Friday, September 2, 2011

September is National PCOS Awareness Month

I wonder if I get a prize or something?  If I lived in Houston, I'd participate in the PCOS Awareness 5K on September 25th :)  Sadly, Charlotte has no PCOS Awareness race.  Maybe I'll start one (in all my free time).  

I was first diagnosed with Lean PCOS by Dr. Katz in February.  He told me at that time not to go home and google PCOS because I would read all sorts of things that would freak me out....he was right.  Like a good little patient I went home and immediately grabbed my computer and began reading about how PCOS women are usually obese (okay that hurt my feelngs...I know I'm about 5 lbs or so from my cheerleading weight, but I wouldn't ever consider myself obese), some have mustaches, horrible acne, male pattern baldness....ACK - I thought infertility was bad enough and now I have to worry about all of this craziness!?!?!?!?!  

After a few deep breaths and some common sense talk from The Italian, I started to calm down.  I do not, nor have I ever had a mustache, I've been blessed with pretty decent skin (most of the time) and he assured me that I was far from being obese.  I felt better however that did NOT stop me from continuing my internet research.  It is VERY hard to find information about LEAN PCOS on the internet - most studies and information that you find is related to obese or overweight women diagnosed as PCOS.  Us Lean PCOSer's are the forgotten soulcysters - even though 40% of all women diagnosed as PCOS are lean (ie at or below normal weight/BMI).   

It took several hours of searching, but I did find this post that helped to explain a lot to me.  I've included a few of the excerpts pertaining to Lean PCOS below with my comments in bold... 
  • For heavier women, PCOS occurs because of the excess production of male hormone, which results in the abnormal androgen/estrogen ratio. Thin women don’t really have excess androgen production. Instead, they typically have normal androgen levels. However, at one point in time their estrogen levels were low. 
    • (Estrogen comes from two places – the ovaries and the fat cell.) 
    • In young, thin athletic women with very low percent body fat, estrogen levels are low. 
    • The end result of this is that the androgen/estrogen ratio is altered just like that in the heavier women (the androgen level is normal but he estrogen level is low). 
    • The absolute levels are lower in the thin women, but the ratio is still altered. 
  • Two of the standard questions we ask are 
    • “What is the least you have weighed in your adult life?” and 
    • “were you an athlete?” 
  • We want to know if there was a time of low estrogen production that may have “set up” the pattern of PCOS. There is excellent evidence that once this ratio is altered, it sets up a pattern of functioning in the ovaries that will persist into adulthood, i.e., PCOS.  
This explains A LOT - 
  1. I was always a skinny minnie as a child.  I hated how boney my legs were...I could (and did) eat 10-12 Taco Bell crunchy tacos in one sitting and never gained an ounce.  
  2. I was in dance classes 4-6 days a week so that would definitely qualify as an athlete (no smart comments - unless you've spent 4-7 hours a day (after school mind you) in a leotard and tights in a dance studio, you are NOT allowed to begin to insinuate that dancers are not athletes - I've got a grand battement that will knock you across the room, so don't mess with me.).  
  3. Even going into adulthood, I have experienced times where my weight would drop near 100 lbs without any effort.  (I'm 5'7" so that is not a good or even remotely normal thing).  
So it would make sense that the patterns of me being a skinny, active child and also being far too light for my height at various points in my adulthood could have set up the pattern of PCOS in my body.  Don't know if this makes me feel better or worse that this could have been something that I did to myself.  The research continues....
  • PCOS can often occur in women with normal androgen levels and no evidence of hirsutism (excess hair growth).  Praise the Lord - no excess hair growth or mustaches for me!!!! 
  • Many thin women with PCOS exhibit only irregular periods or less than optimal ovulation.   True           
  • Unfortunately, clomiphene does not work very well in thin women with PCOS. The anti-estrogen effects are profound enough that although egg development and ovulation may occur, pregnancy will not. (This is just an observation, but women that experience side effects from clomiphene such as hot flashes will not conceive on clomiphene.)  Well that would have been handy dandy info to have had back in 2009 when my GYN/OB first started me on Clomid....
  • It is pretty clear that if pregnancy does not result within the first four cycles of clomiphene use, it probably is not going to – something else has to be tried.  85% of all clomiphene pregnancies occur within the first three months of treatment with clomiphene. After four months, very few additional pregnancies result.    My GYN/OB kept me on Clomiphene (aka Clomid) for nearly 9 months before I referred myself to REACH!  YIKES!
You can read the entire study here if you'd like.  Since I published my first post, I've had MANY acquaintances, friends and friends of friends who have reached out to share that they also have been diagnosed with Lean PCOS.  Knowledge is power.  If you have Lean PCOS and your doc has you on Clomid, find a new doc!  Dr. Katz put me on Letrozole (you can read more about it in the article) - Letrozoloe has been proven to be much more effective with women with Lean PCOS.  When dealing with infertility every second counts and to waste 9 months on a treatment that was not right for my body and would basically not work is very frustrating.  

So that is the end of today's lesson!  If any of you readers have been diagnosed and have found other info, please feel free to share by leaving a comment!  

By the way, I was checking my blog audience stats and noticed that I've developed a rather large following in "mulţumesc" my Romanian friends!  :)  

1 comment:

  1. Hey, this is a new perspective for lean PCOS for me.