to be in six weeks? Twelve weeks? Six months? A year? What do you need to do to become the person that you imagine you can be? For example, if you begin at the point where

you can walk for twenty minutes, you can say that in six weeks you will be able to walk for 40 minutes at your own pace. In 12 weeks, you will be able to walk three miles in 40 minutes. In six months, you will be able to walk for an hour. And so on. If you are not working with a personal trainer, you will need to learn how to push yourself. Even if you are so out of shape that you can only walk for 10 minutes, congratulate yourself for a job well done. And do 12 minutes next time. Or encourage yourself to walk a little bit faster. Change up your route to include some hills, or perhaps even take a short hike. While you are working out, actually tell yourself “this feels good, I think I’ll walk five extra minutes” or something similar. You can increase your stamina and even become an athlete, but only if you think you can! As your own personal trainer, you will need to reevaluate your goals on a regular basis. There will be some bumps along the way, and it necessary to think about how you will handle these roadblocks should they occur. What will you do if you fall off the work out wagon? What if your schedule gets busy and you find yourself having less and less time for physical activity? If you exercise outdoors, what will you do when the weather does not cooperate? Planning ahead will help you to be able to face these challenges. If you are having difficulty motivating yourself and you find yourself drowning in a pit of self-sabotage, perhaps it is time to enlist some help. Maybe joining a class or a gym may help. Or you might benefit from having a trainer that can push you. Another option is to hire a wellness coach that can help you with your negative self-talk and keep you motivated and encour-

aged along the way. Whatever you do, do not give up. Exercise is part of your arsenal used to fight PCOS. Make the choice to fight every day. It really is a lot easier if you are not battling yourself every step of the way. I have found that by utilizing positive self-talk, there really is no activity I do not enjoy doing. I look forward to the soreness I feel after a hard work out. Running used to be the ultimate torture for me and I hated every second of it. Inspired by the people on the Biggest Loser, I decided I needed to step things up and make my workouts harder. At first, I could only run a quarter of the way around the track without being totally out of breath and needing to stop to walk. I made my first goal to run all the way around just one time. The next time, it was two. After a couple of months, I found myself being able to run over three miles, and I no longer hated it. I do not allow negative thoughts to enter my mind during my runs; I

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Holly Amarandei is a life and wellness coach based in Grand Rapids, Michigan. She specializes in helping women with PCOS lose weight, gain a positive body image, face infertility and other health challenges, and commit to living a healthier lifestyle. Visit www.yummylifecoaching.com and yummylifeblog.com.

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inCYST

Introducing

Monika Woolsey introduces us to inCYST, lifestyle programs for women with PCOS. The professionals of the inCYST network provide educational offerings for women with PCOS to learn about nutrition, activity, and stress management for managing the disorder.

Monika Woolsey is the president and founder of the After the Diet Network. She is a nutritionist and exercise physiologist with 25 years of experience in nutrition and exercise counseling. If you’d told me ten years ago that I would be filling my days working to build a professional network devoted to bettering the quality of care—and life—for one in ten women, I would have looked at you like you had purple skin and antennas in your head! Even though I am a registered dietitian with a master’s degree with a long resume of education, experience, and research in highly regarded places, I was never formally trained on how to identify or treat PCOS. Can you imagine that? A disease affecting 1 in 10 women and strongly connected to diet, never made the curricula of two formal degrees and an internship in a hospital. But PCOS kept following me around. As a young dietitian, I quickly became discouraged with the lack of effectiveness of weight management training. I saw clients doing

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their absolute best to change their behaviors, only to see little to no weight loss. Or, they’d lose it, only to regain even more. I didn’t want to be stuck doing THAT. So…I decided to work in preventive nutrition, leaving full-time work to pursue a degree in exercise science. I loved the hormone research my professors were doing. I ended up writing my master’s project on the incidence of the female athlete triad (loss of menses, osteoporosis, and eating disorders occurring simultaneously). What I learned in the course of writing that assignment, all those years ago, about hormones and the brain, launched me on the path to PCOS advocacy. Over the next few years, I had the opportunity to work in enough eating disorders treatment centers to be asked to write the American Dietetic Association’s first book on the topic. The best part about that assignment, for a studious scientist like myself, was having a paid excuse to bury myself in scientific writing and read, read, read. Even then, in a book that probably

