Infertility Awareness 2019

I guess I keep expecting to have an end to this story, so I haven’t really tried to tell it outside of folks that know all the details and have all along.

I touched on some of it in a bit of a rant awhile back.  In August of 2016 at age 39, after trying unsuccessfully to get pregnant for six months, we were officially diagnosed as “infertile”.  I have mixed feelings on the label now that I understand the broad umbrella that encompasses infertility.  The definition is >12 months of natural procreation if the woman is under 35 and >6 months if over 35.  I think I take issue with the definition because it makes a lot of assumptions and is really based on symptoms, not cause, which is an incredibly challenging way to approach medicine.  This definition assumes a heteronormative story line.  The reality is that folks that end up with the “infertile” label come to it for a variety of reasons.  It could be because they are a couple that lack the necessary genitalia for reproductive sex.  They could have experienced cancer treatment as a child that rendered them sterile.  They could have suffered from a variety of reproductive diseases that have rendered one or more of their organs inhospitable, painful, or downright deadly in the face of reproduction.  They could have knowledge that they carry genetic markers for diseases such as Cystic Fibrosis, BRCA mutations, or Fragile X and want to avoid those fates for their offspring.  Or, they could have simply waited until they found the right person to build a family with and the aging process is against them, like us.

At least that’s where we thought we fell when we started.

We began with a series of standard diagnostic tests which showed that by all indicators we were only facing what is rudely called “Advanced Maternal Age”.  The term has become far less common as the field of reproductive endocrinology advances.  It’s true that women naturally have a decline in both egg quality and quantity that wraps up with the hormonal shift known as menopause, but that same process can occur in women of all ages and catches many young women off guard after being dismissed as “too young” when seeking treatment and diagnosis.  AMA also too easily dismisses the impact of age on male fertility and their contributions to the process.

Before I fully understood the science and data around the odds of pregnancy with lowered egg quality, we underwent three rounds of intrauterine insemination (IUI aka turkey baster).  Each round involved me taking medication to induce my body to super-ovulate, ideally releasing more than one but less than four eggs, and strategic placement of the highest quality sperm in to my uterus.  Unfortunately, IUI was unsuccessful for us, but in reflection it wasn’t very likely to be.  It was really just the warm up for what would come next.

Due to generous insurance, and some financial foresight, we then proceeded to do a total of six rounds of IVF.  Each round took six to eight weeks and involved two weeks of daily injections of hormones intended to recruit the most eggs possible and a surgery to remove them via needle aspiration.  Our results ranged from 8 to 25 eggs per cycle which were quite good results for my age.  The mature eggs (90%) were individually inseminated with a single good-looking sperm and 96% were successfully fertilized as a result.  Then, for each cycle, we patiently waited for lab updates on the state of our dividing cells in the petridish.  After six days we were informed how many had continued to develop and resulted in an embryo, or blastocyst.  We got anywhere from one to six in each cycle.  Following that, the embryos were then frozen to wait.  We opted to have our embryos biopsied and genetically tested to determine their viability.  This is where those age-related factors actually come in to play.  DNA is damaged due to oxidative stress over the years, so my eggs have become broken.  Pre-Implantation Genetic Testing (PGT-A/PGS) allowed us to identify the embryos with so much genetic damage that they would not have resulted in successful pregnancies.  We repeated the entire process six times over, and at the end of 12 months (non-consecutively) we ended up with six genetically normal embryos.  While that sounds like a lot, they still each only have a 60-80% chance of resulting in a pregnancy under normal circumstances.

A lot of infertility is statistics.  It’s really an expensive and heart wrenching game of roulette.  Based on the statistics, six embryos gave us a really good chance at having two children.  Statistically, that should have been the hardest part of the process: getting good embryos.  However, throughout the process of hyper analyzing my body and its readiness for pregnancy we discovered that I have a microprolactinoma.  It’s a benign type of pituitary tumor that is reported to occur in up to 20% of the population.  For most people it never causes any issues and goes undiagnosed.  For those that have impact to their fertility as a result, a simple oral medication can correct the hormonal imbalance it causes.  Unfortunately, I am not like most people, and while my tumor is small and without noticeable effects, medication has not been able to correct the hormonal imbalance.  As a result, my miscarriage rate is approximately 50%.

Additionally, we discovered that I have “thin lining” which is really just a blanket for an endometrial lining that is statistically less likely to result in implantation.  We spent six months trying all the different medical protocols that normally work to improve my lining to the higher probability of implantation but saw limited improvement.  So I have a hurdle to implantation, and once there I have a 50% chance of miscarriage still.

We tried one embryo transfer before realizing the full magnitude of my tumor-caused hormonal imbalance, when we thought my thin lining was the only hurdle in our way.  That transfer resulted in implantation (success!) but a phenomenon known as a blighted ovum.  Effectively we were pregnant, albeit briefly, and even after the embryo failed to thrive, my body continued to respond and prepare as if the pregnancy was viable.  All indicators were that we were successfully pregnancy, until we found out that we were not, and had not been for nearly a month.

Infertility is full of a lot of horrible choices.  I must decide to try procedures, or even embryo transfers in the face of crappy odds while hoping we fall on the good side.  I must decide if the costs outweigh the benefits of additional testing or elective procedures.  I must decide how to best complete the end of my pregnancy, whether it’s to miscarry naturally, to use medication to encourage my body to expel the remains, or whether to have surgery to remove the remains.  The medication doesn’t always work, the natural miscarriage can be unpredictable and emotionally scarring, and the surgery itself can cause irreparable damage.

All of this sounds so succinct and quick when written out, but it’s been a series of emotional and physical roller coasters over the years.  I’ve become deeply involved with an infertility support group, made friends, and spent a lot of time in therapy and on anxiety medication through the ups and downs.  Some days it’s hard to just get out of bed and put one foot in front of the other.  Other days I’m so optimistic that it’ll work out.  We are now two and a half years in to this journey and I feel like building our family is no closer than when we started.  If anything, it feels even farther away because now we know most of the hurdles in front of us and some of them simply can’t be fixed.

We still have five embryos to try.  They are effectively frozen in time by way of being physically frozen, but my age still marches on and with it I have had to confront that age discrimination is a thing in reproduction.  Not only does society judge harshly older women having children, but the same judgements come to bear in determining if parents are suitable to adopt.  We’ve never had a strong objection to adoption as a means of building our family, but it is not statistically the most cost-effective path.  For example, that generous insurance covered more than 100k in fertility treatments, but the same generous company would only cover 10k in adoption costs and a single round of adoption costs are estimated at 100k as well.

Our current plan is to continue to work with my stable of medical professionals to see if we can improve our odds of success and, failing that, to try an embryo transfer anyway.  We’ve also begun the process of investigating the option for a gestational carrier and giving my body the break it arguably deserves after everything I’ve asked of it in the last 2.5 years.

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