NICE call for improved diagnosis and management of endometriosis

Thursday, September 07, 2017

New NICE guidelines to improve diagnosis and management of endometriosis highlight the current unacceptable delays – a shocking 7.5 years on average. These delays can result in prolonged pain and make future treatment more difficult. The new guidelines pave the way for improved support and treatment for women with endometriosis.

Despite costing the UK economy £8.2 billion annually, affecting 1 in 10 women of reproductive age in the UK (1.5 million), and being one of the most common gynaecological conditions in the UK, it currently takes an average of 7.5 years to get diagnosed with endometriosis. This can leave women with prolonged, chronic pain and a progressed condition which can be more difficult to treat. Years of being told their symptoms are ‘normal’ or ‘in their heads’ takes a toll mentally as well as physically.

New guidelines issued on 6th September 2017 by NICE – the National Institute for Health and Care Excellence - demonstrate how to speed up diagnosis and improve treatment and management for this disease for which the cause isn’t know, and there is no cure.

 

Emma Cox, Chief Executive of Endometriosis UK, said:

“Timely diagnosis could save women from many years of pain, distress and suffering. The impact a delayed diagnosis has on a woman’s life – her education, work, relationships and personal life - can be huge. On top of coping with the disease itself, women have to put up with being told, sometimes for years, that what they have is ‘in their heads’ or ‘normal’, when it isn’t.

We welcome the new NICE guidance which provides a great opportunity to significantly reduce diagnosis times and raise the bar in endometriosis care. Better, quicker diagnosis and timely treatment is vital to enable women to lead productive lives, and reduce the huge variety of current practice and access to services across the UK. But to deliver the promise of these guidelines we need to see better training and awareness by GPs, time allocated for necessary surgery, and the guidelines to be adopted in all four nations of the UK.”

To implement these guidelines, Endometriosis UK calls for:

  • Training and awareness raising of symptoms with GPs
  • Training and awareness raising with non-specialists gynaecologists
  • The NHS to schedule an appropriate amount of time for endometriosis consultations and surgery
  • The guidelines to be adopted and implemented in Northern Ireland, Scotland and Wales as well as England

Whilst endometriosis can be difficult to diagnose, as symptoms can vary significantly depending on where the endometriosis is growing, raised awareness by GPs would enable quicker diagnosis. Because the only definitive diagnosis is through surgery, other conditions may have to be ruled out first. But far too often, women repeatedly see their doctor and have a range of tests or treatments and endometriosis isn’t even considered. Timely diagnosis could save women from many years of living in pain. There are good examples of prompt diagnosis and these should be the norm, not exceptions.

We have a range of spokespeople, medical professionals and women with endometriosis, and case studies available.

Notes to editors

  1. Endometriosis UK is the leading national charity dedicated to providing support and information for women who have the condition. We work to increase understanding of endometriosis through campaigning, awareness-raising initiatives and research. We offer a wide range of advice and support, including a helpline, information leaflets and local support groups. These services are run by volunteers, all of whom have been affected by the condition.
  2. Endometriosis is a gynaecological condition where tissue similar (not identical) to the lining of the womb grow in other areas of the body, most commonly in the pelvic region. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. With no outlet, it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms.
  3. A laparoscopy is the most common way to diagnose endometriosis. During a laparoscopy, a small telescope (laparoscope) is inserted into the abdomen to look directly at the internal tissue. Laparoscopies are always carried out under general anaesthetic. During a laparoscopy various procedures can be performed in order to destroy or remove the endometriosis, endometriotic cysts and release scar tissue (adhesions).
  4. Individual women can suffer a range of symptoms including:
    • severe and chronic pelvic pain,
    • painful periods
    • painful bowel movement
    • pain when urinating
    •  fatigue and lack of energy
    • pain during or after sex
    • difficulty getting pregnant

These can lead to depression and feelings of isolation,

  1. An estimated 1 in 10 women in the UK suffer from endometriosis. It can affect all women and girls of childbearing age, regardless of race or ethnicity. Approximately 176 million women and girls suffer from endometriosis worldwide.
  2. There is no definitive cause for endometriosis. There is currently no cure. Treatments including drugs, surgery and complementary therapies can be used to help manage the pain, reduce the severity of symptoms and improve the quality of life for a woman living with the condition. The only conclusive way to determine if a woman has endometriosis is through laparoscopic surgery.
  3. Research by Endometriosis UK (Diagnosis Survey, 2015) shows that it typically takes over seven years for a correct diagnosis to be made. During this time women may suffer agonising pain each month which impacts on their lives, relationships and ability to work.
  4. Endometriosis costs the UK approximately £8.2bn per annum in lost working time and healthcare costs. Source: Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012; 27(5):1292-9.