should have included information on the topic, I was not fully aware of the strong connection between disordered eating and PCOS. But I did notice more and more PCOS articles showing up in my searches pertaining to eating disorders. I launched a website, originally intended to be a followup resource for professionals treating eating disorders. But again, PCOS kept knocking at the door; I kept getting calls from women sharing that they “used to have an eating disorder and now it’s PCOS.” It happened enough that I couldn’t believe it was a coincidence. And when I started looking at the nutrition information available to the women who were asking for help…I was floored. It was inadequate at best, much of it had never been researched, and much of it was jaded by professionals with attitudes toward obesity that were shaming and condescending. Most of it seemed to be coming from companies selling supplements. There simply had to be something better to offer! I quickly became overwhelmed


with requests for help, and decided strapped. Infertility treatments, the better service would be not bariatric surgeries, and cosmetic to try to be everyone’s only dietiprocedures are not insurance tian, but to train my colleagues in company reimbursement favorites! how to work with PCOS, and then What I’ve done is try to develop a introduce those trained profession- spectrum of products and services als to the women who needed their to fit every budget. We have a free help. As a team, we might actually blog, and a Facebook fan page. We have a chance at making a differhave very inexpensive resources, ence. We’re making great progress such as our e-Book and inCYST toward that goal! classes (priced to compare with What I absolutely did not your traditional copayments for expect to happen, was for health other services). If you like what professionals coming to inCYST’s you get when you test our waters trainings because they wanted with these introductory programs, help with their OWN PCOS and we do have more individual and related issues! And that is the part personalized counseling. Soon, of inCYST that I love the most. we’ll be introducing an online We’re not perfect individuals tellcounseling program that makes us ing women what to do. We come to you with a variety of experiences that enhance our knowledge. • I personally do not have children. But many of our providers do. And several of them became pregnant after going through our training. • I did struggle with my weight as a child. I still have to be conscious about what One of Monika’s recent success stories. I eat and to exercise regularly. Some of our providers also have available to any inCYSTER, anytheir own histories with weight and where in the world. My ultimate food. goal is to have something to offer • We’ve got several providers to everyone who wants it, wherever who are interested, because of their they may be, regardless of ability own experiences with acne, in imto pay. proving our clients’ skin health. • We represent many different Our next goal is to develop restages of life, from fresh out of col- lationships with other professions. lege to approaching menopause. Lactation consultants will soon be As we grow, we have someable to participate in our trainings. one in the network for everyone, Psychology and mood issues are regardless of their needs, primary gaining more prominence on our symptoms, or goals. That is far blog. And our first acupuncturmore than I could ever have acist and dermatologist are excited complished on my own, and I am about teaming with us to enhance grateful for everyone who has what we offer. supported inCYST’s growth to this level. The most important aspect of inCYST, however, is its lack of One thing I noticed very early effectiveness if it’s not tried! And on, is that by the time women that happens a lot. I’ve listened often find us, they are very cashto so many stories of bad advice,

disrespectful comments, and failed treatments to understand why someone would hesitate to give us a try. That’s precisely why inCYST is designed to be a series of noncommittal, informational, upbeat programs. There is no expectation that you make any kind of permanent change. We just want you to try a blog, a class, a counseling session. We invite you to visit the blog, click around, comment, come to a class, and see if it fits. I am very aware of the amount of skepticism and fear that accompanies many requests for information and help, and view the trust that comes with asking even a simple question is not to be taken for granted. A required part of inCYST professional training is to listen to the stories of women with PCOS, so we all understand the humanity of the disease. No one leaves these trainings, myself included, feeling humbled. We’re not here to dole out advice; we’re here to listen and empower you to take charge of your health. I chose the name inCYST for this program because I wanted, from the very start, for women to be encouraged to take charge of their lives and their health care. It is impossible to live with a chronic illness and have a passive attitude about it. You are your own best provider, and you are the one who can use the tools you are offered. It’s a bit of a change for some of our clients to view their health issues in that way, but we truly believe it’s the only perspective that promotes results. We’d be honored to walk your journey with you!

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Acceptance

Chronic illness and By Linda Harvey, editor

Apathy and anger about a chronic illness like polycystic ovarian syndrome sets in after the novelty of this unique diagnosis wears off. By taking an ongoing and active role in the long-term management of PCOS, women and girls with the disorder can hopefully stave off a great deal of frustration.

