Current News

Daily Mail coverage for endometriosis and Endometriosis UK

We are thrilled that the Daily Mail recently published a prominent piece on endometriosis and the blight it can have on the lives of those who suffer from the condition.

The article, written by Abigail Butcher, featured a long-term Endometriosis UK volunteer and fantastic advocate for the cause, Jenny Genge.

Jenny spoke candidly about her struggle and the physical and emotional pain she went through before ultimately deciding upon having a hysterectomy.

Read the Daily Mail article in full here...

Early Diagnosis Alliance

Endometriosis UK is proud to be taking the lead in the Early Diagnosis Alliance. This is a collection of charities, such as The Stroke Association, Epilepsy Society and the National Rheumatoid Arthritis Society who have come together to call on the government to ensure that UK Parliament prioritises the investment into the infrastructure and pathway from early diagnosis to treatment to ensure patient outcomes are improved. 

We have joined with other charities because we feel strongly that unless a whole system approach is adopted, patients with different conditions will continue to suffer late diagnosis and in some cases...misdiagnosis!

We urge all of our supporters to sign our e-Petition asking for GPs and hospitals to be better supported to be able to diagnose people more quickly. Please be sure to also share the petition with friends, colleagues and family. Together, we really can make a difference.

Sign the petition now....
Like our 'Early Diagnosis Alliance' Facebook page here...

A new social media platform putting patients first

Endometriosis UK Information Day 2011

Join us on 22 October and learn more about endometriosis, its treatments and how to cope more successfully with this enigmatic condition. Being held at the University College Hospital Education Centre in London, the day is aimed at patients, partners, parents and pals and will bring together expert clinicians, patients and charity staff giving you an opportunity to learn more and network with others in a supportive environment.

This year we have engaged with the expert endometriosis team at University College London Hospital giving us a quality array of guest speakers who will be presenting information and answering your questions during their seminars.

The day begins with registration and refreshments from 9.30am, there will then be a plenary session to welcome everybody leading onto an introduction from Mr George Pandis of UCLH and an overview presentation on endometriosis and the current understanding of its causes.

Prior to the day, delegates have the chance to select* three seminars from a choice of eight to focus on their own areas of interest. Seminars will cover:

Diet & Nutrition, led by Hilary Denyer
Sex and Endometriosis, led by Carol Pearson & Wendy-Rae Mitchell
Fertility, presented by Paul Serhal
Latest Surgical Techniques,  presented by George Pandis
Medical Treatments: the benefits and risks, presented by Christian Becker
Pain Management: living with a long-term condition, presented by Kevin O’Sullivan
How best to support someone with endometriosis, led by Ann & Paul Keeping
Alternative therapies, introduced by Rachel Denyer

* Please note: whilst every effort will be made to accommodate all three selections this may not always be possible.

As part of the Alternative therapies session we have invited some highly experienced practitioners to join us for the day including reiki, acupuncture and yoga therapists. Delegates will be able to visit the different therapists to discuss these techniques and to arrange taster sessions**. These taster sessions will be available through the day and to all delegates not just those attending this workshop.

**Small charges may apply

The afternoon will wrap with a panel discussion debating, “The Pill: a ticking time bomb or the best tool we have?” Contributors include Dian Shepperson-Mills, a leading nutritionist and Christian Becker.

Our Information day is not one to be missed. Tickets are available now priced at £20 per member and £35 per non-member.  Everyone is welcome.  Places are limited so to book your place download our booking form here.

Information Day contributors include...

Mr George Pandis - Lead Clinician for endometriosis and consultant gynaecologist at UCLH. Also lead obstetrician for multiple pregnancies at EGA/UCLH. Specialist Interests - Minimal Access Surgery, Endometriosis, Fetal Medicine

Mr Paul Serhal - founded the Centre for Reproductive and Gynaecological Health in 1990 at UCH. He has appeared on many radio and television documentary programmes debating women’s health issues.

Mr Christian Becker - BRC Senior Clinical Research Fellow at the University of Oxford and Honorary Consultant. His clinical and research interests include endometriosis, angiogenesis and fertility.

Dr Kevin O'Sullivan - Consultant Anaesthetist & Pain Specialist Stepping Hill Hospital, with clinical interests in Pain Management and Anaesthetics

Wendy-Rae Mitchell - Clinical Nurse Specialist Gynaecology at The Royal Surrey County Hospital in Guildford and member of the Association of Psychosexual Nursing

Andreas Stavroulis -MRCOG, Clinical Fellow in Advanced Laparoscopic Surgery within the Endometriosis Centre at UCLH

Hilary Denyer - a neonatal nurse, working with mothers and babies for 30 years. This led her to study Nutritional Medicine in 2000 and later completed the 2 year diploma in Nutritional Therapy at Raworth International College. Hilary is a long-term volunteer with Endometriosis UK working on the helpline.

Ann & Paul Keeping- Ann and Paul have been running the Endometriosis Support Group in Southampton for many years.  Prompted by their daughter’s endometriosis they have seen how the condition has developed and used the local support to help them cope.  Now they are doing what they can to support others in the area to understand and cope with their symptoms.

Endometriosis Diagnosis Survey 2011:
Jan 10th – Feb 4th 2011

Summary Findings

On average it takes over 7.5 years to diagnose endometriosis

Women wait nearly 2 years before visiting their GP about their symptoms

GPs then took on average 4 years to referred the patient to a specialist

It then takes a further 1 year 9 months to get a formal diagnosis

Over 50% of participants waited more than 6 years for a diagnosis

Less than 20% of those who responded received a diagnosis within two years

One third of respondents waited at least 10 years, and 15% waited for over 15 years, to be diagnosed.

Reason for the Survey

Endometriosis is the second most common gynaecological condition, and is estimated to affect around 2 million women in the UK - around one in ten, though some health bodies suggest that this figure is  much higher (possibly as many as one in every five women).

The condition can cause extreme pain and can therefore be debilitating for sufferers, but as symptoms vary greatly and often mimic symptoms of other diseases, it can be difficult to diagnose.  Extreme fatigue is also very common.

Whilst there is no cure, once diagnosed, the condition – and the painful symptoms – can be treated, with different options available depending on the patient’s circumstances.

Our 2005 survey (Pain Survey, TNS 2005), showed that in the UK it took 11 years to get a formal diagnosis of endometriosis (via laparoscopy) from the onset of symptoms. Feedback and input from our members and supporters indicated that difficulties and delays still existed. This survey has therefore enabled us to see how much or how little has changed since 2005.

Survey Details

Number of Respondents: 2956
Cleaned data: n=2890

(Note: Lines of data where one result gave a negative figure were removed before analysis and extremes were also taken out)

Average age of respondents: 32.5 years

Conducted via SurveyMonkey and promoted on Endometriosis UK website, Facebook page, Twitter and the Charity’s e-newsletter

Questions asked:
What age are you now?
What age were you when you first experienced symptoms?
What age were you when you first went to your GP about these symptoms?
What age were you when your GP referred you to a specialist/gynaecologist?
What age were you when your GP referred you to a specialist/gynaecologist?

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Endometriosis UK wins Award
We aredelighted to announce that Endometriosis UK has won a Highly Commended Award in the GlaxoSmithKline King’s Fund IMPACT awards. More

Current Trials...

For details, please visit our research page