She is in severe pain every month, and a last-minute hospital appointment cancellation has left her in despair
Amy Parker, 28, has suffered from endometriosis for her entire adult life(Image: Supplied)
A Bristol woman has spoken out about her nightmare of suffering from endometriosis for nearly a decade and a half without being diagnosed, and her frustration over the lack of care she has received for her condition.
Amy Parker, 28, from Avonmouth, first started struggling with severe pain when she turned fourteen. She was only diagnosed earlier this year, despite repeatedly telling doctors about her symptoms.
“They wouldn’t listen to a word I said and kept putting it down to period issues,” Ms Parker said.
“I was diagnosed this year after an almost 14-year wait to be diagnosed… my symptoms only get worse each month.”
Endometriosis is a chronic inflammatory disease which causes severe pelvic pain in which cells similar to the ones in the lining of the womb are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, which can also cause inflammation and and scar tissue.
In some cases, endometriosis can lead to infertility. About one in ten women in the UK suffer from the condition, a total of roughly 1.5 million people. There is no known cure, but symptoms can be managed with surgery and medicine.
Ms Parker had surgery earlier this year, but she said that had been largely ineffective and she had yet to receive any follow-up care.
To her frustration, an appointment at Southmead Hospital which she had to battle for a year to get was suddenly cancelled at short notice without an explanation. Ms Parker said she was suffering from debilitating pain, with no end in sight after the last-minute cancellation.
“Things are getting a lot worse,” she said. “Every single month my symptoms get worse with my periods. It’s gotten to the point where due to nerve pain I have no use of my right leg every time I get my period because I’m in so much pain.”
She has been unable to work for the past year as due to the severity of her symptoms.
A spokesperson for Endometriosis UK, the country’s leading charity for those affected by the condition, said Ms Parker’s experiences were sadly all too familiar.
“It takes on average a shocking 8 years and 10 months to get a diagnosis of endometriosis in the UK, nobody should be having to wait this long,” the spokesperson said.
“Not only without a diagnosis can the disease worsen, but it can have a devastating impact on all aspects of someone’s life, including their physical and mental health, careers, education and relationships.
“This is a disease that affects 1 in 10 women and those assigned female at birth, and is something the Government cannot afford to ignore.”
Nearly 3,500 people recently signed a petition calling for the creation of a national registry of Endometriosis patients, to improve data collection and give better insights around effective treatments for the condition.
Ms Parker said she hoped sharing her story would encourage other women suffering from the condition to seek help.
“I want women who are still struggling to speak up to their doctors and make sure they’re getting the help they need,” she said.
Endometriosis was identified as a priority area in a government ‘Women’s Health Strategy for England’ report published in 2022. The introduction to the report conceded not enough was known about some conditions affecting women, including endometriosis.
A 10-year ‘ambition’ declared in that strategy report, published under the Johnson government, was that “women and girls with severe endometriosis experience better care, where diagnosis time is reduced on the journey from initial GP appointment through to final diagnosis.”
However, the Endometriosis UK spokesperson said more needed to be done and called for a proper commitment to reduce diagnosis times and improve care.
“Endometriosis U.K. is urging the government to take urgent action to reduce diagnosis times so that everyone with endometriosis can access the right care at the right time… Without a commitment to reduce diagnosis times and improve care, those with the disease may continue to face challenges in accessing the care and support they need”.