Endometriosis sufferers have called for action from government as new report shows no improvement in diagnosis or care in a decade
The second most common gynaecological condition in the UK, endometriosis affects one in 10 women. It causes debilitating pain, very heavy periods and infertility. There is no cure for the condition and treatment can include hormone therapy and surgery.
Care for the condition needs urgent attention across the UK and diagnosis times need to be cut in half, a report by MPs says.
More than 10,000 people took part in the All-Party Political Group (APPG) inquiry, including people with endometriosis and healthcare practitioners. The report found that 58% of people visited their GP more than 10 times before diagnosis and 53% also went to A&E with symptoms before being diagnosed.
Until recently, the average diagnosis time for the condition was seven and a half years. The latest report puts it at eight years on average. So, not only has there been no improvement in over a decade, but the situation has actually worsened.
The issues uncovered by the APPG did not stop at the wait for a diagnosis. They also found that the wait for treatment was unacceptable. 30% of people said that they waited six months or more from when their gynaecologist said they needed surgery until the surgery itself. Additionally, 90% of respondents said they would have liked access to psychological support but were never offered it.
On top of that, 72% reported that they were not given any written information when diagnosed, leaving them without the knowledge and advice they need to make informed choices about their healthcare.
Of course, years of battling for a diagnosis can take a huge mental toll, as well as impacting on the day to day life of the person living with endometriosis. This was confirmed by the inquiry, in which the majority of respondents told MPs their mental health, education and careers had been damaged by the condition. More than a third (35%) reported having a reduced income due to endometriosis.
Sir David Amess MP, Chair of the APPG on Endometriosis said, “The report provides a stark picture of the reality of living with endometriosis, including the huge, life-long impact it may have on all aspects of life.
“It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously – or downplayed as linked to the menstrual cycle and periods.”
Since the release of the report, many people have been taking to Twitter to share their own experiences of diagnosis and treatment.
While MPs taking notice of endometriosis & the horror it silently causes is good. It doesn’t get away from the fact that women still cannot get a diagnosis for years and years. Why? I will kick off- it took me 21 years to be diagnosed with #endometriosis - how many years for you? https://t.co/SHhGOJlExI
— Emma Barnett (@Emmabarnett) October 19, 2020
I could cry right now...Endo is trending 😭
— Sophie (@journo_sophie) October 19, 2020
I've been waiting almost 5 years for an #endometriosis diagnosis and I'm still no further thanks to dismissive GPs, gynacologist and now delays due to COVID.
I feel like a guinea pig who gets fobbed off with pills which never help😟 pic.twitter.com/HSbqvdSUD9
Commenting on the report, Emma Cox, CEO of Endometriosis UK said: “This report should be the final warning to governments and the NHS that action must be taken on endometriosis.
“The average diagnosis time for endometriosis remains at eight years – shockingly, it’s not changed in a decade. Action must be taken to drive this down. Implementing effective processes within the NHS will help healthcare practitioners support diagnosis and get those with endometriosis symptoms to the right place, in hospitals with the right expertise, at the right time.
“Action is needed now, to ensure the next generation with endometriosis are not robbed of the future they deserve”.
To support those with endometriosis, the APPG is calling on all governments in the UK to commit to a series of support measures for those with endometriosis, including:
- Reducing average diagnosis times - the target is four years or less by 2025, and a year or less by 2030.
- Ensuring a baseline for endometriosis diagnosis, treatment and management by implementing the NICE Guideline on Endometriosis Treatment and Management.
- An investigation into the barriers faced in accessing care for those from Black, Asian and minority ethnic backgrounds.
- Investing in research to find the cause of endometriosis, better treatment, management and diagnosis options.
- A commitment from all four nations to include compulsory menstrual wellbeing in the school curriculum. It’s essential that young people can recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in schools in England but is not UK wide.
Sir Amess MP said, “All UK governments must take the recommendations in this report seriously and act to ensure that everyone with endometriosis has a prompt diagnosis, along with access to the physical and mental health support they need to manage their condition.
“The APPG heard many accounts of people with endometriosis not having access to the specialist care they need. The APPG will not rest until tangible improvements are delivered to all those who suffer from this condition.”
If you’re looking for support, a nutrition professional could help. In this article, nutritional therapist Melody Mackeown discusses how dietary changes can help with endometriosis symptoms.
