PCOS Magazine by Blank Page LLC

Volume 2, Issue 2 Nov./Dec. 2009

PCOS & Pregnancy Also:

• A review of Angela Grassi’s “The PCOS Workbook” • Replying to the “when are you going to have a baby?” question • Introducing PCOS Challenge & Sasha Ottey • The pain of a misdiagnosis

From the Editor

I do believe I’m the anomaly... As I inch closer and closer to middle age, occasionally someone will ask me “when are you going to have a baby?” In part, I guess I should be happy that they don’t look at me and say “oh, you poor thing, you have PCOS. It’ll be really hard for you to get pregnant,” but at the same time, I’m never sure quite how to answer without sounding defensive. You see, many years ago, I made an active choice not to get pregnant. After understanding the difficulties my mother had with getting and staying pregnant, hearing about the IVF cycles-fromhell of many women, and the fact that I’ve always seen myself as a project-in-process, well, I thought it best not to pass the curse of PCOS on to another generation. On the flip side, I know how important family and children are, and I applaud any woman, any family who goes through the tears and joy of trying to get pregnant with PCOS. There are some days when I do wonder what kind of mother I would be, what my child(ren) might look like, what if, what if, what if. My mother said she’s happy to have a grand-cat. All of this said, this issue of PCOS Magazine is chock-full of great information for women who are trying to conceive with PCOS. We’ve also expanded our focus more into diabetes and women’s health, and will continue to do so in future issues. The magazine has grown 12 more pages as well. Soon, you’ll see some new names gracing our pages as PCOS Magazine will be adding a small cadre of interns ready to learn as much about health communication as possible! Enjoy this issue of PCOS Magazine, and share your comments and story ideas with us too!

Linda Harvey

Editor lmharvey@pcosmagazine.com

Blank Page LLC Linda Harvey, member Joshua R. Yates, member Editor Linda Harvey Contributing Writers Holly Amarandei Angela Grassi Suzy Reyes Melanie VanDerveer Dr. Gretchen Kubacky Suzy Ottey Additional Content Courtesy of: Newswise PR Newswire Photography & Artwork Courtesy of: Morguefile.com Dreamstime 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:

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negative controls; Whole yellow pea flour banana bread and biscotti reduced glycemic responses more than whole wheat bread; Whole yellow pea flour biscotti reduced glycemic responses more than whole wheat flour biscotti.

Researchers from the University of Manitoba report that whole yellow pea flour can be used as an ingredient to produce low-glycemic foods that may help those with diabetes, according to a new study from the Journal of Food Science, published by the Institute of Food Technologists.

“Whole yellow pea flour can be used as a functional ingredient to produce low-glycemic foods. These findings may be used as a tool for health care practitioners to assist patients in cooking low-glycemic foods that help and prevent and manage type 2 diabetes,” says lead researcher Christopher Marinangeli, MSc RD.

Yellow Pea Flour May Help with Diabetes

Researchers created banana bread, biscotti, and pasta using whole yellow pea flour. Each food was prepared using either 100 percent whole yellow pea flour or whole wheat flour as its primary ingredient; Boiled yellow peas and white bread were used as positive and

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Lifestyle Changes May Delay Diabetes for a Decade Sustaining modest weight loss for 10 years, or taking an anti-diabetic drug over that time, can prevent or lower the incidence of type 2 diabetes in people at high risk for developing the disease, according to the Diabetes Prevention Program Outcomes Study (DPPOS), a long-term followup to a landmark 2001 diabetes prevention study.

adults with elevated blood glucose levels. Researchers disclosed the findings from DPP in 2001 ─ a year earlier than scheduled ─ because results were so clear. After three years, intensive lifestyle changes (modest weight loss coupled with increased physical activity) reduced the rate for developing type 2 diabetes by 58 percent compared with placebo. The oral diabetes drug metformin (850 milligrams twice Dr. Jill Crandall daily) reduced Jill Crandall, M.D., the rate of developing associate professor of diabetes by 31 percent clinical medicine at compared with placebo. Albert Einstein College of Medicine of YeSince these striking shiva University, was a results were based on principal investigator just three years of data, in the follow-up study, researchers could not which appears online determine how long the in the current edition benefits would last. Folof the British medical lowing a seven-month journal The Lancet. bridge period after the original study ended, The original study ─ the follow-up DPPOS the Diabetes Prevenbegan, with 88 percent tion Program (DPP) ─ of DPP volunteers taking was a large, randompart. During the study ized trial involving pause, all participants 3,234 people at high learned the results and risk for developing were offered 16 educadiabetes. At the start tion sessions on making of the study, all were intensive lifestyle changoverweight or obese es. The latest results,

reflecting a full decade of participation ─ three in the DPP study and seven in DPPOS ─ indicate that lifestyle interventions producing even modest weight loss can significantly help to prevent or delay diabetes over the long term. Specifically, for the 10 years spanning the DPP and DPPOS studies, the diabetes incidence (i.e., rate at which new diabetes cases were diagnosed) in the lifestyle group was reduced by 34 percent compared with placebo. For the group taking the diabetes drug metformin, diabetes incidence was reduced by 18 percent.

Expressed another way, the lifestyle group delayed type 2 diabetes by about four years compared with placebo, and the metformin group delayed it by two years. “The fact that we’ve continued to delay and possibly even prevent diabetes in people at very high risk for developing the disease is certainly a positive finding,” says Dr. Crandall. She notes that those people randomly assigned to make lifestyle changes also had more favorable cardiovascular risk factors (including lower blood pressure and triglyceride levels) despite a reduction in drug

treatment prescribed by their personal physicians. The benefits of intensive lifestyle changes were especially pronounced among older people. Those aged 60 and over lowered their rate of developing type 2 diabetes in the next 10 years by about half.

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Postmenopausal Women with Higher Testosterone Levels May Have Increased Chronic Health Risks Endocrine Society publishes findings in Clinical Journal

Postmenopausal women who have higher testosterone levels may be at greater risk of heart disease, insulin resistance and the metabolic syndrome compared to women with lower testosterone levels, according to a new study accepted for publication in The Endocrine Society’s Journal of Clinical Endocrinology & Metabolism (JCEM). “For many years, androgens like testosterone were thought to play a significant role in men only and to be largely irrelevant in women,” said Anne Cappola, MD, of the University of Pennsylvania School of Medicine in Philadelphia. “It is now largely accepted that premenopausal women with polycystic ovary syndrome, a condition in which androgens are elevated, have

increased health risks. However, the clinical relevance of testosterone in women over the age of 65 had remained uncertain until this recent study.” In this study, researchers measured levels of testosterone in 344 women, aged 65–98 years. They found that women with the highest testosterone levels — in the top 25 percent of this study group— were three times as likely to have coronary heart disease compared to women with lower testosterone levels. These women were also three times as likely to have a group of metabolic risk factors called the metabolic syndrome compared to women with lower testosterone levels. The connection between higher levels of testosterone and these health risks may be explained by the researcher’s finding of a greater

degree of insulin resistance in women with the highest testosterone levels. Insulin resistance is a metabolic disturbance in which the body does not use insulin efficiently and is itself a risk factor for the metabolic syndrome and cardiovascular disease. “Because of the observational aspect of this study, we cannot discern if testosterone is a marker or mediator of cardiovascular disease in this population,” said Cappola. “Further studies are needed to determine if a causal relationship exists between testosterone and insulin resistance and to provide more insight into the role testosterone plays in the pathogenesis of cardiovascular disease in women.” Other researchers working on the study include Shrita Patel, Sarah Ratcliffe, Muredach Reilly and Rachel Weinstein of the University of Pennsylvania in Philadelphia; Shalender Bhasin of Boston University in Massachusetts; Marc Blackman of the Veterans Affairs Medical Center in Washington, D.C.; Jane Cauley and Kim SuttonTyrrell of the University of Pittsburgh in Pennsylvania; and Linda Fried of Columbia University in New York, N.Y. The article, “Higher Testosterone Levels Are Associated with Insulin Resistance, Metabolic Syndrome, and Cardiovascular Disease in Older Women,” will appear in the December 2009 issue of JCEM.

