I was diagnosed with a Prolactinoma 7 years ago. I lactated for years before diagnosis, going to doctors several times asking ‘why were they lactating?’

 I had a breast screening and the doctors concluded it was just one of those things…

Years later I wanted to have another child and I just could not get pregnant. I went to the doctors where they eventually sent me to the fertility clinic. They looked a bit further into why I wasn’t getting pregnant and found I was not ovulating. I suggested if it could be me lactating, the consultant didn’t send me for an MRI. Instead they just put me on Cabergoline tablets until I ‘hopefully’ fell pregnant.

Whilst I was taking these tablets, the side effects were horrendous. I felt so sick, I rang my GP to see if there was an alternative. They asked why I was on them (Cabergoline) and I stated if it was because my lactation was stopping me from getting pregnant. My GP then asked if I had been sent for an MRI to which I said no.

He just said “well you should of as you could have a brain tumour” …

To which you can imagine the panic I felt. He told me it would probably not be cancerous but wanted to know.

He wanted me to ask my fertility doctor to send me for an MRI and if they wouldn’t, the GP would.

So, I rang the doctor and he said that if your GP thinks I need the referral, then they need to refer you. We were going around in circles and as you can imagine I felt passed around.

I went back to my GP who immediately referred me and I was so disappointed in how the fertility doctor had treated me. So, I went private.

I was so anxious when the consultant did a dye test for the MRI, they then diagnosed it a prolactinoma.

I was constantly monitored and I soon fell pregnant, with twins! My endocrinology told me that giving birth can be complicated with the risk of Sheehan’s Syndrome, but my Antenatal consultant told me there was nothing of concern.

There was no communication between the consultants, even after stating my worries. I was also expected to let my endocrinologist know when I was in labour.

Needless to say, I found this to be ridiculous given the fact that both consultants should be working together and not left to the patient. What if I was too poorly?

When I gave birth, I did have Sheehan’s Syndrome and a bleed on the brain yet none of the doctors at the time knew who were caring for me. Luckily, I knew and told my husband to ring my endocrinologist.

They sent a member of his team and immediately put me on steroids otherwise the worst could have happened and I would have died.

 However, none of the maternity team knew about my condition and took me off steroids…

Being told I could die without the steroids and then being taken off them, I was so upset and feeling very worried about my life, especially after giving birth to two beautiful girls.

I questioned if I would be around for long.

I wanted to share my story to bring awareness and ensure other women don’t suffer, or even die as a result of some consultant’s lack of knowledge in something as important as this.

If you have been affected by this story and would like more support please contact our Information and Support Helpline.