Thursday, July 26, 2012

PCOS: My story

Polycystic ovary syndrome is a condition in which a woman has an imbalance of a female sex hormones. This may lead to menstrual cycle changes, cysts in the ovaries, trouble getting pregnant, and other health changes.—

When I started typing up this blog post I thought I was going to go more in the direction of scientific facts about PCOS.  But, the more I think about it, the more that’s not what I want it to be about.  I am open to answering any questions about PCOS, and it’s symptoms, but I want to tell my story.

Before PCOS I never questioned the fact that I would be a mother.  It’s something all little girls dream of.  Once I started college I knew there was something wrong with my periods but I didn’t know what.  I was fairly active in high school, playing softball, and I knew that or the change of pace to college life, could change my cycles.  It finally got out of control and my mom took me to an ob/gyn.  One of her friends was a receptionist there, that’s how we picked the place. He did a routine first gynecology exam.  He put me on birth control because I wasn’t married and not trying to have kids.  He told me once I was ready to come back and we would discuss doing something different.  The birth control stabilized my cycles, but it also made me crazy.  At the time I was young and didn’t realize there are so many different kinds of birth control.  Or the fact that I could just call up the dr. and say I didn’t like the side effects and ask for something different. 

Fast forward to 2005.  I had stopped taking the birth control because my prescription ran out, I believe.  I had gotten married in October so I knew if I got pregnant I would be fine with it.  In December I found myself pregnant.  A few days later I found myself in the ER having the worst experience of my life.  I had been at work and was bleeding and cramping, both heavily.  By the time I got to the ER the bleeding has slowed tremendously, but I still had no doubt that something was wrong.  They took me to do an ultrasound, of the trans-vaginal variety.  I remember the tech asking me to insert the wand into myself.  I said “excuse me?”  She said that was the way I gave my consent.  I would much rather have signed a form.  There was no sign of a baby.  I had already lost it.  They gave me some pain pills after my mother in law demanded them, signed a form for me to have a day off work, and sent me home.  On that day, my life changed completely.  I will never be the same.  The innocence was gone. 

After we took a break for a while, we decided we were ready to actually try again for a baby.  I went back and the dr. told me to try 3 months without taking birth control and then we would do further testing.  I knew this wouldn’t work because I had been without birth control for a while.  And my period was pretty much a non-stop thing.  But, I did what he said.  When I went back and did the further testing he told me that I had PCOS, polycystic ovary syndrome.  I immediately went to the internet to look it up.  It was a “duh” moment.  I had almost every symptom on the list.  Why had no one ever suggested that I had this?  But alas, you take some pills, ovulate, and get pregnant.  This wasn’t the end of the road.  He prescribed clomid for me to take at the beginning of my cycle.  That with timed intercourse would do the trick.  It was around this time that I got hardcore into tracking my cycle, and temping.  I went back for CD13 (cycle day 13) bloodwork.  He called me the next day to tell me that I had definitely ovulated.  Now to just wait to find out if I was pregnant.  I will tell you over and over that I have ZERO patience.  That applies to every aspect of my life.  I started taking home pregnancy tests long before I should have and finally was able to see a faint line.  I bought a digital test and saw that magical word, “PREGNANT.” But within days, I was bleeding.  First just a little, then more, then more.  I called the office one morning early and the Dr. called me back.  I told him I was bleeding and the nurse told me to call if it got worse.  He told me not to call him back “unless you feel like you are bleeding to death.”  I was taken aback.  I thought dr’s were supposed to be compassionate with this sort of thing.  I called Jacob’s aunt because she’s a nurse.  When she found out who my dr. was she made me an appt with her ob/gyn immediately.  She had worked with my current dr in a hospital setting and had seen him to less than favorable things. 

By the time I had my appointment with the new Dr, I had already spent more time in the ER and lost the baby.  It was heartbreaking to go to that first appt and have to explain to them that I was no longer pregnant.  But I loved the dr.  I loved her bedside manner, and I loved the fact that she didn’t write me off.  She started making plans.  Scheduling more tests, deciding what we should do next.  You’ll have to forgive me because I don’t remember exactly what happened, and since I wasn’t blogging then I don’t have the greatest records.  I know we did a lot of bloodwork.  That’s when she found out that I was in fact insulin resistant.  It’s one of the symptoms of PCOS, so there wasn’t any shock there.  She started me on a medication called Metformin.  It’s usually something that people with diabetes take.  But, it helps stabilize your blood sugar, which has a profound impact on ovulation.  We also did more ultrasounds to look and see how bad the cysts actually were.  The next step was to do more clomid.  Once again I don’t remember the exact protocol we did, and which cycles worked and which ones didn’t.  But eventually I became pregnant once again.

