Wednesday, February 1, 2012

Dealing with PCOS

If you Google "PCOS" or Polycystic Ovary Syndrome, a significant number of very good information sources come back.  Mayo Clinic, Wikipedia, PubMed Health, WebMD, Women's, Polycystic Ovarian Syndrome Association, and on and on.  Most of the results are fantastic sources for scientific causes and symptoms of the "disease" that effects up to 18% of women of child-bearing age.  You might see a similarity in how PCOS is treated by doctors and what a woman can do on her own to help make the symptoms less troublesome.  What you DON'T see is the effect that having this extremely common syndrome has on the women that deal with PCOS every day.

If you continue down your list of Google results, you'll see websites such as Soulcysters and other websites that offer women with PCOS somewhere to go to vent about troubles and get support from other women who are in the same situation.  These message boards and mailing lists are invaluable to  those of us who struggle every day with the often embarrassing symptoms of PCOS.  There is a bias in general society that if you have trouble with weight gain (or weight loss), or excess hair, or any of the other very visible symptoms of PCOS that it is entirely within your control to change them.  While there are things that we can do that will help keep symptoms in check, if the hormones in our bodies cause strange things to happen, there's little we can do about it. 

I was almost entirely asymptomatic until I was in my 20s, when hair on my face started darkening and growing thicker.  I started struggling with breakouts and dandruff, which was a new thing for me, as I'd had clear skin through most of my teen years.  I'd always had irregular periods, but birth control pills helped even things out there.  In school, I had always been a little overweight, but in my 20s I started to put on weight that no amount of dieting or exercise could keep off.  I believed that all this was caused by something I had full control over and I started to hate myself for not being strong enough to combat these changes in my body.  I thought that if I worked out harder or ate less, I could lose that extra weight.  I tried bleaching and even shaving the hair on my upper lip... it was mortifying.

When I was diagnosed with Polycystic Ovarian Syndrome, it actually came as a relief at first.  My body was working against me.  There wasn't anything that I had done to cause these embarrassing things, they were symptoms!  Then the reality hit me.  I was almost 30 and married to a wonderful man with whom I wanted to have children.  All of a sudden my fantasy of two kids and a white picket fence came crashing down around my ears.  I may never have children.  Rather than saying "Hey, there are fertility treatments, and women with PCOS get pregnant all the time using them," I spiraled into a pit of despair.  I was a failure as a woman.  My body was built to do one thing, if you think about it from an evolutionary perspective, and I couldn't even get that right.  Suddenly, every pregnant woman I encountered (and they were EVERYWHERE) was a vivid reminder of the life I would never have.  I cried watching Huggies commercials and tried not to be bitter when my friends and family announced pregnancy after pregnancy.

Hubby and I subjected ourselves to the rather humiliating poking and prodding required by fertility docs, and started treatment while I was still in college.  After 8 months of hormone treatments and a monthly roller coaster of emotions: "Am I?  Oh, I hope!" followed quickly by "Not again," and a deluge of tears every time my period started, we decided to take a break from trying to conceive (ttc).  It was just too hard.  I was already under a ton of stress with school, the hormones had caused me to gain about 30 pounds in 8 months, and my head was still in the dark place where all I could think about was my failure on a basic primal level.  It wasn't always overt and conscious thought, but it colored everything I did.

It's been about 2 years now since we stopped trying.  We didn't intend to take such a long break, but one thing after another seemed to trump our desire to get pregnant.  I think that ultimately, this time is what has allowed me to get my head around the diagnosis and really understand that it's not my failure.  It's not failure at all - 18% of women struggle with this same issue, and even more yet are faced with infertility.  I'm doing what I can to make my body healthy and get my world ready for the child I WILL have someday... and I'm ready to start trying again. 

If you've made it this far, I want to thank you for reading my story.  It's personal and it's not necessarily pleasant to read - but I think it's important for women who are suffering to understand that they're not alone.  And having PCOS is nothing to be ashamed of.  If you have any questions or just want to chat, please don't hesitate to email me or leave a comment.


  1. Just wanted to say I love you. And im here for you if you ever need me. I will be wishing you the absolute BEST of luck, and I have to say, if someone asked me to name one of my friends who I thought would absolutely without a doubt be a good parent its YOU. I KNOW you WILL be an amazing momma, you will be lucky to have that amazing little person you ARE going to make some day. But even more so, that little person will be lucky to have such an AMAZING momma who has been waiting patiently for him/her to enter her life.

  2. Lots of love Heather, just oodles of it. One of my sisters and several of my girl friends have been enbroiled in the world of PCOS. I had borderline symptoms myself - but not to the degree that others have for sure.

    While you are working to make a better you and home etc I hope you are making strides towards defining yourself as the creative, intellegent, kind, compassionate beautiful and powerful women that you are. Even if you never become a mother, that one role that we may play in our lives, shouldn't be the only way you define yourself and the only place you find respect for all that is of great value in you. I wish you nothing but the best in all your endeavors, but I hope most for your happiness.

    I'm not a believer in God's will or plan or of fate, but I do believe that life is built of the moments we cherish and the things we dream of - and in those we can find the means to define our sorrows, joys and hopes. But importantly, as long as we have friends to turn to we'll never be making the journey alone.

  3. Love you babe! Remember one day at a time! Keep doing what you are doing and you will come out a winner in the end...

  4. I'm very sorry it took so long to come to grips with this. It's not your failure because it was always outside of your control. This and many other conditions may leave us with bad feelings about ourselves that are completely unwarranted, but somehow we have those feelings, anyway. I feel a blog of my own coming on ...

    If pregnancy eventually happens for you, this will be fantastic, of course. Your mother and I would be ecstatic! But as should be evident already, neither outcome can alter the love and friendship of many of those who know you. That's unconditional!! Life has few guarantees, but you don't have to carry the burden for most things that happen (or fail to happen) to you.


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