Call for action on chronic condition

Disease sufferers have called for “direct action” from the government as a new report shows no improvement in diagnosis in a decade – taking eight years on average.

An inquiry by the All-Party Parliamentary Group ( APPG) on endometriosis has laid bare the devastating impact the chronic condition can have on all aspects of a woman’s life – and its findings have been described by sufferers as “confirmation that we’re not alone”.

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

It affects one in 10 women in the UK, between puberty and menopause – a similar number of women to that affected by diabetes.

Symptoms can include pain in the lower stomach or back, period pain that stops individuals doing their normal activities, pain during or after sex, difficulty getting pregnant and heavy periods.

More than 10,000 people were surveyed as part of the inquiry, along with healthcare professionals and those with the condition were asked to share their personal experiences.

Its findings revealed diagnosis times for endometriosis have not improved in more than a decade and it still takes eight years on average.

Prior to a diagnosis and with symptoms, 58% visited their GP more than 10 times, 43% visited doctors in hospitals more than five times and 53% visited A&E.

Lauren Marcella from Westhill, Aberdeenshire, has faced a 17- year battle with endometriosis, which began when she was just 11.

However, it was only seven years later that the 28-year-old was diagnosed with the chronic condition.

Ms Marcella described it as “heartbreaking” to see these figures in black and white.

She added :“It’ s confirmation that we’re not alone. The fact that 81% said endometriosis has impacted their mental health negatively or very negatively confirms this is not just a physical illness but a detriment to our mental wellbeing.

“These figures give a clear- cut insight into the reality of living with the condition. If this doesn’t make government wake up and pay attention, I don’t know what will.”

Lauren’ sb raver yin sharing her experience led to several women getting in touch for support.

In he survey, a total of 90% of women would have liked access to psychological support but were not offered this and 81% said endometriosis has hit their mental health badly or very negatively.

To support the 1.5 million women with the condition across the UK, the APPG has called on all governments in the UK to commit to a series of support measures.

These include a commitment to reduce average diagnosis times with a target of four years or less by 2025 and a year or less by 2030 and a pledge to invest in research to find the cause of endometriosis, better treatment, management and diagnosis options and, one day, a cure.

The inquiry has also called on all four nations of the UK to include compulsory menstrual wellbeing in the school curriculum so young people recognise the warning signs of menstrual health conditions and know when to seek help.

A Scottish Government spokesman said :“Our latest programme for government includes a commitment to continue development of a women’s health plan to tackle women’ s health inequalities, including endometriosis.”

Picture by Kami Thomson. BATTLE: Lauren Marcella, 28, from Aberdeenshire, faced a long wait for a diagnosis.