Thursday, January 30, 2014

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

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