Wednesday, July 30, 2014

Honesty and Transparency: Going Public With Our Struggle

"There is a unique pain that comes from preparing a place in your heart for a child that never comes." -David Platt

I'm going to begin by saying that I got David's permission before writing this post.  In fact, he was all for it.  I didn't want anyone to think I'm that crazy wife who spills the couple's deep dark secrets without asking their partner.  Until now, this struggle of ours for the past 16 months has been something we have only shared with good friends and family.  But it's been on my heart more and more recently to share publicly, and I believe there is a twofold purpose behind that.  For one, we obviously covet the prayers of those in our life.  And for another, I cannot help but think there are those who are walking a similar journey to us but feel alone in it, like no one understands.  I want those people to know that there is someone that "gets" what they are going through.  So, here it goes...

We are infertile.  Again.

Some of you may remember that we struggled with primary infertility with Joseph due to my endometriosis.  I wrote about it when I was pregnant with him, after an 18 month quest to have him, in this post: http://onefleshonelove.blogspot.com/2012/06/our-journey-to-parenthood.html .  What we didn't know at that time was that, while endometriosis put a damper on our fertility while trying for our first child, it would all but destroy it when trying for more.

Because a) we knew my endometriosis WOULD regrow and b) that we ideally wanted a couple more children, if possible, we began trying to get pregnant with baby #2 when Joseph was 7 months old.  I truly didn't think my endo would be much of an issue this time around.  Joseph had been exclusively breastfed, and breastfeeding tends to slow the growth of endo in a woman.  And with only 7 months of growth opportunity post-pregnancy (my pregnancy with Joseph would have stalled the growth of the endo during those 9 months), I didn't see how we could have much of a problem this time.

What I didn't know then was that endometriosis has pretty much all but ruined our fertility.  I had no idea, as a teenager, that the same "little condition" that caused me to have pain each month would actually end up being a terrible disease that would make growing our family biologically very, very, very difficult.  Truthfully, I used to think that endo was a condition that some women just had to put up with, and other than some pretty significant physical discomfort and maybe a few extra months needed to get pregnant, it wasn't really a big deal.  I saw women who had struggled with it longer than I had talk about what a "terrible" and "life changing" disease it is.  Now, I agree.  It is a monster that can thoroughly alter your life either physically or emotionally.  And sadly, I'll have it forever.  There is no cure.  One day, when we are done having children, I can have a hysterectomy, but I've read of women having endometrial growth at other places inside their abdominal cavity EVEN after that.  It certainly won't ever affect my lifespan or anything crazy like that, but it will always be there.

So, we started trying to get pregnant with #2 in May of 2013.  Months went by, countless pregnancy tests with in the trash with a big fat "negative" on them.  In January, I was starting to get frustrated.  We had been trying 9 months and were only 3 months away from meeting the definition of "secondary infertility," meaning a couple was able to conceive the first time (of course, with us, we conceived Joseph 6 months AFTER being diagnosed with "primary infertility") but is seemingly unable to conceive subsequent children.  So in January, I made an appointment with my OB/GYN for another HSG, the same procedure I had when trying for Joseph.  The HSG showed my fallopian tubes were clear, but my doctor said he still believed the endo may be playing a major role in our trouble conceiving, as the inflammation it creates in the uterus is not a good environment for conception.  Because a) I really wanted us to get pregnant as soon as possible and b) I was having some symptoms that signified that my endo has regrown, David and I decided to have my doctor do another laparoscopy to remove any endo growth.  I blogged about that here.  http://onefleshonelove.blogspot.com/2014/02/laparoscopy-2014.html .  I was sure this would be the answer to our fertility struggles.  The next time I was able to take a pregnancy test I took one with almost assurance that it would be positive.  It wasn't.

Finally, a few months ago, I explained to my OB that, being 33 and ideally wanting at least a couple more children, we were ready to get aggressive about getting pregnant (I will add here as well that both during primary and secondary infertility David has been tested for anything that could be wrong on his end, and both times has come back totally normal).  He agreed with me and referred us to Premier Fertility Center in High Point.  Dr. Deaton, who runs the center, is a leading fertility expert in the area who performs all types of fertility interventions including IUI and IVF.

Upon my first meeting with Dr. Deaton, he reviewed my files and ordered some additional testing.  One was a blood test to check my AMH, which measures how many eggs a woman has left (not an actual number, more of a rough idea of whether or not her quantity is high or low).  I wasn't worried about this test.  I had the same test done by a different fertility specialist after we'd been trying for a year to have Joseph.  It came back totally normal at that time and I was told then I had many, many eggs remaining.  So again, I wasn't worried, because things couldn't change that quickly, right?

Wrong.  A few days later a nurse at the center called me with my test results.  The AMH results were not good.  Normal AMH in a fertile woman is between 1.5-4.0.  Mine was 0.66.  I had the egg reserve of a woman in her late 40s.  It is equal to a 48 year old woman trying to get pregnant.  How could this happen?  No one in my family had this problem.  I was shocked and devastated.  It wasn't until I started doing my own research AND talking further to the staff at the fertility clinic that I realized what happened.  No WONDER we weren't getting pregnant, as a reserve this low doesn't lend itself to fertility.  At all.

