Congenital Hypopituitarism: Alison’s Story [SUCCESS]

August 20, 2018

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Today’s success story is about a woman named Alison. She is a 36-year-old occupational therapist who enjoys [reading, traveling, hiking and walking her dog. Because she has a congenital condition that prevents her pituitary from functioning, she always knew she’d need medical help to build her family. So, when she and her husband were ready to start trying, they headed straight for a reproductive endocrinologist. Initial testing revealed no additional diagnoses, so she began estrogen priming for a timed intercourse cycle. Unfortunately, she hyperstimulated and the cycle was cancelled. Their second attempt ended with the same result. So, it was time to move on to IVF. Join us to hear how Alison’s IVF cycle resulted in only one embryo to transfer, which ultimately became her son.

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What you’ll hear in this episode:

  • Before infertility, Alison was shy, private, and hard to get to know, and infertility was a part of her she had known for a long time
  • How she met her husband after a mutual friend set them up for their first date at a coffee shop
  • As a couple, they complement each other: she’s more impulsive and negative and he is more rational and optimistic
  • She has always loved kids and was a teacher because she could relate to kids and enjoyed their company
  • Why she always looked for jobs with good security, flexibility, and good health insurance
  • The first RE visit in 2015 and testing before starting priming with estrogen for a timed intercourse cycle, which had to be canceled due to overstimulation and too many follicles
  • Changed meds for the 2nd TI cycle in 2017, which yielded the same result and was canceled
  • With subsequent genetic screening, Alison tried acupuncture, herbal teas, Tai chi and yoga, because she needed to do something different
  • Why they paid out-of-pocket for an IVF cycle rather than stay on the long wait list
  • With 3 follicles, they only had one embryo to transfer in June 2017 and had success—their son was born prematurely and is now 5 months old
  • With Alison’s congenital condition, her pituitary doesn’t function, so her body doesn’t produce normal hormones
  • She was small as a child because of the lack of human growth hormone
  • Being put on several hormones and had induced puberty at age 14, with birth control pills to force a cycle
  • How Alison dealt with the hard reality of knowing having children may not ever be possible
  • The impact of her condition growing up, being dependent on medications
  • How they selected the fertility clinic because it was the only one nearby
  • Why they were not happy with the clinic and didn’t feel comfortable or have a good rapport with the doctors
  • Why they will choose a different clinic if they decide to have a 2nd child
  • Dealing with the frustration of two timed intercourse cycles with the same result
  • What Alison thinks about the possibility of a 2nd child
  • Why in a new clinic, they will be looking for a system in which the RE is YOUR doctor so patients don’t feel like numbers being juggled around, open communication, and possibly a specialty in pituitary issues
  • Healthcare funding in Ontario: how one round of IVF is covered, but with a long wait list, and some drugs are covered, but not fertility meds
  • Why Alison had less hope initially, because she wasn’t “in a good place,” but her husband was more optimistic
  • A positive moment in reaching out to others and using social media for hope and comfort
  • Alllison’s relationship with her husband didn’t feel a lot of strain, because they were prepared for the issues; they became closer and have more understanding
  • In relationships with friends and family, Alison was private and didn’t share much with family, and she shut out some friends that she has since reconnected with
  • How infertility has changed Alison: “It’s changed me a lot. I’m more of a self-advocate now. I have a lot more trust, respect, and pride in my body. I’m more empathetic, too.”
  • Alison’s advice to herself back then: “To quote Bob Marley, ’You never know how strong you are until being strong is your only choice.’ You are strong enough and you have no idea how much you’re capable of. Don’t be afraid. You can do this. Start now.”

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