The Endometriosis Coping Zone

The Coping Zone was created by the Endometriosis Zone to meet the information needs of support groups and women with endometriosis around the globe. Our purpose is to facilitate the sharing of information between endometriosis groups. The Coping Zone’s articles may be copied, republished, translated or redistributed with prior permission. To request permission to use any of The Coping Zone’s articles, contact webmaster@endometriosiszone.org.

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Support Group News

Australia

Email support group

AustEndo is an email support group for Australians and New Zealanders affected by endometriosis, adenomyosis and endosalpingiosis. We discuss many topics, including medications, surgical options, alternative treatments, food and diet, referrals to doctors, medical insurance and so on. The group provides a safe place where women and men can vent, laugh, cry, learn and support each other. For further information, visit http://au.groups.yahoo.com/group/AustEndo/.

Denmark

Changing of the guard

Lone Hummelshøj, cofounder of Denmark’s Endometriose Foreningen, has stepped down after seven years as the group’s chair. The baton has been handed to Hanne Vedsted-Hansen, vice-chair for the last two years. The core management team of Viola Ohrt Lund (secretariat/administration) and Laila Theilgaard Hansen (support group coordinator) will support Hanne. Other board members include Assistant Professor Axel Forman, Lone Stensig Jakobsgaard (meeting coordinator) and Jan Peen (PR/advertising executive). Lone H will continue to advise the board. 

GP awareness

Endometriose Foreningen has just published a leaflet designed to raise GPs’ awareness of endometriosis. The A5 leaflet has been written in collaboration with endometriosis specialists, and was mailed to every GP practice in Denmark during October. We hope it will encourage GPs to refer promptly to specialists women and girls presenting with symptoms of endometriosis, thereby reducing the time to diagnosis and specialist treatment. 

Europe

New Alliance

In early October, the European endometriosis groups met for two days and formed the European Endometriosis Alliance. Representatives discussed how they could work together more closely, and procure funding from the European Union.  

An action plan was developed which includes

• holding a common Endometriosis Awareness Week (7–13 March 2005) linked to International Women’s Day

• commissioning a European ‘pain and quality of life’ study

• developing a European plan to lobby politicians, and campaign for more funding for research, awareness and appropriate care for women

• launching a campaign to ascertain the number of women diagnosed each year in the participating countries

• establishing a forum for communicating and sharing of ideas. 

The Alliance will meet again on 14 September 2005 at the 9th World Congress on Endometriosis in Maastricht. 

For more information about the Alliance, contact the EEA.

United Kingdom

Cuban challenge

After the success of our Mount Kilimanjaro climb, the National Endometriosis Society is thrilled to announce its next challenge. In March 2006, we plan to trek through the stunning Sierra del Escambray Mountains of Cuba. The group will pass through coffee plantations and orange orchards with giant palms lining the way, and swim in crystal clear waterfalls.  

The year 2006 will be the society’s 25th anniversary, so the trek will be a major fundraiser for our birthday celebrations. People of all ages and walks of life are most welcome to participate. We would particularly like to have some international participants, including some gynaecologists, join us, so we would greatly appreciate it if the national endometriosis groups could publicise the event to patients and gynaecologists in their countries. 

Every trekker must raise a minimum of £2,250 to participate. Raising the sponsorship is not as daunting as it might seem. When you register, you will be sent a fundraising pack of information and ideas for raising funds. We hope you’ll join us! 

For more information, contact Nemone Warner at the NES on 020 7222 2781 or email fundraising@endo.org.uk.

Awareness campaign

As part of our ongoing campaign to draw public attention to endometriosis, the National Endometriosis Society has distributed two information leaflets for patients and GPs to 6,000 doctors’ surgeries and 30,000 doctors. The project was funded by the Department of Health. 

Of the 250,000 leaflets placed in surgeries, 177,000 were picked up. This is a fantastic result, which should greatly increase the community’s understanding of endometriosis and its symptoms, and enable many more women to have an earlier and more confident discussion with their GPs about their possible endometriosis symptoms. It should also increase knowledge of the Society’s work. We are now seeking three-year funding for the project. 

Self management courses

The National Endometriosis Society has been running self-management courses since 1999, and is the largest voluntary-sector provider of self-management tutors in the UK. The courses involve six, weekly, two-and-half hour sessions. They cover a range of techniques that help participants take control of their lives, including cognitive pain therapy, dealing with anger, dealing with fear and frustration, communicating effectively with health professionals, goal setting and action planning. 