JUST before getting pregnant with Joseph (thus just before my first laparoscopy), the endometriosis in my body had caused me to get bilateral endometriomas.  An endometrioma is an endometrial tumor located on your ovary.  Bilateral means that you have an endometrioma on both ovaries.  What I never knew, until recently, is that endometriomas are a terrible, terrible, terrible thing for your ovarian/egg reserve.  The tumors themselves, if left where they are, continue to grow and destroy egg-containing tissue in your ovaries.  If removed (which is what happened during my surgery), the removal destroys egg-containing tissue.  Either way, you lose.  Basically, to make a long story short, the endometriomas literally ate my ovaries, or at least the parts of them that contain a lot of eggs.  I didn't even know that was possible, but literature points to a correlation between "bilateral endometriosis" and a "profound" negative affect on egg reserve and fertility.  And this reserve will only get worse with time.

Thanks endo.

Knowing this, it is a SHEER miracle that we got pregnant with Joseph.  I would never be one to say that Joseph is more of a miracle than any other child, because God's gift of life is an equal miracle for all who receive it.  But I do believe that, given the circumstances of Joseph's conception, and given the fact that we were literally within minutes of losing him during his delivery, his PRESENCE on this earth is an exceptional miracle.  I'm so grateful for him every single day.  I have always wanted a big family, and I do believe God may have more children in store for us, however that happens.  But at the same time, if that never happens, we have been given MORE than enough through our sweet boy.

I won't go into the emotional affects of this news about my AMH (not because I don't want to...I'm definitely an open book here, but because it would extend this post by 20 paragraphs - so maybe another time?), but I will tell you there is something profoundly disheartening about feeling like your body has failed.  Even with a super-supportive husband.  Even when you know that this disease is not your fault.  Even when you know you had no active role in it.  I cannot think of a more eloquent way to say it other than "It stinks." 

So, where are we now?  On Friday of this week, we will attempt our first IUI procedure.  If you would like to know more about what IUI is like, there are so many resources on the internet.  Basically, it is a way to bypass the inflammation from my endometriosis and hopefully get an egg fertilized.  This procedure doesn't have an entirely huge rate of success in any couple, but even less so in my case because we are working with a lot less eggs than the average woman.  But we know God can do anything!  We were supposed to do it for the first time last month, but my body, tricky as it is, grew an ovarian cyst which threw things off (not an endometrioma though, thank goodness).  I was on medicine for a month to get rid of it but thankfully it shrunk and I narrowly avoided surgery to have it removed.  I've been under ultrasound monitoring at the fertility clinic and yesterday we were given the go-ahead to proceed at the end of this week.  I know there is a small chance it will work, but I literally think I could jump out of my skin with excitement because there is A CHANCE (no matter how small) that I could be pregnant by the end of the week (of course we wouldn't know for a few weeks yet).  I don't have my hopes up, but knowing that we are being proactive and taking a step forward makes me so uplifted!

Tonight, I give myself a shot of a drug called Ovidrel in the stomach, which will force my body to release an egg in the next 36 hours (I have never ever been so excited to give myself a shot, because I know this could be a huge step in the right direction!), and then Friday morning David and I will go for the actual procedure.

At this point we know that a) it will be an amazing miracle if we conceive again (because the odds surely are stacked against us) and b) that our chances of ever having a third or fourth biological child are virtually nonexistent.  We have talked as a couple about other family building options, but we are still praying about those and I'm not certain we are quite ready to share our thoughts on those yet in a public forum.  IUI is not cheap and our insurance offers no assistance when it comes to infertility treatment.  So everything we are having done is coming out of our own pocket.  We can afford to do IUI for a few cycles, but not indefinitely.  We aren't sure that IVF would ever be for us for a number of reasons (a huge one being that my poor ovarian reserve doesn't lend itself to IVF success, AND the procedure averages $20-$30K).  Adoption is always an option as well.  We can't wait to see what the Lord has in store!

Pray for us as we go through this process, will you?  Pray that we will have hope and peace, and that God's will will be done, for we know that His plans are far better than our wildest dreams.  Thank you to all of those people in our life who are willing to walk beside us on this journey!


3 comments:

  1. Praying for you Lisa! I know, oh how I know, what if feels like when your dreams of a family are not happening like you thought/want. (though our circumstances are different) It definitely draws you near to God if you draw near to Him. I pray that for you! Praying for Fertility this week also! :) :)

    ReplyDelete
  2. I went to school with Lisa (Wilson) and found your blog a while back. I've been following your journey for a while. I wanted to offer my support and prayers. We are a little further down the road on this ART journey. God has big plans for us all.

    ReplyDelete
  3. I will be praying for you Lisa. I understand all too well what it's like for your body to be working against you.

    ReplyDelete