Human Clinical Study Finds Benefits Linked to XanGo Juice A new study published in Nutrition Journal indicates that XanGo® Juice, a mangosteen beverage, has lowered levels of C-reactive protein (CRP) in overweight and obese people in a randomized, double-blind, placebo-controlled human trial. CRP is a marker used to measure inflammation levels, and a reduction in CRP may indicate a corresponding reduction in the risk of heart disease and diabetes. Mike Pugh, a scientist at XanGo, explains, “The reason why the scientific community is interested in probing inflammation is that it may be an early indicator of heart attack, stroke and diabetes, potentially even lung disease, skin conditions and arthritis. So, scientists test CRP as a first step in assessing an individual’s level of inflammation, and then, in turn, they use that to help picture a patient’s potential for these serious diseases.” Current understanding of body fat suggests that reducing inflammation may also assist in managing one’s weight. XanGo’s chief marketing officer, Larry Macfarlane, elaborates on why XanGo whole-heartedly supported the research performed by Dr. Jay Udani at Medicus Research in California, “Sometimes, consumers turn to pharmaceutical products as a preventive measure to maintain good health. While consumers should always consult with their healthcare provider before changing their dietary regimen, XanGo realizes that our juice,

might provide a natural alternative for maintaining good health.” In the study, Dr. Udani tested three different dosages against a placebo juice. Participants consumed the beverages twice a day, in the morning and evening. All three dosages of XanGo Juice demonstrated an ability to reduce CRP. Dr. Udani comments, “Subjects who consumed the highest dose demonstrated a statistically significant reduction in CRP (1.33 mg/L).” Body fat percentage was significantly different between the three-

ounce juice group and placebo. This three-ounce group also experienced a significantly lower body mass index (BMI) score compared with placebo at eight weeks. The six-ounce group had significantly lower BMI than placebo at four weeks and at eight weeks. Dr. Udani reports that no side effects or safety concerns emerged at any dosage tested, and cautions that longer studies with larger numbers of participants are needed to confirm the findings and further probe a possible dose-dependent effect. XanGo Juice is sold by XanGo’s global network of more than 1 million independent distributors. To locate a distributor near you, visit http://www.xango.com.

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Type 2 Diabetes Patients Experienced Greater Blood Sugar Reductions when Treated with ACTOplus met as Initial Therapy Compared to Either Component Alone

A study, published online in the journal Current Medical Research and Opinion, showed that a greater percentage of patients with type 2 diabetes treated with the fixed-dose combination ACTOplus met® (pioglitazone HCl and metformin HCl) as initial therapy reached the study goal of hemoglobin A1c (HbA1c) of ≤7 percent compared to either component alone. “Diabetes is a progressive and chronic condition, which requires continued monitoring by a patient and physician. In addition to diet and exercise, patients often need to take multiple medications to help them manage their glucose control,” said Robert Spanheimer, M.D., vice president of medical and scientific affairs, Takeda Pharmaceuticals North America, Inc. “We are pleased to see that this study was successful in meeting its intended endpoints. A greater number of patients reached the blood sugar target of less than 7 percent, as recommended by the American Diabetes Association, using combination therapy as initial treatment compared with either single treatment alone.” Upon completion of the study, all treatment groups achieved statistically significant HbA1c reductions from a baseline

HbA1c of 8.7, and the greatest decrease was observed in patients treated with ACTOplus met (15 mg/850 mg twice daily). The endpoint responder rates were higher in the ACTOplus met group, with 64 percent of patients reaching HbA1c goal of ≤7 percent compared to ACTOS (46 percent) or metformin (39 percent) alone. The overall treatment-emergent adverse events were 50.7 percent for the ACTOplus met group; 52.1 percent for the ACTOS group; and 53.1 percent for the metformin group. These adverse events led to

discontinuation from the study in 5.5 percent, 7.9 percent, and 7.2 percent of patients respectively. Adverse events that occurred more frequently in the ACTOplus met group with an incidence of >3 percent included: headache at 5.5 percent, pharyngitis and nasopharyngitis each at 4percent, and dizziness and insomnia each at 3 percent. The hypoglycemic event rates were 1.0 percent for the ACTOplus met group; 0.5 percent for the ACTOS group; and 1.4 percent for the metformin group. The study showed significantly greater fasting plasma glucose (FPG) lowering in the ACTOplus met group (p<0.01) compared with ACTOS monotherapy or metfor-

min monotherapy; and statistically significant reductions in insulin resistance were observed following treatment with ACTOplus met compared to metformin. Study Design This study was a 24-week, multicenter, randomized, double-blind, parallel-group study comparing ACTOplus met (N=201; 15 mg/850 mg twice daily) versus ACTOS (N=190; 15 mg twice daily) and metformin alone (N=209; 850 mg twice daily), in the initial treatment of patients with type 2 diabetes. Patients at least 18 years of age with type 2 diabetes were eligible for the study if they had a baseline HbA1c ≥7.5 percent but ≤10.0 percent, and had not received treatment with antidiabetic medication in the 12 weeks prior to screening other than short-term use of ≤15 days. The primary endpoints of the study were to compare the change from baseline in HbA1c for ACTOplus met therapy with ACTOS monotherapy and metformin monotherapy. The secondary endpoints were change from baseline in fasting insulin, FPG and HOMA, and the safety and tolerability between ACTOplus met and the individual components. Indications and Usage ACTOplus met is a prescription medication used with diet and exercise to improve blood sugar (glucose) control in adults with type 2 diabetes. ACTOplus met has

not been studied in children and is not recommended for children under the age of 18. Important Safety Information ACTOplus met is not for everyone. Certain patients with heart failure should not start taking ACTOplus met. ACTOplus met can cause new, or worsen, heart failure. Patients should talk to their doctor immediately if they experience unusually fast weight gain, fluid retention (swelling), shortness of breath, unusual tiredness, or slow heartbeat. Metformin, one of the medicines in ACTOplus met, can cause a rare but serious condition called lactic acidosis (a buildup of an acid in the blood) that can cause death. Lactic acidosis is a medical emergency and must be treated in the hospital. Because lactic acidosis occurs most frequently in people with kidney problems, ACTOplus met should not be used in people with kidney disease or in people 80 years of

age or older whose kidneys do not work properly. ACTOplus met should not be taken by people with metabolic acidosis or with hypersensitivity to ACTOS, metformin, or any other component of ACTOplus met. ACTOplus met should not be taken by people who drink excessive amounts of alcohol. Patients should not take ACTOplus met if they have active liver disease. A doctor should perform a blood test to check for liver problems before patients start ACTOplus met and periodically thereafter. Patients should talk to their doctor immediately if they experience nausea, vomiting, stomach pain, tiredness, loss of appetite, dark urine, or yellowing of the skin. If a patient is of childbearing age, they should talk to their doctor before taking ACTOplus met, as it could increase their chance of becoming pregnant. Patients

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should talk to their doctor if they are pregnant, planning to become pregnant, breastfeeding, or planning to breastfeed. Patients with diabetes should have regular eye exams. If they experience vision problems, consult a doctor immediately. Some patients have experienced visual changes while taking ACTOplus met. Some people, particularly women, are at higher risk of having bone fractures while taking pioglitazone. Other side effects may include cold-like symptoms, diarrhea, nausea, headache, urinary tract infection, sinus infection, dizziness, swelling in the lower limbs, anemia, and weight gain. Please visit the Takeda Pharmaceuticals North America, Inc. Web site at www.tpna.com for Complete Information, including warning about heart failure and Medication Guide.

