PCOS Life Changes... Empower yourself with choices

PCOS Life Changes... Empower yourself with choices

Author: Ashley Levinson @GoTeal4PCOS(Woodbury, NJ - March 28, 2014)

PCOS treatments and solutions are as varied as the symptoms associated with the syndrome.

For Women and Girls with Polycystic Ovary Syndrome (PCOS)  accepting, learning and understanding PCOS can sometimes be a daunting task.  However, armed with the proper tools and support, women and girls are able to make the right choices for their long term care.

With that being said, Where does one start? 

1. Knowledge....

Knowledge is power.. There more you know about Polycystic Ovary Syndrome (PCOS) the better equipped you are to make the right decisions when it comes to your healthcare.  The mere acceptance of the first solution thrown at you is not always the best path for you.

There are many resources available to learn about PCOS... Some of the ones I have found to be reliable resources are

ASRM Find a Health Professional  tool 

Users can search by area of specialization. Areas of specialization for doctors who may be familiar with PCOS include gynecology, gynecology/infertility, infertility, obstetrics and gynecology, adolescent medicine, and reproductive endocrinology and infertility

The Hormone Health Network 

The Hormone Health Network is a leading source of hormone-related health information for the public, health care providers, and the media. Use the Hormone Health Network search tool to find an endocrinologist  near you

PCOS Awareness Association PCOSAA

PCOSAA is a nonprofit organization that provides comprehensive information, support, and advocacy for women and girls with PCOS. You can Connect with other women with PCOS and find and abundance of resources tailored to learning about the syndrome

PCOS Nutrition Center

Support, tools, information and resources you need to make lasting changes to your eating, health and fertility. 

2. Exploring Treatment Options....

For some, medications are a necessity and solution to overcome the symptoms and overall cause of PCOS while for others a more natural approach seems to be the key!  

Treatment goals are based on your symptoms, whether or not you want to become pregnant, and lowering your chances of getting heart disease and diabetes. Many women will need a combination of treatments to meet these goals. Some treatments for PCOS include:

Lifestyle modification. Many women with PCOS are overweight or obese, which can cause health problems. You can help manage your PCOS by eating healthy and exercising to keep your weight at a healthy level. Healthy eating tips include:

This helps to lower blood glucose (sugar) levels, improve the body's use of insulin, and normalize hormone levels in your body. Even a 10 percent loss in body weight can restore a normal period and make your cycle more regular.

• Limiting processed foods and foods with added sugars

• Adding more whole-grain products, fruits, vegetables, and lean meats to your diet

• Control menstrual cycles

• Reduce male hormone levels

• Help to clear acne

• Clomiphene (KLOHM-uh-feen) (Clomid, Serophene) — the first choice therapy to stimulate ovulation for most patients.

• Metformin taken with clomiphene — may be tried if clomiphene alone fails. The combination may help women with PCOS ovulate on lower doses of medication.

• Gonadotropins (goe-NAD-oh-troe-pins) — given as shots, but are more expensive and raise the risk of multiple births compared to clomiphene.

• Vaniqa (van-ik-uh) cream to reduce facial hair

• Laser hair removal or electrolysis to remove hair

• Hormonal treatment to keep new hair from growing

Researchers continue to search for new ways to treat PCOS. To learn more about current PCOS treatment studies, visit ClinicalTrials.gov. Talk to your doctor about whether taking part in a clinical trial might be 

Birth control pills. For women who don't want to get pregnant, birth control pills can:

Keep in mind that the menstrual cycle will become abnormal again if the pill is stopped. Women may also think about taking a pill that only has progesterone (proh-JES-tuh-rohn), like Provera, to control the menstrual cycle and reduce the risk of endometrial cancer (See Does PCOS put women at risk for other health problems?). But, progesterone alone does not help reduce acne and hair growth.

Diabetes medications. The medicine metformin (Glucophage) is used to treat type 2 diabetes. It has also been found to help with PCOS symptoms, though it isn’t approved by the U.S Food and Drug Administration (FDA) for this use. Metformin affects the way insulin controls blood glucose (sugar) and lowers testosterone production. It slows the growth of abnormal hair and, after a few months of use, may help ovulation to return. Recent research has shown metformin to have other positive effects, such as decreased body mass and improved cholesterol levels. Metformin will not cause a person to become diabetic.

