Press Release: It's OK to talk. Period. Endometriosis UK’s Awareness Week Campaign – 3rd-9th March, 2014
Women and young girls are waiting an average of two years before consulting their GP about difficult or painful periods. The Diagnosis Survey by Endometriosis UK found that women and young girls do not realise that what they are suffering may not be normal and that they should consult a healthcare professional.
Painful, heavy, difficult or irregular periods can be a sign of an undiagnosed medical condition, including endometriosis. Young women – particularly - need to be encouraged to seek help at an early stage. If they do so they may significantly increase their ability to conceive later in life and will not necessarily have to suffer symptoms for years for which they could have help. Average diagnosis times for endometriosis still sit at around seven years with 50% of women diagnosed reporting their first symptoms in their teenage years.
That’s why we say in our new campaign that: It’s ok to talk. Period.
Whilst many women experience some pain or discomfort during their period, specifically in the early years, no-one should be experiencing pain that lasts for more than two days. If a period affects everyday activities or cannot be controlled by normal over-the-counter pain medication, then women are encouraged to seek help. Painful periods, especially so if accompanied by other symptoms, may need additional treatment. Early diagnosis has been shown to improve health outcomes for many conditions.
Just talking about what is normal can be helpful. Many women have learned about periods from their mothers, sisters or aunts, but as some conditions (e.g. endometriosis) have a genetic factor, then symptoms can become normalised. To help start the conversation, Endometriosis UK is setting up a range of activities to encourage women to talk: online, by telephone and face-to-face.
Helen North, Chief Executive of Endometriosis UK, says:
“Women must be more aware of the devastating effects that painful periods can have upon them at an earlier stage. Our recent research indicating delays in both seeking help and diagnosis times for endometriosis, suggests that both women and healthcare professionals need to be much more aware that endometriosis is a possibility.
“With over 1.5 million women suffering with endometriosis in the UK, it is almost scandalous that they wait an average of seven years for diagnosis. Associated with delayed diagnosis, the costs to the NHS are thought to be as much as £8 billion. Women simply must be encouraged to seek help as soon as they can.”
Leaflets and information to give more information about endometriosis and the symptoms to look out for can be found on the Endometriosis UK website – www.endometriosis-uk.org – with a Pain and Symptom Diary available to download, plus many other useful leaflets. There is also a telephone helpline where people can phone in and discuss their symptoms – see the website for opening times. Endometriosis UK has a facebook page and a Twitter account, plus an online discussion forum accessible through the webpage.
Activities to raise awareness about endometriosis continue after Awareness Week, with an event in the Scottish Parliament on Wednesday 12th March – entitled: ‘Endometriosis: the hidden threat to women’s health’ - and on 13th March in Kensington Gardens, London, in support of the global campaign: ‘Million Woman March for Endometriosis.’
For full information on all the activities and more about Endometriosis, visit www.endometriosis-uk.org.
Tracee at firstname.lastname@example.org or call on 07954 178960
Laura at email@example.com or call on 020 7222 2781.
Case studies and photographs can be provided including;
Alice Smith: Endometriosis UK Young Ambassador
Alice is a young entrepreneur and was a previous contestant on the BBC’s Young Apprentice. She has a strong volunteering background and is well equipped to talk about endometriosis and helping to breakdown the taboo of talking about periods.
Alice appeared on BBC Radio Leicester in February and keeps a regular blog. Her story can be found here.
Carol Pearson: Endometriosis UK Treasurer and TEDx Star
Carol has been a Trustee and Treasurer of Endometriosis UK for 3 years. Her experience of living with endometriosis, being forced into early retirement (at 39!) and her role as an Endometriosis Support Group leader gives her the authority to speak about the devastating effects of endometriosis.
She pulled on all this to deliver one of the most popular sessions at TEDx Brighton last October with her take on a fairytale: Rewriting Red Riding Hood – click here.
Kate Hardcastle: Endometriosis Sufferer and award-winning entrepreneur
Kate Hardcastle is a retail and commercial expert respected nationally and internationally who co-founded an award-winning business. She is a regular contributor and industry commentator to Sky News, ITV & BBC as well as many prevalent trade publications.
She is also the Founder of the Charity Dreamgirls, founder of the Positive Image campaign and at the start of her career path, provided backing vocals for several major recording artistes. For more information on Kate visit www.whoiskatehardcastle.co.uk
Notes to editors
- 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
- 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.
- An estimated 1 in 10 women in the UK (1.5 million 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.
- 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.
- 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.
- 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.
- 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.
- 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
- Endometriosis UK is the leading national charity dedicated to providing support and information for women who have this 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.