Battle scars. When will I settle in? 9w4d pregnant.

I wish I was able to let go and get excited about this pregnancy.  I wish I could experience the resounding JOY of a first time mom.  I wish I could DREAM about nurseries and bonding with my baby and dwell on our sweet future together.  I think about these things, but do I DREAM?

Instead, I feel cautious.  I am SO happy to be pregnant, so blessed to finally be in this place, but it is NOT the bliss I would have always thought it would be.  Leading up to my first ultrasound, I was nervous, my mind fraught with anxiety.  When could I OWN this pregnancy?  When would I settle into it?  When would I just ENJOY being pregnant everyday?  The ultrasound came and went and though I worry so much less now about whether or not it is real, I have to admit that I have yet to settle into it.  Yet, to wake up in the morning, overcome with feelings of joy and elation that we are PREGNANT.  In my heart I am so thankful and praise God each and every day for this little miracle.  I have been researching baby gear and look forward to putting together a nursery, but I still find myself…well, numb.

This numbness of mine has resulted from so many months of battling with infertility.  Unmet expectations, broken dreams, waiting, enduring, hoping, and so much failing.  A relentless cycle that has left my soul forever changed, my heart hardened.  As the months turned into a year + many months, more and more I began to protect myself.  I worked hard to keep the pieces of my life together.  I went into full on self-protection mode and was able to give very little to those in my life and in my community.  Month after month, I continued to reach out, clinging to any hope I could find in God, Google, or some new treatment plan.  Time and time again, failure.  After a while, I grew calloused, I had to find a way to cope with infertility and no longer allow it to own me.  I had to find a way to rid it of the power it had over me and find myself again.

Well, new life has begun in me and with it, I am trying to restore my heart.  As I learn more about myself and how I respond to pregnancy, I realize just how much work there is yet to be done.  This journey is far from over.  I want to feel again, to LIVE in the moment again.  I want to enjoy each and every moment of this pregnancy and this beautiful baby that is growing in side of me.  I don’t want my past to determine my future. I realize that infertility has shaped me in countless ways for the better of my future family.  I want my children to have a mom who feels their pain and disappointments, who laughs at their sweet jokes, and whom can cry when necessary.

I will regain my soft heart…one day I may even wear it on my sleeve again.  In the meantime, I just thank God for this amazing privilege of finally working towards becoming a mom.  A dream I had all but given up just a few short months ago.  I hope I can find myself settling in soon and I hope that this baby in my belly is in our life to stay.

 

***

I had written this post last night and then thought I should sleep on it before posting it.  Part of me feels guilty for the feeling the way I do, for not being OVER the MOON excited.  But then, as I logged in to my Word Press account this morning, one of my dear blogging friends, Chanel, just found out yesterday that her baby had no heartbeat. This was her second U/S.  She had had a fabulous one just a few weeks ago.  Chanel and I received our BFP within days of eachother and so I have felt a special connection towards her and this baby.  I am heartbroken and so very sad for her and it just serves as another reminder of just how hard this journey really is.  There are no guarantees once receiving that long awaited BFP.  Please send her some LOVE!

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What made it work? IVF prep, God’s grace, and a fabulous RE!

For some time I have felt the need to write about some of the different things that I did leading up to my IVF cycle that could have helped it work.  One will never know what exactly did the trick.  Mostly, I just give all the credit to God and figure it just FINALLY was the right time for us.  Nonetheless, the further out I am getting from our cycle, the more I seem to forget.  I never thought I would say that as we lived it for so long – the shots, the oral medications, the vaginal suppositories, but I am.

So, let’s get to it…

One of the first things I did upon discovering that I might have endometriosis earlier this April, was to get on what I am calling a anti-negative immune system regimen.  There are some negative immune things going on in endo, I sought to counter these effects with:

DHEA 20mg.  I took a very low dose.  DHEA had many positive effects apart from increasing the better parts of my immune system and decreasing some of the unwelcome parts.   (I could go into so much more detail about DHEA and get all scientific, but don’t want to lose you, so we’ll stick with my better/unwelcome parts analogy. ) Apparently it also helps with egg quality.  (Somehow, according to our RE, all our embryos turned out “perfect”, so I’m thinking this really helped.)  Was my RE really on board?  Not really, but they let me stay on it. There are a lot of clinics around the country utilizing DHEA as part of their IVF protocols.  In my humble opinion, I think we will begin to see more of it.

DHA.  Found in Omega 3 Fatty Acids, I took some additional DHA on the side.  Also, to help out my immune system and improve my egg quaility.

