We should set ourselves a goal of mentioning endometriosis at least once a week to someone and, if s/he doesn’t know about the disease, we get the opportunity to explain what endometriosis is, its impact, and its cost to society.

Padma Lakshmi speaking at EFA2012

The concept of “mentionitis” was introduced by Padma Lakshmi at the 3rd Annual Surgical/Scientific Symposium hosted by the Endometriosis Foundation of America (EFA2012) back in March.  She reminded us that when we are excited about something (a new boyfriend, a pending vacation, a new pair of shoes, etc) we tend to mention it a lot. It becomes a bit of an obsession and we get “mentionitis”.

To get others to take an interest in endometriosis perhaps we should mention it much more?

Mentioning endometriosis

Lone Hummelshoj, Editor-in-Chief for Endometriosis.org

Let me give you an example.  A week after EFA2012 I found myself on an early morning flight to Galway, Ireland.  As usual (I don’t do mornings!) I buried my head in a newspaper, as did the chap sitting next to me.  However, half-way through the flight we were both through, and I tentatively suggested that we might swap — it never hurts to get another perspective from a different newspaper.

Once finished with each others’ papers there was still time to kill before touching down on the Irish coast, and this is when the small talk began:

“So, are you going home for the weekend?”, he asked.

“No, this is my first visit to Galway; I am here to speak at a medical conference tomorrow”, I responded.

“Oh, what’s your specialty?”, he enquired.

And this is where I hesitated.  Normally, I just say “I work in women’s health” or “I deal with a specific female disease”, but then I was reminded of Padma’s words and thought: mentionitis, and thus responded:

“I am talking about endometriosis. I manage the two global scientific organisations for physicians who specialise in its treatment and research”.

“Really!”, he exclaimed, “my son is a gynaecologist and he is currently training to become a specialist in endometriosis!”.

This was not the response I had expected at all: it is so rare that I meet someone, who actually knows what endometriosis is, let alone knows someone who works in our field. We pushed the newspapers aside, and chatted for the rest of the flight about the challenges surrounding endometriosis and, what’s more, it turns out that I had met his son at a meeting in London last year.

Awareness spreads like circles of water

This time I didn’t teach someone new about endometriosis, but perhaps I contributed to the overall knowledge by confirming to him that his son was indeed working in a field that needs all the specialists it can get.

But perhaps this chap went on to talk about our encounter to someone else, and thus he has indirectly helped spread the word “endometriosis”…

From now on I’ll make a point of mentioning endometriosis to someone new at least once a week.

If we all do, millions will know about its impact before too long!

→ To keep up to date with news in endometriosis follow us on Twitter

See also

→ Impact of endometriosis
→ Cost of endometriosis
→ Padma Lakshmi’s presentation at EFA2012 (video)

Endometriosis: Science and practice must be described as the definitive and all inclusive book on endometriosis.  It provides a comprehensive approach to the biology, diagnosis, and treatment of endometriosis, showcasing the latest in molecular, genetic, and epigenetic research underlying the pathophysiology of endometriosis.

It is a must read for every single person who is serious about moving the field of endometriosis forward.

Expertly edited by professors Linda Giudice, Johannes Evers, and David Healy, the book provides a complete overview of the knowledge gathered from the increased understanding of endometriosis over the past 20 years.

This is the first time such a complete compilation has been published on endometriosis addressing not only basic research, diagnosis, and therapeutics, but also treatment outcomes and impact.

One-hundred-and-fourteen leading (and actively practising) surgeons, physicians, researchers, as well as emerging leaders in the field of endometriosis, have contributed with their insights into this complex disease providing very short links between the laboratory and clinical practice.

The ten sections of this 600-page book comprise:

1. History, epidemiology, and economics
2. Pathogenesis
3. Disease characterisation and classification
4. Biological basis and pathophysiology of endometriosis, including early origins of endometriosis, stem cells, angiogenesis, genetics, steroid hormones, inflammation, neuroendocrine aspects, and the mechanisms involved in pain and infertility
5. Models of endometriosis, including in vivo, in vitro, and animal models
6. Diagnosis of endometriosis, including surgical, biomarkers, imaging, proteomics, and transcriptomics
7. Medical therapies for pain
8. Surgical therapies for pain
9. Infertility and endometriosis
10. Associated disorders, including cancer, autoimmunity, and psychosomatic and compromised sexuality aspects.

The book concludes with an “eye to the future” in terms of emerging research, diagnostics, and therapeutics.

