Emma Stewart spent more than a decade being told her pain was normal. When doctors finally operated, they discovered extensive endometriosis. Her experience highlights a healthcare system that’s still failing thousands of women
“I’m not leaving until you put me on the list.” Those were the words of Emma Stewart as she sat in a gynaecology department, exhausted and in tears.
For years, Emma – a lawyer from Scotland – had been telling doctors the same thing: something was wrong. The pain she was experiencing was so severe it made her vomit. Even morphine did little to help. Emma had reached the point where she couldn’t live her life. Yet, appointment after appointment, she was dismissed.
On this particular day, a female consultant had just told Emma that her periods were “not relevant,” even though that’s exactly what she was there to discuss: how horrific they were. Understandably, Emma had had enough.
“I sat there and said, ‘Well, I’m not moving until you put me on the laparoscopy list’,” she recalls. When surgeons eventually operated, they found endometriosis: “The surgeon said to me, ‘Your pelvis is riddled with endo’.”
Those words were devastating, but they were also vindication. After more than a decade of being doubted, somebody had finally confirmed what she had known all along. “I went to doctors with that information from the start,” sighs Emma. “I told them what I thought it was, and they never listened to me.”
THE FIGHT
Emma’s story is far from unique. Endometriosis affects around one in 10 women (and those assigned female at birth) in the UK – an estimated 1.5 million people. Yet, according to Endometriosis UK, the average time to diagnosis now stands at more than nine years. During that time, patients often see multiple doctors, attend A&E repeatedly, and are told their symptoms are simply part of being a woman.
Emma’s journey began when she was just 13: “My first period was horrendous, but they got significantly worse over time.” Over the following years, Emma’s health continued to deteriorate. She was diagnosed with IBS, chronic fatigue syndrome and fibromyalgia; she underwent colonoscopies; specialists investigated her spine; and surgeons even removed part of a disc from her back. But nothing explained why she was living with relentless pain.
Still, doctors continued to insist endometriosis was unlikely. The breaking point came nine years after her first surgery. Doctors discovered widespread deep infiltrating endometriosis affecting her bowel, ureter, uterus, pelvic ligaments and other structures throughout her pelvis. The diagnosis confirmed what Emma had suspected since she was a teenager.
But receiving answers was only the beginning. “There’s a gap between diagnosis and aftercare,” she explains. “You get told you’ve got endometriosis, and then it’s like, ‘Off you go’.”
THE AFTERMATH
Like many patients, Emma discovered that a diagnosis does not automatically lead to effective treatment. At one point, she was taking 21 tablets of strong painkillers a day. “I was like a zombie. Everything I took had another side effect.”
Now 30, she continues to navigate daily pain while worrying about fertility, relationships and the future. “The other thing that constantly plays in my mind is fertility,” reveals Emma. “People who don’t have endometriosis already have that biological clock. We’ve got it doubled because we may not be able to have a family.”
One of the biggest struggles she deals with is the misconceptions she encounters almost daily: “I’ve been told I just can’t cope with pain. I’ve been told everybody has periods this bad.”
She believes many of the barriers patients face stem from a deeper issue. “Medical misogyny,” she says bluntly. Because endometriosis is a gynaecological condition, she feels women’s pain is too often minimised or normalised. “There’s this attitude of, ‘Oh, it can’t be that bad. Just get on with it’.”
A NEW BATTLE
But the consequences reach far beyond physical health. Endometriosis is associated with higher rates of anxiety, depression and social isolation. Many patients report difficulties maintaining education, employment and relationships.
Emma knows that reality all too well: “I can’t always do what I want because my body won’t let me. I feel anxiety every day about whether I’m going to wake up feeling fine or not.” And it has a huge impact: everything requires careful planning. “If I go to a restaurant, I need a chair with a back. I can’t sit on a bench because my pain is so bad.”
The condition’s invisible nature often compounds the problem. “People say, ‘You look well, so you must be ok.’” She pauses before adding: “Just because I don’t have an arm cast, doesn’t mean I’m fine.”
That’s why, more than a decade after her symptoms first began, Emma is still searching for better treatments, better support and better understanding. “The number of times I say I have endometriosis and people say, ‘Sorry, what is that?’ is frightening.”
What she wants most is remarkably simple: for the next generation of patients not to have to fight as hard as she did. “No one should have to spend years proving they’re in pain,” she finishes with a sad smile.
And, after hearing Emma’s story, it is difficult to disagree.