Why PCOS Matters; a guest blog from a dear friend and fellow advocate Ashley Levinson

Author: Ashley Levinson
Twitter: @PCOSgurl
(April 6, 2016 Sewell, NJ)

Up to 10% of women worldwide are affected by a syndrome known as #PCOS or Polycystic Ovary Syndrome, an endocrine disorder affecting multiple body systems. However, many of these women, medical professionals and the public have no idea of what PCOS is or why it matters.
So, lets break down Why PCOS Matters....


Polycystic Ovarian Syndrome (PCOS) is the most common metabolic disorder of reproductive-age women worldwide, it is associated with life-threatening medical illnesses putting women at grave risk for heart attack, stroke, diabetes, high blood pressure and cancer and they don’t even know it. Less than 70% of women estimated to have PCOS are aware they have the syndrome or even what the syndrome is. This means there are millions of women walking around undiagnosed or misdiagnosed, which could lead to major health epidemics.

Although PCOS affects various women in various ways, it should never be left unchecked! Even if you don't want children, it is essential to treat PCOS. The high insulin and testosterone associated with the syndrome can lead to major health consequences. The high insulin levels drive the ovary to produce too much testosterone creating many symptoms in the short-term such as acne, obesity, excess facial and body hair, infertility, irregular menses, depression and thinning scalp to mention a few.  So in most women, the key is to lower the insulin levels, which in turn will lower the testosterone but, in order to manage this, they need to be diagnosed! 

Clinically speaking, PCOS if left untreated can lead to major health consequences such as diabetes, cardiovascular disease, endometrial cancer, kidney problems, liver problems and stroke! The compromised insulin sensitivity which again can lead to androgen (male hormones) excess increase risk factors for these conditions with symptoms such as; obesity, hyperinsulinemina and irregular menstrual cycles which are all indicators and precursors to the aforementioned health conditions. In fact 50% of women with PCOS will become diabetic by the age of 40 and PCOS increases the risk for cardiovascular disease seven fold.

As it currently stands, PCOS is the most underserved health issue affecting women with less than 0.1% of NIH Funding in the United Statesbeing dedicated to PCOS research, diagnosis and treatment.  Furthermore, although there are guidelines that have been set by multiple organizations with regards to diagnosing PCOS, there is still no universal criteria or category for the syndrome. Until this is addressed, many women will continue to suffer needlessly wondering what is wrong with them.

Now let's talk about the emotional and physical implications.....

What PCOS is, and what it does to women who have it, is complicated to explain as symptoms and severity of the syndrome can vary from person to person. Therefore, information and support are key components to understanding, accepting and managing PCOS. Unfortunately, many of these women do not know where to start or look for help leaving many to feel isolated, depressed and fearful for their future health. As a result many have difficulty explaining to family, friends and others what PCOS is and why it should matter which leads to the reason why so many do not know what polycystic ovary syndrome is.  

For many women with the syndrome physicians often misdiagnose them 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 and often do not address PCOS unless issues of infertility arise. This means single women, older women, teens and those not looking to conceive may be overlooked. It is important therefore to note, PCOS is not gynecological it is rather a disorder of the endocrine system, involving hormones and hormone production. Until medical professionals become more educated and offer better resources, women with PCOS will continue to fall through the cracks.

The other difficulty in PCOS being recognized 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.

However, this is about to change, women are now turning to support communities on Twitter, Facebook and other social media platforms to help address many of these issues letting people know.

WHY PCOS MATTERS, here are a few of their reasons.

Shannan Marie Lewis - " #PCOSMattersbecause those who don't have it will never understand what we put our bodies through to be "normal" or be a MOTHER!"

Heather Scarborough - " #PCOSmatters because drs are brushing this disease off as if it were only a reproductive disorder when really, left untreated sufferers face problems like diabetes and cancer. "

Satin Russell - " #PCOSMatters because it affects mothers, sisters, daughters, cousins, aunties any woman in YOUR life as it is shown to be heredity."

Jeanette Hast - " #PCOSMatters because it affects my daily life and bringing down my life quality with all it's symptoms."

Missy Ruttencutter - "You see PCOS daily without even recognizing it. It's the weight that's carried, the embarrassing dark patches, the uncontrollable hair growth. But these are just symptoms. #PCOSmatters because it takes a toll on everything we as humans take security in"

Sharon Garret - "PCOS matters because so many of us struggle to feel like a "normal women" in so many ways. From having troubles conceiving, irregular periods or in losing weight. Even just getting ready in the morning having to deal with hair, and acne that most women do not have to face daily."

Nicolie Grippi Feldman - "It matters because so many women struggle with it and it effects every aspect of our lives. From our appearance to what we can eat to how we physically feel on a day to day basis to our mental health and how we feel about ourselves. Living with pcos effects every part of my life. It's made me feel like less of a woman. It's not just some thing that makes girls hairy and fat. ( I've had people insinuate as such). So many of us suffer through depression and anxiety and poor self esteem and generally feeling like crap most of the time. And the truth is you don't really know unless your going through it. People down play pcos as just another uncomfortable female issue. It's so much more than that."

In addition to these strong women whom have selflessly shared their sturggles with PCOS, there are organizations such as @PCOSChallenge @PCOSAA and @JeanHailes who tirelessly advocate and educate for women with PCOS and enroll the help of PCOS Experts such as @PCOSNutrtion @PCOSDiva @Tina_PCOSHelp @londonhypnosis and @IVF_MD to help bridge the gap between patients, professionals, media and the public at large.  There is also an initiative to raise #PCOS Awareness with #retweets on Twitter as part of the #OneMillion4PCOS Campaign which can be found be visiting @PCOSgurl on twitterThere are already over 1.6k retweets and 650 likes but it is just the beginning.....

#Retweet the initiative
https://twitter.com/PCOSGurl/status/701755862382092290?s=09

PCOS Awareness has to happen now to ensure women and girls do not have to go through another day, month or year of silent suffering..... Please join the PCOS Community in learning more about this syndrome, make your voice matter for millions of women worldwide who only ask that people to realize Why PCOS Matters.