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Physicians Have Less Respect for Obese Patients, John Hopkins Medicine Weight Loss Study Suggests Doctors have less respect for their obese patients than they do for patients of normal weight, a new study by Johns Hopkins researchers suggests. The findings raise questions about whether negative physician attitudes about obesity could be affecting the long-term health of their heavier patients. As patients had higher body mass index (BMI), physicians reported lower respect for them, according to the study, being published in the November issue of the Journal of General Internal Medicine. In a group of 238 patients, each 10-unit increase in BMI was associated with a 14 percent higher prevalence of low patient respect. BMI, calculated from a person’s weight and height, is a shorthand used to determine whether someone is a healthy weight. A person whose BMI is 25 to 29.9 is considered overweight; a BMI over 30 is considered obese. Mary Margaret Huizinga, M.D., M.P.H., an assistant professor of general internal medicine at the Johns Hopkins University School of Medicine, says the idea for the research came from her experiences working in a weight loss clinic. Patients would come in and “by the end of the visit would be in tears, saying no other physician talked with me like this before. No one listened to me,” says Huizinga, the study’s leader and director of the Johns Hopkins Digestive

Weight Loss Center. “Many patients felt like because they were overweight, they weren’t receiving the type of care other patients received,” she says. Data was collected from 238 patients at 14 urban community medical practices in Baltimore. Patients and physicians completed questionnaires about their visit, their attitudes, and their perceptions of one another upon the

completion of the encounter. On average, the patients for whom physicians expressed low respect had higher BMI than patients for whom they had high respect. Previous studies have shown that when physicians respect their patients, patients get more information from their doctors. Some patients who don’t feel respected may avoid the health care system altogether, surveys and focus groups have shown. One limitation

of the new study, Huizinga says, is that it was unable to link low physician respect directly to poor health outcomes.

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“The next step is to really understand how physician attitudes toward obesity affect quality of care for those patients, to really understand how this affects outcomes,” she says. “If a doctor has a patient with obesity and has low respect for that person, is the doctor less likely to recommend certain types of weight loss programs or to send her for cancer screening? We need to understand these things better.” Ultimately, she says, physicians need to be educated that obesity bias and discrimination exist. One good place to start would be in medical school, where Huizinga says little is taught to reduce or compensate for these negative attitudes. “Awareness of their own biases can lead to an alteration of behavior and sensitivity that they need to watch how they act toward patients,” she says. Other researchers involved were Lisa A. Cooper, M.D., M.P.H., professor of general internal medicine at the Johns Hopkins University School of Medicine; Sara N. Bleich, Ph.D., assistant professor at the Johns Hopkins Bloomberg School of Public Health; Jeanne M. Clark, M.D., M.P.H., associate professor of general internal medicine at the Johns Hopkins University School of Medicine; and Mary Catherine Beach, M.D., M.P.H., associate professor of general internal medicine at the Johns Hopkins University School of Public Health.

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Study Shows How Substance in Grapes May Squeeze Out Diabetes

From left: Drs. Giorgio Ramadori, Laurent Gautron & Roberto Coppari

A naturally produced molecule called resveratrol, found in the skin of red grapes, has been shown to lower insulin levels in mice when injected directly into the brain, even when the animals ate a high-fat diet. The findings from a new UT Southwestern Medical Center study suggest that when acting directly on certain proteins in the brain, resveratrol may offer some protection against diabetes. Prior research has shown that the compound exerts anti-diabetic actions when given orally to animals with type 2 diabetes (non-insulin dependent diabetes mellitus), but it has been unclear which tissues in the body mediated these effects. “Our study shows that the brain plays an important role in mediating resveratrol’s anti-diabetic actions, and it does so independent of changes in food intake

and body weight,” said Dr. Roberto Coppari, assistant professor of internal medicine at UT Southwestern and senior author of the study appearing online and in the December issue of Endocrinology. “These animals were overrun with fat and many of their organs were inflamed. But when we delivered resveratrol in the brain, it alleviated inflammation in the brain,” added Dr. Coppari. Dr. Coppari emphasized that his study does not support the conclusion that consuming products made from red grapes, such as red wine, could alleviate diabetes. “The main reason is that resveratrol does not cross the blood brain barrier efficiently,” he said. “In order for the brain to accumulate the same dose of resveratrol delivered in our study, the amounts of red wine needed daily would surely cause deleterious effects,

especially in the liver. Rather, our study suggests that resveratrol’s analogs that selectively target the brain may help in the fight against diet-induced diabetes.” For the study, the researchers investigated what happens when resveratrol acts only in the brain. Specifically, they wanted to know whether resveratrol injected in the brain activated a group of proteins called sirtuins, which are found throughout the body and thought to underlie many of the beneficial effects of calorie restriction. Previous research has shown that when these proteins are activated by resveratrol, diabetes is improved. In addition, drugs activating sirtuins currently are being tested as antidiabetic medications in human trials, Dr. Coppari said. In one group of animals, researchers injected resveratrol directly into the brain; another group received a saline-based placebo. All the surgically treated animals consumed a high-fat diet before and after the surgery.

Dr. Coppari said the insulin levels of the animals treated with the placebo solution rose increasingly higher post-surgery. “That’s a normal outcome because insulin sensitivity decreases the longer you keep an animal on a high-fat diet.” Insulin levels in the mice given resveratrol, however, actually started to drop and were halfway to normal by the end of the five-week study period, even though the animals remained on a high-fat diet. In addition, the researchers found that resveratrol did activate sirtuin proteins in the brain. Dr. Coppari said the findings support his team’s theory that the brain plays a vital role in mediating the beneficial effects of resveratrol and that manipulation of brain sirtuins also may have other beneficial outcomes. “By knowing that the central nervous system is involved, pharmaceutical companies can begin to focus on developing drugs that selectively target sirtuins in the brain,” he said. The next step, Dr. Coppari said, is to determine precisely which neurons in the brain are mediating the effects of the resveratrol. Other UT Southwestern researchers involved in the study include Drs. Giorgio Ramadori, Laurent Gautron and Teppei Fujikawa, postdoctoral researchers in internal medicine; Dr. Claudia Vianna, instructor of internal medicine; and Dr. Joel Elmquist, professor of internal medicine and director of the Center for Hypothalamic Research at UT Southwestern. The study was supported by the American Heart Association, National Institutes of Health and the American Diabetes Association. Visit www.utsouthwestern.org/endocrinology to learn more.

Endocrine Society calls for expanded scope and funding for stem cell research Chevy Chase, MD—Stem cell research holds great promise for the treatment of millions of Americans with debilitating and possibly fatal diseases. Current legislation and guidelines, however, continue to limit researchers' endeavors in unlocking the potential breakthroughs that stem cell research can provide. To address this concern, The Endocrine Society issued a Position Statement (http://www.endo-society.org/advocacy/policy) calling for an increase in NIH funding for stem cell research as well as expanding the scope of funding to include promising yet neglected areas of stem cell research. Specifically, The Endocrine Society supports the following positions: • An increase in NIH funding for stem cell research; • An increase in the number of embryonic stem cell lines for NIH-funded research; • A broadening of the scope of federally funded research to include cells generated through somatic cell nuclear transfer; • Availability of federal funding for the derivation of embryonic stem cells from discarded in vitro fertilization (IVF) embryos and through somatic cell nuclear transfer; • Adherence to the highest ethical and scientific research standards; and • Federal oversight of embryonic stem cell research to assure ethical standards are always met. Stem cells are unique in that they can be induced to become cells with special functions, such as the insulin-producing cells of the pancreas or the beating cells of the heart muscle. Stem cell research could lead to promising treatments for diseases such as diabetes, heart disease, Alzheimer's disease, AIDS and many others. In 2001, President Bush imposed federal funding restrictions limiting the use of human embryonic stem cells. On March 9, 2009, President Obama signed Executive Order 13505 overturning the restriction in the previous policy. This important step allowed for a greater number of cell lines derived from IVF embryos to be qualified for use in federally funded research. While this change in policy benefits the advancement of scientific knowledge, the executive order does not address funding for promising research on cell lines derived from sources other than IVF embryos.