Fertility medications. Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help women with PCOS become pregnant. Even so, other reasons for infertility in both the woman and man should be ruled out before fertility medications are used. Also, some fertility medications increase the risk for multiple births (twins, triplets). Treatment options include:

Another option is in vitro fertilization (IVF). IVF offers the best chance of becoming pregnant in any given cycle. It also gives doctors better control over the chance of multiple births. But, IVF is very costly.

Surgery. "Ovarian drilling" is a surgery that may increase the chance of ovulation. It’s sometimes used when a woman does not respond to fertility medicines. The doctor makes a very small cut above or below the navel (belly button) and inserts a small tool that acts like a telescope into the abdomen (stomach). This is called laparoscopy (lap-uh-RAHS-kuh-pee). The doctor then punctures the ovary with a small needle carrying an electric current to destroy a small portion of the ovary. This procedure carries a risk of developing scar tissue on the ovary. This surgery can lower male hormone levels and help with ovulation. But, these effects may only last a few months. This treatment doesn't help with loss of scalp hair or increased hair growth on other parts of the body.

Medicine for increased hair growth or extra male hormones. Medicines called anti-androgens may reduce hair growth and clear acne. Spironolactone (speer-on-oh-LAK-tone) (Aldactone), first used to treat high blood pressure, has been shown to reduce the impact of male hormones on hair growth in women. Finasteride (fin-AST-uhr-yd) (Propecia), a medicine taken by men for hair loss, has the same effect. Anti-androgens are often combined with birth control pills.  These medications should not be taken if you are trying to become pregnant.

Before taking Aldactone, tell your doctor if you are pregnant or plan to become pregnant. Do not breastfeed while taking this medicine. Women who may become pregnant should not handle Propecia.

Other options include:

Other treatments. Some research has shown that bariatric (weight loss) surgery may be effective in resolving PCOS in morbidly obese women. Morbid obesity means having a BMI of more than 40, or a BMI of 35 to 40 with an obesity-related disease. The drug troglitazone (troh-GLIT-uh-zohn) was shown to help women with PCOS. But, it was taken off the market because it caused liver problems. Similar drugs without the same side effect are being tested in small trials.

SOURCE: <a

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3. Acceptance...

Many women with PCOS have difficulty accepting PCOS because the feel different, ashamed and set apart from what is considered to be the norm..  But when we think about it, what is normal???  

First, You have the ability to overcome the roller coaster of denial and depression.  As with anything else in life.. you learn, you research and you fight!!!!

Next, Accept PCOS and know you are not alone and  within you is the power to make change!!

Great resources for the right mind set with PCOS are:

Freedom from PCOS

We have become so “reactive” in our health. The very thought that we can create amazing health, and that things don’t just happen to us, is an absurd idea for most women. The hard-core truth is that what we’re thinking on the inside manifests on the outside. - Katie Humphrey

Conquer your PCOS Course

Dr. Rebecca Harwin, a leading PCOS Expert offers great information, products and resources to overcome PCOS

In closing... The path before you is never an easy one but with each step you become closer to reaching your destination..  Never give up, never accept one answer and never be ashamed of who you are, embrace all you can and want to be and go after it...

When I started this journey, I was told I would never have kids and was obese..  I felt I had nowhere to turn, no one who understood and no way of ever getting to where I wanted to be..  While I am not perfect today... I now have two children, I have lost over 120 pounds and am able to control my symptoms on my terms without medications.  You can see how it all began for me in the segment I did for Mystery Diagnosis on Discovery Health back in 2006...

PCOS on Mystery Diagnosis

  

The Big D Word and PCOS!

The Concept of Dieting as a lifestyle tool for PCOS has often been misrepresented and misunderstood by many as an excuse to promote weight loss not as a tool for helping the syndrome....

Over the past few years, it has become increasingly evident that PCOS is not only complicated to diagnose but, treat as well. Medications have been very effective in helping women with the syndrome combat many of the symptoms associated with PCOS however for many women, the effectiveness does not always last, using medication alone.

As result, there has been an emergence of information and tools to help women and girls control PCOS through lifestyle change. Lifestyle change has been clinically proven to reduce insulin sensitivity in patients with PCOS, allowing them to alleviate many of the symptoms such as weight, acne, infertility, mood alterations and irregular menstrual cycles.