Vitamin D – 2000IU.  I increased my Vitamin D intake as it also appears to modulate the immune system.

Melatonin 3mg every night to help improve egg quality.

…I figured if endo was preventing my embryos from implanting or attacking them prior to even reaching my uterus, well, it was time for me to take the offensive position and get it UNDER control. I will never really know how my immune system was really functioning as I did not undergo testing.  Nonetheless, I felt these changes were very important and there was enough literature out there to support them. On a side note, as much as I loved my RE, he isn’t really into the whole immune system side of things and only begins to delve into these things in women with recurrent miscarriages. He kinda laughed at me when I brought it up early in our treatment, but I carried on anyway.

Next, I ordered a book.  IVF Success Program.

This book was GREAT!  Definitely overwhelming and there is NO way you can incorporate everything into your life.  But it provides all the research on everything from diet to exercise to medications to acupuncture to little changes that can make all the difference in having a successful IVF cycle.  A few changes I made as a result of reading it were that I started going to acupuncture again.  I went once a week and then on the day of my transfer, I had acupuncture before and after.   I tried to incorporate more pH basic foods into my diet including cucumbers, red peppers, kale, etc…while decreasing pH acidic foods such as red meat in hopes to encourage more positive changes in my immune system and overall fertility.  She also recommends drinking mint tea everyday…so mint tea I did.  I am not going to get into all the research here.  Too much to talk about, but I really liked the book.  She also goes over the whole process from starts to finish, the different medications you are on and all of the tests you will endure.  There is a yoga book included, as well as a menu planner, and a journal to track your experience.  She also talks about the research behind the eating of pineapple core for 5 days post transfer….

Thus, that is what I did.  Pineapple core post transfer for 5 days!  Just the core.  The bromine helps with implantation.

I had NO caffeine whatsoever, no alcohol, and apart from a few luna bars each week, did not consume any soy products.

I was on bed rest for 2 days post transfer and was not allowed to exercise or have sex until we had our positive beta.  Our RE wanted my body in REST mode.  Walking was okay as long as it wasn’t too strenuous and I kept my heart rate under 140bpm.

These are the main things I did to improve our chances of success.  I really believe they helped as our embryo quality was “perfect” on all of our embryos according to our RE and embryologist. Also, I felt really good throughout our cycle and think the acupuncture and diet changes really helped with that.  Yet more than anything, I prayed…a LOT and left the whole cycle in God’s hands.  I realized pretty early on that worrying would get me NOWHERE.  I had no control except to take my medications and eat as best as possible, the rest was up to my body and God.  I knew that if He willed it to happen that it was going to happen.  I just had to keep the faith, keep the trust!  Of course, I got anxious from time to time and fretted and worried and googled, but as quickly as I would see my mind spiral out of control and count us out for this cycle, I would try to take captive these thoughts and replace them with ones of faith and belief.  Mind over matter.  I was NOT going to let my worries get the best of me.

Of course, I realize that my RE deserves a great deal of credit too!  Oregon Reproductive has an AWESOME protocol and amazing doctors and I feel SO blessed to have received care under them!

Post transfer, I was on Endometrin 3x daily, Estrace 2x daily, and Aspirin.  I am still on the Endometrin and Aspirin and only finally got off the estrogen last week.  I am hoping that starting next week I will get to begin my wean from Endometrin.  I still take my 2000IU of Vitamin D and prenatal with DHA, but stopped all other medications.

Anyway, much credit to Dr. Hesla and his colleagues.

Hopefully, I didn’t leave too much else out. If so, I will add it in later.  I have really enjoyed other bloggers post of things they have done to improve their success so thought it important to contribute my own!  All the best to all of you!  I am praying for so many of you and am so thankful for this community!

Beta # 2 Results!

I just want to thank everyone for all the love and support over the last 2 days.  We are still in shock but little by little things are starting to sink in a bit more.  I know this news isn’t always easy to read or receive in this community.  That said, I just want you to know that my heart and prayers are with everyone wherever they may be in their own journey to have a child.   I don’t know how to express that well, but that’s where we are at.  We are so humbled by this most recent turn of events in our world and give all the glory to our God.

Our Beta was 427 today.  The number went from 98.4 to 427 in just 2 days. Our first ultrasound will be on August 13th.  We are really looking forward to it!!!!

3 month Lupron suppression, what?????

Today, we had our final appointment with the RE before we begin our IVF protocol in a few short weeks.  First off, we did our Doppler Ultrasound and Mock Embryo Transfer.  Both looked great.  YEAH!

Now, down to the nitty-gritty.

