Wednesday, April 6, 2016

#PCOS a Systemic Breakdown

Author: Ashley Levinson
Twitter: @PCOSgurl
April 5, 2016 – Mantua, New Jersey



Many are faced with a conundrum when learning and dealing with PCOS which is; What am I really dealing with?

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. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women in the United States today including heart disease, diabetes, endometrial cancer and stroke.

Even though #PCOS was first recognized over 75 years ago, we are no closer to understanding its cause or its treatment.  There is no singular test that can conclude whether a woman or girl has the syndrome instead it is a collection of symptoms, history and diagnostic testing. As a result once a doctor concludes it is Polycystic Ovary Syndrome, they manage the symptoms to prevent long-term health consequences such as infertility, diabetes and heart disease.

So by now you are probably wondering if you do not already know


What is Polycystic Ovary Syndrome (#PCOS)?

Polycystic Ovary Syndrome (PCOS) is the most common hormonal problem in women. It is also a metabolic disorder that affects several body systems and can cause significant long-term health consequences. PCOS is often characterized by enlarged ovaries, with multiple small painless cysts or follicles, that form in the ovary. Two other key features of PCOS are production of excess androgens (male sex hormones) and anovulation (the failure to ovulate properly), which makes PCOS the leading cause of infertility.


So How does PCOS Affect my Body?

PCOS or Polycystic Ovary Syndrome got its name because many women with PCOS have changes in their ovaries including small cysts that surround the ovary looking as if it is a pearl necklace on ultra sounds.  However PCOS is not a gynecological problem, rather an endocrine disorder that changes how your body reacts to some hormones, like insulin. The body uses insulin to turn food, especially sugar, into energy with #PCOS insulin sensitivity and insulin resistance can make it harder to process insulin. High levels of insulin cause more androgens (male hormones) to be made in a woman's body. With higher levels of androgens, which all women have, a woman can show some male signs like acne, male patterned baldness or extra hair on the face or body.

Other issues that can wreak havoc on women with PCOS are weight gain, especially around the mid-section (apple shape) and infertility as hormone changes can keep a woman from having an ovum (egg) released from her ovary every month which can cause her to skip periods (amenorreah) or have problems getting pregnant.  As insulin increases in a woman with this syndrome it can also lend itself to (acathosis nigracans) or darkened skin in the neck, armpits and skin tags.



So Why is getting diagnosed so difficult?

There are two reasons why so many women with PCOS are undiagnosed for years:

1. Some doctors may think that girls will "grow out" of irregular periods, not recognizing that it is not normal to have irregular periods

2. Other doctors, mostly gynecologists, KNOW that a woman or girl has PCOS, but fail to mention or discuss it with their patients

PCOS is diagnosed by taking a history, doing a physical exam, getting blood tests, and possibly getting an ultrasound. Of these 4 things, the most important is a history of irregular periods: if you tell a doctor your periods are irregular, chances are nearly 100% that you have PCOS.

The number one, two and three warning signs of PCOS are irregular periods, irregular periods, and irregular periods!

Also: trouble conceiving.


What treatments are available for PCOS?

PCOS is probably multifactorial, and has different causes in different women. However, in most women, the insulin levels are very high. The high insulin levels drive the ovary to produce too much testosterone. So in most women, the key is to lower the insulin levels, which in turn will lower the testosterone. The most effective ways to lower insulin are:

1. exercise, both aerobic and weight-training
2. avoid simple carbohydrates. Period.
3. take insulin-lowering medications to help make exercise and diet more effective


What is being done to learn more about treatment and diagnosis for PCOS?

Although the etiology of the syndrome is unclear, there are currently markers being researched. A forum in 2013 outlined the possible causes and effects of #PCOS and is calling for government recognition and research into these areas. 

