Macroprolactinoma Symptoms: Why My Pituitary Tumour Was Misdiagnosed As Menopause For Years

You know your body better than anyone – but what happens when no one listens? Welcome to Ms Diagnosed: a HuffPost UK series uncovering the reality of medical gaslighting. With new stats showing that 8 in 10 of women have felt unheard by medical professionals, we’re sharing the stories of seven whose lives were nearly lost to the gap between their symptoms and a system that refused to listen. As the UK introduces Jess’s Rule – a new mandate for GPs to ‘rethink’ after a third visit – we’re exploring why the medical system is still failing women and how we can start to fix it.

The GP folded her hands between her thighs, spun round in her chair and gave me a deeply patronising look.

“I think you’re a bit stressed, love,” she said.

I couldn’t believe what I was hearing; I knew my symptoms were down to far more than stress.

As it turned out, I was right. I wasn’t stressed; I had a brain tumour on my pituitary gland, known as a macroprolactinoma. But despite going to my GP repeatedly with increasingly unnerving symptoms, I had been told – again and again – that I was just going through the menopause.

My symptoms started in March 2011, when I was around 34. I started getting really heavy periods that were soaking through pads, tampons and even my jeans; but then, all of a sudden, my periods completely stopped.

After around four months with no period, I went to my local GP surgery where I saw a nurse who told me to give it until six months before taking further action.

So I did; but in those next two months, my hair started falling out. Whenever I’d brush it, my hair would completely fill the hairbrush.

Then, things started getting really strange.

That summer, I went to Cardiff on the train – and for some reason, I couldn’t stop worrying about where to sit in case the train tipped over onto one side.

I was completely paranoid and panicking all the way there. I couldn’t understand how everyone else in that carriage had been able to sit down without a second thought.

It was bizarre; but I put it out of my mind and went back to the doctor’s about my missing periods.

I had a blood test to check if I’d gone through the menopause, and the results said no further action was required. I was adamant that that wasn’t the end of the story, though – periods don’t just stop for no reason – so I booked to see the GP.

“I think you’ve gone through the menopause,” she said. “Even though the blood test says you haven’t, it’s not always correct.”

So I went away; but then, I started having issues with my memory.

Once, for example, I was watching Barack Obama speaking on the news; and I could not remember his first name. I knew who he was; I just couldn’t place the name. I scrolled mentally through the alphabet; nothing. I Googled him and thought: “Oh. Barack. I’d never have come up with that.”

I went back to the GP again. That was when she told me I might be “a bit stressed”.

I had no choice but to leave again; but the memory issues continued, so I booked yet another appointment.

“You’ve been having a lot of appointments recently,” the receptionist said to me. “Are you sure they’re all necessary?”.

I started to feel like a pain. Then I thought: “No, I want to get to the bottom of this” – because by now, things were getting scary. I’d recently found a denim jacket in my wardrobe and had absolutely no idea where it had come from. My daughter told me I’d bought it when we’d gone shopping in Birmingham; but I didn’t even have any recollection of going to Birmingham.

So I went ahead and I booked my appointment. While I was driving there, I approached the roundabout; and I had absolutely no idea which way round to go.

I realised I wasn’t only a danger to myself. I was now a danger to others, too.

When I got to the GP’s office, she still seemed incredibly smug. I told her what had happened at the roundabout, and she said, “Well, this is just part of the menopause”.

“It’s not,’ I insisted. ’There is something else going on. I’m not exaggerating; this is not right. It’s not right. I want a second opinion.”

In the end, she agreed to refer me to a gynaecologist – because menopause was still suspected to be the root cause of my symptoms – and I paid to be fasttracked. By now, I was terrified.

I told the gynaecologist everything, and he asked me if I’d ever had a prolactin test.

“My memory isn’t very good – but I don’t think I’ve heard that word before,” I said, carefully.

He sent me to the blood unit that very day to get my prolactin levels checked; and then, at 8:00pm that night, he phoned me at home. “Your prolactin is very, very high; and I think that means you’ve possibly got a brain tumour,” he told me. “I’d like you to come back in for an MRI.”

I felt utterly numb – but gradually, it dawned on me that I was single and had a 14-year-old daughter. I’ve never felt so alone or scared.

The MRI confirmed the diagnosis; I had a brain tumour. The doctors suspected it was benign, but they couldn’t be sure until I had my first surgery to try and remove it.

That surgery confirmed that it was, indeed, benign; but ‘benign’ doesn’t mean ‘fine’. It means the tumour is less likely to progress around the body, but the tumour I have is still aggressive and life-limiting. My quality of life is not what I expected it to be at 49. I can’t do exercise; I can’t cook meals; I can’t drive; and I struggle to hold conversations for more than 30 minutes.

Once, I went to talk to my partner and all I could say was something about a swimming pool, which wasn’t what I meant to say at all.

I’m still so angry with that GP. If the tumour had been found sooner, it wouldn’t have grown so big – the type of tumour I have is aggressive and fast-growing. By now, it’s managed to spread itself further than my pituitary gland; including growing near an artery and my optic chiasm, which makes it much harder to remove.

I’ve had four surgeries, chemotherapy and radiotherapy (twice, ten years apart); but the tumour keeps re-growing, albeit a little slower since the chemotherapy. But I can always tell when that’s happening.

After the first surgery, my periods did come back; but then, two years later, they stopped again. Another time, my memory became very strange again; a third time, I experienced more hair loss; and most recently, I had extreme tiredness.

I’ve been told there is one more surgery they can try; but that surgery will make me blind in my right eye.

Equally, though, I now appreciate life so much more than I ever did before. Without the tumour, I never would have started my own business; and even though I went to a very dark place last year, after the chemotherapy, I still have hope. You never know what could be around the corner.

These days, I just want to raise awareness of both my condition and the need to advocate for ourselves. While most GPs are incredible – including my current GP – we know, intrinsically, if there’s something wrong in our bodies. We need that tenacity to say, if needed, ‘I need an MRI’, or ‘I need a second opinion’.

And if, like I did, you feel like a pain – remember, it doesn’t matter. You just need to push, push and push in order to get the answers you need.

For more information and support, visit The Pituitary Foundation.