Dieting is an example of a lifestyle tool which has often been misrepresented and misunderstood by many as a tool for helping PCOS, as often it is difficult for women with PCOS to loose weight due to insulin resistance.  Diet however, should not be thought of as simply loosing weight or only for women who are obese with PCOS.  The root of the word diet means nutrition and should be thought of as feeding our bodies and offering our bodies the proper nutrition.

"With insulin resistance (IR), your blood sugar levels rise in spite of high levels of insulin. Eventually type 2 diabetes may result. Yet positive changes in diet and exercise may postpone the development of diabetes. A PCOS diet reducing the amount of sugary carbs that you eat may offer the weight-loss and/or health benefits you seek.

To make these healthy PCOS diet changes, cut out white breads, pasta, potatoes, cereals, and some fruits and snack foods. Replace those items with healthy PCOS diet options like the following:

• Nutrient dense, high-fiber carbs 
• Foods high in protein (lean meats, legumes)
• Foods containing healthy fats (olive oil, nuts, fish)

Ask your doctor or a registered dietitian for a list of foods to try and a list of foods to avoid. And try to eat mini-meals throughout the day to keep your blood sugar levels even" -PCOS and Strategies Article, Attain Fertility

 “Don’t do a diet, live a diet”. Dieting itself  is a restrictive concept and a restrictive pattern that is to last for a certain amount of time and then is to be completed. Reframe your thinking to eating to live, not living to eat, it is really the lifestyle change or the everyday patterns that a person goes through that dictates what they are going to weigh and how they are going to feel!

Lifestyle changes are what ultimately dictates success and diet for PCOS is more than controlling carbohydrates and sugars, it is the development of lifestyle pattern, which will ultimately help women with PCOS live healthier lives by engaging in becoming active participants in their health.

PCOS and Cardiac Risk

Author: Ashley Levinson, PCOS Awareness Advocate
Twitter: @jerzgurlie
Learn More about PCOS: @GoTeal4PCOS and @PCOSAA

A study conducted by the Royal Free and University College Medical School in London found that women with PCOS were nearly twice as likely to suffer from atherosclerosis (plaque deposits in the arteries), than women without the syndrome. Atherosclerosis sharply increases the risk of coronary heart disease and stroke."The implication is that a common condition thought to be primarily a gynecological problem may predispose women to heart disease," says lead author Paul Hardiman, M.D., a Senior Lecturer in obstetrics and gynecology.

Coronary heart disease is the largest killer of men and women in the United States, according to the American Heart Association. Previous research has linked PCOS, which is one of the most common causes of infertility in reproductive aged women, with multiple risk factors for coronary heart disease, including Diabetes, obesity and hypertension. Women with PCOS often have elevated cholesterol levels, high blood pressure, obesity and of course, Insulin Resistance, which is the underlying cause of PCOS.

Insulin Resistance increases a person's risk of developing Type 2 Diabetes, and this condition sharply increases the risk of heart disease. Previous research has estimated that these factors can cause up to a seven-fold increase in risk for heart attack for women with PCOS compared to those without it. In the London study, there was no significant difference in age or in total cholesterol, HDL ("good") or LDL ("bad") cholesterol among the groups taking part. However, compared to women with normal ovaries, those with PCOS had significantly higher weight, blood pressure and insulin levels.Researchers have found that PCOS, with its symptomatic disorders of hypertension, excessive fat tissue in and around the abdominal area, blood fat disorders (high triglycerides and low HDL), high blood pressure, Hyperandrogenism (elevated levels of male hormones) and Insulin Resistance, put sufferers at higher risk of developing future serious, life-threatening health conditions such as coronary heart disease and stroke.

Coronary heart disease (CHD) is a broad term that describes any disorder that can impact the functioning of the heart muscle itself or the cardiovascular system. Conditions that contribute to heart disease include: high blood pressure, Cardiovascular Disease, arteriosclerosis (hardening of the arteries), atherosclerosis and more. The causes of heart disease include: elevated LDL cholesterol, low HDL cholesterol, obesity, elevated blood pressure, Diabetes, cigarette smoking and lack of physical activity - many of the underlying conditions found in both PCOS and Insulin Resistance.Chronic high levels of glucose and insulin are classic symptoms of Insulin Resistance and PCOS.

