The #PCOS Path – A Journey with Polycystic Ovary Syndrome

Below, Polycystic Ovary Syndrome Health Activist, Ashley, recounts her journey with PCOS. She will also be hosting a Twitter chat on 12/29  at 7pm EST.

 

pcos blog

 

At age 13 my biggest concerns were who had a crush on me, what was fashion forward and how I was going to spend my allowance. Little did I know, very soon I was going to be dealing with a life long syndrome know as PCOS or Polycystic Ovary Syndrome.

What PCOS is and what it does to women who have it is difficult to explain, as the symptoms vary from woman to woman. It is however, classified as an endocrine disorder, which may confuse many with the name Polycystic Ovary Syndrome. PCOS received its name because many women with the syndrome were presenting with cysts on the ovaries that looked like a pearl necklace!  It is however, not a gynecological issue, although it is the leading cause of infertility in women!  Due to the hormonal imbalances including excess androgens (male hormones) some of the more prevalent symptoms include; Acne, excess weight and belly fat, excess facial and body hair, lack of menstruation and lack of ovulation.

When I had begun my menstrual cycle, I had noticed menstrual irregularities that were fairly significant.  I would go long periods of three to six months without a menstrual cycle and then when I would have one, the pain from cramps and the menstruation itself were almost unbearable. At the time the OBGYN I was taken to said many girls combat menstrual irregularities at puberty and some need help so, at age 13 I was put on birth control pills without further testing, explanation, or guidance, and remained on them through my late twenties.  While the birth control pills seemed to help menstrual irregularities, I was still battling acne, excess facial and body hair and weight control issues. The symptoms however, were alleviated when I enrolled in a weight loss camp and was able to take off 60 pounds. In the years to follow many of the symptoms seemed to be under control and a minor irritant.

It was not until I turned 29 years old, after over 10 years of being on BCPs I went off them to start a family. Within a three-month period, I gained over 100 pounds, had adult acne and noticed a significant increase in facial hair. On top of this, I was not getting a menstrual cycle and was not pregnant. I immediately started seeking help starting with my GP who insisted I was over eating as a result of anxiety in trying to get pregnant.

I moved on to two more doctors who fell in line with this initial theory! I kept explaining I did not change any of my habits it was not due to anxiety! Finally, I made one more appointment with a young doctor and in opening I said I have been to multiple doctors and have told the story I’m about to tell you numerous times, I figured one more time isn’t going to hurt. After listening to my story his eyes became wide and he said hang on one minute and walked out of the room. When he returned he had a text book from school in hand and said to me I think this is what you are dealing with and opened to a page of his book that described polycystic ovary syndrome PCOS. He then informed me he did not know much about the syndrome but he would work with me to learn and help me get answers.

At the time I was diagnosed, I knew nothing about PCOS, I thought it was some rare disease that would affect my chances of loosing weight and having children the rest of my life. It was not until I accepted that I was the one in control of my destiny with PCOS that things changed. There were not many options to learn about the syndrome in 1999. By chance I came across what was then the premiere organization for PCOS, The Polycystic Ovarian Syndrome Association (PCOSA). At last I had found resources and women who understood what I was going through and immediately was on a path to self-education, volunteerism and what would turn out to be over 15 years of advocacy for PCOS with and for the PCOS Community!

Through further research I found The PCOS Center in Philadelphia run by Dr. Katherine Sherif, which offered a multidisciplinary approach to the treatment of PCOS. As an alternative to just taking medications, I was taught that lifestyle changes incorporating diet and exercise were key in controlling the symptoms. As I learned more I incorporated a low carb, low sugar and high protein diet which changed my life completely! It has been a long path and I have not finished my journey but, as of today, I have two children and have lost over 130 pounds as a result of making the necessary changes in my life to get healthy.

During this journey I have realized that 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.  This has lead me to my many years of advocacy and the following message which has become my PCOS Mantra…..

 

1. Knowledge….

Knowledge is power. The 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.

 

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.

 

3. Acceptance…

Many women with PCOS have difficulty accepting PCOS because they feel different, ashamed and set apart from what is considered to be normal due to the physical symptoms such as acne and excess facial hair. But, when we think about it, what is normal? You have the ability to overcome! As with anything else in life, you learn, you research and you fight!!!!

Because PCOS can cause so many physical and emotional complications, it is important for early detection, treatment and support, especially during teenage years. I started showing signs at a very young age and went undiagnosed for many years. As a young girl, it was very hard when doctor after doctor kept telling me nothing was wrong. Now, I know all the symptoms together equal PCOS and want to make sure others are able to be on the path to better health with this syndrome as early in their lives as possible!

Through continued advocacy and activism women, their families and supporters will be given a voice, a strong voice that will hopefully inspire and change movement and outreach among our community, health care providers and the media for more PCOS Awareness!

 

 


 

Author Background:

Ashley Levinson has worked diligently with the PCOS Community over the past fifteen years, starting in 2000 as The PCOS Chat moderator on About.Com’s Infertility Boards. Shortly after she created PCOS Pals, a now sprawling Yahoo community! Ashley was executive director for PCOSA from 2000-2004 and served as an Advisory Board Member to PCOStrategies 2003-2004, PCOS Coordinator at Drexel PCOS Center from 2004-2007 and was the founder and COO of Project PCOS from 2006-2008 Ashley continues to advocate for better treatment and awareness for PCOS with the creation of The Facebook Groups Pearls of Wisdom for PCOS and Project PCOS, she has handles on Twitter and Instagram, as well as an online PCOS Awareness Petition created in November with close to 3000 signatures and has made appearances to raise PCOS awareness including – Discovery Health Channel – Mystery Diagnosis, The 10!  Show on WCAU Philadelphia, Livin La Vida Low Carb Blog, Fox News, Gloucester County Times, Fertility Chef Blog, Woman’s World Magazine, Pocono Record, KMAN Radio and PCOS Today Magazine, as well others. She was also named a top ten finalist for Glamour Magazine’s Woman of the Year in 2008 for her PCOS Advocacy.

 

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