"No research in recent history has offered as much hope as stem cell research in treating such a large number of debilitating diseases such as diabetes, Parkinson's disease and Alzheimer's disease," said Robert Vigersky, MD, president of The Endocrine Society. "Our new position statement calls not only for an increase in NIH funding for stem cell research but also a broadening of the scope of federally funded research to include stem cells generated from sources other than IVF embryos, such as somatic cell nuclear transfer." Somatic cell nuclear transfer (SCNT) refers to the process of generating embryonic stem cells by injecting the nucleus of a non-stem cell into an unfertilized egg from which the nucleus has been removed. This process results in embryonic stem cells in which all the nuclear DNA and subsequently produced proteins are molecularly matched to those of the original non-stem cell. Because SCNT would generate stem cells with a patient's precise nuclear genetic make-up, the patient could be treated with these cells without fear of rejection by the patient's body. "In light of the need for scientists to be able to generate disease-specific stem cells for research, the President's executive order alone is insufficient as it does not take full advantage of the technology at our fingertips," said Vigersky. "For the full potential of stem cell research to be reached, the amount of federal funding and the scope of that funding need to be expanded." Founded in 1916, The Endocrine Society is the world's oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology. Today, The Endocrine Society's membership consists of over 14,000 scientists, physicians, educators, nurses and students in more than 100 countries. Society members represent all basic, applied and clinical interests in endocrinology. The Endocrine Society is based in Chevy Chase, Maryland. To learn more about the Society and the field of endocrinology, visit our site at www.endo-society.org.

PCOS Now

Media Coverage of New Mammography Guidelines Confusing to Some, Says Expert The public may have problems this week sorting through news articles about a government task force’s opposition to routine mammograms for women under 50 and articles about breast cancer survivors touting the benefits of early mammograms. But to properly interpret the news, the public must learn to balance the research with the anecdotal evidence says University of Alabama at Birmingham (UAB) Associate Professor of English Cynthia Ryan, Ph.D. Ryan studies how breast cancer is portrayed in the media and is the author of a forthcoming book on the rhetoric of breast cancer in popular women’s magazines. “I think that news coverage on this recent debate has been fairly effective, but as expected, there is room for readers to misinterpret what they are reading,” says Ryan, who points to two New York Times articles published on the same day: one dealing with the findings of the U.S. Preventive Services Task Force (USPSTF) arguing that routine mammograms should begin after age 49, and another article offering one woman’s stance that early mammograms save lives. “I’d say the media is doing a decent job of covering both sides of the debate,” says Ryan. “What can be problematic for readers, however, is the seeming

offer a needed perspective that can affect decision-making.” The bottom line, says Ryan: Look at all of the evidence, the research and the anecdotes as part of one big conversation as opposed to conflicting advice. You’ll be better informed when making a decision that’s right for you.

Dr. Cynthia Ryan, associate professor, UAB

contradiction between two polarized perspectives: either keep the screening guidelines the same or change them. “Consumers are best able to make sound decisions about their health when these polarized messages are integrated and reflect the complexity of the disease,” she says. “It’s not an either-or conversation.” Ryan says that when confronted with extreme representations, there is a part of the human brain that wants to go with scientific study “because we figure it must be credible and rational,” she says. “But another part of our brain embraces anecdotal advice that links the message with a face. “Not surprisingly, consumers are torn. But informed health consumers have to take in both kinds of evidence. Both are credible and

“Read all of the coverage,” she says. “Talk to your doctor. Know your risk factors. Understand that you are going to face different kinds of advice and you have to weigh those and determine what the best choices are for you.”

“ If you were my sister, and a breast cancer survivor, I’d want you to do everything you can to keep it from coming back. I’d tell you there are good reasons to be optimistic.” – Felicity Huffman

There are more than 2 million women in the US who are breast cancer survivors, and many of us have family and friends who are touched by this disease. As you know, there is a chance that breast cancer can return. There are treatment choices after surgery that can significantly reduce the risk of recurrence. Talk to your doctor about your options and find out which is right for you. If you are already on a treatment, stay on it just as your doctor says.

Together, we are all sisters in this fight. Get the facts about breast cancer and reducing your risk of recurrence.

Photo: Randall Slavin

Please visit getbcfacts.com or call 1-877-our-sisters

Dedicated to the fight against breast cancer for over 30 years

PCOS Now

High Fructose Intake from Added Sugars: an Independent Association with Hypertension A diet high in fructose increases the risk of developing high blood pressure (hypertension), according to a paper presented at the American Society of Nephrology’s 42nd Annual Meeting and Scientific Exposition in San Diego, California. The findings suggest that cutting back on processed foods and beverages that contain high fructose corn syrup (HFCS) may help prevent hypertension. Over the last 200 years, the rate of fructose intake has directly paralleled the increasing rate of obesity, which has increased sharply in the last 20 years since the introduction of HFCS. Today, Americans consume 30% more fructose than 20 years ago and up to four times more than 100 years ago, when obesity rates were less than 5%. While this increase mirrors the dramatic rise in the prevalence of hypertension, studies have been inconsistent in linking excess fructose in the diet to hypertension. Diana Jalal, MD (University of Colorado Denver Health Sciences Center), and her colleagues studied the issue in a large representative population of US adults. They examined 4,528 adults 18 years of age or older with no prior history of hypertension. Fructose intake was calculated based on a dietary questionnaire, and foods such

as fruit juices, soft drinks, bakery products, and candy were included. Dr. Jalal’s team found that people who ate or drank more than 74 grams per day of fructose (2.5 sugary soft drinks per day) increased their risk of developing hypertension. Specifically, a diet of more than 74 grams per day of fructose led to a 28%, 36%, and 87% higher risk for blood pressure levels of 135/85, 140/90, and 160/100 mmHg, respectively. (A normal blood pressure reading is below 120/80 mmHg.) “These results indicate that high fructose intake in the form of added sugars is significantly and independently associated with higher blood pressure levels in the US adult population with no

previous history of hypertension,” the authors concluded. Additional studies are needed to see if low fructose diets can normalize blood pressure and prevent the development of hypertension. Study co-authors include Richard Johnson, MD, Gerard Smits, PhD, and Michel Chonchol, MD (University of Colorado Denver Health Sciences Center).

REVIEW: The PCOS Workbook

o two women with PCOS have the same experience with the syndrome. However, there is one universal truth about PCOS that all women facing it share - it will affect their nutrition, ability to control stress, fertility, body image, and emotions. Enter Angela Grassi and Stephanie Mattei. Grassi, who previously wrote “The Dietician’s Guide to Polycystic Ovary Syndrome” partnered with Stephanie Mattei to write “The PCOS Workbook” to help women explore and “challenge specific difficulties” of living with PCOS. One of the greatest pieces of information in the early pages of “The PCOS Workbook” is the simple entry entitled “How to Use The PCOS Workbook.” In these few short pages, Grassi and Mattei outline what you will be experiencing in the book, chapter by chapter. The first chapter, “Connecting the Dots: Understanding Polycystic Ovary Syndrome” is followed by chapters focused on nutrition, stress, the issue of body image, mindful eating, coping with infertility, and finally the management of PCOS to prevent further medical complications. This book is a treasure-trove of information. Here’s what’s truly great about this book: Throughout each chapter, Grassi and Mattei have developed questions and lists relevant to each topic, with areas for you to write what is relevant to your PCOS experience. This is a WORKbook in every sense of the word. For example, you turn to page 101, in the Body Image and PCOS chapter, and you’re asked to actually challenge your own myths about body image. The authors ask you to think about your environment,

what you consider to be “truth” and “rules,” and how you might self-blame. Then you’re asked to think about what you were thinking about body image as you were going through the process of answering the previous questions. This book gets down to the nitty-gritty and helps you work through it all. “The PCOS Workbook” asks you to truly analyze your eating and exercise routines and patterns, while at the same time providing more-than-enough detailed information about everything you will need to know about the disorder to be well-armed when talking with your healthcare professionals. The charts Grassi and Mattei use help break the information down into easy-toswallow (no pun intended) bites of PCOS knowledge. “The PCOS Workbook” is a resource I would recommend to any woman who wants to learn as much as possible about the syndrome, and about themselves through the process. But be prepared, the Workbook will ask you to dig deep. In the back of the book a glossary is provided, as well as forms to help you track your lab results, a food journal, online resources, a suggested PCOS food list, and even sample menus. The only addition to this book that would make it an even better resource would be more illustrations. As a publisher, I know that artwork, photos, etc., are pleasing to the eye and provide our reading eyes a break occasionally. Grassi and Mattei have provided a thorough resource I think all women with PCOS should read.

