Monday, May 30, 2016

Our Infertility Journey

I want to tell our story because when we started this journey, we only really knew of one other couple who had gone through fertility treatments, and their story was very different from ours.  Many people don’t want to talk about their struggles with infertility, and I completely support that. – This is a very personal journey, and it’s your right to decide if you want to share it or not.  If that’s you, please don’t take my openness as a judgement on your request for privacy, but I firmly believe that discussing infertility should not be a taboo if you want to discuss it.

I want to share our story because I hope that it will help educate those who have never experienced this and because I want the couple who is standing where we were 3 years ago to know they are not alone. 

As we’ve been travelling down this path in our lives, we have met many more people than that first couple we knew with infertility issues.  When we have had the opportunity to share stories, the only thing that was consistently true was that every story was different.  That is probably the first misconception I had to overcome with infertility – I thought fertility treatments were for when some particular combination of diagnosable conditions was preventing a couple from conceiving.  It turns out that there are a wide array of reasons a couple may seek out fertility treatments from an inability to conceive to repeat miscarriages and beyond.

After three years in this process, no doctor has diagnosed anything to be “wrong” with me or with John, but in those three years, I have only had this one pregnancy and no miscarriages.  I know nothing of the heartbreak of losing a pregnancy, but I did experience the fear that I would never get pregnant.  I never imagined that I could be so incredibly disappointed in listening to a doctor say, “There are no more test I think we should run” followed by “There’s nothing wrong that we can diagnose.”  There is definitely something wrong – It’s just not one of the things current medical science can feasibly diagnose. 

Here’s a summary of our story …

In the summer of 2012, we took a vacation to Europe, and due to jet lag and being out of our normal routine, I missed over a week’s worth of birth control pills and experienced a very odd cycle that made us think I might be pregnant. I wasn’t pregnant, but that experience got us thinking it might not have been so bad if I was. – In July 2012, we stopped birth control.

At first we called it “not preventing pregnancy” instead of “trying to have a baby,” but because we are both planners, that quickly turned into reading up on how to conceive and what to expect. For those first few months, we weren’t trying very hard on timing, but we did at least make sure there was one viable attempt per month. From our research, we expected it would take 3-6 months, and we were in no rush.

In December 2012, I had a my annual well-woman checkup, and I mentioned to my doctor that we had started trying about 5 months earlier – “Should I be worried yet?” I asked. She gave me some pointers on timing and underwear and said to let her know if we weren’t pregnant after a year of trying. “You’re young,” she said, “It will probably happen soon.”

A year goes by with increasingly intense attempts to make something happen (e.g., boxers, morning temperature readings, dietary changes, etc.). At my December 2013 well-woman visit, I let my doctor know it had been 17 months, and she suggested that we get a few simple tests to see if there’s something easily correctable we can fix.

We hesitated for a couple months … “We don’t need fertility treatments.” We were afraid they’d laugh at us. We were so young, there couldn’t possibly be anything wrong other than our impatience.

In February 2014, we met with a fertility doctor for the first time who recommended 7 “simple” tests:
  • 4 blood tests – these were in fact simple
  • A sonogram to check my follicles
  • An HSG test – this one is why I put “simple” in quotes – it was probably the most unpleasant thing I did in this whole process (until the egg retrieval)
  • A sperm analysis – John was very proud that his result was dubbed “Excellent”
In March of 2014, the doctor announced that given these test results and our medical history, there weren’t any other tests he’d recommend, and he could not diagnose why we had not conceived yet. There was one other test we never did, but I showed none the common indicators that would lead to recommending that fairly invasive screening.

This was our first really disappointing day in infertility – I had really wanted there to be something we could fix.

The doctor recommended IUI (Inter-Uterine Insemination) – AKA: Artificial Insemination. We were not ready for that – we had only gone to the doctor to see if something was wrong, and since nothing was wrong, surely we’d get pregnant on our own.

January 2015
Fast forward to January 2015 … We felt like our life was a bit in limbo – we never planned anything more than 9 months out anymore just in case we got pregnant, and 30 months of living by a schedule was exhausting.

Neither of us is much for New Year’s Resolutions, but we decided that we needed to know if it was possible for us to conceive, so if it wasn’t, we could move on with our life. We jokingly decided to make 2015 the year of fertility treatments – we had no idea how right that prediction would be

February 2015
At our first visit back with the doctor who recommended IUI a year earlier, he seemed perplexed that we waited a year, and he explained some statistics – I’m just going off memory here, so please refer to actual medical studies rather than take my numbers as truth.
  • An average couple doing the right things to conceive has a 20-25% chance of conceiving each month of the first 12 months
  • After 12 months of trying, the odds decrease dramatically to a 2% chance per month
By this point, we’d been at it for 2.5 years and were definitely in the 2% group – meaning (statistically speaking) it would take us 5 years instead of the normal 3-6 months. This actually gave us pause. “Maybe we just need to wait longer,” but no, 2015 is the year of fertility treatments … We pressed on.