Before my blood work to confirm pregnancy I had already taken a home pregnancy test and seen that magic P word.  But when the nurse called me to tell me the results of my bloodwork she was shocked that I had gotten a positive home test.  She said my test results shouldn’t have been high enough at the time I tested to get a positive result.  They ordered more blood work 24 hours later.  The numbers were climbing, but not fast enough.  They weren’t even high enough to be able to see anything on ultrasound.  My dr personally called me at home one night after hours to tell me that there wasn’t anything we could do.  We just had to sit and wait to see what happened.  She hadn’t given up hope completely, but the outcome probably wasn’t going to be good.  She was right.  Eventually the bleeding became too much and I lost the baby. 

We decided to take a break from trying to conceive.  The tolls infertility takes on your marriage are extreme.  As a woman you feel like a failure as a wife.  I mean, one of the reasons a man gets married, is to continue his name.  When you can’t give your husband that, it isn’t pretty.  Jacob never made me feel like a failure.  It’s just the personal standards I had set for myself.  We notified my dr that we would be taking a break for a while, just to get grounded again and decide what our next step would be.   One of the last things she told me was to be careful.  Because the metformin can stabilize your blood sugar enough that you can ovulate on your own.  I kind of laughed to myself, because I knew that wasn’t going to happen.  But it did!
One day I got the urge to take a test.  I still had some stashed in the bathroom, and Jacob was out with his brother for the night, so I took a test.  It immediately turned positive and I thought the test must be broken, so I took another one, and the same thing happened.  I couldn’t believe it!  I called my dr the next day and she ordered bloodwork to confirm.  In the back of my mind I was still very concerned, because I had never had good bloodwork results.  But when they called me back I was in awe.  It was a number so high that I couldn’t believe it!  Our Lexi Rosemay was born on May 3, 2009 and she is truly our miracle!

After Lexi we knew we wanted more kids, but we weren’t going to rush anything.  I was out of work for a while after I had Lexi, so that meant I was without insurance.  In January 2012 we were preparing to move into our first home that we had purchased.  I had a job with insurance and even though we hadn’t talked about it, I think we both knew that “the talk” about when to start trying would be coming up soon. On February 14 I stopped on my way home from work and bought a dollar store pregnancy test.  I just hadn’t been feeling completely right lately, and even though I knew it was a long shot, I still wanted to test.  Once again, a super fast, super dark positive.  WHAT?!?  Because of PCOS I hadn’t even had a period since November.  I immediately started googling things.  And come to find out…you can ovulate without having a period.  Scheduled an appointment with my ob/gyn, who I hadn’t seen since my follow up after I had Lexi.  She was amazed.  I am still amazed.  Our Rex Allen is due October 1, 2012.  He is our second miracle. 

I have a lot of guilt about getting pregnant miraculously 2 times when I have so many deserving friends who are doing all kinds of treatments, and still can’t get pregnant.  But I have to push it aside.  I know I was chosen by God to be the mother to these 2 babies.  They are my miracles.  They give my life meaning.  I love them with my whole heart and then some. 

Am I still worried about PCOS?  Yes.  We know after Rex is born, we are done having kids.  Since we got married, we always knew we wanted 2.  Now we have to decide how to prevent pregnancy…something we haven’t done for several several years.   I don’t want to be tied down to taking a birth control pill every day for the rest of my life.  Jacob is completely willing to do his part.  But, even if he does that I will still have to do something or else my cycles will be completely out of sorts because of PCOS.  I’m too young to have a hysterectomy.  I know my dr. won’t do it.  And I’ve read some articles that state even if you have a hysterectomy all of your symptoms of PCOS won’t go away.  I could still suffer from the weight gain, acne, excess facial hair.  I still have lots of research to do before I decide what’s best for me. 
I do know that this isn’t the end of the road for me as far as talking about PCOS.  PCOS changed who I am.  And I will never stop advocating.  I will never stop offering advice.  I will never stop reading about it.  And until my baby girl has kids of her own, I will never stop worrying that it is something I have passed on to her.  Please know your body.  Please ask questions.  If there is anything I can do for you, please don’t be afraid to contact me!

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