Angela Grassi is a licensed and registered dietician specializing in the treatment of PCOS and eating disorders. Her office is in Haverford, Pennsylvania. You can find her at www. pcosnutrition.com. Stephanie Mattei is a licensed psychologist who specializes in women’s mental health. Stephanie is located in Bala Cynwyd, Pennsylvania. You can find Stephanie at the Center for Acceptance and Change at www. centerforacceptanceandchange.com/ body_index.html. 17

PCOS & Pregnancy By Angela Grassi, MS, RD, LDN

regnancy is an exciting time for women with PCOS. Many women have been trying to conceive for months or years only to be repeatedly frustrated, sad and confused, among other emotions. So pregnancy comes as a bit of a relief when it finally happens. Having PCOS and being pregnant, however, does pose some concerns. Some women who have undergone fertility treatments may be carrying multiple babies and will have special dietary and medical needs. Also, because many women with PCOS have hormonal imbalances and are overweight, they are at a higher risk for miscarriage and complications such as gestational diabetes (diabetes in pregnancy) and high blood pressure during pregnancy. Proper medical and nutrition management are imperative to prevent the onset of these complications and to optimize your baby’s growth and development. Whether you are pregnant or tying to conceive, this article discusses some of the unique concerns women with PCOS face during pregnancy as well as the lactation period.

Emotional Concerns in Pregnancy

Many women with PCOS who are able to conceive may have many misconceptions when it comes to a healthy diet during pregnancy. Although current evidence does not support it, popular diet guidelines for PCOS (mostly from the internet) recommend a

very low-carbohydrate diet. This may be problematic for some women who followed these recommendations, as they may feel apprehensive about eating foods containing carbohydrates during pregnancy. This includes fruits, vegetables, legumes, and grains, all of which provide important vitamins, minerals, and fiber and are essential for a baby’s growth and development. Women may also be inclined to limit carbohydrates out of fear of gaining too much weight or to prevent the onset of gestational diabetes (currently no evidence supports the notion of limiting carbohydrates during pregnancy to prevent gestational diabetes). Some women, on the other hand, might find pregnancy a license to eat anything they want as they may, for the first time ever, feel less pressure to restrict their intake in a society obsessed with thinness. This can be troublesome if they have been very restrictive in their eating prior to conceiving. It can lead to bingeing during pregnancy, resulting in excessive weight gain. Additionally, women who already struggle with anxiety and depression may feel these conditions are exasperated during pregnancy and could turn to food for emotional support. It is common for a woman who has been following a diet of limited carbohydrates pre-pregnancy to abandon this way of eating while pregnant, turning to once forbidden refined carbohydrates and high satu-

rated fat-containing foods. As one patient put it, “I am pregnant now and do not have to worry about managing my insulin levels or my weight.” This attitude is problematic as it can lead to excessive weight gain during pregnancy, increasing the chances of adverse health risks like gestational diabetes. Body image issues can also be a concern during pregnancy as those who have struggled with their weight most of their lives may feel that the weight gain will get out of control. They may also have dif-

trimester and had gained a reasonable seven pounds. It is advised for women who are pregnant to avoid excessive weight gain, especially if they are overweight at conception. The widespread saying ‘eating for two’ is a myth. Excessive weight gain during pregnancy does increase the risk for complications for both mother and baby. While every woman’s pregnancy is different, Table 1 shows the recommended weight gain guidelines during pregnancy and Table 2 shows weight gain recommendations for women carrying twins.

Health Concerns of Pregnant Women with PCOS

ficulties accepting weight gain and getting larger in general. Women

with PCOS also carry their weight in their mid-section and may not look pregnant until their third trimester causing some to struggle with body image concerns of failing to look pregnant. One PCOS patient I worked with who was pregnant admitted to purposely wanting to eat extra food to gain more weight than she already had because she wasn’t “showing” yet, and wanted the attention she saw other pregnant women receive. This patient was in the middle of her second

Because most women with PCOS have hormonal imbalances and are overweight, they are at a higher risk for miscarriage and complications such as gestational diabetes, pre-eclampsia (high blood pressure), and preterm labor during pregnany. It has also been reported that infants born to women with PCOS have higher rate of admissions to neonatal intensive units. Because of the high rate of gestational diabetes, physicians usually recommended testing be initiated earlier in women with PCOS, at 20 weeks gestation and, if normal, be repeated by the standard screening time for all pregnant women, between 24-28 weeks gestation. Physical activity can help manage blood pressure, glucose and insulin resistance, especially if done after eating. One example is walking after meals for 10-20 minutes. The popular PCOS medication Metformin has also been shown to be a safe way to prevent gestational diabetes if taken during pregnancy. Metformin has also been shown to lower the risk of

Continued on page 27

Live Happier

& Healthier

with

PCOS Editor’s Note: In

this issue, we introduce a new Q&A column with Dr. Gretchen Kubacky, a psychologist who specializes in PCOS, and is also a PCOS patient. If you have questions about coping with your PCOS, how relationships are affected by PCOS, or other mental health issues, send them to Dr. Gretchen at AskDrGretchen@gmail.com, and she will address them in future columns.

Question:

therapist (psychiatrist, psychologist, marriage and family therapist, or social worker) for further assessment, therapy (counseling), and possible evaluation for prescription medication such as anti-depressants.

Answer:

Therapists are specially trained and licensed to assess the type, degree, and severity of your condition, make treatment recommendations, and coordinate care with your doctor and, if needed, a psychiatrist. Therapists also conduct talk therapy and utilize other techniques aimed at improving your coping skills, your relationships, and the way you manage your PCOS and other stressors.

My doctor said she’s worried about my mood. She thinks I might be depressed, and she gave me a referral for a therapist. What’s a mood disorder, and why do I need a therapist?

mood disorder is a broad category of psychological issues that includes both depression and anxiety. It is very common for women with PCOS to also have a mood disorder. Depression and anxiety take many forms, and often have overlapping symptoms. The severity of the symptoms ranges from light (barely noticeable, except perhaps to someone who knows you well, or is trained to look for the signs) to severe (major depressive disorder, feeling suicidal, having panic attacks or anxiety attacks). The treatments for depression and anxiety can include similar techniques, and many of the medications used to treat one condition can have a positive impact on the other condition. Some of the things your doctor may have noticed, or asked you about include: • your sleep – are you sleeping too much or too little? • eating habits – eating too much or too little/unplanned weight gain or loss • feeling down – not wanting to leave the house, thinking about killing yourself, just generally depressed • low energy - difficulty getting motivated to go to work, take care of yourself, or work-out • low self-esteem – not taking proper care of yourself • nervous habits - especially brought on by high levels of stress, or interfering with your ability to carry out your usual routines • problems in your relationships If these observations or answers were concerning to your doctor, she probably referred you to a

If your doctor has suggested that you see a therapist, it is important to follow-through with that referral as soon as possible. If you don’t like the first therapist you talk to, feel free to keep looking until you find someone you feel comfortable with. It is important to have a good relationship with your therapist in order to receive the most effective treatment for your mood disorder.

About the Author:

Gretchen Kubacky, Psy.D. is a licensed clinical psychologist in West Los Angeles, who specializes in PCOS. She counsels you through your health challenges, work/life balance issues, and relationship issues. If you have questions for Dr. Gretchen or would like to learn more about her practice, please visit her website at www.drkubacky.com. © 2009. This article was excerpted with permission from Gretchen Kubacky, Psy.D. at www. drkubacky.com. Permission to reprint is granted by the author. All reprints must state, “Reprinted with permission by Gretchen Kubacky, Psy.D. at www.drkubacky.com. Originally published in PCOSMagazine.com, November/December 2009. DISCLAIMER: The information and opinions reflected in this article are solely those of the author and do not reflect on the publisher, editor, or editorial staff of PCOS Magazine. This article has been written and reviewed by the author. Any errors should be brought to the attention of the author.