My questions regarding the immune system and its relationship with endometriosis were voiced and heard by Dr. H.  He believes further immunologic testing at this point is not necessary.  He also believes the approach that Dr. Beer uses in his book is a very alternative approach utilized for a very specific patient population of which he doesn’t believe I fit into.  Dr. Beer’s book is very compelling and argues a strong case for addressing immune related issues underlying many failed IVF procedures and miscarriages.  We don’t want to become one of those statistics, which is why we have been scouring his book.  Too much information is not always a good thing as it has definitely increased our worry about our upcoming IVF cycle.

Dr. H. encouraged us to broaden our sources.  Perhaps we could check out the chapter HE wrote on endometriosis in a surgical gyn textbook.  SLAM!  (He then proceeded to show us all 15 pages of it.)

ME:  Alright, you are the expert.  You have been doing this since I was toddling around in diapers (I didn’t actually say it like that, but pretty much).  Please, whatever you think we should do…we will DO it.

Dr. H:  Well, now that you have brought all this up, perhaps we should have you do a 3 month Lupron suppression.  It’ll calm down and suppress the Endo.  We usually only reserve this for women who have a failed cycle. There is one small study that shows that women who do this had a much higher rate of pregnancy.

Me:  Could you show us the research?  I would love to see the numbers.  I mean, are we talking an increased rate of, say 4% or 20%?  We have seen that the pregnancy statistics for our age group at this clinic are 66%.  Are those numbers different for individuals with endometriosis?

Dr. H.:  Oh, well, as soon as you see the study you will want to do it, the numbers are pretty convincing.  Your pregnancy rate is 66% for your age group.  We don’t really see a difference between those with endometriosis and those without.  But, the study reveals that these numbers can be much higher.  Keep in mind, there really is very little data regarding this topic and this study has not been duplicated, but nonetheless, it’s a good one.

Hubs and I:  Alright, we will look into it and get back to you.

Confused and trying to keep my emotions at bay, we thanked him for his time and told him we would give it some contemplation.  We then met with the IVF coordinator and discussed the medications a bit more.  We also asked her for her thoughts.  She thought since my Endo wasn’t very painful right now and I had already been on suppression therapy via my BCP for 5 years that I should be ok, but that it was our decision.  We could always proceed with this cycle and if it fails, do a 3 month lupron suppression before a frozen embryo transfer.  She said Dr. H. is a little worried because we are very educated and he feels that he needs to give us this option versus us finding out about it later and holding him accountable. It really is up to us.

AHHHHHH!  Someone just tells us what to do. We are not the retaliating type.

Later, out in the car, we were practically pulling our hair out.  Can we handle waiting another 4 months from now?  Can I handle the side effects of Lupron and progesterone all summer?  There are always going to be what ifs and could we have done mores?  In addition, I have already rearranged my summer schedule at work – that was no easy feat.  All in all, for now, we think we will proceed in June.

Lord, please give us your wisdom.  How would you have us to proceed?  This is a very difficult decision.

Has anyone done a 3 month Lupron suppression?

Endometriosis. Immunity gone array.

Immunity.

We all love it.  We are all thankful for it.  When we don’t have it, bad things happen.  Seemingly insignificant bacteria and viruses equate with certain demise.  But what do we do when our immune system is overly active?

Such is the case with Endometriosis (Once again, I will refer to it as the big “E”).

I’m am learning so much about this new diagnosis of mine.  Thankful for answers, but nervous as to how it will play out over the years.

 

4 things I have learned.

1.  It is painful – This would explain my intensely painful periods over the years.  5 times between 2003-2005 (I think this is when the big E began to run its course, see more below),  I ended up in either the ER or urgent care with pain so severe, I was doubled over, ready to die.  The nausea came with the pain and quickly lead to vomiting and when there was nothing left to bring up, hours of dry heaving would ensue that left me exhausted and dehydrated…still in PAIN.  Ahh, such pleasant times.  Double O-C more like it. (Out of control).

When I started my Master’s in 2006, I could no longer deal with the unpredictability of my painful periods.  Would this month be SO bad that I will end up in urgent care again, needing an IV, Morphine, and anti-nausea medicine? The unpredictability was anxiety provoking. I could not afford to miss class/clinicals for my period – thus began my 5 year stint on CONTINUOUS birth control.  It kept the painful periods away. Yep, that’s right…not a single period for 5 years.  In retrospect, I am SO thankful for this now, given my diagnosis…given point # 2.