Potential areas of further research activity include the analysis of predisposing conditions that increase the risk of PCOS, particularly genetic background and environmental factors, such as endocrine disruptors and lifestyle


PCOS Forum: Research in Polycystic Ovary Syndrome Today and Tomorrow



In closing PCOS affects various women in various ways however it should never be left unchecked! Even if you don't want children, it is essential to treat PCOS. The high insulin and testosterone lead to high blood pressure, abnormal cholesterol and eventually diabetes. These are the big three conditions that lead to heart disease.

If you suspect you or someone you knows has PCOS be sure to speak with a PCOS friendly doctor and stay informed. Information is key to living a healthier life with any condition you face!


A Quick #PCOS Overview with #PCOSgurl

Ashley Levinson

Twitter: @PCOSgurl



PCOS Overview


PCOS 101
  • Is also known as Stein-Leventhal Syndrome or Polycystic Ovary Disease (PCOD).
  • Affects an estimated 6-10% of all women and most don't even know they have it.
  • Is treatable, but not curable, by medications, changes in diet and exercise.
  • Is one of the leading causes of infertility in Women.
  • Has been identified for 75 years and they still aren't sure what causes it.
  • PCOS is generally considered a syndrome rather than a disease (though it is sometimes called Polycystic Ovary Disease) because it manifests itself through a group of signs and symptoms that can occur in any combination, rather than having one known cause or presentation.
  • There is no cure for PCOS. It is a condition that is managed, rather than cured.
  • Affects far more than just reproduction.
  • At this time, there is no single definitive test for PCOS. This is because no exact cause of PCOS has been established yet. This is why there is a wide-range of opinion on how to diagnose and treat PCOS.
  • Treatment of the symptoms of PCOS can help reduce risks of future health problems.
  • PCOS is associated with increased risk for endometrial hyperplasia, endometrial cancer, insulin resistance, type II diabetes, high blood pressure, high cholesterol, and heart disease.
  • IT IS NOT just a cosmetic problem.
  • Although up to 15 million women in the U.S. alone have PCOS, less than half know they have it!


Can include the following symptoms:

  •       Irregular or absent menses
  •       Numerous cysts on the ovaries in many, but not all, cases
  •      High blood pressure
  •       Acne
  •      Elevated insulin levels, Insulin Resistance, or Diabetes
  •   Infertility
  •    Excess hair on the face and body
  •  Thinning of the scalp hair (alopecia)
  •  Weight Problems or obesity that is centered around midsection


What a Polycystic Ovary looks like:

The many cysts in a polycystic ovary are follicles that have matured but, due to abnormal hormone levels, were never released. In a normal ovary, a single egg develops and is released each month.



So just what is #PCOS???
Twitter: @PCOSgurl

What PCOS (polycystic ovary syndrome) 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. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women in the United States today including heart disease, diabetes, endometrial cancer and stroke.

Even though #PCOS was first recognized over 75 years ago, we are no closer to understanding its cause or its treatment. There is no singular test that can conclude whether a woman or girl has the syndrome instead it is a collection of symptoms, history and diagnostic testing. As a result once a doctor concludes it is Polycystic Ovary Syndrome, they manage the symptoms to prevent long-term health consequences such as infertility, diabetes and heart disease.



So by now you are probably wondering if you do not already know,

What is Polycystic Ovary Syndrome (#PCOS)?

Polycystic Ovary Syndrome (PCOS) is the most common hormonal problem in women. It is also a metabolic disorder that affects several body systems and can cause significant long-term health consequences. PCOS is often characterized by enlarged ovaries, with multiple small painless cysts or follicles, that form in the ovary. Two other key features of PCOS are production of excess androgens (male sex hormones) and anovulation (the failure to ovulate properly), which makes PCOS the leading cause of infertility.



So How does PCOS Affect my Body?

