Endometriosis care across the UK needs urgent improvement and diagnosis times need to be cut in half, a report by MPs says.
It found an average wait for a diagnosis was eight years and that has not improved in more than a decade reports the BBC.
Endometriosis affects one in 10 women in the UK and causes debilitating pain, very heavy periods and infertility.
Nadine Dorries, minister for women’s health, said awareness was increasing but there was still a long way to go.
More than 10,000 people took part in the All-Party Political Group inquiry which found that 58% of people visited the GP more than 10 times before diagnosis and 53% went to A&E with symptoms before diagnosis.
The majority of people also told MPs their mental health, education and careers had been damaged by the condition.
About 90% said they would have liked access to psychological support but were never offered it, with 35% having a reduced income due to endometriosis.
There is no cure for the condition and treatment can include hormone therapy and surgery.
Sarah Smallbone, 37, from Thurrock, who gave evidence to the inquiry, was diagnosed with endometriosis aged 30 and had four operations in three years. She worked at a supermarket, but quit as her condition got worse.
“Endometriosis is life-changing. The pain can be so varied but at its worst, it is crippling to the point that the strongest painkillers only seem to make me drowsy,” she said.
“After several warnings for my sickness, the final straw was returning from surgery, which ended up causing me kidney failure, and being given an official disciplinary. Knowing that I still needed another operation to reverse my bowel, I felt I had no choice but to quit.”