One of the primary risk factors for arteriosclerosis is an elevated level of triglycerides and the biggest risk factor for increasing the production of triglycerides is the rate of your insulin secretion.Insulin is produced in your pancreas and released into the circulatory system where it is the key to the absorption of glucose by your cells. If your cells resist insulin, both insulin and glucose build up in your blood. Excess insulin leads to weight gain and high blood pressure - both precursors to heart disease. As insulin comes in contact with the interior wall of the arteries, it damages the tissue, causing the initial injury that produces plaque. Therefore, having Insulin Resistance and PCOS directly cause changes in the blood lipids and overall cardiovascular health that contribute to the formation of heart disease.

Recommendations for reducing heart disease risk are the same as those for reducing Insulin Resistance: decreasing insulin, balancing cholesterol and lowering blood pressure. It all involves managing PCOS to minimize current symptoms and an attempt to delay or prevent worsening of the underlying conditions that lead to heart disease. This can be done through careful food choices, exercise and weight loss in overweight individuals. But a multi-faceted approach is clearly necessary to address all the symptoms of these conditions.

To learn more about heart health please visit Dr. Sarah Samaan on Twitter @heartsmarter and The AHA Philly @AHAPhilly

PCOSAA.. Advocating for better PCOS Health

The PCOS Awareness Association (PCOSAA) has unveiled what is quickly becoming a definitive resource for information, awareness and support for polycystic ovary syndrome.

PCOSAA offers an array of resources for PCOS including their Q&A page to tools for managing life with PCOS, it also gives Professionals from around the globe an opportunity to share tips, research and most importantly perspectives on PCOS, PCOS Symptoms and PCOS treatments and management.

Information is a key component to understanding, accepting and managing PCOS.  Armed with the proper resources, women and girls can make informed decisions about their health and the best treatment options for their situations.

In wanting to provide comprehensive FREE resources for the visitors of this new website, PCOSAA has begun partnering with some of the leading experts, organizations and advocates for PCOS, symptoms associated with PCOS and treatments for PCOS.

You need to learn all you can. The Internet, social media and patient advocacy groups such as PCOSAA are invaluable. Beware of quick fixes, or unsupported boasting, and anecdotal reports. Some general rules about PCOS are emerging, but each individual with PCOS is unique!

PCOSAA realizes this very important fact, that each individual with PCOS is in fact unique and what may work for one person may not work for another. It is refreshing to see so many resources, options and perspectives being presented and offering new solutions for this often undiagnosed and under recognized syndrome.

PCOS is often mislabeled which also can lead to terrible medical issues such as metabolic syndrome, cardiovascular disease, cancer and diabetes. This is why having all the information about PCOS in one place, just as PCOSAA was set up to do, is going to be crucial as more and more are diagnosed within the coming years.

If you are an expert or know an expert in the field of PCOS, PCOS treatments and/or PCOS management, contact us to find out how to get involved info@pcosaaa.org or visit our website PCOSAA and click on our contact us button!

Four little letters, One big problem!!

So why is there such a fuss over  the 4 letters PCOS??

Author: Ashley Levinson, 

PCOS Awareness Advocate @GoTeal4PCOS

PCOS or Polycystic Ovary Syndrome is a syndrome that affects millions, yet what it is, what is does and who it affects is still gravely unrecognized and misunderstood. It is the lack of consensus about the syndrome, how it is diagnosed, and how it is treated that lead many to believe it is rare. However, this is a misconception that needs to be corrected.

Additionally, PCOS is also a metabolic disorder that affects several body systems and can cause significant long-term health consequences including diabetes, cardiovascular disease, cancers and stroke making it a precursor to some of the leading causes of death and disability in women today.  The costs of these inadequacies create a financial and wellness burden on our health system.

As outlined in the Article " Polycystic Ovary Syndrome Carries a High Price Literally and Figuratively, So Why Is No One Talking About It?" the following is a listing of the costs associated with the lack of information, resources and proper management tools for the syndrome...

