Endometriosis: BBC presenter shares her story on living with condition

More than 1.5 million women in the UK are believed to have endometriosis. The symptoms of the gynaecological condition can include painful periods, nausea, extreme tiredness and infertility. But recent research suggests it is taking longer than ever for women to get a diagnosis. BBC Sheffield’s Ellie Colton shares her story.

I started my period at 11 and it lasted for two weeks.

I was in excruciating pain but I thought nothing of it – it hadn’t happened before so to me this was normal.

Twelve months later when I was in Year Seven, a science teacher told me a period should actually last for between three and five days.

When I asked “what if it lasts longer?” her response was “it shouldn’t do”.

Since then I’ve learnt a lot about endo – I’ve had to. It’s been part of my life practically every day since.

If you don’t have it, then you know someone who does. About one in 10 women will suffer with it, studies say.

The thing about so many people having something should mean that it’s well known and easy to identify and treat.

It was eight years, now it’s eight years and 10 months – yes, the best part of a decade.

My story is a common one. It took me years to get the right help.

When I was 15 I got diagnosed with coeliac disease – a condition which causes bloating, chronic fatigue, brain fog, dizziness, sickness, hot flushes, rashes, abdominal pain, joint swelling and back and leg pain.

But I knew something else was also wrong with me.

I switched to a gluten-free diet but I still felt horrendous every day.

In the end I had to do my own research and when I put my symptoms plus heavy, painful and long periods together endo was the only diagnosis I could give myself.

Hopeful of answers and treatment to take the pain away, I went to the GP.

I was prescribed the pill to “manage my symptoms”.

This is a shared experience throughout the endo community – those diagnosed just get contraceptives and hormone therapies rammed down their throat.

But for the majority of people, myself included, it doesn’t work, it feels like a way of making us go away rather than our condition.

As I got older my symptoms didn’t improve.

In response, I tried the mini pill, the combined pill, coming off contraception and then the IUD implant. Nothing worked – if anything, it made my symptoms worse.

During this period I genuinely have no idea how I had the energy to walk up the stairs. It left me empty.

You might wonder “why didn’t you get it taken out?”. I tried but the GPs kept sending me to the sexual health clinic, saying my bleeding must be due to an infection.

By the time I was 19 I was absolutely burnt out by my symptoms.

Dismissed by doctors, not referred to endo at the hospital, told to go back on the pill – whilst I had my IUD in – to manage my bleeding. I was pumped full of hormones and feeling worse than ever, with no clarity.

I knew I had endometriosis, but no-one believed me.

I went back to the GP when I was 20 and I said I wasn’t leaving until I got referred to gynaecology at the hospital.

I never believed I’d be dismissed there too – but it happened. I was given an ultrasound and told me I had some cysts on my ovaries, but this was normal, and it was unlikely I have endometriosis.

The only way to get a diagnosis of endometriosis is with a diagnostic laparoscopy, where a surgeon examines you using a keyhole method to see what’s going on.

I was put on a waiting list. I was living on painkillers, peppermint tea and had permanent burn scars on my stomach from pushing a hot water bottle on it every night.

In September 2022, I had my operation. Guess what they found?

It showed I had Stage 3 endometriosis – there are four stages, Stage 1 being a small amount and Stage 4 being the most there can be.

I was told I had something that no-one wants yet I was so relieved I burst into tears when the surgeon told me. They even had photos to show me.

Endometriosis looks like little brown spots and I had lots all over my womb.

During the surgery I had a procedure called ablation, which is where they try and burn as much endo off as possible.

But there is no cure for the disease, and it grows back.

Post-surgery I was told I could have the IUS or Mirena coil, which releases hormones into the womb, to manage symptoms, be put into temporary menopause, or consider a hysterectomy.

As a 25-year-old woman, I was gobsmacked those were my choices. I declined.

I interviewed Madeleine Lake, also from Sheffield, about her endo as part of my work at the BBC.

She’s a young woman like me and she started having symptoms when she was 13 – with a year-long period.

She told me how it had affected her as she grew up: “I’ve had really severe abdomen pains, back pain, pain during sex, and feeling extremely fatigued when I’m supposed to be on my period as well.

“People don’t believe you. People dismiss your pain and they blame it on things like your weight.

“I’ve had this problem when I was underweight, I’ve had this problem when I was a normal weight, and I’ve had this problem now, and over time it just gets worse and worse.”

The charity Endometriosis UK is calling on the government to commit to a diagnosis waiting time of a year or less by 2030.

CEO Emma Cox says: “If you’re in chronic pain, it can be debilitating for some people and you’re being told it’s in your head, you may be a bit of a wuss or you have to put up with it, and you’re told that for the best part of nine years.

“It has a real impact on your mental health as well as your physical health because of course you’re not being believed, you think maybe, ‘is it in my head?’

“If you’re having to miss school or work, if you’re maybe having to miss your best friend’s wedding because you can’t get out of bed and everyone just thinks you’re being a bit of a wuss, you can imagine the toll that can take.”

She says that the NHS should implement the guidelines already in place on diagnosis and treatment as well as realising the scale and severity of the issue.

“Menstrual health conditions like endometriosis just aren’t prioritised, they’re not seen as serious, so there’s not enough time scheduled to support people with the disease yet as we’ve said they can have a really devastating effect,” Emma adds.

In a statement, Minister for Women’s Health Strategy Maria Caulfield told the BBC: “Through the Women’s Health Strategy, we have set an ambition for all women and girls with severe endometriosis to experience better care with reduced wait times for diagnosis.

“In 2024, our Women’s Health Strategy will focus on rolling out women’s health hubs to provide women with care for menstrual problems and conditions like endometriosis, continuing to improve information and support for women suffering from painful, heavy periods, and promoting easier access to contraception – which often plays a vital role in managing menstrual problems.”

What does all this mean for me?

I will always have endometriosis. I will always be in pain. When I have a good day it feels like I’ve won the lottery.