A male GP dismissed my pain. It took 17 years to uncover the truth

My journey has been a difficult one

Picking up the phone with shaking hands, I dialled 999.

‘Can I please have an ambulance?’ I gasped.

I had already been sent home from hospital the previous week, and told to manage my pain with painkillers.

It was normal for endometriosis, I’d been told, and I just needed to see yet another specialist. Medical professionals had been telling me this for over 10 years.

But in my decades of suffering, I’d never known agony like this.

I was crawling around on my hands and knees, throwing up and passing in and out of consciousness. I could no longer stand it.

Sadly, this is what women with endometriosis have to endure. We are forced to suffer from heavy periods, painful cramps, bowel issues, fatigue and limited mobility while we wait for help.

I lost touch with friends, because I could not commit to plans

My journey has been a difficult one.

I was raised by my single father and I remember his then-girlfriend sitting down with me and explaining what a period was.

Still, I wasn’t prepared for just how painful, or heavy, they would be when they started when I was 13 years old.

I remember talking to people at school who claimed their periods were uncomfortable too, so I presumed it was normal.

When I was old enough to go to my doctor alone, he told me I was just having a ‘painful period’. Who was I to question this?

I was given various hormone treatments over the course of several years (Picture: Evelyn Scott)

Yet, my periods only grew worse, leaving me collapsing in pain and having to take weeks off college and university. These doctors’ visits became a frequent occurrence.

It seemed I would always end up with a male doctor, who appeared uncomfortable discussing women’s issues and in a rush to get me out of his office.

They all knew exactly what a woman’s period should feel like. They knew better than me.

Life became progressively difficult. I had to drop out of university because the pain was unbearable.

I became unreliable because my pain was unreliable.

I had to take one day at a time, while trying to live a normal life. It seemed impossible.

I became unreliable because my pain was unreliable

By this point, it was having a detrimental effect on my mental health too. I started to hate my body and what it had done to me.

I had dreams of becoming a best-selling author, and travelling the world, but, as I was left unable to get out of bed for days at a time, they all seemed so unattainable.

I lost touch with friends, because I could not commit to plans. On a good week, I left the house two or three times, but it was not unusual for me to go seven days without getting out of bed. I couldn’t date.

In the midst of this dark time, I was admitted to A&E again, after not sleeping for days because I was in so much pain.

I was just approaching my 30th birthday, and had returned to university, but I wasn’t expecting to be back for long.

I was crawling around on my hands and knees, throwing up and passing in and out of consciousness

Another male consultant walked in, and as he went through the routine assessment I prepared myself to be dismissed again. 

Then, to my surprise, he told me that he suspected that I had endometriosis. My world went very still for a moment, and I remember wanting to cry.

I’d heard of endometriosis – where tissue similar to the lining of the womb grows in other places, like the ovaries and fallopian tubes – but presumed I would have got a diagnosis long ago if that was what I was suffering from.

He was the first doctor to ever see my suffering.

Current gynaecological waiting times highlight how much work needs to be done for women’s health in this country

Sadly, that was not the end of my journey.

I was given various hormone treatments over the course of several years but unfortunately, they did not work.

Against all the odds, I still managed to complete my studies, and worked as an academic researcher for the University of London until increasing pain levels meant that I could no longer commit to working the hours required.

I had to quit aged 31.

My world went very still for a moment, and I remember wanting to cry (Picture: Evelyn Scott)

I was then offered keyhole surgery to remove the tissue. It was an extremely painful operation – one I’ve had three times over two years – but the endometriosis keeps growing back.

A hysterectomy is the final option for endometriosis, which removes the organs the endometriosis grows upon. I felt relieved to learn this was possible, although the doctor warned me it would mean that I could not have children of my own.

I was in so much pain that fertility had not even occurred to me, but I know I could not be a good mother while afflicted with this terrible disease.

I have been on the waiting list for over two years

I agreed, because I just want the pain to end.

Yet, I was told that the NHS currently has over a thousand women on its waiting list for this procedure, with many waiting over a year. I am one of them, having been on the list for over two years.

In the meantime, I am forced to continue to live with heavy periods and a devastating amount of pain.

I am 36 now, and have no job. It is thoroughly disheartening.

I still managed to complete my studies (Picture: Evelyn Scott)

I often wonder if I should start paying rent in the local A&E units because I’m sent there so frequently, where I wait for anything between four and 12 hours to be seen.

Current gynaecological waiting times highlight how much work needs to be done for women’s health in this country.

Women are not the government’s priority, and so we are forced to suffer in silence.

It is not normal for a woman of my age to live on a cocktail of drugs merely to get through each day, but that is the my reality, and that of many other women. Enough is enough.

With no surgical date in sight, I am planning to go private and self-fund >my hysterectomy. I cannot simply do nothing while my body continues to deteriorate.