Unexplained Infertility & Recurrent Loss: Amy’s Story [JOURNEY]

July 30, 2018

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Today’s journey story is about a woman named Amy. She is a 35-year-old post-doctoral research fellow who enjoys traveling, cooking, and shopping at the local farmer’s market. After about a year and a half of trying to conceive, Amy and her husband headed to a reproductive endocrinologist, only to learn that she was already pregnant with twins. Unfortunately, they discovered a few weeks later that both gestational sacs were empty. All test results came back normal, so they started with medicated IUI cycles. After two more miscarriages, they moved on to a new doctor, who recommended IVF with PGS testing. However, Amy once again learned she was unexpectedly pregnant, followed shortly by her fourth miscarriage. Join us to hear how her first frozen transfer of a PGS normal embryo resulted in her fifth miscarriage — and what’s coming up next in her journey.

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What you’ll hear in this episode:

  • Amy lives in NJ, near Philly and NYC; she loves traveling into NYC and restoring their old house
  • Before infertility, she had a work hard/play hard mentality and was less stressed, more naive, and clueless about miscarriage
  • She met her husband in 2002 when they both worked at a NYC TV show; she fell for him quickly and they married in 2009
  • As a couple, they are solid with a strong bond; they support each other and complement each other
  • With the first loss, they both realized how much they wanted to be parents
  • How many career and work travel choices have been impacted by treatment: “Our lives are permanently on hold.”
  • A total of five pregnancies and five miscarriages, with an “unexplained recurrent pregnancy loss” diagnosis
  • They went straight to an RE in January 2016 and found out they were pregnant with twins, but weeks later, the gestational sacs were empty due to “blighted ovum”
  • After a D & C, Amy flew to CA to see an Ellen taping and remembers wondering how everyone could be laughing
  • At their next RE visit, they were told it was just “bad luck” and their tests were normal
  • In June 2016, she had the first IUI on her birthday, not knowing several more would follow
  • Later that year, a chemical pregnancy occurred and a second miscarriage
  • In January 2017, a third pregnancy, another empty sac, and another D & C
  • Why they switched to another RE, who gave another “bad luck/you’re young” diagnosis
  • They were put into a shared risk financial program, which guaranteed their money back if they didn’t “bring home a baby” after a specified number of IUI cycles
  • In March 2017, they were pregnant again, then a fourth pregnancy, a fourth miscarriage, and they booked a trip to Spain as they rallied for IVF
  • A few weeks later, 15 eggs were retrieved and three embryos were PGS normal and frozen
  • As Amy struggled to thicken her uterine lining, she went to an acupuncturist and then learned her mother-in-law had cancer
  • In August, 2017, they transferred a PGS-normal embryo and learned that the pregnancy wasn’t viable, which led to the fifth miscarriage and another D & C
  • The big turning point and the decision to shift to adoption, because the ultimate goal was to have a family
  • In February 2018, her mother-in-law came to live with them in hospice care for her last three days before she passed away
  • Why they saw a geneticist but received no answers or additional information
  • Now they are prepping for the next embryo transfer with the two remaining embryos, one at a time
  • The dilemma: They MUST transfer both remaining embryos to get their shared risk money back so they can use that for adoption, but they know they are potentially facing two more losses
  • Why Amy researched the job of a miscarriage doula and what services they offer
  • Now, they are in the middle of IVF and the adoption process and say, “The journey is not yet over”
  • What Amy wants you to know about recurrent loss: “The hardest part is not knowing the reason. With each loss it gets harder, not easier. A positive pregnancy test is very different for someone with recurrent loss.”
  • The most helpful things for Amy were finding shared friendship with others and how her friend Scott “just showed up” to help, even though he didn’t know what to do
  • The least helpful things people say are: “At least you know you can get pregnant” and “Why can’t you just adopt?”
  • How she researched topics related to her journey but still has no explanation
  • Dealing with expectations vs. reality: “The key was finding people who are like me”
  • Finding support and community when she knew her fertility was out of her hands and out of her control
  • How Amy lost hope and then regained it almost daily
  • “Other people may find joy in this, but it’s been a giant sh*tshow for us. None of this has been fun.”
  • Balancing work and treatments due to flexible work schedules and a delicate balance of figuring out how much detail to share
  • Insurance covered all diagnostic tests, all IUI’s, and D&C’s, but not IVF. They used a big loan and some inheritance from her mother-in-law to finance the rest.
  • How their relationship has grown stronger as they know they can face anything together
  • How her relationships with friends and family have changed some, as they have distanced themselves from people with kids in their social network
  • As a natural self-advocate, Amy is never afraid to go to the doctor with a list of questions
  • Amy’s #1 tip for advocating: “Get involved with your local Resolve support group”
  • Next up for Amy is a lining check and the first embryo transfer of their two remaining ones

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Thanks for listening!

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