Endometriosis Awareness Month: A sufferer shares how the condition became life-threatening

To coincide with Endometriosis Awareness Month, which runs throughout March, 22-year-old Emily Griffiths shares her life-threatening battle with endometriosis. Yet, before this health emergency, she was told by doctors that she was being “dramatic”. In this account, she tells her story and brings visibility to how severe the condition can get.

As soon as I got my first period at 12 years old, I knew something wasn’t right.

Alongside terrible back pain, the flow was unbelievably heavy and totally uncontrollable. I’d wear multiple pads at a time, and it still wasn’t enough to really keep me protected. Eventually, the amount of blood I was losing led to anaemia. I was exhausted, terrified and barely even a teenager.

My mum took to me to see my GP who immediately put me on the progestogen-only pill (‘mini pill’) that stops your periods altogether. This worked for a while, except the mood swings were horrible. I became depressed. After four years, I decided enough was enough; that there must be another way. So I came off the pill.

And then my period came back. The pain – excruciating, not like anything I’d ever experienced before – literally took my breath away. I collapsed to the floor in agony.

After looking up my symptoms online, I suggested to my GP that it could be endometriosis, but it was shrugged off. Eventually, after months of pestering, I was referred for an ultrasound – but endometriosis doesn’t show up on scans, so the results came back clear.

Doctors told me I was ‘trying to find answers that weren’t there’, that I was being dramatic. That they were more concerned about my mental health; basically, that it was all in my head. I was prescribed antidepressants (which of course, I knew I didn’t need). I had more mental health referrals than I had scans on my ovaries.

From then on, I was petrified of my period and the unbelievable, crippling pain it would bring every month. But I just tried to get on with it, and I even started to wonder if the doctors were right; maybe it was all in my head?

Then came the August bank holiday weekend in 2019. On Friday evening, the usual pain started to set in and I stopped being able to pass urine which I thought was strange, but I’d just got used to telling myself to get on with it.

But by Monday, I was in a level of pain I’d never felt before. I couldn’t stand. I fell to the ground unable to breathe and desperately called out for my parents. Soon, all I could hear was my heart racing and everything started to fade out of focus. I remember saying, ‘Dad, I think I’m dying’.

My mum called an ambulance but because of the bank holiday, they said there would be a four-hour wait.

‘I’m not going to make four hours, they need to come now,’ I said.

The paramedics turned up shortly after and rushed me to the ambulance, saying that my blood pressure was dangerously low, and that’s the last thing I remember.

After a week in hospital on strong IV antibiotics, an MRI finally diagnosed a seven-centimetre endometrioma – a cyst on my ovary – that had essentially fused my organs together and become dangerously infected. The doctor told me that if I hadn’t come to hospital when I had, the sepsis likely would have killed me.