Get Supported! M

Don’t be isolated. Join the crowd!

any women with PCOS report that their doctor has told them that they need to lose weight in order to improve symptoms, enhance fertility, and avoid dangerous health complications in the future. But what they are not told is the best way to go about making changes to their diets in order to make these things happen. To further complicate matters, there is a lot of contradicting information on the internet and elsewhere. Chances are that if you see several different practitioners, you will receive several different sets of advice. This is enough to make a girl throw up her arms and just do nothing. After all, what if you do the “wrong” thing and damage your health even further? If weight gain has been an issue for you, you have probably tried several different diets. You have probably stopped and started many times. You may have lost some weight a few times. What you are trying to do is to change your lifestyle. You may be overlooking something that can mean the difference between starting another “diet” and achieving long-term success. There is no doubt that PCOS in itself can be very isolating. As if that is not bad enough, when you are trying to steer away from the crowd and make positive changes in your eating habits in order to improve your health, this can make you feel even more alone and misunderstood. This loneliness, along with a lack of accountability, can lead to frustration and can cause you to just give up and ignore any and all advice you have been given

and throw away all of the knowledge that you have worked hard to gather. Angela*, who has been dealing with PCOS since she was a young teenager, has tried “everything”. She has been on many commercial diet programs, including Weight Watchers and a medical weight loss program. She has tried counting calories and exercising an hour per day 5 days per week and reports that things just did not add up. “According to all of the experts, I should have been losing tons of weight, but that did not happen.” She recently has discovered, with the help of her doctor, that she is insulin resistant. She has begun to see a nutritionist and has discovered that her restrictive way of eating was not the right way to go about trying to release weight from her body. “My food logs showed that I was eating around 1200 calories per day on average, and my nutritionist told me that I was not eating enough calories, especially with how much I was working out.” Having someone who could point out where she was going wrong was very helpful. “I finally found someone who understood how hard it is for me to lose weight.” Lower carbohydrate diets such as Atkins and the South Beach Diet are popular among women with PCOS. Many doctors will give the advice that women with PCOS need to “watch the carbs”. To many women, this translates into “can’t have” any carbohydrates whatsoever. People’s opinions vary on how many carbohydrates per

day is too many, but one thing on which many women tend to agree is that these type of diets are very hard to maintain over the long term. For many, cutting out carbs in the beginning causes significant weight loss, which leads to hope. But the hope fades away when it comes time to try to add the carbs back – often the weight follows right behind. For Shelly*, who has had luck controlling her PCOS symptoms by following a low carb diet, maintaining this lifestyle has been very difficult. “I’m afraid to eat carbs! If I eat something that has a lot of carbs in it I gain weight almost immediately. I always cheat

By Holly Amarandei, MS, CPC

when I get together with friends or family so my weight fluctuates.” For Anna*, who has been on and off low carbohydrate diets for many years, this way of eating has become very boring. She has recently become frustrated with how difficult it is to maintain this lifestyle and has decided that she will “no longer diet”. “I need to find a way to be able to eat some carbs. Living this way is much too difficult and I do not think I can eat this way for the rest of my life. This life is too lonely, I could use some support.” Learning which foods and in what quantities is just one piece of the weight loss puzzle. Women with PCOS often have almost irresistible cravings for carbohydrates, which can make it very difficult to stick with a healthy eating plan. Many women also struggle with some degree of depression and/or anxiety, which can lead to binge eating for some and restrictive eating for

others. For some, low self-esteem can cause self-sabotaging behavior. Some women have unrealistic goals for themselves and some women have not stopped to think about what their goals for getting and staying healthy might be. Even if you are making positive changes but there is no acknowledgement of your accomplishments, you can adopt a rather apathetic attitude and begin slipping back into your old ways. It is also necessary to address other elements of your life, such as stressful situations, busy schedules, unsupportive friends and family members, and holidays where unhealthy food is abundant and hard to resist. Facing all of these things is easier if are not doing it all on your own.

partners), you can be successful in reaching your weight release goals. You may think that you are not able to find people that can support you in your efforts to create a healthier you. This simply is not true. This may even be one of the excuses that you use for sabotaging your own efforts. Here are some ways that you can find some cheerleaders and accountability partners:

Keep a public food log. Research shows that you are twice as likely to lose weight if you write down what you eat. Why not use this as an opportunity to gain some supporters? Some people prefer to publish a blog that outlines their goals and their continual progress. If you find yourself “slipping up” more than a couple of times per week, it may be more helpful for you to actually publish everything that you eat each day so that your readers can keep you accountable. You may think twice about devouring half a chocolate cake if you know that you will need to share this information with your readers. You may even inspire a few of them to reform their own ways and jump on the health wagon with you.

The truth is, for the most part you probably know the things that you need to do in order to begin releasing weight and start feeling better. Find some work out partners. But sometimes, you just do not Can’t get your friends or family want to. You might not even know off the couch to join in an activwhy; sometimes it takes someone else to point it out. Sometimes you ity with you? You can join a class just need someone to challenge you of some sort – many gyms offer to go above and beyond what you Continued on page 30 believe are your own capabilities. Sometimes you just need to complain and express your fears. This is where having a support system can make a humongous differSpecializing in helping women Holly Amarandei, MS, CPC ence your ultimate www.yummylifecoaching.com with PCOS live healthy lives (616) 284-1644 success. With the Weight Loss Stress Management SCHEDULE YOUR FREE help of an accountInfertility Support DISCOVERY SESSION TODAY! ability partner (or

BABY?

When Are You Going To Have A A s a woman in her early-ish thirties who has been happily married for three and a half years, this is a question I get asked all too often. To be honest, I never really thought it was a question I would be faced with. I had always tended to be a “playby-the-rules” kind of girl, and a “play-by-the-rules” kind of girl would start a family soon after getting married, right? Well, as I have learned, sometimes life doesn’t go as planned. When I was in my late teens, my mother took me to my first appointment with the “lady doctor”. I was seventeen years old and had not yet gotten my period. I remember thinking I was so lucky, because all throughout middle and high school, when my friends were complaining about cramps and hiding gigantic maxi pads (they are called “maxi” for a reason!) in their purses, backpacks, and lockers, I just went about my blood and cramp-free life. As they say, ignorance is bliss! It never occurred to me that I was different, or strange, or that there was anything “wrong” with me, per se, until I started hearing relatives and family friends exclaiming in feigned whispers, “She hasn’t gotten her period yet?” (To this day I wonder why adults think they can’t be heard when making comments around children who are in the

same room! They might as well have spelled it out right in front of me—“She hasn’t gotten her p-e-ri-o-d yet?”--that would have been just as subtle, and twice as ineffective! )

At that first appointment with the gynecologist, I was told by my doctor that I was fine, “normal” even, but that I would most likely “need a little help” when the time came for me to get pregnant “later in life”. At that age I was more concerned with getting noticed by the cute boy in my first period class than I was with getting my first period, so I didn’t find that news to be terribly traumatizing (although it was something that I always carried with me). Fast forward 15 years, to a college degree, a teaching career, and one husband later, and the news stings a bit more. Because I always had it in the back of my mind that it might take some time for me to get pregnant, my husband and I started not “nottrying” right after we got married. More than a decade and many periods had passed since that first appointment (the doctor put me on the birth control pill to get me to menstruate, so my body went through the motions for about a dozen years while I was on it). Although I knew I might “need some help”, I honestly believed I’d be on the road to Mommyville in no

