Press release: Endometriosis UK calls for shorter diagnosis time

Thursday, February 26, 2015
Endometriosis Awareness Week 2015

It’s OK to talk. Period.
Endometriosis Awareness Week 2nd – 9th March 2015

Endometriosis UK is highlighting delays in diagnosis of endometriosis and is calling for shorter diagnosis time to ensure better health outcomes for women affected by the condition. 

The Diagnosis Survey 2015 by Endometriosis UK revealed that almost 50% of women saw their GP more than 5 times before being referred to a specialist and it takes on average 7.5 years to get a formal diagnosis of endometriosis by laparoscopy.

Endometriosis is the second most common gynaecological condition affecting 1 in 10 women in the UK. The classic symptoms are severe pain during or between periods; very long, heavy and irregular periods; painful bowel movements; pain in the bladder and pain during or after sex. Fertility may also be affected and extreme fatigue is very common. 

There is no cure for endometriosis, but the condition is manageable and timely diagnosis could save women from many years of living in constant pain. It could also ensure better health outcomes through earlier treatment. 

Endometriosis UK has five recommendations to improve services for women with endometriosis:

  • More information on treatment options should be available to women with endometriosis from GPs and nurses.
  • GPs need better access to information about endometriosis so they can recognise the symptoms at the first consultation and provide women with better support.
  • Referrals to specialists and British Society for Gynaecological Endoscopy (BSGE) Endometriosis Centres should be offered sooner to women with the condition.
  • All women with a diagnosis of endometriosis should have access to a specialist nurse.
  • At least one Endometriosis Specialist Centre should operate in every county in the United Kingdom.

Jane Hudson Jones, Endometriosis UK Chief Executive, said: “One in ten women in the UK has endometriosis, and yet it still takes an average of 7.5 years to get a diagnosis. During this time those with severe endometriosis live with increasing and debilitating pain and spread of the disease; lose their relationships and livelihoods: a devastation of their quality of life. 

7.5 years is far too long for any woman to suffer and we aim to change that. 

One of the ways we will make change happen is by supporting GPs to understand the signs of endometriosis so that they can make referrals faster, reducing current diagnosis times.”

-ENDS-

Contact: Monika at communications@endometriosis-uk.org or call on 020 7222 2781.

SPOKESPEOPLE 
Carol Pearson, Endometriosis UK Trustee, endometriosis patient

Alice Smith, Endometriosis UK Young Ambassador and Trustee, endometriosis patient

Ertan Saridogan, Endometriosis UK Medical Advisory Panel, Consultant Gynecologist, University College London

Andrew Horne, Endometriosis UK Medical Advisory Panel, Senior Lecturer and Consultant Gynecologist, University of Edinburgh

Jane Hudson Jones, Endometriosis UK Chief Executive

Angela Style, Endometriosis UK Chair of Board

CASE STUDIES
Helen, age: 35

Helen was diagnosed with endometriosis at age of 25. She is happy to speak about how important it is to seek the right advice and treatment options and not being afraid to challenge or look for other specialists if unhappy with how things are progressing.
Helen has been working in Aviation since she left College at the age of 18 and is extremely passionate about her work. She lives in West Sussex.

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 to the lining of the womb grows in other areas of the body, most commonly in the pelvic region. This tissue responds to hormones in the same way as the lining of the womb but, 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.    Painful or heavy periods can be a sign of:
•    Fibroids – 20-40% of women will suffer from these at some point during their reproductive years, but most can be treated through drugs or surgery. www.britishfibroidtrust.org.uk 
•    Endometriosis – a common condition (1 in 10 women), associated with severe pelvic pain and infertility.  Endometriosis is a chronic condition for which treatment can be difficult and may have to repeated several times. www.endometriosis-uk.org 
•    Adenomyosis – a similar condition to endometriosis where endometrial tissue grows within the wall of the uterus and responds to the hormonal changes each month causing severe pain.  Prevalence is not known as diagnosis is difficult and symptoms are usually managed by hormonal treatments.  
•    Pelvic Inflammatory Disease – a bacterial infection affecting the womb, fallopian tubes and ovaries (1 in 50 women will have this each year and of these only 1 in 4 is due to an STI). Treatment is usually through a course of antibiotics. http://www.nhs.uk/conditions/Pelvic-inflammatory-disease

5.    An estimated 1 in 10 women in the UK suffer from endometriosis, with symptoms that include severe pain, heavy bleeding, pain during sex and the risk of becoming infertile. It can affect all women and girls of a childbearing age, regardless of race or ethnicity. Approximately 176 million women and girls suffer from endometriosis worldwide. 

6.    Individual women can suffer a range of symptoms including severe and chronic period pain, heavy or irregular periods, fatigue and lack of energy, depression and feelings of isolation, pain on sexual intercourse and fertility problems. 

7.    There is no definitive cause for endometriosis and the only conclusive way to determine if a woman has endometriosis is through a laparoscopy, usually done under general anaesthetic.

8.    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. 

9.    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.

10.    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.

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