For nine years I was told my endometriosis was IBS - woman describes pain of misdiagnosis

Chloe Bremner describes the pain she experiences from endometriosis as akin to having someone stuck inside you desperately trying to claw their way out.

The 24-year-old has contended with pain from the chronic inflammatory condition since she was 14 but it was minimised, downplayed and misdiagnosed for nine years - with doctors mistaking her endometriosis for irritable bowel system and a tummy bug.

Ms Bremner, who lives in Scotland, says she would routinely wake up in the middle of the night in excruciating pain.

“There were countless nights and days spent in this state,” she tells The Independent . “And then throughout the years, that progressively got worse, and then it started to impact my nerves - down my legs and my hips.”

Ms Bremner explains the pain meant going to the toilet was agonising and felt like she was passing “shards of glass”. Endometriosis is routinely mistaken as a condition linked to periods but it is in fact a chronic illness which can cause daily pain, she adds.

“It's excruciating, and to the point where I was on morphine every day, and it didn't do anything,” Ms Bremner says. “I was still in absolute agony.”

Among other things, her symptoms included severe daily pelvic pain, heavy, painful periods, bleeding between periods, nerve pain, severe pain during and after sex, extreme fatigue, migraines, brain fog, acne, vomiting, painful, ruptured cysts, and frequent urinary tract infections.

They said, ‘You’ve got a sick bug, go home’. But that was happening every four weeks. I wasn’t getting a sick bug every four weeks.

Endometriosis is “so unbelievably mistreated and misunderstood” within the healthcare profession, Ms Bremner adds.

“I was misdiagnosed for a really long time,” she says. “One time I even went to the doctor, I'd got my period. I was vomiting. I was in absolute agony, and I was like, something's wrong. And they said, ‘You've got a sick bug, go home’. But that was happening every four weeks. I wasn't getting a sick bug every four weeks.”

Endometriosis is a very common chronic inflammatory condition, impacting an estimated 1.5 million women in the UK. An inquiry by the All-Party Political Group found that similarly to Ms Bremner’s plight, it takes an average of eight years to get a diagnosis.

The condition sees tissue comparable to womb-lining grow in other places in the body - with symptoms often debilitating and spanning from infertility to painful periods, tiredness, pain while having sex, as well as depression and anxiety.

Ms Bremner says she was also misdiagnosed by a gynaecologist who wrongly told her endometriosis does not cause bloating and she instead had irritable bowel syndrome. This is despite the fact that bloating is a common symptom of endometriosis - with this commonly referred to as “endo belly”.

She was then referred to another gynaecologist and put on the waiting list for a diagnostic laparoscopy, she explains, adding that she was told multiple times that it was not likely they would find anything.

It was not until 2023 that she was finally diagnosed with endometriosis - an experience she describes as “bittersweet” due to bringing up feelings of “anger, upset and frustration” that she could have been getting support in the time she was awaiting a diagnosis.

She went on to have an operation in 2023 but experienced daily severe pain afterwards and was left dependent on morphine and unable to complete her nursing degree, she recounts.

As my endometriosis progressed and I got more unwell, I coped by dissociating from my present life to survive.

After months of suffering and her agony being dismissed as “post-operative pain”, she began taking menopause-inducing injections and hormone replacement therapy at the age of 24 but the treatments did not work, she adds.

“As my endometriosis progressed and I got more unwell, I coped by dissociating from my present life to survive,” Ms Bremner says. “My life became small and isolated; I couldn't face the reality of my situation. Dissociation helped me survive through the suffering, but I felt bitter towards those without endometriosis and with that came guilt.”

If her endometriosis had been left untreated, she would have gone on to develop kidney failure in a few years time, she says. Ms Bremner tells of a flare-up which resulted in an emergency admission to hospital where she learned her endometriosis had aggressively come back and had been classed as both severe and complex.

After looking into surgical options in the UK and being given quotes that exceeded £20,000, she launched a GoFundMe page to raise money for surgery and was overwhelmed by donations and messages of support.

She managed to raise £10,500 and went to Abu Dhabi to have surgery performed by endometriosis specialist Dr Zahid Khan at Danat Al Emarat Hospital in March this year, Ms Bremner recounts.

She explains there is discussion of her endometriosis potentially returning - with this demonstrating what a chronic and unpredictable condition the illness is.

“Most of the time it doesn’t take away 100 per cent of your symptoms, but it’s about reducing them to a stage that feels more comfortable,” Ms Bremner adds.

She explains that for years, nobody ever explained to her what endometriosis was, not even when she was diagnosed. “Endometriosis is a constant battle for validation and relief in a healthcare system that often fails its patients,” she says.