An initial diagnosis of polycystic ovarian syndrome, for many women, provides a combined reaction of sadness and relief, regardless of when they are diagnosed. While it at first may produce an “a ha!” moment to explain why a woman’s body is proverbially “out of whack,” some women say it makes them even angrier and sadder. The realization of infertility finally becomes real and makes starting a family even more of a struggle than normal. “It explained a lot of things regarding my appearance and what I was always struggling with,” Brie Berndt says. “So I was sort of happy to finally have a ‘reason.’ That lasted about an hour, because, of course, it didn’t change anything!” Brie was diagnosed with PCOS more than 20 years ago. Kendra Hanson, a Washington resident who was diagnosed with PCOS three years ago, said the diagnosis “suddenly [made] my life make sense. When I was diagnosed, I felt a combination of

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Coping with the long-term emotional effects of PCOS

extreme disappointment and sadness, as well as relief that I finally had an answer to what was going on with me.”

In the long—term, these women have had to reevaluate their emotional perspectives. Brie, especially, went through what Gretchen Kubacky, a Psy. D, licensed clinical psychologist/health psychologist from the Los Angeles area, says is the grieving process. “There is so much about chronic illness that needs to be grieved – loss of health, loss of fertility, loss of perceived perfection, etc.,” Dr. Kubacky says. She uses Elizabetha Kubler Ross’ DABDA model to explain the process. “It’s a great guideline, although it was originally conceived to address the needs of the terminally ill population. DABDA stands for denial, anger, bargaining, depression, and acceptance.” Brie echoes Dr. Kubacky’s belief about the grieving process. “I think you have to let yourself go through a grieving period and accept it,” Brie says. “Otherwise, you get depressed and bitter and then you start not being everything you can be in life. And I think sometimes you are reminded about PCOS, or you get tired of dealing with it every day, so I think you have to be dynamic in your management of your emotions just as much as you are in your symptoms.”

In many of our cultures – whether you are an American or from a different continent – chronic illness is not something many of us have been taught to deal with. “Chronic illness is dramatically under-supported in our culture,” Dr. Kubacky says. “We…are taught to suck it up, soldier on, and get over it. We’re a historically self-reliant culture that doesn’t tolerate illness or dependence very well.” Chronic illness, over time, can wear on the body and mind. “It tends to require varying amounts of support, both physical and emotional, over extended periods of time.”

Emotions, Doctors and PCOS

Changing from one medical professional to another can be a difficult and emotional experience for women with PCOS. Many PCOS patients do not feel that M.D.s take a whole-patient approach and are left to deal with the emotional and psychological issues of the disease on their own. “I have very little tolerance for doctors who don’t listen to me now,” Kendra Hanson says. “I have a great doctor now and I know she is doing all she can at this point, but I still get frustrated that there doesn’t’ seem to be more that can be done to help my situation.” Brie Berndt says her litmus test for doctors is how much they know about PCOS. “My ob/gyn is the standard,” she says. “I have had to become very creative and re-


all-due-respect to western health care, it is a system based on disease-management, specialization, and the perception that the body and mind can be separated into parts.”

Dealing with PCOS-Related Depression

sourceful – pulling in naturopathic doctors, researching treatments on my won, acupuncturists, and more. I want a doctor who can be on my team and work with me, not on me.” Doctors should approach a PCOS diagnosis with their patients with advice about the full experience, Dr. Kubacky says. “I believe doctors should advise their patients about the potential emotional components of this disease at the same time they are providing information about the strictly medical/physical issues.” She calls it a comprehensive approach. “It would be wonderful if all doctors exhibited the comprehensive knowledge and caring that it takes to sufficiently address the complexities of PCOS,” Dr. Kubacky, who also has PCOS, says. “That being said, it does sometimes take some shopping around in the medical community before you find a suitable physician. This is a complex financial, political, legal, and philosophical question. With

