The Voices of PCOS!!!!

Back in 2006, when I first recorded for this episode.. I had no idea that what I was doing would be the start of revolutionizing how the public views Polycystic Ovary Syndrome (PCOS)  There are so many voices that need to be heard....

PCOS on Mystery Diagnosis 1 of 3
http://www.youtube.com/watch?v=hYsunsgZxNk&noredirect=1

PCOS on Mystery Diagnosis 2 of 3
http://www.youtube.com/watch?v=13m4fLmUmvc

PCOS on Mystery Diagnosis 3 of 3
http://www.youtube.com/watch?v=Sa--m-MQtqw

Again mine is not the only story that needs to be heard and I thank the following ladies who were brave enough to share their stories with me to help the world understand the physical and emotional complications associated with PCOS...

Not your prize winning loaf of bread

I just got out of the shower. I wish I could have stayed longer; I just couldn’t scrub the filth off me. I scrubbed so hard that my skin was red and used the hottest water until that also ran out. I just can’t shake this feeling today. You know what that kind of feeling is; the feeling of filth from the inside out.

I am very intelligent, uneducated woman with a life that has so many hopes and sorrows, 

twists and turns, and sense of confusion of who I really am. I look at myself and say “Is this the man in me or the woman”? The man has often been considered the stronger of the sexes and the woman of the weaker.  I am mentally ill; this is the woman of me. I still hold down a part time job despite the fact that sometimes I feel it will be the death of me; that is the man of me. I haven’t had an orgasm from a man in years; that is the woman of me. I self stimulate myself with the eagerness and frustration that could move mountains; that is the man of me. I am infertile; is this the woman or the man of me? Once, my husband and I were shooting off fireworks and the mosquitos were terrible. I complained so much during that night that my husband told me; “you know, sometimes I forget that you are a woman.” That night I realized, it’s just not me that feels that way.

PCOS covers so many complex issues besides infertility. I mean, if you look at it this way, your brain sends these messages, in the form of hormones to do so many things in life. For example, you drink too much alcohol; your brain sends this message to your stomach to vomit it back up because you just poisoned yourself to the point of coma. Your brain has this plan A and then B of sorts. Just like this scenario, you are cold, so you shiver to the point of you thinking you’re going to break your back. Your brain is trying not to let you die. But, here is the kicker folks, with PCOS, your brain doesn’t send the messages it should. As for me, with PCOS, my brain doesn’t tell me to ovulate. So my body produces the eggs and never releases them to be fertilized. As they sit there, they become bigger and bigger and bigger until they are worthless cysts. Those fuckers burst and you have pain that becomes imaginable to the normal person.  And to top that all off, PCOS just doesn’t do only that, you have depression, weight gain that makes you waddle, problems with cholesterol, as well as many other things. PCOS sucks!

As for me, I can write a 20 page article on how PCOS sucks and how I wish I had cancer instead (cancer can be cured). The man of me just wants to let you know that PCOS is out there and it affects more women that you can imagine.  So the next fat chick you see in public probably didn’t get that way because she ate too many Doritos, it’s because she has a serious medical condition that there is no cure for.  All I want is for you to know, and for you to understand.

SAM in KANSAS

I was diagnosed with PCOS when I was 18 after 5 years of pain/irregular periods. In 2008 I had a surgery to remove a cyst. I have all the classic PCOS symptoms weight gain, acne, skin tags, irregular periods, cysts, hormone levels off, migraines, kidney problems

The worst symptom/pain is knowing that I may never be able to get pregnant. I am an infant and toddler teacher so working with babies and knowing I might have my own is hard. I was recently diagnosed with Stage 2 kidney disease. PCOS is something emotional and physical that I deal with everyday. I also suffer from depression. I also have a cousin with PCOS on my dads side of the family so there could be a genetic link.

Lynae Knowles


I was officially diagnosed with pcos in July of 2009 when I had to have emergency surgery to remove an ectopic pregnancy, I had symptoms long before then, but was to embarrassed to talk to anyone about it, I had been growing facial and neck hair since I was 16...needless to say, even though I shaved daily, it was still noticed and was teased constantly...I just tried to ignore it, but would often dream of cutting the skin off my face and neck, or burning it off. I looked and felt like a freak of nature, a hideous beast is what I would refer to myself as, I didn't know why it was happening to me, there still have been numerous people that teased, bullied, and publicly humiliated me because of the facial hair...former friends and relationships...since the surgery I have done extensive research, accepted...to an extent...what I must deal with, when I realized that getting pregnant might not be a possibility I did as much research as I could, I refused to accept that my dream of becoming a mother was shattered....I began taking vitamins, working out, eating right, and taking ovulation tests every day...within 4 months I was pregnant! Than without trying, 2 yrs later I was pregnant again! Now the biggest issue is the weight loss...it's an everyday battle, but dammit it's a battle I am going to win! I have fought the weight battle for 20 yrs, I refuse to stop! Also, like many women with pcos I very rarely have a period...I'll get 4 on a "good year", but honestly, I'm not complaining!

Colleen Arney


I'm 16 years old going on 17 and i have been diagnosed with PCOS since i was 14...i have tried many different medications as I'm sick all the time and no medications really help. It seems to me that the only time i can lose weight is when I'm constantly having diarrhea. My sister is 20 going to be 21 and was diagnosed with it when she was 16 i believe and she has been having a tough time losing weight. We both are constantly depressed from it. We don't know who all has had it in our family and my grandma has passed away from ovarian cancer in 2009 and my mom is having trouble with her ovaries. I would be more than willing to share my story...this is a huge thing as i get made fun of for it and my.little sister thinks it's a joke. I would like to help 
in any way and know.more!