PCOS or Polycystic Ovary Syndrome got its name because many women with PCOS have changes in their ovaries including small cysts that surround the ovary looking as if it is a pearl necklace on ultra sounds. However PCOS is not a gynecological problem, rather an endocrine disorder that changes how your body reacts to some hormones, like insulin. The body uses insulin to turn food, especially sugar, into energy with #PCOS insulin sensitivity and insulin resistance can make it harder to process insulin. High levels of insulin cause more androgens (male hormones) to be made in a woman's body. With higher levels of androgens, which all women have, a woman can show some male signs like acne, male patterned baldness or extra hair on the face or body.

Other issues that can wreak havoc on women with PCOS are weight gain, especially around the mid-section (apple shape) and infertility as hormone changes can keep a woman from having an ovum (egg) released from her ovary every month which can cause her to skip periods (amenorreah) or have problems getting pregnant. As insulin increases in a woman with this syndrome it can also lend itself to (acathosis nigracans) or darkened skin in the neck, armpits and skin tags.



So Why is getting diagnosed so difficult?

There are two reasons why so many women with PCOS are undiagnosed for years:

1. Some doctors may think that girls will "grow out" of irregular periods, not recognizing that it is not normal to have irregular periods

2. Other doctors, mostly gynecologists, KNOW that a woman or girl has PCOS, but fail to mention or discuss it with their patients





PCOS is diagnosed by taking a history, doing a physical exam, getting blood tests, and possibly getting an ultrasound. Of these 4 things, the most important is a history of irregular periods: if you tell a doctor your periods are irregular, chances are nearly 100% that you have PCOS.

The number one, two and three warning signs of PCOS are irregular periods, irregular periods, and irregular periods! Also: trouble conceiving.


What treatments are available for PCOS?

PCOS is probably multifactorial, and has different causes in different women. However, in most women, the insulin levels are very high. The high insulin levels drive the ovary to produce too much testosterone. So in most women, the key is to lower the insulin levels, which in turn will lower the testosterone. The most effective ways to lower insulin are:

1. exercise, both aerobic and weight-training
2. avoid simple carbohydrates. Period.
3. take insulin-lowering medications to help make exercise and diet more effective


What is being done to learn more about treatment and diagnosis for PCOS?

Although the etiology of the syndrome is unclear, there are currently markers being researched. A forum in 2013 outlined the possible causes and effects of #PCOS and is calling for government recognition and research into these areas.

Potential areas of further research activity include the analysis of predisposing conditions that increase the risk of PCOS, particularly genetic background and environmental factors, such as endocrine disruptors and lifestyle

PCOS Forum: Research in Polycystic Ovary Syndrome Today and Tomorrow
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3742326/

PCOS affects various women in various ways however it should never be left unchecked! Even if you don't want children, it is essential to treat PCOS. The high insulin and testosterone lead to high blood pressure, abnormal cholesterol and eventually diabetes. These are the big three conditions that lead to heart disease.

So now that you now what it is what can you do to help raise Awareness?

1. You can very simply help with using the #hashtag  #OneMillion4PCOS on twitter and facebook

2. #Retweet the #OneMillion4PCOS initiative

You can join the growing twitter users supporting the initiative with over 1,7k #retweets and 650 likes the campaign is starting to take off!

You can join now,,,

https://twitter.com/PCOSGurl/status/701755862382092290

3. Spread the word

Invite your friends and families to share this great initiative...
As 1 in 10 women are affected by the syndrome yo most likely know someone with #PCOS
If you suspect you or someone you knows has PCOS be sure to speak with a PCOS friendly doctor and stay informed. Information is key to living a healthier life with any condition you face!
Why #PCOS Matters







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 symtpoms such as; obesity, hyperinsulinemina and irregular menstrual cycles which are all indicators and precursors to the forementioned 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 States  being 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 - " #PCOSMatters  because 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 quiality with all it's symptoms."

Missy Ruttencutter - "You see PCOS daily without even recognizing it. It's the weight that's carried, the embarassing dark patches, the uncontrolable 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 twitter  There 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.