We hope that learners of all ages and from multiple disciplines, clinicians, researchers, and patients will benefit from the knowledge imparted in the pages of this book, which we hope will stimulate new knowledge, so one day we can cure endometriosis or, perhaps, even better, prevent it.

said the three editors.

Boston Children’s Hospital and Brigham and Women’s Hospital today announced the inception of The Boston Center for Endometriosis, a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis.

The Center is the first in the world of its kind and will serve as the premier diagnostic, treatment, research, and educational resource for the disease throughout a woman’s lifespan – from adolescence through adulthood.

After 14-year-old Emily Hatch of Wellesley was treated for endometriosis at Boston Children’s Hospital, her mother, Mary Alice, asked the surgeon what she could do to help researchers find better treatments and ultimately discover a cure for the painful, chronic disorder.

That conversation led to a gift of $3 million from the foundation started by Mary Alice’s grandfather, J Willard Marriott, to launch the Boston Center for Endometriosis.

Associate Professor Marc Laufer, Harvard Medical School

The Boston Center for Endometriosis is unique in its features. Currently, no one in the world has a teen-through-adulthood endometriosis programme that can ensure both seamless clinical care for patients while conducting research to fuel scientific progress

said Marc Laufer MD, Chief of Gynaecology at Boston Children’s Hospital, and a gynaecologic surgeon in the Center for Infertility and Reproductive Surgery at Brigham and Women’s Hospital.

The J Willard and Alice S Marriott Foundation’s gift will fund the Center’s innovative database and bio-repository and the Endometriosis Research Awards programme to encourage scientists to participate in the search for a cure. Half of the gift is a challenge grant that is contingent on raising another $1.5 million in research funds.

Assistant Professor Stacey Missmer, Harvard Medical School

The Center, through integration of clinical and scientific disciplines will bring together leaders in the study of endometriosis to advance our knowledge across the life-course through innovations in genetics, lifestyle, and environment to promote long-term health,

said Stacey Missmer ScD, Scientific Director of The Boston Endometriosis Center and researcher at Brigham and Women’s Hospital.

→ Follow Endometriosis.org on Twitter for instant news about endometriosis

Contribute to research in endometriosis

→ Make a donation to research in endometriosis

The first ever prospective study of the actual cost of endometriosis shows that loss of productivity, due to pain, is twice that of direct health care costs.

The World Endometriosis Research Foundation’s EndoCost study included 909 women with a diagnosis of endometriosis from 12 centres* in ten countries [1].

Over a two-month period these women filled in validated questionnaires in their own language assessing the impact of endometriosis on their lives, including questions on a number of subjects such as health care costs, work loss, and quality of life [2].

Professor Steven Simoens, University of Leuven, Belgium

A study like this, prospectively investigating the direct and indirect cost of endometriosis, has never been undertaken before, and we now have a much clearer picture of the actual cost of this potentially devastating disease

said principal investigator, Professor Steven Simoens.  The study was unique in that gynaecologists in each participating centres worked in parallel with health economists in each of the countries to calculate to actual cost of endometriosis.

The cost of endometriosis

The average cost of endometriosis is €9,579 per woman – per year.  This breaks down to an average €6,298 lost in work productivity and an average €3,113 for direct health care costs.  In other words: the cost of inability to work, due to symptoms, is twice that of the direct health costs!

Health care costs were mainly due to:

• surgery (29%)
• monitoring tests (19%)
• hospitalization (18%), and
• physician visits (16%).

It is estimated that 10% of all women of reproductive age have endometriosis [3,4], which would mean that the annual cost of endometriosis in the ten participating countries is estimated as follows:

High cost, little investment

The WERF EndoCost study, which was published this month in Human Reproduction [1],  showed that the cost of  of endometriosis is similar to that of diabetes, Crohn’s disease, and rheumatoid arthritis.

Lone Hummelshoj, Chief Executive, World Endometriosis Research Foundation

Yet, unlike these other well-known diseases, we see relatively little investment in research into the cause and disease mechanisms in endometriosis

said the Chief Executive of the World Endometriosis Research Foundation, Lone Hummelshoj, who is shocked by how much money is being lost by governments and health care systems who ignore endometriosis.

Decreased quality of life was the most important predictor of direct health care and total costs. Costs were greater with increasing severity of endometriosis and the presence of pelvic pain.

