A woman who waited over a decade to be diagnosed with endometriosis has told how it feels like someone is “twisting and stabbing” her internal organs. Jenni Johnson, 38, was dismissed for years by GPs who said she just had “bad periods”, as the inflammatory disease robbed her of her career and mobility. She eventually needed a total hysterectomy and is now fighting for further tests to confirm whether the condition has spread to her bowel.

Jenni is sharing her shocking story as a new report from Endometriosis UK reveals that the average time to receive a diagnosis now exceeds nine years. Describing the agony the condition causes, she said: “It just comes on so quickly, such intense pain. It’s like somebody constantly grabbing my intestines and just twisting them and stabbing them. And in the back of my leg, it feels like someone’s just dragging a knife down it.

“I’m sick because it’s so painful. When that flare-up happens…I can be stuck in a bathroom for up to three hours at a time, screaming, crying.”

Endometriosis is a chronic condition where tissue similar to the lining of the womb grows elsewhere in the body.

This causes symptoms including pelvic pain, painful periods and heavy menstrual bleeding. It is thought to affect around one in 10 women, or 1.5 million across the UK.

Jenni regularly missed school as a teenager when her symptoms were bad. But it was not until she sought IVF treatment on the NHS in her twenties that a vaginal ultrasound led to a diagnosis.

She was denied IVF, but the doctors did not direct her towards any treatment for the condition, she said.

Jenni, of Sutton-in-Ashfield, Notts, recalled: “I was embarrassed to tell people that I’m being refused IVF because I’ve got something wrong with me. It does make you feel that, because I can’t fall pregnant, I’m not able to do the job that I’m meant to do.”

Jenni continued regularly visiting her GP while struggling to manage symptoms, including light-headedness and sickness at work.

She tried to predict the worst flare-ups and time days off from her job as a carer to coincide, but eventually had to give up her career.

Jenni said she only received treatment around a decade after her diagnosis, thanks to a locum GP who referred her to a specialist.

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An operation confirmed that she was suffering from endometriosis and she later underwent a full hysterectomy aged 33.

Jenni, who now relies on crutches and a wheelchair, believes that if she had been offered treatment earlier, she might still have her mobility, a better quality of life, and a job she loves.

She volunteers with Endometriosis UK, running a support group in Nottinghamshire and raising awareness of the condition.

Jenni added that she is “frustrated and angry” to see how little things have changed over the years.

She said: “I’m getting phone calls from women crying because they’re not being listened to by a gynaecologist or a GP, and there’s not a lot I can do apart from giving that shoulder to lean on because I’ve been there.”

Jenni wants more people to understand that endometriosis is not just a period-related, monthly condition, and can affect multiple organs in many different ways. She said: “It’s a daily condition. We deal with it every single day.”

Endometriosis UK’s report, based on a survey of 3,000 people with endometriosis, found that diagnosis times are getting worse.

The average time from first visiting a GP with symptoms to receiving a diagnosis in the UK rose from eight years in 2020 to nine years and four months last year.

Patients in Scotland faced the longest delays, waiting on average 10 years and two months.

The charity also found that 83% of sufferers had felt dismissed by healthcare workers, in some cases being told they were “making a fuss about nothing”.

Endometriosis UK chief executive Emma Cox said: “It is unacceptable that those living with endometriosis 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.

“Endometriosis care has been neglected for too long and the situation is getting worse.

“Governments across the UK must treat endometriosis as a common, chronic condition that requires systematic action and we want an unequivocal commitment to reduce average diagnosis time to one year or less by 2030.”

A Department of Health and Social Care spokesperson said: “Waiting nearly a decade for an endometriosis diagnosis is unacceptable. Stories like Jenni’s show just how badly women with painful conditions have been let down.

“We are determined to change that. We are renewing the Women’s Health Strategy, improving training for new doctors and, through our 10-Year Health Plan, we are cutting waiting times for gynaecology services so women get diagnosed and treated sooner.

“Endometriosis will also be prioritised through NHS Online — a new online hospital service giving patients access to expert care from home.”