Hello, my name is Eileen Bates. I have suffered from constant weight gain, never had a normal period, always had unwanted facial hair, constant acne issues, a ring of cysts around both ovaries, never had success with medicine given to treat PCOS, went through painful injectables and failed IVF attempts, miscarried my first child, lost my identical twin boys at 19 weeks, and after all this… it took a sore throat to tell me what I really had. After seventeen years of struggling with various hormonal issues, I finally diagnosed myself with Non-Classical Congenital Adrenal Hyperplasia (NCCAH or NCAH).  I never had ANY doctor even mention this to me and I had been going to one of the leading reproductive endocrinologists in the country for over six years.

I was scheduled to sing at a summer intensive in NYC and felt terribly sick the week before.  I went to my family doctor and told her how nervous and upset I was because I had this important singing event.  She gave me an antibiotic and a week of prednisone.  I had never been on a steroid for a full 7 days.  To my surprise, I felt energetic and noticed that I lost four pounds of fluid weight.  I tend to hold water in my feet and ankles which have prevented me from being able to walk comfortably for years.  As I looked down at my ankles, I saw how much they had shrunk.  I also started feeling “flutters” in my ovaries. A big red flag went up in my head.  I thought to myself…Why am I losing weight when a side effect of prednisone is gaining weight???  I started Googling prednisone and PCOS…nothing, totally unrelated. After a week of searching, I finally stumbled across an article stating that a common misdiagnosis for PCOS is NCCAH and it is treated with a low dose steroid.  As I continued to read the article, tears were streaming down my face because it was at that moment when I just KNEW this was the underlying issue I’ve always had.  The most common ethnic group that this affects is Ashkenazi Jews (Eastern European Jewish) and my father is from that ethnicity.  Also at high risk are Italian and Hispanic/Latino.

My next step was to go back to my family doctor with all the pages from the internet in hand.  I showed her the name of the DNA test that I needed and with uncertainty she wrote it down on a script.  Two weeks later, my test comes back POSITIVE revealing the common V281L mutation for NCCAH.  Finally an answer!!! I am now going to document my journey of change on this website. I hope and pray that I can help people get a proper diagnosis.

Soon I should start my medicine and within 3 months may have full reproductivity back and in 36 months, completely symptom free…facial hair included!!!

If interested, please follow my progress with my video blog.

Feel free to ask me questions about NCCAH testing, treatment, or outlook.
eileen@notpcos.com

VLOG: https://www.youtube.com/user/notpcos/videos

PLEASE TALK TO YOUR DOCTOR AND WITH A SIMPLE BLOOD DNA TEST, RULE OUT NCCAH FIRST, ESPECIALLY IF YOU HAVE BEEN DIAGNOSED WITH PCOS…AND DO NOT LET THE BEWILDERED LOOKS OR SHRUGGING SHOULDERS OF YOUR DOCTOR STAND IN YOUR WAY!!!