Helping Others with PCOS

My doctor was able to diagnose me with PCOS without meeting me.  He was my mother's doctor and she expressed how frustrated I had gotten with weight gain and tiredness and no one being able to diagnose why.  He asked my mother a few simple questions.  They included:

When did I REALLY start struggling with weight? (Answer: 18)
Did I have a large chest? (Answer: YES!)
Did I struggle with acne and having abnormally hairy face? (Answer: YES!)
Was I cycling often? (Answer: NO)

She answered his questions and he responded with a "GET HER IN HERE NOW."  I really believe that by going to him at such a young age and being diagnosed immediately is part of the reason I have done better at coping with the disease than others.  Also, I was diagnosed at more of a "prime time" in my life, before I started really struggling with the elements that age also brings like natural weight gain and whatnot.  I have heard many people don't find out their condition until they try to conceive and can't, or those that don't ever try to conceive and don't find out until they are experiencing pre-diabetic problems, high blood pressure and other health concerns that go along with PCOS.

So, this has become a mission in my life.  I feel that those of us that suffer from PCOS should not be silent.  No one wants to discuss menstruation cycles, weight struggles, having a hairy face (hirsutism), and so forth.  I sure didn't.  I am a very private person.  I dread "the birds and the bees" discussion that I will be having with my daughter when the time is right.  But, here is the thing, I have to share my story.  I now realize that if I don't, I can't help anyone else that might not know they are struggling, learn to cope with the disease. 

I wasn't open about my PCOS until I found out one of my longtime friends was also fighting with it.  It breaks my heart because IF I had been open about my problems, she may have been able to be diagnosed 5 years earlier.  And for those of us with PCOS, knowledge of what is causing the problem is the key to finding a solution, or at least striving for a solution.  Am I going to go into a group of friends and family and say, "Hey, I have this thing that makes me not cycle, be fat, makes me hairy and you are going to listen to me!"?  No, I won't do that, but if I know someone who has similar symptoms and issues, I will tell them, "Ask your doctor about PCOS."  I would rather be wrong about my suspicions with another than not let someone know PCOS exists.  I have also notified some of my cousins about PCOS and that if they begin to exhibit the symptoms, to see a doctor.  I plan on talking to the rest of my cousins as well.

Secondly, for those of us that suffer from PCOS and aim to have children, or already do have children, TALK TO YOUR DOCTOR NOW about a plan for your female children.  My daughter was 1 year-old when I first talked to my doctor about what her chances of fighting the same battle would be.  My sister (in the genetics field) and I figured out that because I suffer from PCOS and my mother-in-law LIKELY suffers from PCOS, that my daughter would roughly have an 87.5% chance of also suffering from PCOS (this statistic is NOT a result of any scientific study, just us taking the facts we knew and trying to come up with a logical result).  Now, I am praying she doesn't, but I am already trying to help her learn to make choices that might help her down the line.  She will go to a gynecologist when she first reaches her teenage years---not a fun thing for anyone that age, but it is something that is a must.  She will likely be put on some form of birth control as a teenager so that it "shuts" her ovaries off until she needs them for reproduction.  I also have taught her to make healthy eating decisions and enjoy exercise.  Most nights during the week, our family goes for walks together and we hike often in the summer.  So, while she may not have PCOS, I feel it is my responsibility to help her before it becomes an issue.

So, this blog is my way of trying to reach others.  My doctor feels that PCOS sufferers often "diagnose" up to 5 others with PCOS during their lifetime.  Let's make it known that we are not going to give up and are there for others who also might suffer!

Please note: I am not a medical doctor nor am I an expert on PCOS nor do I pretend to be.  Everything I write is from personal experience and based on my research.  Please contact your doctor before you change your diet or exercise intensity or falter from your treatment program.