So how do women and girls with PCOS persevere? It’s a question of preference. Some turn to spirituality, others a regimen, and even more may focus on a hobby. “Each woman must find her own answer to this question,” Dr. Kubacky says. “I do believe every woman owes it to herself to explore what works for her. There’s a lot of information out there – some of it’s accurate, some of it’s not, but it all offers possibilities for well-being. I’m a big advocate of trying, failing or partially succeeding, and trying again.” To deal with the “why me?” reaction many women experience after a PCOS diagnosis, or when attempts to conceive have been unsuccessful, Dr. Kubacky suggests that many women need to find their own answers to the question. “Most of us are born with a desire to have children, and an inherent belief that it is our right to bear them personally, and to do so successfully. Being unable to conceive, having multiple miscarriages, or having a child with genetic abnormalities can all trigger the ‘why me’ reaction.” “Every woman and/or couple needs to find their own answers to these questions. And, again, acceptance – there are some grieves that are never resolved. Sometimes knowing that is enough – to know that there will always be some pain

anger

chronic illness

around infertility. Expecting the pain,” Dr. Kubacky says, “is also helpful.” Being aware of the anniversaries of miscarriage dates, for instance, and taking appropriate self-nurturing time in response to it is an excellent way to deal with the pain, she says. As time and PCOS go on, some women say they have become even angrier about the disorder. “This sounds like a fairly typical PCOS patient,” Dr. Kubacky says, “if there is such a thing. And apathy can occur years later because of compassion fatigue. It’s a term we usually apply to those who are caring for others, but I see personal burn-out. Who wouldn’t get sick of following a restrictive regimen of diet and exercise and supplements and medications, and having to practice self-care ritualistically in order to feel sometimes only okay?” Because PCOS follows women for a lifetime, it can cause a “rollercoaster of emotions,” says Dr. Kubacky. And if you’re like Dr. Kubacky, who not only deals with PCOS but other chronic illnesses, it can take an emotional toll at times. “I have PCOS, hypothyroidism, type II diabetes, infertility, and severe allergies. At many times, I have felt overwhelmed, depressed, anxious, helpless, hopeless, despairing, and distraught over my conditions. There have been months in which I had more doctor’s appointments than I can count, and my frustration led to tears, binge eating, and rage, none of which benefited my overall condition,” Dr. Kubacky says, in recounting her experiences with chronic illness. “I believe it takes a phenom-

emotions

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enal commitment to finding your personal ‘cure’ or disease management system. For me, that means daily exercise, a lot of supplements, periodic psychotherapy, and appropriate medications, yoga, and other stress reduction exercises. I will not lie and say it’s easy.” To find your own way to manage PCOS, the reality of your situation requires you to adapt. “There is no one-stop shop for PCOS that I’m aware of,” Dr. Kubacky says. “One must dig, question, research, try multiple physicians and diets and exercise programs, and learn to practice acceptance.” Lastly, sometimes women may need to work with psychologists or psychiatrists throughout the process. “In the beginning, I was at the Royal Women’s Hospital – Mel-

bourne,” says Katrina Thomas, an Aussie. “They actually have a group dedicated to PCOS and when you participate in the group you actually have a counselor there for a session a week, and it is a talking, sharing, and understanding time. The hospital realized that emotions play a big part in this condition. Having someone to talk to that understood and was not judgmental made all the difference for me.” Kendra worked with a counselor prior to her diagnosis, but says it still helped. “I found a wonderful counselor before I was diagnosed, and I think having her made the transition to ‘knowing’ much easier,” Kendra says. “Honestly, I wish more folks would seek out counseling. It’s the best thing I ever did.”

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Exercise Continued from page 11 to enlist some help. Maybe joining a class or a gym may help. Or you might benefit from having a trainer that can push you. Another option is to hire a wellness coach that can help keep you motivated and encouraged along the way. Whatever you do, do not give up. Exercise is part of your arsenal used to fight PCOS. Make the choice to fight every day. It really is a lot easier if you are not battling yourself every step of the way. I have found that by utilizing positive self-talk, there really is no activity I do not enjoy. I look forward to the soreness after a hard work out. Running used to be the ultimate torture for me and I hated every second of it.

Fairhaven review Continued from page 6

Fairhaven Health has a plethora of natural products that I’d be willing to try if I were in the process of trying to conceive. The company, its website, everything about it, isn’t pushy, but offers you the fullest opportunity to be present and an active part of the conception process. Their combination of both non-pharmaceutical conception aids (like specially made basal thermometers) and pregnancy and post-pregnancy items (like Dreambelly Stretch Mark Cream, Pregnancy Deoderant, and Nursing Time Tea) as well as their supplements (like Pregnancy Plus Omega-3) is refreshing.

medical advisors that work with the company in the production of their products. Nothing about this company sent up any red flags for me. They’ve put it all out there to prove to their current and potential customers that they’re here to meet your needs.