Participants are followed up after six months to determine the benefits of attending the course. It is clear that the courses have helped many women with endometriosis. For example, feedback indicates that

• 50% have reduced the number of painkillers they use

• 83% have a better quality of life

• many have better work and social relationships

• the majority feel more confident, less anxious and in control when visiting a health professional

• the majority are more realistic about the impact of their disease on themselves and their family. 

We are delighted that our courses have made such a positive difference to the lives of women with endometriosis, and that they are able to participate more fully in their communities after the courses. 

Great North Run

On 26 September 2004, Penny Tranter, a trustee of the National Endometriosis Society, took part in the Great North Run to raise funds for the NES, and she would really welcome more sponsors. You can donate online by credit or debit card at www.justgiving.com/endometriosis2004. All donations are secure and go to the NES. If you are a UK taxpayer, Justgiving will add a 28% bonus to your donation at no cost to you, making it worth even more. 

United States

Legislative volunteers needed

Since we were founded, the Endometriosis Research Center has struggled to raise policymakers’ awareness of endometriosis and the dire state of funding for endometriosis research, support and education.

Over the years, we have been successful in facilitating the passage of several important legislative acts, but we need your help to pass even more. We cannot stop until every state in the nation recognises the painful and enigmatic nature of endometriosis, and provides the resources needed to help those suffering. 

You can support our efforts by urging your representatives to enact endometriosis legislation in your state and community today. For further information, visit the ERC website today.  

Are you interested in being a support group leader? The ERC has information for you - download the information kit in PDF format (172kb)

Member’s book

Endometriosis: Lighting the Path, a book written by Endometriosis Research Center member Angela Sachs, was published in October. For more information, contact the ERC, and we will put you in touch with Angela. Congratulations, Angela! 

Mrs Beaumont America

The Endometriosis Research Center is partnering with Mrs Beaumont America candidate, Amber Lanning. Amber will next compete for Mrs Texas, and has chosen endometriosis as her platform. She will work with the ERC to increase endometriosis awareness and education throughout Texas and the US. Visit the ERC website for more information and ways you can help. 

Writing campaign

The Endometriosis Research Center’s Writing Campaign continues to raise the awareness of endometriosis in the international media. To learn more about the campaign and get involved, visit the campaign’s webpage at www.endocenter.org/writingcampaign.htm, or contact Felicity Veasey at ERCFelicity@iglide.net. Whether you send one letter or a hundred, your words can make a difference!  

Fundraising Committee

The Endometriosis Research Center’s Director of Fundraising, Denise Childs, is seeking people for the ERC Fundraising Committee. The committee will plan and implement all our major campaigns and fundraising projects. To become involved, contact Denise at erc_denise_childs@yahoo.com.

In-person groups

The Endometriosis Research Center hosts nearly 40 in-person groups around the world. These volunteer groups are led by women with endo who dedicate their time and energy to helping others who may be suffering in silence. To find out about a group near you, or to host a group, visit our webpage at www.hcgresources.com/allercgroups.htm. Group Leaders must be independent self-starters who want to make a positive change in their local endometriosis communities. 

The Beach

Our friends at BomboBeach.com (The Australian Adhesions Support Group and The American Adhesions Support Group) recently held a successful meeting of members in Columbus, Ohio. Many ‘beach buddies’ came together to share their stories, pain, knowledge, friendship and mutual support, and support the ‘Spirit of Awareness’ campaign. They also celebrated the passage of the latest adhesion-related legislation, the Ohio Adhesion Related Disorders Resolution, and the publication of the latest adhesions article in the Pittsburgh Gazette [which was picked up by 18 other publications around the country]. Congratulations to BomboBeach for raising awareness about this painful disorder that affects millions of people with and without endometriosis! 

Survey results

The Endometriosis Research Center recently helped prepare an article for the Literature and Medicine Journal. The article investigated clinicians’ attitudes towards pain in patients with undiagnosed endometriosis. In particular, the article looked at whether the pain was perceived to be intentionally exaggerated, exaggerated as a result of chronic pain syndrome, imaginary, or emotionally or psychologically based. Some of the key findings were 

• 17% of the women consulted 1–5 doctors before being definitely diagnosed, while 9% consulted 6 or more

• 6% of the women deliberately exaggerated their pain to persuade their clinicians it was serious

• 17% of the women were told they were exaggerating their pain

• 17% of the women were told their pain was due to psychogenic or psychological causes

• 13% of the women were told their pain was imaginary

• 10% of the women believed their pain was imaginary

• 11% of the women deliberately withheld psychological or emotional information to prevent their doctors attributing their pain to psychological or emotional causes.