By Suzy Reyes

time! Well, my bags were packed and I was ready to go, but apparently my body didn’t get the message. Once I went off the pill, my periods became increasingly irregular, if not completely absent. About a year passed, and nothing happened. No baby, and very few periods. I mentioned this at my routine appointment with my gynecologist, who was not the same doctor I had seen years before. He referred me to an infertility specialist, which I knew was fairly common, since it seemed as though more of my friends were visiting infertility specialists than hair stylists or manicurists! I was surprised, however, that he didn’t refer me to the same doctor to whom he had referred my friends and relatives in the past. The doctor he referred me to was “new and fabulous”, he said, and he wanted me to see him, and only him. I found this strange, but figured he had his reasons, and I called the next day to schedule the appointment. The initial visit to the infertility specialist was fairly routine—lots of questions, lots of paperwork, and a quick exam. The doctor was extremely kind and seemed unbelievably knowledgeable (not

to mention the fact that he was about thirty years younger and much more handsome than the old dogs everyone else had been sent to!). He introduced himself, made small-talk, and reviewed my chart. He then pretty much took one look at me (inside and out) and said “you have a condition called PCOS”. This news was horrifying to me, because I had just recently learned that one of my cousins had PCOS, and thought she would not be able to have children because of it. So there I was, looking at the doctor, with tears spilling down my cheeks. (By the way, the only thing worse than crying in front of a doctor who has just explored your most private of parts, is crying in front of a young, handsome doctor who has just explored your most private

of parts!) He looked surprised, I guess because he hadn’t really said much yet, and asked why I was upset. I managed to sputter, “because my cousin has PCOS and didn’t think she could get pregnant”, to which he responded with a sympathetic look. Then I continued, “but I don’t know why I’m so upset... because she is pregnant!” (We are all aware of the hormonal imbalances involved with this condition, right???). So that was it. The day that all of the weird stuff that had or hadn’t been going on with my body for most of my life finally got a name. I went home and did some online stalking, um, I mean research, and discovered that the doctor I was specifically sent to, “Dr. H”, specializes in infertility in women with PCOS. I also discovered that I was

basically a poster child for PCOS. While I am fortunate enough to only suffer from a few of the more obvious symptoms of PCOS, they are enough that I was easily diagnosed, which explained why I was referred to Dr. H in the first place. Now, although I did have the initial “woe is me” Eeyore feelings when I was first diagnosed, I did a lot of reading and found ways to deal Continued on page 30

n 2008, social entrepreneur Sasha Ottey left her full-time job as a microbiologist to start PCOS Challenge, Inc., a nonprofit support organization that is changing the lives of thousands of women with Polycystic Ovarian Syndrome (PCOS). In less than year, PCOS Challenge, Inc. has grown into a caring support network encompassing over 4,000 members offering fitness, nutrition and mental wellness programs; a weekly radio show; local offline support groups; and support and social networking websites that attract more than 25,000 visitors per month. Sasha was faced with a defining moment in her life, after being diagnosed with PCOS in April of 2008. Her doctor handed her a pamphlet and a pack of birth control pills for treatment and sent her home. "The information in the pamphlet

was basic, and I spent a lot of time searching for more information and support. It became immediately evident that there was a need for more support for women with PCOS," Ottey explains. “My diagnosis left me devastated. At that point, I had two choices: give up or fight. I have never been one to quit, so I planned to fight back and challenge PCOS. I knew starting a nonprofit in a recession was not going to be easy, however with millions of women just like me, it was not going to be my fight alone, but their fight as well.” There is a significant gap in the quality of information and resources available to assist, educate, and inform women with PCOS, their supporters, and even health care professionals about the condition and treatment options. PCOS Challenge strives to deliver helpful

information faster and at a higher quality than previously available. The organization is innovative in its multimedia approach to providing support and creating awareness for women with PCOS. Its website, PCOSChallenge.com has been called the “Facebook for women with PCOS” by its members and its popular radio show features internationally recognized PCOS experts, New York Times best-selling authors, and real life stories from women with PCOS. The company also provides unique resources, content, and expert support for women with PCOS through online and offline support networks, webinars, and educational products. PCOS Challenge has received praise from its members, spon-

sors, top medical professionals, as well as the Polycystic Ovarian Syndrome Association (PCOSA). “We fully support the objectives and efforts of Sasha and PCOS Challenge, and commit our resources to assist in fulfillment of her goals,” says Christine DeZarn, founder of PCOSA. In 2010, the PCOS Challenge will launch its official television show and multiple online and in-person 16-week fitness, nutrition, and mental wellness challenges. “With enough awareness, support, and resources, I am confident that we can overcome this syndrome,” says Ottey. “We encourage the thousands of other women who are ready to fight Polycystic Ovarian Syndrome to join the PCOSChallenge.com support network to connect with other women, share experiences, and let their voices be heard.” About PCOS Challenge Sasha Ottey is Founder and CEO of PCOS Challenge, Inc. She is a Clinical and Research Microbiologist with a Bachelor’s degree in Clinical Laboratory Science from Howard University and a Master’s in Health Administration from the University of Phoenix. Her company, PCOS Challenge, Inc., is a nonprofit organization that provides support for women with Polycystic Ovarian Syndrome (PCOS) through the PCOS Challenge nonprofit website (PCOSChallenge.org); PCOS Challenge Expert Series Workshops (PCOSChallenge.net); PCOS Challenge Support and Social Networking Website (PCOSChallenge.com); PCOS Challenge Radio Show; local offline support groups.

Pregnancy

continued from page 19

miscarriage among women with PCOS.

For women with PCOS, pregnancy should be considered a state of pre-gestational diabetes and as a precaution, diet guidelines should reflect that of a diet for gestational diabetes. A slight reduction in carbohydrate intake of 35-50% of total calories is suggested and consistent with The American Diabetes Association guidelines for gestational diabetes. The majority of carbohydrates should be of whole grain and high fiber quality, distributed between three meals and between two and four snacks. All meals and snacks need to include protein-rich foods to help stabilize glucose levels. Simple carbohydrates, including sweetened beverages (juices, soft drinks, sports drinks), candies, and desserts should be limited and avoided when possible. If you aren’t sure if you are meeting your required carbohydrate needs, consult with a registered dietitian.

Do Women With PCOS Have More Difficulty Breast Feeding?

Because of the many hormonal imbalances associated with PCOS, it has been speculated that some women with the syndrome may have difficulty breastfeeding and producing an adequate milk supply for their infants. This may be because the breast tissue fails to undergo the normal physiological changes during pregnancy needed to prepare for lactation, or perhaps not enough breast tissue existed prior to pregnancy. It is known that women with PCOS have low levels of progesterone which is needed for alveolar growth and development in breast tissue. Insulin also plays a role in milk production and having insulin resistance may also

contribute to lactation problems in women with PCOS. As a precaution, lactation consultants recommend that all women with PCOS pump after feedings for at least 10-15 minutes on each breast to help establish an adequate milk supply in the first 2 weeks of initiating nursing. Frequent feedings with full drainage can also help maximize milk production as well as consuming an adequate diet and fluid intake each day. For mothers with a low milk supply, extra breast stimulation by frequent nursing or pumping sessions is crucial. Skin-to-skin contact is also encouraged to boost milk production. Obtaining resources for local breastfeeding support groups, and preparing to work with a board-certified lactation consultant soon after giving birth is also suggested. Good breastfeeding management including proper latch and positioning are imperative to successful milk production and proper infant growth and development. Eating well, staying active, taking prenatals and possibly Metformin are some preventative ways women with PCOS can take to have a safe and healthy pregnancy. Angela Grassi, MS, RD, LDN is the author of The Dietitian’s Guide to Polycystic Ovary Syndrome and The PCOS Workbook: Your Guide to Complete Physical and Emotional Health. She provides nutrition consultations to women with PCOS via phone or in-person. Sign up for her free PCOS Nutrition Tips at www.PCOSnutrition.com.

hair growth in places hair should not be. Everyone chalked it up to me being Italian. But I don’t have a hairy Italian family. So that didn’t work for me,” Prato said. “I also had irregular periods and a pain on my left side all the time, and weight problems. I always had extra weight around my mid-section.” And even after visiting doctors with her concerns, a misdiagnosis led her to another dead end. This delayed the diagnosis of PCOS for quite a while.

Misdiagnosis?