Loss of productivity due to the symptoms of endometriosis was also demonstrated in WERF’s Global Study of Women’s Health (GSWH), published last year in Fertility and Sterility [5], showing an average loss of productivity of 11 hours a week in women with endometriosis. Like the WERF EndoCost study, this loss of productivity was driven by pain and a consequent decrease in quality of life.

The World Endometriosis Research Foundation (WERF) works to raise sufficient funds to investigate disease mechanisms to improve treatments for endometriosis so that this vicious cycle can be halted for the next generation of women.

→ For instant news in endometriosis: follow us on Twitter

* The EndoCost Consortium

The EndoCost Consortium consists of: Leuven University (Belgium); Glostrup Hospital (Denmark); CHU de Clermont Ferrand (France); KEZ-Berlin (Germany); Medizinische Hochshule Hannover (Germany); Semelweis University (Hungary); University of Milano (Italy); University of Bern (Switzerland); University of Edinburgh (United Kingdom); The Cleveland Clinic (USA); University of Wisconsin-Madison (USA); University of Maastricht (The Netherlands).

References

1. Simoens S, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012 [epub ahead of publication]
2. Simoens S, et al. Endometriosis cost assessment (the EndoCost study): a cost-of-illness study protocol. Gynecol Obstet Invest 2011;71(3):170-6
3. Rogers PA, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46
4. Adamson GD, et al. Creating solutions in endometriosis: global collaboration through the World Endometriosis Research Foundation. J of Endometriosis 2010;2(1):3-6
5. Nnoaham KE, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96(2):366-373

See also

→ More about WERF’s EndoCost study and participating centres
→ Donate to the work of the World Endometriosis Research Foundation

Endometriosis Awareness takes place across the globe during the month of March.  In some countries it is for one week – in others it is for the duration of the month.

The KEY is to raise awareness of an (often) “invisible” disease which affects an estimated 176 million women worldwide during their reproductive – and most productive! – years. Endometriosis can have a devastating effect on quality of life due to the painful symptoms, and is the biggest cause of infertility in women.

Awareness is being raised within local communities, regionally, and nationally, and provides an opportunity to raise funds for research into better treatments!

→ Email us your activities and together we can truly make a difference!
→ Follow daily updates on TWITTER and help us make #endometriosis go viral!

Australia

3 MARCH 2012 (13.30-16.00)

Pain Management and Research
by Dr A Yazdani

QMIR – Level B Meeting Rooms
Clive Berghofer Cancer Research Centre
300 Herston Road, Herston
Brisbane

Cost: $5.00/person
→ Register at: www.qendo.org.au or call (07) 3321 4408

10 MARCH 2012 (13.30-16.00)

Discussion on endometriosis by:
Dr Ahmed Kassab – Gynaecologist
Jodie Painter – QIMR
Brett Kelly – Physiotherapist/Pain Management
Janie Simmons – Practical Pain Management

Cunningham Centre Toowoomba Hospital
Pechey Street entrance
Toowoomba

Cost: $5.00/person
→ Register at: www.qendo.org.au or call (07) 3321 4408

10 MARCH 2012 (13.00-15.00)

Discussion:

• What is Endometriosis?
• Endometriosis symptoms, causes, diagnosis and treatment
• What QENDO does
• Living and coping with Endometriosis
• How family members or partners can help
• Other causes for pelvic pain

Rockhampton Women’s Health Centre
225 Bolsover St
Rockhampton

Cost: $5.00/person
→ Register at: www.qendo.org.au or call (07) 3321 4408

These presentations will be followed by an informal discussion and afternoon tea, giving guests a chance to ask questions and meet other people with endometriosis.

For ALL of these events everyone is welcome to attend – endometriosis sufferers, families, teachers, nurses or anyone who would like to know more about reproductive health and endometriosis.

Don’t Suffer in Silence! Pain is not normal!

Austria

10 MARCH 2012 (09.30-18.00)

18.00: Evening event to celebrate our 10th birthday

Opening together with Gabriele Heinisch Hosek, Austrian federal minister for Women

Albert-Schweitzer-Haus
Schwarzspanierstraße 13
1090 Wien

Entrance is free, but registration is required for lunch and dinner.
→  Register here: office@eva-info.at

1 – 31 MARCH 2012

“EVA – Endometriose Vereinigung Austria” have 5,500 large posters displayed across Austria.

On the women’s heads it says “Crybaby”, “Mimosa”, “Sissy”, and “Frigid” …and then goes on to explain:

“Don’t let your friends make your diagnosis. Extreme menstrual pain (pain with sex) can be a symptom of endometriosis.”