"Polycystic ovary syndrome (PCOS) – the most common endocrine-related condition of reproductive-aged women – affects nearly 4 million women in the U.S. and costs $4.36 billion annually, according to a new report released today by The Endocrine Society. The study, published in The Journal of Clinical Endocrinology & Metabolism, shows that increased screening for PCOS may reduce the overall economic burden associated with the condition. Following are highlights from the study:

-     Costs from PCOS-associated diabetes = $1.77 billion 

-     Costs from treating menstrual dysfunction/abnormal uterine bleeding associated with    PCOS = $1.35 billion

-     Costs from treating hirsutism (excessive hair growth), a side effect of PCOS, = $622 million 

-     Costs from providing infertility care for PCOS patients = $533 million 

                       

BUT, the costs of the initial evaluation of PCOS are just $93 million.

 Source: https://www.endocrine.org/news-room/press-release-archives/2005/pcoscost

Polycystic Ovary Syndrome (PCOS) is the most common hormonal problem in women and the leading cause of infertility for women of reproductive age, worldwide. Statistics show PCOS to affect up to 10% of women and girls. The following are some staggering statistics from Right Diagnosis (http://www.rightdiagnosis.com/p/pcos/stats.htm) outlining just how prevalent this syndrome may be.

Prevalance of Polycystic ovary syndrome: 5-10% women of childbearing age (20-40); 30% of women have some PCOS symptoms (NWHIC).

Prevalance Rate: approx 1 in 40 or 2.50% or 6.8 million people in USA [about data]

Prevalance of Polycystic ovary syndrome: An estimated five to 10% of women of childbearing age have PCOS (ages 20-40). At least 30% of women have some symptoms of PCOS. (Source: excerpt from Polycystic Ovary Syndrome (PCOS): NWHIC)

Despite the prevalence of the condition many government agencies define it as rare...PCOS is listed as a rare disease by the following government agencies.  Ophanet defines rare when it affects 1 in 2000 people. NORD defines rare as a disease or syndrome affecting less than 200,000 people in a population, such as the United States.  The agencies listing PCOS as rare are....

NIH - National Institutes of Health

Ophanet - A consortium of European Partners

NORD - National Organization of Rare Diseases

The symptoms of PCOS can be not only physically debilitating, but also emotionally and psychologically wrenching. While no two women may have the same symptoms of PCOS, they are likely to include any or all of the following: Infertility, Irregular or absent periods, Excess hair growth on face and body, Male-Pattern hair thinning, Acne, Obesity and Lipid Abnormalities

While these symptoms easily help identify a problem, the cause of PCOS is not yet fully understood. It is thought that there are several causes, which could explain why different women have such varying symptoms to varying degrees of severity. This could also explain why less than half of those estimated to have PCOS, actually know they have it and experience delays in getting a diagnosis.

Many physicians often misdiagnose PCOS based on the fact that they look at the symptoms individually, rather than as a complete picture. Furthermore, since many of the symptoms involve a woman's reproductive system, PCOS is often mistaken for a gynecological disorder. It is, however, a disorder of the endocrine system, involving hormones and hormone production

Finding the proper PCOS diagnosis requires obtaining blood samples for a variety of hormones, including those produced by the ovaries, adrenal glands, pituitary gland and thyroid gland. A full physical examination and screening for cholesterol, triglyceride, glucose and insulin should also be part of a complete evaluation.

The other difficulty in PCOS being recognized the PCOS is there is often a stigma attached to many of the symptoms of PCOS, which may inhibit a woman from discussing various symptoms with her doctor such as facial and body hair, infertility and obesity. Some women may even suffer from depression as a result of dealing with these symptoms. Therefore, Public information and awareness about the symptoms and the serious nature of the disorder are crucial to identifying women in need of treatment.

As a result of all of this, prior to a few years ago, PCOS had been largely rarely diagnosed. The information to make a proper diagnosis just wasn't there. Your concerns, in many cases, would have been dismissed. Now the medical community is realizing it is more than menstrual irregularities, it's a lifelong condition that can take years off of your life.

As more information, research and advocacy surfaces for this syndrome, The public, medical professional and government agencies will no longer be able to ignore the significance and impact this syndrome has on women’s health.

To learn more about PCOS and to join the initiative to raise awareness for PCOS please join me personally on Twitter @GoTeal4PCOS #GOTeal4PCOS

And please visit and join The PCOS Awareness Association http://www.pcosaa.org  and on Twitter @PCOSAA