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