‘It felt like someone was stabbing my organs — doctors dismissed me’ | UK | News

A woman who waited more than 10 years to be diagnosed with endometriosis described feeling like someone was “twisting and stabbing” her internal organs. Jenni Johnson, 38, was dismissed for years by GPs who said she was going through “bad times” as the inflammatory disease robbed her of her career and mobility. She eventually required a total hysterectomy and is currently fighting for further tests to confirm whether the condition has spread to her bowels.

Jenni shares her shocking story as a new report from Endometriosis UK reveals the average time to diagnosis is now over nine years. He described the pain caused by the condition: “The pain happens so quickly and intensely. It feels like someone is constantly holding my intestines, twisting and stabbing them. And it feels like someone is dragging a knife down the back of my leg.”

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

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

This causes symptoms such as pelvic pain, painful periods, and heavy menstrual bleeding. It is thought to affect around 1 in 10 women, or 1.5 million across the UK.

As a teenager, Jenni regularly missed school when her symptoms were bad. But when she sought in vitro fertilization on the NHS in her twenties, a vaginal ultrasound could not diagnose her.

She said she was denied in vitro fertilization treatment but doctors did not refer her to any treatment for the condition.

Jenni, from Sutton-in-Ashfield, Notts, recalled: “I was embarrassed to tell people I was refused IVF because there was something wrong with me. It makes you feel like I can’t do the job I need to do because I can’t get pregnant.”

Jenni continued to visit her GP regularly as she tried to manage symptoms such as dizziness and nausea at work.

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

Jenni said she received treatment nearly a decade after her diagnosis, thanks to a local GP who referred her to a specialist.

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An operation confirmed that she had endometriosis and she later underwent a full hysterectomy at the age of 33.

Now dependent on crutches and a wheelchair, Jenni believes she could still have mobility, a better quality of life and a job she loves if treatment had been offered to her earlier.

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

Jenni added that she was “disappointed and angry” at how little things had changed over the years.

She said: “I get calls from women crying because they haven’t been listened to by a gynecologist or GP and there’s not much I can do except lean on that shoulder because I’m there.”

Jenni wants more people to understand that endometriosis is not just a menstrual, monthly condition and can affect multiple organs in many different ways. “This is a daily situation. We deal with this every day,” he said.

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

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

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

The charity also found that 83 per cent of patients felt dismissed by healthcare workers and in some cases were told they were “not making a fuss about anything”.

Emma Cox, CEO of Endometriosis UK, said: “It is unacceptable that those living with endometriosis have to endure years of pain and uncertainty before receiving a diagnosis.

“Our findings not only highlight the urgent need to increase awareness and understanding of endometriosis and menstrual health among healthcare providers, but also to translate this into action, with appropriate levels of resource allocation by the NHS to tackle very long waiting lists and enable access to care where and when it is needed.

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

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

A Department of Health and Social Care spokesman said: “Waiting nearly ten years for an endometriosis diagnosis is unacceptable. Stories like Jenni’s show how badly let down women with painful conditions can be.”

“We are determined to change this. We are revamping the Women’s Health Strategy, improving the training of new doctors and reducing waiting times for gynecology services so women can be diagnosed and treated earlier through our 10 Year Health Plan.

“Endometriosis will also be prioritized through NHS Online, a new online hospital service that gives patients access to specialist care from home.”