Ashley Levinson On Her 29-Year Journey With PCOS (Polycystic Ovarian Syndrome)

Ashley Levinson (@PCOSGurl) has lived with PCOS for 29 years!

For many women’s health advocates, September is Polycystic Ovarian Syndrome (PCOS) Awareness Month.  Today’s blog post is my short interview with PCOS health leader, Ashley Levinson, CMA, CST followed by a guest blog post written by Ashley.  Ashley discusses the symptoms of this disease that affects 1 in 10 women of child bearing age and how you can help us (deadline to send short email or fax to your Representative is September 26script here)!  I myself have had this disease for 15 years; Ashley has lived with PCOS for 29 years.  Many of the struggles Ashley has experienced apply to a wide variety of invisible illnesses and/or chronic illnesses.

MY INTERVIEW WITH ASHLEY

JG: How old are you when you were diagnosed?

AL:  I was unofficially diagnosed at age 13.  I was having menstrual irregularities and my mom took me to an OBGYN who put me on birth control pills and said stay on them and when your ready to have kids will address things further.  Move forward to age 29 after years of strange symptoms and weight issues coming and going I went off the birth control pills to start a family. Within three months I gained 100 pounds, noticed severe skin issues, was not getting a period and was not pregnant.  It took me a year and 3 doctors to finally find a diagnosis and begin my journey into figuring out what it was I was dealing with.

Many of us are often ridiculed by people saying you’re lazy, you just need to loose weight, its not that serious.  For people to understand chronic illnesses they have to listen, not assume…behind each smile is a person who deserves dignity, respect and support.–Ashley Levinson

JG: How old are you now?

AL:  I am 46 years old and have spent the better part of my life fighting the symptoms of PCOS, understanding PCOS and advocating on behalf of women like me who suffered silently.

JG:  What is the hardest part of having PCOS?

AL:  The hardest part for me has always been justifying what I have is real.  People who do not live it, often have a hard time understanding it and relating to it.  Many of us are often ridiculed by people saying you’re lazy, you just need to loose weight, its not that serious.  For people to understand chronic illnesses they have to listen, not assume, and take in to account that behind each smile is a person who deserves dignity, respect and support.

JG:  What is the best way we can help? 

AL:  The best way to help is to get involved.  Join online support communities on Facebook, Twitter and Instagram. Join organizations like PCOS Challenge who have made it their mission to to educate, support and advocate for women and girls with the syndrome and most importantly..  TALK ABOUT IT!!!  We can’t expect others to understand and help if they don’t know how or why.

“WHY PCOS MATTERS” (Guest blog article by Ashley Levinson AKA “@PCOSgurl“)

Many people have read my posts about #PCOS but I often wonder if they really truly understand what life with #PCOS is like for those living with this syndrome.

Trapped Inside Glass Box
The best way I can explain it to someone who is not living with it is it’s like being in a glass box….. sure people can see you but they can’t hear you, they can’t feel what you feel and they can often put you on a shelf and invalidate you if they can’t understand.

The truth is, many of us feel trapped inside this glass box, often screaming.  Trapped in bodies dealing with symptoms many can’t see and the symptoms that are seen often make us feel like we are being judged, like it is somehow our doing our fault yet we can not escape it

Symptoms of PCOS
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, 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.

An Underfunded Disease

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.

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!

Please send a short email or fax (template provided)! #PCOS

AWARENESS BEGINS WITH YOU!  SIGN BEFORE 09/26/17

On September 27, PCOS Challenge will introduce a resolution to The U.S House of Representatives designating September as PCOS Awareness Month. There will also be a Congressional briefing in which PCOS community representatives, organizations, medical professionals will address legislators!

For congress to know this is important, they need to hear from you, your friends, your families…their constiuents!

PCOS Resolution 495–Send a short email And Tweet

http://www.pcoschallenge.org/prioritize-pcos

To support Resolution 495, you can write a short email and/or tweet your Representative using this template.

You can also be part of this monumental day by donating you selfie to be with community leaders in Washington D.C.

Whether it’s $1 – $100 every donation makes a difference and gives you a chance to stand with us!

Help make history happen, donate today and submit your selfie….

https://www.gofundme.com/selfies-for-pcos

Lastly, you can run/walk/donate to be part of The PCOSChallenge.org Bolt for PCOS 5K!

 

 

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

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