The Endometriosis Coping Zone Newsletter
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
The Coping Zone: "Where information is always free!"
Support Group News
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/.
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.
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.
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’
developing a European plan to lobby politicians, and
campaign for more funding for research, awareness and appropriate care for
launching a campaign to ascertain the number of women
diagnosed each year in the participating countries
establishing a forum for communicating and sharing of
The Alliance will meet
again on 14 September 2005 at the 9th World Congress on Endometriosis in
For more information about
the Alliance, contact
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 email@example.com.
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.
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
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
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
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
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
PDF format (172kb)
Endometriosis Screening &
Education Kit developed in collaboration with The United States Department
of Health & Human Services Office on Women's Health.
Download the information kit in PDF format (379kb) Includes information such
Endometriosis Self-Test: Do You
Have Endometriosis? Only Surgery can Diagnose the Disease, but this Test can
Help You & Your Doctor
Endometriosis: Answers to
Frequently Asked Questions: Your Guide to Understanding the Enigmatic
Endometriosis Pain Journal:
Monitor & Communicate Symptoms to Your Healthcare Provider
Where to Get Help: About Our Education, Awareness, Support & Research
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.
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.
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
Whether you send one letter or a hundred, your words can make a difference!
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 firstname.lastname@example.org.
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.
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
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
also recently inquired about members’ experiences with endometriosis
and thyroid diseases, which have been linked by some researchers. However, we
discovered that the overwhelming majority — 75.61% — of participants
had been diagnosed with endometriosis BUT NOT thyroid disease. These results do
not nullify previous research, but do open the doors for further investigations.
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
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.