For couples like us, IUI raises the odds back to almost normal – 20%.

February, March, and April 2015
3 failed IUI attempts, each including:
  • Medications: 5 pills and 3 self-administered abdominal shots – very scary at first, but eventually we actually liked this needle over the others
  • Multiple sonograms to check on my follicles
  • Lots of careful timing and calendaring
  • A sperm wash and a procedure with a catheter to transfer the sperm
  • Two weeks of waiting and progesterone suppositories
  • A blood test that confirms I’m not pregnant
This is a Follistim needle - It went in my abdomen - Scary at first, but eventually it was "old hat"

After the 3rd IUI, our doctor shared some more statistics – I don’t remember the details, but essentially IUI success rates diminish over time, so we were no longer looking at 20% odds with each attempt – we were now back in the single digit odds

When the doctor first explained the stages of treatment, IUI was the 2nd of 4 stages:
  1. Clomid pills only – didn’t apply to us because initial tests showed I was very regular and producing plenty of follicles
  2. IUI – what we’d just done 3 times
  3. A more intense version of something similar to IUI – I can’t remember the name of this step
  4. IVF (In Vitro Fertilization)
We learned in the visit after the 3rd IUI that step #3 would be unethical for us because our sonograms during the IUIs showed 4+ follicles every time – If we went with step 3, we could end up with sextuplets. The doctor was recommending we switch from IUI directly to IVF.

If the day we found out there were no more tests to find something wrong was our first disappointing day, this was our second – Remember: There’s nothing diagnosable that’s wrong with us, so we never expected to hear that the only other treatment recommended for us would be IVF.

May 2015
The recommendation of IVF was a surprise that we weren’t ready to handle, and the doctor agreed to do one more IUI in May 2015, which resulted in yet another negative pregnancy test

This is the point where we knew, even though there’s nothing we can diagnose, there is definitely something wrong. It’s not just the odds of normal couples conceiving that we’re compared to now. We had 4 IUI attempts where we know the follicles were good, the sperm was good, and the timing was right (down to the hour) – There is still no medical explanation for why we had never gotten pregnant.

We asked the doctor if we’d ever conceive without IVF, and his response was that he couldn’t say for sure. He was unsure because it can’t be medically explained, but he said that given all the results we’ve had trying normally and with IUI, he would be very surprised if we decided to skip on IVF and ever got pregnant naturally.

We were very unsure of what to do. Our resolve of 2015 as the year of fertility treatments was fading in the face of $15K estimates for IVF when we’d already spent $10K on various test and IUIs …
  • Adoption can cost $20K – what if we’re just throwing away 75% of the funds for an adoption?
  • Is IVF removing the miracle of life and conception? – we had similar concerns with IUI, but it’s not as extreme
  • Are we being desperate?  Should we just wait?  The doctor didn’t say there was 100% certainty we couldn’t conceive without IVF
  • What if we get 6 or 8 embryos? – we don’t want that many kids, but we couldn’t imagine throwing out an embryo
In the end, we decided that IVF would finally put to bed our questions of if we can conceive and we needed to know. So we moved on to IVF and once we were on that train, it felt like the doctors controlled our lives for the next few months …

Egg Retrieval
We had a couple more test in preparation for IVF.

Then, when the medicines arrived, it filled a whole drawer in our refrigerator. If we thought the medicine schedule was intense with IUI, we had no idea. Now some of the medicines required mixing and there were days with 2 or 3 shots on the same day (thankfully, we were still on abdominal shots at this point).

At one point there were sonograms every other day to check on my follicles, and by the time we got to egg retrieval day, there were 27 follicles the doctor was watching. I was completely knocked out for the retrieval and woke up to find that they had retrieved 12 eggs – less than I expected from 27 follicles, but the doctors were pleased.

The days following the retrieval were painful in 2 ways …

1. My lady parts HURT – I was walking like an old lady who’s too stubborn to give in to her family’s insistence the she use a walker
2. Every other day we’d get calls from the embryologist with increasingly disappointing news
  • Only 10 of our eggs were mature enough to try to fertilize (all 10 were injected with John’s sperm – a process called ICSI)
  • Only 6 of the 10 developed into embryos (typically, they’d expect 8 or 9 embryos)
  • After 5 days, when the embryos were ready for freezing, only 2 were still alive (we had been expecting 3 or 4)
Over the course of 6 days, we went from 27 follicles to 2 frozen embryos. We hadn’t wanted 6+ embryos, but we had hoped for 3 or 4 so we have a few chances. "Nothing works on the first try," we thought, so we need some backup-plan embryos because by this point we’d heard of people going from 6 embryos to only 1 kid. We were told that both of our embryos were very high quality embryos, but we didn’t really understand what that meant yet.