Makayla Seidl

PCOS Petition is gaining signatures and recognition!

Although up to 10% of women worldwide have PCOS or Polycystic Ovary Syndrome, it is estimated less than half know they have it.

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 frequently associated with decreased sensitivity to insulin (i.e., insulin resistance), which in turn may lead to an increased risk of adult on-set diabetes mellitus and cardiovascular disease. Furthermore, if left untreated, PCOS can lead to complications such as endometrial cancer and hysterectomy of the ovaries and uterus. Additionally,PCOS increases a woman's risk of heart attack and stroke because it increases cholesterol and blood pressure. It is also the leading cause of infertility in women.

It is estimated that approximately five to ten percent of women may have PCOS, with some researchers suggesting that the number is as high as ten percent.

So, if PCOS is so common, why is it so difficult to diagnose and where is the awareness for this serious condition?

"Part of the problem, then and now, is that the PCOS symptoms manifest themselves in different ways," says PCOS Awareness Advocate Ashley Levinson "In fact, not all affected women have polycystic ovaries."

Ashley's desire to spread awareness stems from what she and many other women with PCOS have gone through, years without the proper diagnosis and not knowing what was truly wrong. Thousands of women from around the country have experienced the same lack of response from the medical community with little understanding of PCOS and the best way to treat it.

Many medical professionals still view the syndrome as a gynecological problem and only address the syndrome when issues of infertility arise. As a result, single women, older women and those not trying to get pregnant often still have little chance of being diagnosed.

Prior to a few years ago, PCOS had been largely misunderstood and rarely diagnosed. "The information to make a proper diagnosis just wasn't there," said Ashley. "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," says Ashley.

Women with PCOS can have any combination of symptoms of varying severity. As a result of this, it is estimated less than half of the women who have PCOS, know they have it. It is because of this many feel 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 and to ensure they are educated on how to live a healthier life with this syndrome. "I hope and pray daily that doctors will get more aggressive with treatment, ladies will educate themselves better, and insurance companies will give preventative treatment instead of waiting until a woman needs drastic measures to regain her life," says Sarah Yocheved Goldstein from New York, a petition signer and PCOS Awareness Advocate.

The PCOS Treatment and Awareness Petition plans to empower the PCOS Community to speak very openly about their struggles, symptoms, and trials to overcome the illness, to help other women and girls understand the syndrome and seek the proper resources to help them manage their lives with PCOS. It hopes to be a driving force in changing the way the public, media and government view PCOS education, treatment and coverage for medical procedures, as a result of PCOS. Robin Brooks Radel, a woman living with PCOS agrees, "I'd like woman to know that PCOS exists and it can cause infertility, high blood pressure, heart disease, increased risk for some cancers, excess facial hair, hair loss, and diabetes I'd like woman to be educated and to pursue good health care. I'd like insurance companies to know that this is an endocrine disorder and therefore prevent them from denying treatment. I'd like my children to understand this disease, as it seems there is a hereditary link. I'd like doctors to understand that PCOS is not a fertility disorder, it is an endocrine disorder, and it can be treated. Maybe someday, it can be cured. Until that day, awareness is the most powerful weapon."

The petition can be found at the following:
http://www.petitiononline.com/pcosweb1/petition.html

The petition has grown to over 10,900 signatures, many with comments about the need for more awareness and how PCOS has personally affected their lives, their families and their friends. "It is my goal to reach a minimum of 1,000 signatures from each state.", says Ms. Levinson " If each person passes this along to everyone they know and stresses the importance of awareness for this condition, we should be able to do this."

Whether they reach their goal or not, one thing is for certain, Ms. Levinson-Sells and the PCOS Community will continue to be vocal proponents for PCOS Awareness until it becomes a known acronym!

FOR MORE ON PCOS FOLLOW ME ON TWITTER: @jerzgurlie

PCOS is no LOL Matter

Category

Health and Fitness » Womens Issues

Although pcos affects up to 10% of women worldwide less than half know they have it as standard diagnosis and understanding of this syndrome still remain a mystery.

Up to 10% of women and girls worldwide have polycystic ovary syndrome (PCOS), a complex hormonal disorder for which there is no cure. If left untreated PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cardiovascular disease, stroke and kidney problems. This means PCOS contributes to some of the leading causes of death and disability in women today.

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.
In 2000, I was diagnosed with a syndrome not many individuals, let alone doctors were aware of or well equipped to treat. While there have been strides in recognition, it still remains a conundrum for many...

There are still many unanswered questions. While there are many medical and physical implications with this syndrome the psychological stigmas such as being overweight, excess body hair, acne and infertility leave the most long lasting impressions on many women living with this condition today.. With more awareness and teaming with media outlets like yours, we can change perceptions of who these women are not simply lazy, who do not take care of themselves but, women who are battling the complications associated with this syndrome every day.

It is imperative these stories, studies, articles and coalitions be heard to bring awareness to what still remains today as a mystery syndrome for millions of women..
Many groups, organizations, professionals and advocates are now joining together to end the silence and make pcos a household name on Twitter @jerzgurlie @pcosflago @pcosaa @pcosnutrition @pcoschallenge

There is even a budding online petition with over 10,900 signatures and comments urging or legislators to recognize PCOS as a serious health concern and asks our government to remove it from NIH as a rare disorder as 1 in 10 women worldwide have it!

http://www.petitiononline.com/pcosweb1/petition.html

Keywords 

ovary syndrome pcos, concerns affecting women, syndrome pcos, women worldwide, body hair, affecting women

Author 

Ashley L Levinson
Twitter: @jerzgurlie