Jessica has prolactinoma and shares her fertility journey so far

We recently posted a feature on prolactinoma, a rare condition linked to infertility and have been overwhelmed by the response. We have received many emails and messages from women who have been diagnosed and thanking us for highlighting it.

We heard from Jessica, who was keen to tell us her heartbreaking fertility story so far…

My name is Jessica and I have a macro prolactinoma. I am 33-years-old.

I got married in July 2016 and upon return from our honeymoon to Australia later that year, my husband and I decided that after nine years together we were ready to start a family.

I had been on the contraceptive pill for several years so stopped taking this immediately, however my periods did not return at all in 2017. I thought I was going through the early menopause. I visited my GP surgery twice that year and eventually they took blood to test my hormones. The results showed elevated prolactin levels of 22,958.

I was referred to meet an endocrinologist at my local hospital who arranged for an MRI scan and I was diagnosed with a macro prolactinoma in January 2018. My endocrinologist immediately began treatment by prescribing Cabergoline. I took it for eight months before getting my first period in August last year (2018).

Within these eight months I was contending with learning about a condition I’d never heard of tolerating an aggressive drug I was taking twice a week and the side effects that came with it, which included tiredness, nausea, weight loss, a drop in blood pressure and dealing with pressure from loved ones on when I’ll be having a baby.

Joy and heartbreak went hand in hand over the winter of 2018 and into 2019

After having a couple of periods we were lucky enough to fall pregnant naturally in November 2018. An absolute miracle and we were over the moon. But sadly, our world came crashing down the night before our 12-week NHS dating scan when I started bleeding a lot and we miscarried. I felt so many emotions, upset, anger and anxiety.

Our journey continued when we fell pregnant again a few months later in April 2019. We genuinely couldn’t believe it. So much so that we paid for an early private scan, but were destroyed again to discover the foetus did not have a heartbeat – known as a ‘missed miscarriage.’ Having a second miscarriage so soon was not any easier – and it required medical intervention which made it somehow more painful physically and mentally.

I’m now in a much better place and my endo is convinced that my prolactinoma has had no effect on the miscarriages to date. He is trying to evidence this through a number of tests. I’ve also moved onto Bromocriptine now as this is a safer, older drug and backed up by more research than Cabergoline. So far, I tolerate this drug fine.

2019 has been an emotionally rollercoaster for my husband Jamie and me. We’ve had the highest of highs and the lowest of lows. I’m optimistic about the future and what 2020 might bring. Our fertility journey continues.

Do you have a similar journey to Jessica? Or do you have a condition that you feel needs highlighting? We’d love to hear your story, email us at mystory@ivfbabble.com

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