This was the third really disappointing day of our journey, but in our minds, at least we knew we were near the end because we could attempt 2 transfers before the end of the year and close out 2015 with certainty that it wasn’t going to work for us.

There was even one embarrassingly tearful dinner at a restaurant where I couldn’t stop crying, and I think I scared the waiter. I know that sounds crazy because there are many people who would love to have 2 good embryos, but that’s where we were mentally.

Embryo Transfer
Waiting to do the embryo transfer was agonizing. Because of all the meds I was on, I needed everything to clear out and have a natural menstrual cycle before the transfer, which meant after the egg retrieval at the end of July, we had to wait until October 1st for the embryo transfer.

We took a short vacation in August (our first trip since January because you can’t travel when you have a schedule of medications and doctor visits to keep up with). In the meantime, we learned a lot about embryo grading – while we only have 2 embryos, one was an AA and the other is an AB – that meant that on separate trials, each embryo had about a 60% chance of turning into a live birth. Our best odds yet!

The medicine regimen for the embryo transfer had only 3 drugs, which seemed like a relief at first – until we saw the needles for the butt shots!  Ouch!

This is the type of needle that was used for the butt shots

The actual embryo transfer was a really neat experience, we got a picture of our embryo, got to see it on a video screen under a microscope right before they brought in in to the procedure room, and then saw a flash on a sonogram as they guided the embryo into place

Our baby's first glamour shot - This is the picture of the embryo we received on transfer day.  The cluster of cells on the left is what would eventually develop into a baby.

10 days later I took a home pregnancy test, and we cried tears of joy to finally see two little pink lines!

Unfortunately, we had to continue the butt shots for 63 more days, which a literal pain in the ass added on top of normal pregnancy nausea, but we were, of course, thrilled to finally be pregnant and move past this “trying to conceive” stage.

Since then, there’s been a nagging fear that something will go wrong.  In August, I was convinced that this wasn’t going to happen for us, and despite our joy now, I still can’t completely shake that feeling.  I guess that’s the switch to motherhood they talk about where you never stop worrying about your children. 

I also frequently think about that other embryo.  Eventually, we want to go back to have another transfer, and we’ll be back at a 60% chance of that embryo surviving to become a successful pregnancy.  It’s odd to think that the sex of our second child and many other genetic factors are already determined (if that embryo is successful) – we just won’t know for several years.  Now that we’ve had a success, it’s funny how that completely changes my positivity about only having one embryo left.

Another thing I worry about is eventually telling my child how she was conceived.  Not that I expect that to be an early childhood conversation, but it’s bound to come up eventually.  I hope that when that time comes, there’s less of a stigma around the whole process – I don’t want her to feel like a “petri-dish baby,” which is pretty much what I thought of IVF before I started this process.  Technically, it’s a true statement, but it sounds unnatural and reminds me of the movie Gattaca. 

And now that I’ve written over 2500 words on the topic, I’ll end with just a few summarizing numbers about our journey:
  • Over 3 Years: 38 months, 41 menstrual cycles
  • 43 Office Visits: 6 formal consults, 13 blood tests, 16 sonograms, 3 medication instruction sessions, 4 IUIs, 1 egg retrieval, and 1 embryo transfer
  • 49 Suppositories: not in the butt, thankfully
  • 115 Injections: 21 Follistim, 9 Menopur, 4 Ganirelix, and 81 Progesterone (why is the largest number for the painful butt shots?!)
  • 242 Pills: 20 Clomid, 13 Birth Control Pills (weird right? – this was during the embryo transfer month), and 209 Estrogen tablets
(All that and I know that our journey can be considered "simple" compared with the journey that some people take with infertility.)

Our sharps box was pretty full in the end

  • 12 eggs retrieved (10 mature)
  • 6 embryos (2 survived)
  • 1 embryo transferred
  • 1 pregnancy
  • 1 embryo still "on ice"
That’s our story.  If you read this far, I hope you got something out of it.  If you are currently struggling with infertility, I know there is absolutely nothing I can say that will make it all better.  (Take me as an example: On the day we found out about the embryos that would lead to my current pregnancy, I hit my lowest point thinking it was all over and would never work).  I will say this though: Your story is unique, so no one can tell you definitively what you should do.  While there is no "right" answer for those tough decisions, I hope you can find the right decision for you, and I hope you are able to make a decision that gives you peace.

Baby Hansen is due June 18th 2016.