Her warning comes as new figures show the average time to receive a diagnosis in Scotland has increased to 10 years and two months – up from eight years and six months in 2020.
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Sammy Balsillie, 33, runs Endometriosis Fife as its support group leader and lives with the condition herself.
She recalls having “terrible periods” for most of her life, but just before turning 20 in 2013 her health deteriorated sharply. She lost a significant amount of weight and was vomiting daily.
“Gastroentology really thought that I had endometriosis and referred me to gynaecology and I had a laparoscopy and they found an adhesion and dismissed me in 2013,” she said.
Instead of a confirmed diagnosis, Ms Balsillie was told she had gastroparesis — a chronic condition that causes delayed stomach emptying and can lead to nausea, vomiting and abdominal pain.
After moving to Glasgow, she said she was repeatedly misdiagnosed.
“Throughout the years, I was then misdiagnosed with lupus and fibromyalgia and loads of different things,” she said. “I had terrible periods and I once had a nurse laugh at me when I was crying down the phone because I had two painful periods in a month.”
It was not until six years later, after returning to Fife, that a locum doctor revisited her medical history.
“I moved back to Fife and they were still unsure what was going on until a locum doctor in 2019 realised that I was really poorly and read back through all my surgery notes and said, ‘I want you to get a scan but I think you do have endometriosis and it was missed.”
A scan confirmed the diagnosis. By then, her condition had become severe.
“In 2019, I was referred to as an urgent case. Back then the queues weren’t that bad so I was seen quite quickly.
“My endometriosis was so severe that I was bleeding internally into my pelvic cavity. They managed to clear out the blood and that relieved a lot of the pain at that time but they told me I would need to have a hysterectomy and I’d need to think about having kids first.”
Sammy with Claire Watson, Endo Fife founder (left) and Emma Cox, CEO, Endometriosis UK CEO (right) (Image: Supplied)
She was placed into a medically-induced menopause that year.
“I was going through the menopause, feeling suicidal and losing my hair. Covid had happened and my wedding had been cancelled three times. It was not a great time.”
In 2020 she was referred to the specialist Expect endometriosis clinic in Edinburgh and underwent extensive surgery in 2021 to remove endometriosis from her kidneys, bowel and back.
“I got married seven weeks later and moved house a week before the wedding. Luckily, because I had that surgery I was able to have my little girl in 2022,” she said.
The delay in diagnosis has left lasting consequences.
“I am permanently disabled because of my endometriosis because it was dismissed for so long. I had to use a walking stick, I have a relator, I can’t chase after my daughter, I have other conditions that have been linked to endometriosis, I’ve got nerve pain.”
Asked whether earlier diagnosis would have changed her life, she said: “1000%. I wouldn’t be disabled. I’m chronically ill and I can’t walk far at all and I can’t take my daughter to the park on my own. I wouldn’t be working from home. I would be out and about doing other jobs and being more on my feet and not having to spend the majority of my time in bed.”
Asked how that has made her feel, she said: “At times, I’ve been in a really dark place because of it especially when I was first diagnosed. I was almost suicidal. I’ve found coping strategies and I try to keep my mind busy but you do feel hopeless at times when you are begging for help and you are getting the wrong information and not the correct support you need.”
“It’s not just a bad period and it sometimes gets treated like that,” she added.
Despite surgery, Ms Balsillie said she continues to face challenges being listened to. During 2024 she experienced four life-threatening urosepsis scares.
“I spent the majority of 2024 with four urosepsis scares where the hospital said it was my endometriosis causing my kidneys not to work,” she said. “Every time they did tests, it would come back clear but I was showing as septic and this was going on for about a year until I was diagnosed with a rare auto inflammatory disease and I had to have an unnecessary surgery on top of that to prove it was not my endometriosis.”
She was later diagnosed by a private rheumatologist with a rare autoinflammatory disease.
New data released by Endometriosis UK highlights the wider picture. A survey of more than 5,000 people found 39% had to visit their GP 10 times or more before endometriosis was suspected. More than half attended A&E with symptoms, and 46% were sent home without treatment.
Endometriosis affects around one in 10 women and those assigned female at birth — about 1.5 million people in the UK — and can cause severe pelvic pain, heavy bleeding, fatigue and fertility problems.
Emma Cox, CEO of Endometriosis UK, said: “It is unacceptable that those living with endometriosis in Scotland have to endure years of pain and uncertainty before receiving a diagnosis.
“Our findings underscore the urgent need not only for increased awareness and understanding of endometriosis and menstrual health among healthcare providers, but for this to be translated into action, with appropriate levels of resources allocated by the NHS to overcome far too long waiting lists and enable access to care where and when it’s needed.”
The charity is calling for an “unequivocal commitment” from the Scottish Government to reduce average diagnosis times to one year or less by 2030.
Responding to the findings, Minister for Women’s Health Jenni Minto said she was “disappointed” by the survey results and recognised that delays in diagnosis cause significant anxiety.
She said the Scottish Government has invested £13 million this year to help health boards tackle long waits for gynaecology and that early signs show waiting times beginning to fall. Funding has also been provided for free endometriosis training resources for healthcare professionals, alongside a new £350,000 Women’s Health Research Fund focused on menstrual and gynaecological health.
Ms Minto added: “Phase Two of the Women’s Health Plan, launched this January, responds to the concerns of women across Scotland. It demonstrates that women’s voices have been heard, and that we are taking action to transform gynaecology services and reduce diagnosis times for all menstrual health conditions, including endometriosis.”
Fifteen years after Endometriosis Fife was founded, Ms Balsillie and fellow volunteers are marking the milestone with The Big Endo Ball at The Windsor Hotel in Kirkcaldy on March 27, raising funds for Endometriosis UK.