An Elgin mum misdiagnosed with anorexia has slammed the health service after she was finally found to suffer from a rare life-threatening stomach disorder — 20 years late.
Isla Evans, 31, first complained of stomach pains when she was 10 years old, but repeated visits to her local doctor failed to find the true cause.
Instead she found herself diagnosed with anorexia, a serious mental condition where a person deliberately tries to lose as much weight as possible.
But after 20 years of suffering physical stomach pains she was finally diagnosed with Superior Mescentric Artery Syndrome (SMAS) in December last year.
The condition is potentially life-threatening as it causes the small intestine, called the duodenum, to be compressed by an overlying artery which stops food from passing through.
Isla claims she was told that the condition is so rare that there are no doctors in the UK who can operate on her. The mum-of two, from Elgin, said: “I was only diagnosed with SMAS in December last year but I’ve suffered with it since I was 10 years old.
“It’s horrible to be told for so long that I had anorexia. It wasn’t nice at all and I believed that I must’ve been going mad.
“Last year I changed my GP and was sent for a gastroscopy, a Barium meal, and an endoscopy, which showed that my duodenum had a large pouch called a diverticulum that was gathering the food I was eating.
“I also had a CT scan and it found that in my case the superior artery narrows and lies at a more acute angle than normal and pushes the duodenum into the spine.
“When I eat the pouch fills up and I can feel it moving about, it’s just horrible, I can feel it push on the front and the back.
“The artery pinches the small intestine and stops food from passing through it.
“It’s one of the main ones that come straight from the heart and the way it lies means they cannot operate without risking me dying.”
Isla, a mum of two, is cared for full time by her husband, Sean, 34, and has never been able to go on a family holiday because of the amount of pain she is in.
And despite repeated visits to her former GP at Linkwood Medical surgery in Elgin, she claims they were unable to correctly diagnose her symptoms.said: “Every time I went to the doctors I was told that it was nothing and it was just a tummy ache, they never found anything.
“When I was 14 the stress from my school exams made it more noticeable, but every time I visited the doctor they just said it was growing pains or anxiety.
“At one point they gave me Beta blockers, but they didn’t do anything and I had to keep going back, but when I did they would just give me something new.”
Last year she decided to change her GP in a bid to finally learn what was causing her so much pain.
She said: “I was only diagnosed after I changed my GP and they decided that I should get checked by a psychiatrist.
“The psychiatrist said that it was a GP issue and not a mental condition, so my GP right away put me on to a gastroenterologist at the Dr Gray’s Hospital in Elgin where they put me in for different tests.
“The tests found out exactly what I had waited 20 years to learn about myself, but there’s little they can do to help me.
“The NHS has said they can do a nasal gastric feed, which is a tube that will go down my nose and into the stomach where they would then feed it into the intestine.
“It would let my body take in food as they want to try and fatten me up because I’ve lost so much weight because of being unable to eat from the pain.”
But despite the risk to her health and well-being, Isla has been unable to get an operation on the NHS.
She said: “There are no doctors in the UK who are willing to touch me because it’s so rare and there’s a high risk of complications.
“There’s no specialist in the UK or in Europe at all who can help with this kind of problem and I’m terrified of having intestinal failure.
“We’ve been in touch with a hospital in America but it costs #3,500 USD just to be seen and the NHS won’t cover it.”
Now Isla says she is engaging with her solicitors to file a suit against NHS Grampian for her misdiagnosis.
A spokeswoman for NHS Grampian said: “NHS Grampian’s Feedback service, which handles complaints, compliments and comments about NHS Grampian services, has not received a complaint from Isla Evans.
“If a patient has concerns about their GP service, they should contact that GP service in the first instance. Independent GP services handle complaints directly.
“If a patient wishes to ask about their diagnosis or treatment, for example, they should contact their medical team or consultant.”