Most of their prices seem fairly reasonable, they offer a supplement ingredient list under the “Physicians” tab of their website, and provide information about the

Fairhaven Health can be found online at www.fairhavenhealth. com. To follow them on Twitter, look for FertilAidAmy.

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“We’ve been providing effective products in the trying-to-conceiving community for many years now, and have built up a good reputation as a result,” Ethan says. “We encourage women with PCOS to visit our site and spend time on the customer reviews page to see what others have experienced.”

Inspired by the people on the Biggest Loser, I decided I needed to step things up and make my workouts harder. At first, I could only run a quarter of the way around the track without being out of breath and needing to stop to walk. I made my first goal to run all the way around just one time. The next time, it was two. After a couple of months, I found myself being able to run over three miles, and I no longer hated it. I do not allow negative thoughts to enter my mind during my runs; I enter a meditative state that blocks the pain and my positive energy keeps me pushing on. I’m looking forward to completing my first 5K this fall. This goal seems so impossible, yet I can’t help thinking how a little nausea is not going to keep me from feeling the joy of crossing the finish line.


min D daily and have your doctor check your vitamin D levels to determine if you are deficient. Bonus: Vitamin D supplements come in a very tiny pill size (nothing like Metformin!).

Teens Continued from page 9 of milk has 300 milligrams of calcium. Calcium can also be found in certain vegetables such as broccoli and spinach. Bonus: Numerous dairy rich foods also contain protein which can help stabilize blood sugar levels. Vitamin D. Now that you know how important calcium is in your body, you need adequate amounts of vitamin D to absorb it. Simply put, vitamin D helps put calcium into your bones. The other good news: Vitamin D can also improve insulin and help you lose weight. Despite its benefits, most people are deficient in vitamin D. This is because few foods other than milk, eggs, cereals with vitamin D added and fatty fish contain vitamin D. Skin exposure to sunlight provides as much as 80% to 90% of the body’s vitamin D but using sunscreen significantly reduces this amount. Overweight individuals have a greater chance of being deficient because vitamin D is a fat-soluble vitamin that’s stored in high amounts of fatty tissue. All women with PCOS should take a supplement of at least 1,000 IU of vita-

Cinnamon. If you like this popular spice, bring it on! Research indicates that cinnamon may help improve insulin levels and lower cholesterol. Side effects are very minimal, if any. Cinnamon contains no calories or carbohydrates, making it an easy way to add it to your diet. Sprinkle it on cereal, coffee drinks, peanut butter sandwiches, oatmeal, cottage cheese, yogurt and many other foods. It can also be taken in a capsule form sold as cinnamon cassia extract to meet therapeutic dosages of 3 to 6 grams daily or 1 to 2 teaspoons daily. Bonus: Cinnamon can satisfy a sweet tooth! Omega-3s. Are you getting enough omega-3s? Omega-3 fats are effective at improving all aspects of PCOS including insulin, triglycerides, blood pressure, cholesterol, mood and skin. Omega-3s can be found in some types of fish such as salmon, tuna, trout and halibut and in lesser amounts in plant-based foods such as canola oil, flaxseed, almonds and walnuts. Because the omega-3s in fish are better utilized in the body than the plant-based ones, dietary guidelines recommend that we eat these kinds of fish two times per week to reap the benefits of omega-3 fats. Even if you eat these fish twice a week and especially if you don’t, you should consider taking a fish oil supplement. You can purchase fish oil in a gel capsule or a liquid form. Teens with PCOS should take 1,000 to 4,000 milligrams daily. Bonus: Some fish oil supplements also contain vitamin D.

Whether you have just got diagnosed with PCOS or have known about it for awhile, it is never too late to make changes in your eating. As always, eating a variety of foods will maximize your potential to get the most nutrients and improve your health. A healthy diet for PCOS is one that is primarily based on whole grains, fruits, vegetables, omega-3 fats and lean proteins. Having adequate amounts of vitamin D, vitamin C, calcium and iron are also essential to improving your PCOS symptoms and your health now and in the future. If you’d like specific information about your body’s nutrition needs, contact a registered dietitian who specializes in PCOS. Angela Grassi, MS, RD, LDN is the author of The PCOS Workbook: Your Guide to Complete Physical and Emotional Health and The Dietitian’s Guide to Polycystic Ovary Syndrome. She provides nutrition counseling by phone or in-person to women with PCOS. For more information or to sign up for her free PCOS nutrition tips, please visit www.PCOSnutrition.com.

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