Endometriosis UK Awareness Week 2013: Don’t take it lying down

Monday, February 18, 2013

Press Release - Endometriosis UK is running its National Awareness Week from 4th – 10th March 2013, under the banner: Don’t take it lying down.

A staggering 1 in 10 women in the UK - that’s 1.5 million across the country - suffer from endometriosis, with symptoms that include the most excruciating pain, extremely heavy bleeding, pain during sex and the risk of becoming infertile. The worry, fear and fatigue caused by endometriosis can lead to depression and despair. These are the common symptoms of a condition that is life-changing and - to date - incurable.

As the UK’s leading charity dedicated to helping those affected by endometriosis we believe it is crucial to raise awareness of the often hidden condition and help women explain a condition that is not widely understood or talked about. This is of vital importance if we are to help those affected by endometriosis.

So, during Awareness Week we are holding a number of events across the UK to give those affected by endometriosis a platform to communicate the impact that the condition has had on their lives.

During the Week we are promoting our easy-to-use Consultation Questionnaire, This has been specially designed  not only to help women feel more confident talking about their symptoms with their GP but also to make sure the doctor gets all the information they need on which to base next steps for treatment.

Endometriosis UK will also be inviting people to:

  • join in two lunchtime online Q & A sessions to put their questions on all aspects of the condition to our Medical Panel on Wednesday 6th and Friday 8th March
  • send in photos or words which describe their feelings about endometriosis to a virtual ‘Endo Gallery’ find out more through local events around the country.

Helen North, chief executive of Endometriosis UK, says:

“This year we want to make sure as many people as possible have heard about endometriosis, know what it is and how much it can impact on a woman’s life even if no one can see it.

“We believe it is vital that women are given a platform to express the way this condition affects them, to be able to explain the pain it causes and not suffer in silence or have it dismissed as normal.

“In a week which also includes International Women’s Day and Mother’s Day, it is fitting that we talk about endometriosis and how it impacts on so many women’s lives both in the UK and across the world.”

For full information on all the activities and more about Endometriosis, visit www.endometriosis-uk.org  The Endometriosis UK Helpline is 0808 808 2227.

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Notes to editors

  1. 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.
  2. Over 1.5 million women in the UK of childbearing age have this condition. 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.
  3. 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.
  4. 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.
  5. Research by Endometriosis UK (Diagnosis Survey, 2011) shows that it typically takes over seven years for a correct diagnosis to be made: two years before a woman initially goes to her GP and a four year delay going to and from the GP before further referral to have a laparoscopy. During this time women may suffer agonising pain each month which impacts on their lives, relationships and ability to work.
  6. 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.
  7. Endometriosis costs the UK approximately £8.2bn per annum in lost working time and healthcare costs. Source: ‘The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres’, Simoens et al, 2012
  8. Endometriosis UK is the leading national charity dedicated to providing support and information for women who have this condition.  It is affiliated to the European Endometriosis Alliance. It works 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.