2.  There is cell growth where there shouldn’t be.  Endometrial cells (the cells that line your uterus) somehow find their way OUT of your uterus where they belong and can become attached to your abdominal wall, ovaries, bowel, vagina…you name it.  They grow a lining and shed it right along with your regular menstrual cycle.  This bleeding in areas not meant to have to deal with such atrocities become angry and inflamed.  This leads to the formation of adhesions that cause parts of your body to stick/twist to areas and/or organs they shouldn’t.  Adhesions = SEVERE PAIN.  The fact that I was on BCP meant that my body was given a 5 year stent of reprieve from such growth and inflammation.  THANK YOU, Doctor, even though you didn’t know you would help me so much in the long run, what a GIFT!

3.  My IMMUNE SYSTEM is WHACKED.  I have discovered that the immune system of someone with the big E is a little, shall we say, off the mark.  Without getting too scientific and lose you all in medical ease, I will give you the quick and the dirty.  The body doesn’t like foreign material.  Sperm is foreign material, embryos are invaders – kill them…kill them all!  ATTACK!  Yep, that is pretty much what can happen.

4.  IVF works.  It takes the abnormal conditions within your body and normalizes them within a controlled, ideal environment (like that of our fertile counterparts).  The beautiful 5 day old blastocyst (embryo) is able to attach, unharmed, unattacked to the rich uterine lining of a now medically suppressed immune environment within a woman’s body.  This is KEY to a pregnancy in an otherwise hostile uterine environment.

 

Next question for the RE.  So, if IVF works for us and we achieve implantation, what next?  Will we have overcome all obstacles in our BATTLE against the big E?  Will we need to continue to suppress my immune system?  Or will my other hormones take over and bring the pregnancy to fruition?

Tomorrow is our last BIG RE appointment before we leave for France.  While in France, we will start our treatment regimen….come home mid-June…and then it will be time to start the heavy hitters of IVF.  So much to learn.  A long ways to go, I really hope we can get my immune system in check.

Houston, we have a diagnosis!

Yes, that was an exclamation point after that word.  Clarification though:  a potential diagnosis!  Why it has taken this long to figure it out, I am not sure.  At the same time, to have a diagnosis is always a mixed bag of emotions. Perhaps, I shouldn’t be so excited to say that we have one, but I have really disliked waffling through the world of “unexplained” infertility.  There is ALWAYS a reason for the season.  Somewhere, somehow, someway, SOMETHING can explain our infertility.  We just didn’t know what it was, until today.

Ok.  Stop, back up…

First off, YEAH for getting the ball rolling!!!!!!!!!!!!!!!!!!!

For the first time in months, I woke up both excited and hopeful about our day.  I am grateful to have the opportunity to pursue IVF.  Of course, I wish it didn’t have to come to this, but it has, so here we are.  It feels really good to be moving forward.

Ok.  Back to the diagnosis part.

My ultrasound revealed a 25mm cyst on the right side consistent with endometriosis.  There it is, a potential diagnosis.  I had a cyst on my ultrasound (U/S)  in February – but that U/S was done at my OB/GYN’s office and they felt it was a hemorrhagic cyst left over from my previous cycle.  Nothing to be too concerned about and very normal. But this one was different, it was “dense” and appeared to be the big E.

I have seen endometriosis.  I have seen its devastating effects upon a women’s body, tiny little spider looking areas of tissue and adhesions that can really distort her abdominal cavity.  I have seen these pictures so many times on the video monitor in the operating room while giving anesthesia to a woman undergoing laparoscopy for infertility or suspected endometriosis related to intense pain during various points of her menstrual cycle.  Laparoscopy is the gold standard for diagnosis of endometriosis – direct visualization of these formations. There is no definitive way for them to know for sure I have this without doing one, but it is quite certain.  My cyst is not large enough that it necessitates an operation, so that is a tremendous blessing.  Everything else on my ultrasound was perfectly normal and my lab results came back normal as well.

Though many of you may think its crazy to want a diagnosis of some sorts, especially this one, I can’t tell you how good it feels to have this whole infertility battle be validated.  It is no longer futile in my mind.  Try as we may, endometriosis, through its various mechanisms, can render a woman infertile.  Of course, I wish it wasn’t this way just like I wish we didn’t need to do IVF, but this is the road we have been given to walk.  We can work with endometriosis. 

Next Monday we have our mock embryo transfer and our doppler ultrasound to look at my uterine blood flow…AND we receive our IVF calendar.  Looks like we are gearing up for the end of June, beginning the medications on Day 3 of our next cycle.

Thank you all for your tremendous support.

 

Here is a fantastic link about endometriosis and infertility:

http://www.endometriosisinstitute.com/infertility.html