A 16-year-old girl who has painful disorder endometriosis has been suffering with the condition since she was eight – and has now left her wheelchair bound.
Pretty Chloe-Elizabeth Elliott’s illness has intensified so much over the years the pelvic pain means she she cannot walk.
However, it took doctors eight years to give Chloe a diagnosis of the gynaecological condition that is more likely to affect women in their 30s and 40s.
During that time, she was diagnosed with a urinary infection, appendicitis and even told her pain was all in her head.
Eventually, Chloe’s consultant said she had endometriosis and had probably had the condition from starting her periods when she was just eight.
Endometriosis means the lining of the uterus grows on the outside, attaching itself to ovaries, fallopian tubes and tissue lining the pelvis.
The severe pain is often passed off as agonising periods as it will often present at menstruation.
The teenager, from Pontefract, West Yorks., said: “I struggled with severe period pain from the off. I would often miss school.”
Even Chloe’s mum, carer Elizabeth, 35, didn’t realise the extent of her daughter’s struggles, until she started fainting because of the chronic pain.
When the pair went to the doctors together Chloe was put on the pill.
But Chloe’s condition worsened when she was on the pill, so she had to come off it.
As they looked further into causes, Chloe’s GP misdiagnosed her with a urinary tract infection (UTI) but while she waited on lengthy waiting lists for specialists Elizabeth took her daughter to see a private consultant.
The specialist told her the problem was gynaecological.
By now Chloe was continually going to hospital in severe pain.
“All the while nobody was believing me,” said Chloe.
“I thought I was going mad because they were telling me it was all in my head, and I started to think maybe it was.
“The problem with endometriosis is that it does not appear on scans or tests, you have to have keyhole exploratory surgery, a laparoscopy, to find it.
“In the meantime, medical staff were rude and unsympathetic to what I was going through – saying I was doing it all for attention.”
When Chloe went to the A&E department at Pinderfields Hospital, Wakefield, in March this year, doctors said she had appendicitis but when it proved it wasn’t, she was told she was making it up.
“Because they said it was in my head I was refused any pain medication.
“I am usually on constant, prescribed strong painkillers from codeine to Buscapa – for chronic stomach cramps – it was horrifying.
“I was in a real mess, fainting and sweating. They were trying to discharge me.
“My mum refused to take me home until I was sorted. She took me in my wheelchair and we went to find the endometriosis specialist, Mr Christian Kremer.
“When we spoke to him he believed me and I cried my heart out as I told my story.”
That same day, she was prepped for pre-op and diagnosed. She had surgery two weeks later to remove visible signs of the illness.
“I was told I’ve probably had the illness since I was eight-years-old,” said Chloe.
Sadly Chloe’s diagnosis does not bring relief, surgery cannot remove all signs of the illness and it can grow back, the condition is incurable and is managed purely by pain killers.
“Getting the diagnosis was horrible really, it was our worst-case scenario,” said mum-of-two Elizabeth.
Chloe has now launched a YouTube channel, Chloe-Elizabeth Endometriosis sisters, to raise awareness of the condition.
She is also taking part in a pageant to raise awareness of the condition and has reached the finals of Miss South Yorkshire.
To support Chloe in her mission, like her page, Chloe-Elizabeth Elliott Miss South Yorkshire Finalists.
Mr Kremer, Consultant Gynaecologist at The Mid Yorkshire Hospitals NHS Trust, said: “Endometriosis is the most common cause of pelvic pain and can affect any woman of childbearing age. Initial symptoms can start soon after a woman’s first period.
“It is often believed the condition cannot affect teenagers, but when investigated by a
laparoscopy, endometriosis is often found in patients suffering with painful periods.”
Endometriosis affects one in 10 women of reproductive age in the UK.
Clinical research fellow and trainee in obstetrics and gynaecology at The Norfolk and Norwich University Hospitals NHS Foundation Trust, Babu Karavadra, said: “There is now greater research into endometriosis in adolescents but hardly any information about paediatrics.
“Endometriosis can take around eight years to diagnose , so diagnosing an eight-year-old girl would prove very difficult, not only because the only way to determine a diagnosis is through keyhole surgery.
“There would always be research into other areas first.
“One of the main problems for diagnosis is normalisation, both for the patient and for healthcare services, where it is considered normal for menstruation cramps to be severe.
“I would stress any period pains that seriously affects daily life is not normal and should be investigated.”
Endometriosis UK is a charity that helps sufferers by raising awareness and helps research.