You have what now?!

By Laurenne, Panhypopituitarism, Hypogonadotropic hypogonadism, New Zealand, February 10, 2021

Laurenne in Wellington

Hello to everyone reading this, my name is Laurenne, and I was born with congenital Panhypopituitarism (CPHP), and Hypogonadotropic hypogonadism (HH)

It briefly means that all the hormones that a functioning pituitary gland puts out, mine does not.
In fact a MRI in 2012 showed that my pituitary gland has pretty much shrunk due to inactivity.

The hormones made by the pituitary gland include:
Growth hormone (GH)
Adrenocorticotropic or stress hormone (ACTH)
Thyroid stimulating hormone (TSH)
Gonadotropins or puberty hormones (LH/FSH)
Melanocyte stimulating hormone (MSH)
Antidiuretic or water hormone (ADH)
Oxytocin
Prolactin

 

It was a condition that was rare back in 1982 when I was born, that it took around 18 months for me to get fully diagnosed with it! 

I’ve never even met or talked with another girl with congenital Panhypopituitarism!
It was because of this reason above, and a Instagram post recently made by the inspiring Morgan Harper Nichols, that has made me delve into trying to chat to people with it, and to share my story.

 

Anyway, while I was undiagnosed, they were able to see that I was deficient in certain levels from blood tests, so my Specialist was able to put me on Hydrocortisone and Thyroxine pills, which I’ve taken daily ever since.

But as I had not being growing, due to my pituitary gland not putting out any natural Growth Hormone, I started taking daily Growth Hormone injections.

Thankfully, these injections grew me from what could’ve been a permanent miniature frame, into the 153cm body I have now, over 14 years.

I am still a shortie, but atleast I cracked 5ft exactly!

The needles were quite threatening to start with back in those years - around 1 inch, and I learned how to give it to myself at age 4. They’re a lot smaller these days!

 

At puberty time, (I think around 13yo) I was put onto Provera & Trisequins pills to mimic the hormones that I missed out on.

I haven’t always been the best with my medication, it’s a woe-is-me tale, but when you take medication and injections every day you get a bit sick of it, and want to rebel from the effort.

So for some parts of a year when I was 12-13, I squirted the injection solution out my bedroom window into the garden below. I didn’t check to see if the plants grew instead!

I felt guilty about it eventually, and when I told mum what I had been doing, she couldn’t even speak to me.

Needless to say, that would’ve been a big growing time for that age, but that year it was a plateau line in my growth chart.
The chart plateaued again at age 16, but from natural processes that time!

Boy, you don’t know the gravity of the things you do when you’re younger than when you’re a mature adult.

Taking period pills can make bones stronger, as hydrocortisone can deplete bones slowly. Sometimes, I would skip taking these period pills, as it was handy to not get periods while travelling, which I would elongate to being back at home too.

I have Osteopenia possibly as a result, or I think it certainly contributes.

 

In 2014, I thought that having my own children would be tricky with my condition. Perhaps taking injections to boost egg quality, or IVF etc. But unfortunately not, as my AMH (Anti-Mullerian Hormone) level was 0.02, which indicated basically no eggs.

It was an overwhelming sadness that I couldn’t have a genetically related child, and pass on the DNA that made me me, and the DNA from my mum and family members.  It was a knock out punch.

 

My husband and I then were referred from the hospital to a fertility clinic in Wellington, and we were told that egg donation could be the next best thing for us.

At those early fertility appointments, I felt like I wasn’t really taking in too much information, or ready to do the process as fast as possible.

It took me a few years to adjust to the new reality, and grieve the loss of not having my own genetically related child/ren.

My husband has been incredibly supportive with all the emotions that go with that, and says that nurturing the child is just as important, if not more, as it’s genetic nature.

 

I’ve only very recently found out the diagnosis for my infertility, and so I’m doing more research into it: Hypogonadotropic hypogonadism.

This is where I have inadequate function of the ovaries, with impaired production of eggs and sex hormones, due to my pituitary gland not secreting those hormones.

No matter what mistakes I made growing up, I would’ve always been in this predicament, as I never produced many eggs right from my word go.

 

Last year in 2020, we met a kind and generous woman who said she would love to help us via egg donation, and we successfully had 8 embryos come from that effort!

And we are due to transfer one of them into my uterus at the end of the month (Feb 2021), so fingers crossed it works out!

 

It is hard to share all this; the loss, and my vulnerability. But there aren’t too many people out there with what I have, so if I bring hope and information to one person in a similar position, then that's awesome!

Many thanks to those reading this, and hugs for everyone who are in challenging journeys themselves!

If you want to follow more of my journey or reach out, I have a blog: https://www.justexploren.com, or Instagram: @justexploren

 

*Find others with Hypogonadotropic hypogonadism on RareConnect, the online platform for people affected by rare diseases

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