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Monday, August 5, 2013

Infertility and PCOS

I was away from blogging for a while, so this is my first post explaining why. This is my first post on infertility, or PCOS. And it was very hard for me to write and post. So here it goes.  
My infertility and PCOS story. Well, the story so far.  So, I said it. Its out there. There is no turning back, so I better just jump into it. When we were going into the 4 month trying to conceive, I was given the news that I am not ovulating... no, scratch that, I was not even growing a viable follicle. I decided to just be up front with people. Mostly. When people ask when we are going to have a baby, when people ask why I am having hot flashes, or just when. I say it. Mostly. And by mostly, I don't mean I read this posting to them, I just tell them that we are having fertility issues on my side, and although it is not a surprise, it doesn't make it any easier. To each their own, but I decided a couple months ago, that I was not up for this hiding, lying, shameful take on it that a lot of women have (NOT that there is anything wrong with that, but I just couldn't) . That route is far too much work FOR ME, and far too much drama. I have enough drama with it inside myself, that I cannot add the lying and the hiding and the shame. And the lying and the hiding and the shame, will get everyone that struggles with it... no where. But that stance on it was not always the case for me.
So, here is my story. I have never been skinny, but never had a major obesity issue, got my first REAL bra in 3rd grade, my face was covered in zits by the 6th grade, and I have had hot flashes for as long as I can remember. Mood swings, exhaustion (as in the need to sleep 13 hours often if I allow myself), hair falling out (without being able to notice it on my thick head of hair thank goodness), brittle nails, hair in places I don't want it, the list goes on. I was told by numerous doctors growing up that I need to watch my weight. And I would practically burst into tears when I tried to tell them that I was a two sport athlete all year around and I didn't eat all that different from my very skinny friends, and no matter how careful I was, the weight just wouldn't come off - they looked at me as if I was a liar. And the shame was eating away at my soul with every look they gave me. Finally....I was diagnosed with PCOS (Poly Cystic Ovarian Syndrome) when I was 16 (close to 17 years old). That's when I started my gift from mother nature. And it was more brutal than I can explain. The doc ran tests including for cancer, and came back and said, "I'm putting you on birth control". And sent me home. Not much of an explanation that I can remember, except to tell me that I could have trouble getting pregnant later in life, that I am at a higher risk for ovarian cancer, and that I need to watch my weight. It wasn't until about 9 years later that I saw an episode of Mystery Diagnosis about PCOS, when I decided to start taking control - or at least I tried.
First, here is the definition and some symptoms of PCOS: it is one of the most common female endocrine disorders. PCOS is a complex, heterogeneous disorder of uncertain etiology, but there is strong evidence that it can to a large degree be classified as a genetic disease. The principal features are anovulation, resulting in irregular menstruationamenorrhea (absent menstrual period), ovulation-related infertility, and polycystic ovaries; excessive amounts or effects of androgenic (masculinizing) hormones, resulting in acne and hirsutism; and insulin resistance, often associated with obesityType 2 diabetes, and high cholesterol levels.
Ummmm WHAT?! You have got to be kidding me with that definition.  One thing to note, some women who have this, have almost no symptoms, some have mild, some have horrible severe symptoms. I am somewhere in the middle of all that (I feel). After watching the special on TV about it, I consider myself one of the lucky ones. Some women get skin tags, severe obesity, so much hair on their face you wouldn't believe, and there are very few people (doctors), who understand. For me, I just saw a lot of doctors who didn't understand the disease. At one point, my OBGYN said I have to go to my family doc to get Metformin (a pill usually used for diabetics, but is used to help PCOS patients as well), but my family doctor said I have to go to my OB to get my birth control. And all I wanted to know was.... who was really paying attention to this disease I have! I won't bore you with every detail, but will say that I have probably been on 5ish different types of birth control (that I could remember), I've seen 3 Endocrinologists, had hundreds of vials of blood drawn, more ultrasounds than I can count, and had several - SEVERAL family docs that didn't understand to the point now that I just refuse to even speak of it while I am in there. It is just too exhausting. As far as society goes.... this disease is brutal to have while being a teenager. Re-read the symptoms and you should be able to tell that with the mood swings, and the difference in appearance than other girls alone is enough to make someone crazy.
People rarely understand the effects that infertility has on a persons soul. You would not believe the things people say. For instance, "you know, a lot of people get pregnant when they just stop trying" or "You just have to relax, and it will happen". Really? I will suddenly start producing the right size follicles, and my body will spontaneously drop them if I RELAX? Oh, ok, let me get on that, Or, "you are too young to be having hot flashes!!!" (in their most disgusted voice). Oh, ok... let me write God and tell him to make it stop. Or, "it will happen when its suppose to happen". Oh, ok thank you very much. 
And with every person who gets pregnant on their first try, or on accident, or when Mothers day comes around and people treat you like a slave because you are not a mother, or when EVERY SINGLE lady you see is pregnant - A little piece of your soul falls away.  So what you think it is that I am saying... is true. When a couple is going through infertility, all that needs to be said is "that must be really hard, and I'll be praying/thinking about you". Followed by a hug. 

8 comments:

  1. I read every single word of this - thank your for being brave enough to share. My heart breaks for everything you've been through. I can't IMAGINE having those symptoms as a teen. I mean, it's hard enough and other kids are mean enough as it is. I'm just glad you at least know what you have (thank the Lord for that TV show!). Is there any cure?? The good news is NO one is perfect. I think a lot more women struggle with a lot of these things than we know. Regarding the infertility issue, I'm praying for you, and I'm cheering you on from Oklahoma. Hang in there, and try not to listen to people when they say ignorant things. :(

    XOXO,
    Meredith

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    1. THANK YOU! That brought a tear to my eye. It was hard to post for some reason. I took such a long break from blogging because I didn't know what to write about when that is all thats on my mind. But, I am trying to use it to help other women, and I don't ever let things defeat me. There is no cure, but the medication (birth control, metformin) help with the symptoms. Thank you again for your amazing support! xoxoxo

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  2. Kristen,
    Although my first pregnancy at 28 was a bit of a surprise to me (I was underweight, a ballet dancer and never had a regular system until I was 35), trying to plan my second 3 yrs later seemed all-consuming. I can't imagine what you're going through, other than to know it must be very hard, but I hope the best for you and your husband. Advocating for one's self is exhausting, and I hope you feel some support through the blog friends you're making. You sound very strong, but even the strong need nurtured. Best wishes.

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  3. Thank you so much for sharing your story with the world! I don't have PCOS, but we did deal with infertility...the "unexplained" kind. We tried everything, including 4 IUIs and finally got pregnant with our first IVF. Please don't give up hope!

    Thank you for linking up at the Share the Love Blog Hop!!!

    Cindy from Superheroes and Teacups

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  4. Thanks for sharing the info...You have been so brave throughout the process, this is the true spirit to handle it with care. PCOS treatment is really necessary and I would just say that Try try again until u win".

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  5. Hi Kristen! You are very brave to share this, but I know that writing out your feelings can help a lot. Especially when you receive comments of encouragement. My heart breaks for you, because when you want so desperately to become a mother, it's so hard to not be. I'm sending thoughts and prayers from New York. Please don't give up. You seem to have a strength that will help you through this, and beat it. Hugs xoxo. {Thanks for linking your story up to It's Okay, too! I'm glad you did :) }

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