“I feel like I’ve missed quite a lot of my teenage years because I’ve been bed bound in pain.”
That’s the voice of Emily Thomas, a student studying sport conditioning and rehabilitation in Cardiff.
Like other 22-year-olds, Emily enjoys dance and travel. But she has been forced to miss out on many of those classic, teenage coming-of-age events we almost all get to go to.
This is due to the disease so often misunderstood and misdiagnosed, Endometriosis.
If you’re not familar with that word, you’re part of a majority.
A majority of people who have never heard of endometriosis. A majority of people who don’t understand the agony it causes. And a majority of people who have no idea that 176 million women suffer with it globally.
Endometriosis is an incurable, chronic disease where cells similar to the lining of the womb grow elsewhere in the body, causing inflammation and scar tissue.
The harsh reality is, that despite affecting one in ten women, endometriosis is so often seen as, “just painful periods” Emily said.
After waiting seven and a half years suffering with symptoms, Emily was finally diagnosed in 2023. It was a relief after feeling doctors hadn’t taken her symptoms seriously.
She said: “I was back and forth to A&E all the time in pain.
“Sometimes I was there for 17 hours waiting and then they’d just tell me that my blood was normal and that I could go home.”
The worry caused by endometriosis leaves Emily feeling as if she lets people down by cancelling plans last minute, due to her flare ups being so random.
She said: “I feel like people think they can’t rely on me because I make plans and then I’ve got to go and say, ‘I’m really sorry but I can’t do that’, because the pain is so bad.
“Sometimes I struggle to even walk.”
Emily explained how she has had to pull out of dance competitions last minute due to the extreme pain she has been in.
She said how disappointed she felt after spending months rehearsing in preparation for competitions, for them to be cut short, without experiencing the joy of performing.
A study by the International Journal of Women’s health highlighted that the pain and worry caused by having endometriosis can lead to anxiety and depression.
Therefore, support groups have been set up around the country for women suffering with the impact endometriosis has on one’s physical and mental health.
Jody Stewart, 46, is a successful criminal lawyer and campaigner for the disease.
She set up a Lincolnshire support group after discovering the closest one she could attend was in Sheffield.
Jody said: “I really struggled with endometriosis for many years. When I look back, my cycles had never been normal. I’d always been in agonising pain.”
Jody added how the lack of awareness around endometriosis caused her to question her own body and symptoms prior to her diagnosis.
“I’d always had to have time off school and university, being sick with pain.
“Maybe I just had a low pain threshold. Maybe this is what every woman went through when they got their cycle. There wasn’t the education in school to say, this is what’s normal.
“If you’re not managing because of pain- that’s not normal.”
A recent report by the Royal College of Obstetricians and Gynaecologists has revealed gynaecology waiting lists have doubled since 2020.
The report stated that the “number of women waiting for gynaecology hospital services [in the UK] would fill Wembley stadium eight times over.”
When Jody first started to experience unusual symptoms, she was 14. When she got diagnosed with endometriosis, she was 27.
She said: “I wrongly assumed, that with the diagnosis came a plan and a cure and things were going to get better, which didn’t happen.
“Somebody said to me you better hurry up and have a family. That’s how I found out endometriosis impacts fertility.
“I wasn’t married and was in my twenties. Last time I checked, having a baby is a life decision not a medical treatment.”
Jody also stressed the impact the lack of understanding and treatment for the disease has had on her mental health.
“In my very darkest time I have begged my husband to kill me when I’ve been in pain,” she said. “It ends relationships, it ends careers, it ends people’s education.”
Fifty per cent of people with endometriosis fear the impact the condition is having/ has had on their job.
Jody had hoped to progress her career and become a judge. But undergoing years of fertility treatment, along with the impact on her mental health, and the pain itself, meant this has not happened.
She said: “I’m happy in the career that I’ve got, but could I have done more, and would I have done more if I’d taken endometriosis out of the equation? Yes 100 per cent.”
Jody and the support group meet on the last Friday of the month at the Community Room in Waitrose, Lincoln.
She said: “I know the group has changed people’s lives. If I make a positive difference to one person’s life, each month, then it’s all worth doing.”
Yasser Chaudhry is a Lincolnshire GP and trains new doctors.
He advises doctors to keep an open mind when listening to patients, as symptoms for endometriosis often disguise themselves as other conditions and can be so widespread.
He said: “The limited time doctors have with patients means sometimes we can’t explore patient’s problems in as much detail as we would like too.
“I would also encourage patients who think they have endometriosis to raise it with their GP.
“Ask the question: ‘Could this be endometriosis?’”
If you, or someone you know is struggling with endometriosis and would like to join a support group, all meetings are listed on the Endometriosis UK website.
Fact file
- 1 in 10 women of reproductive age (15-49) suffer from endometriosis in the UK.
- In the UK, 1.5 million women have endometriosis.
- Globally, 176 million women have endometriosis. That’s 10% of women worldwide.
- On average, it takes 7 and a half years to be diagnosed with endometriosis from when symptoms start to show.
- Half of the women who have endometriosis are infertile.
- There is no cure for endometriosis.
- The cause of endometriosis is unknown.