One woman’s struggle toward a correct diagnosis of polycystic ovarian syndrome By Melanie VanDerveer

or many women, getting a diagnosis is the hardest part of dealing with polycystic ovarian syndrome. For others, it might be the lifestyle change that is ahead of them. And yet for others, it might be finding the best treatments for their particular symptoms. Many that struggle with the crazy symptoms of PCOS walk around without a diagnosis for years. Not knowing the cause of the health problems can bring on more. Just ask Carlyn Prato. The 26-year-old South River, NJ resident recently received a diagnosis of PCOS after many years of thinking she was going crazy. And her problems started during her teen years. “In high school I started to notice

“My primary doctor at the time told me the pain was from a hernia. That was around age 15,” she said. “It turned out it was a cyst that he was feeling. I was an athlete and danced, so he thought it had to be a hernia.” With a whole array of other medical issues including ADHD, depression and a multitude of allergies, the PCOS symptoms were anything but clear to Prato and her physicians. And with no family history of diabetes or insulin resistance, the thought of PCOS was never a valid option. “My grandmother’s mother had 12 or 13 kids. My grandmother had 2 kids, and all the other women in the family also had at least two children. There is no history of diabetes in either side of my family. I have a very healthy family,” Prato said. “And I have never even heard of PCOS before.” It was around the age of 18 that Prato really started to become concerned with her health issues. With each symptom came possible answers that made sense, but weren’t correct. With each wrong answer came more frustration and an overwhelming feeling of doom. “Around age 18 I started really asking doctors what was wrong. It

took from the time I was 18-yearsold until recently to get a diagnosis. That was about seven years,” Prato said. “It was my primary care doctor that diagnosed me. I went to her with nausea and pain on my left side. She looked at my previous blood work and sent me for more.” So what caused the diagnosis to rear its ugly head now after so many years of struggling for answers? “I worked in a doctor’s office and heard the doctors talking to other patients about some of my symptoms. I had blood work done and it came back with high cholesterol, high triglycerides and good cholesterol was low,” she said. “The doctor I worked for told me I was a walking heart attack at the age of 25. But I was diagnosed by my primary care physician based on that blood work and the blood work she ordered.” Since there is not one test that can determine if a woman has PCOS, physicians rely on a multitude of tests, including blood work and ultrasounds. “When I went to the hospital for ovarian pain once, they did an ultrasound,” Prato said. “I was told that my ovaries were perfect.” It wasn’t until blood work was performed that red flags were raised. Being told there are actual reasons Prato felt the way she did physically and mentally was the light at the end of a long tunnel. This is a complicated condition that is still not as mainstream as many others, so clear answers were still a missing piece to this puzzle. “When I first heard the diagnosis I thought to myself ‘oh crap,’” Prato said. “I have other health issues to begin with so she may have well told me I had cancer. That would

have hit me the exact same way.” PCOS demands lifestyle changes. With Prato’s fasting blood sugar so high and her cholesterol higher, it was time for a change. But what to do and where to seek help posed a new problem. Armed with a definitive diagnosis meant it was time to do some homework, and Prato did just that. “Since my family and friends have no idea about this condition, I had to look online,” Prato said. “I have gotten a lot of great advice from soulcysters.com.” Metformin is one medication that physicians prescribe for the treatment of insulin resistance, one of the most common symptoms of PCOS. But it doesn’t work well for everyone. Herbal supplements are another popular route to go with fewer side effects. Prato tried both conventional and alternative medicine. “I can’t take Metformin. It’s doesn’t like me,” she said. “I am currently taking Vitex, cinnamon, B12 complex with folate and Omega 3. The Omega 3 is for the cholesterol and skin issues.”

New Jersey resident. She now has hope that she will reach her goals, and is focused on a few important ones. “My main goal is to not land in the hospital again,” she said. “And I want to get to my goal of being healthier and have a child in the next five years.” Prato hopes that every female with PCOS symptoms – irregular periods, recurrent miscarriages, ovarian pain, insulin resistance, weight problems, acne, hair growth in unusual places and mood swings – seek help sooner rather than later. The longer it takes for a diagnosis, the more frustration the patient has to deal with on a daily basis. “I’ve always known something wasn’t right. I’ve always had a feeling something was off. I’ve been telling my family for about five years that for some reason I just don’t think I can have children,” she said. “I just hope that other women find the diagnosis earlier. My advice is to fight to get one.”

Although the diagnosis only came a few short months ago, Prato has seen little changes that give her the strength to keep fighting for her health. But now she has more hope. “I’ve changed things and now I am not as tired as I used to be. I have more energy. I am not as cranky as I used to be either,” she said. “I have suffered with depression for a while and it hit me harder when I got the diagnosis. I am coping with it better though. I have had a lot of issues and every single one of them has been masked by the PCOS.”

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With diagnosis in hand, the future is looking brighter for the young

Get Supported!

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also join a running or walking club or participate in a program that can train you to walk or run a 5 or 10K or even a half marathon. Paying for a class or program in advance gives you a reason to keep on going. Working out with other people can also push you to work harder than you would if you were on your own. And as you get to know some of them, they will look for you and ask where you were if you choose to skip a session.

Work with a dietician if you are not sure what you should be eating or if your current eating plan is not working for you. A great dietician can be a wonderful accountability partner. And you will have the peace of mind knowing that there is science to back up the advice that you will receive.

and an online food journal. Another great online support system is Sparkpeople.com. This web site not only has a very useful online food journal but it also has several communities inside the larger community. Many cities have “teams” that compete and support one another. Team members often meet in person to work out together and just offer support and friendship. You can be successful at whatever eating plan that you decide to follow if you surround yourself with a powerful support system. PCOS is isolating enough – don’t let your diet be a reason to isolate yourself any further. *Name has been changed

Consider joining a weight loss group or a weight loss challenge. Many wellness coaches offer group programs at a much more affordable price than working one-on-one with a coach. You will not only have the coach to use as a resource and accountability partner but will also have the other group members to use as a support system. Many communities offer “Biggest Loser” contests and weight loss challenges. If you are the competitive type, this can give you an extra push and an extra reason to stick with your plan. Many challenges offer special perks for participants and monetary prizes for those that lose the largest amount of weight.

Join an online support group. Some popular diet plans, such as the South Beach Diet, have an online program that includes message boards, recipes for members,

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 Holly at www.yummylifecoaching.com and yummylifeblog.com

Baby

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do was lose weight. While I knew losing weight is not easy, especially with the added burdens that come along for the ride when you have PCOS, I was a bit shocked as well as relieved to learn how much of a positive effect eating well and exercising can have on the condition, helping to balance out hormones and dramatically alleviate symptoms. It was no coincidence that I had been sent to Dr. H., or that during the follow-up consultation following our first meeting he had entertained me with a story about a woman he had once met who had PCOS. She had been overweight when he first met her, but when he ran into her about a year later, she was healthy and thin, and also pregnant. I knew this was his way of not-so-subtly hinting that I should lose some weight (he could have just spelled it out!), and when I walked out of his office that day I had every intention of doing so. Dr. H later reviewed my husband’s test results, and then placed us on hiatus, I guess you could say. He recommended some fertility vitamins to my husband (which eventually led to such loving questions as “Honey, have you taken your super-sperm pills today?” ), and suggested we come back in three months-- enough time to allow my husband’s swimmers get in better shape (and coincidentally, also enough time to allow me to shed a few pounds). I guess you could say this was sort of an impetus that has inspired me to make an attempt at a healthier lifestyle (not as soon as I should have, but hey, progress is progress)....

Brenda and her husband, Javier Frederick, MD

I made a plan. It wasn’t easy, but I did it. So can you.

It’s not easy, but it’s worth it. People who learn to manage their diabetes from the start have fewer health problems from diabetes years later. You can too. Learn how to better manage your diabetes. Order a free booklet, 4 Steps to Control Your Diabetes. For Life. from the National Diabetes Education Program to learn more.

For more information, visit www.YourDiabetesInfo.org or call 1-888-693-NDEP (6337); TTY: 1-866-569-1162. The U.S. Department of Health and Human Services’ National Diabetes Education Program (NDEP) is jointly sponsored by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) with the support of more than 200 partner organizations.