Canada

10 MARCH 2012 (11.00-16.00)

Inaugural Endometriosis Symposium
by The Endometriosis Network

MaRS Discovery District
101 College Street, Main Floor
Toronto M5G 1L7

→ Registration at: www.endometriosissymposium.eventbrite.ca 

France

7 MARCH 2012

Two one-hour sessions to learn more about endometriosis
by Dr Eric Sauvanet
The Saint-Joseph Hospital
Paris

→ More information: http://www.endofrance.org/vieassociative_semaineendo2012.html

10 MARCH 2012

Highlights from the 11th World Congress on Endometriosis
by Professor Charles Chapron and Dr Panel
Paris

→ Mandatory registration at: http://www.endofrance.org/vieassociative_wce2011.html

10 MARCH 2012

Support Group Meeting
Bayonne

→ Registration: aquitaine@endofrance.org

Germany

2 – 3 MARCH 2012

Tagung für Betroffene und Interessierte: 
Stress durch Endometriose – Endometriose durch Stress?!

MEDIAN Klinik am Burggraben – Bad Salzuflen
Alte Vlothoer Str. 47-49
32105 Bad Salzuflen

→ Informationen zu Tagung und Anmeldung unter www.endometriose-vereinigung.de

Iceland

24 FEBRUARY – 1 MARCH 2012

During the last few weeks of February the Icelandic Endometriosis Society has had a number of articles published in Icelandic publications to raise awareness of endometriosis, and have featured on public radio and TV!

During their Endometriosis Awareness Week:

• There will be a published article in Fréttablaðið.
• We plan to have a banner on our Facebook page.
• The plan is also to light up the hospital in yellow on Thursday 1 March.
• We are trying to gain more media access.
• The last day of the endo awareness week, will be a yellow t-shirt day (event on Facebook) and a coffee house meeting for endo girls to meet and chat.

→ For more information: www.endo.is

Ireland

10 MARCH 2012 (14.00-17.30)

Endometriosis research and treatment
by Dr Hugh O’Connor
Dr Moya McMenamin
Netanya Curtis

Lucan Spa Hotel
Co Dublin

→ Registration (free) at: info@endo.ie
or by phone or text to 086-3203855

Endo Awareness Donegal
An information stand will be placed in the main reception of Letterkenny General Hospital and in Letterkenny Institute of Technology during Endometriosis Awareness Week.

→ For further information contact Kathleen King, via the EAI email address: info@endo.ie

24 MARCH 2012 (10.00-14.00)

Endometriosis Educational Seminar
by Dr Mo’iad Alazzam with guest speaker Lone Hummelshoj

This event, which takes place at the Galway Clinic in Galway, is open to all women living with endometriosis or anyone interested in learning more about this disease. Registration is free, but you do need to register.

→ Programme [PDF]
→ Register by 20 March at endometriosisireland@gmail.com or  (091) 720159.

Israel

7 MARCH 2012

Clinical dilemmas in Endometriosis in 2012
organised by David Soriano

Endometriosis center
Sheba Medical Center
Tel-Aviv

→ Registration (free): marketing@sheba.health.gov.il
→ 2012-awareness-programme-Israel (PDF)

Italy

10 MARCH 2012 (08.45-16.30)

Update on best practices in endometriosis
by APE, feauring: P. Vercellini, A. Maiorana, E. Coccia, C. De Cicco, M. Malzoni, L. Minelli, V. Remorgida and A. Ussia

In the afternoon, APE will also host senator Bianconi and other politicians who will explain what endometriosis patients can expext from local government with local TV recording the roundtable with the politicians.

Chamber of Commerce in Parma

→ Reserve a place:  http://www.apeonlus.com/convegno_endometriosi_10marzo.php

5 – 11 MARCH 2012

During the week, APE will open 15 information booths all over Italy, including: Firenze, Ravenna, Gorizia, Udine, Trieste, Messina, Palermo, Reggio Calabria, Bra, Ravenna, Cagliari, Taranto, Napoli, and Genova.

→ Schedule of events: http://www.apeonlus.com/dettaglio-news-527-3-11-marzo-2012-viii-settimana-della-consapevolezza-dellendometriosi

New Zealand

8 MARCH 2012 (07.45-10.00)

Endometriosis – IT’S A BIG DEAL

International Women’s Day Breakfast
Ellerslie International Flower Show
Christchurch

Endometriosis New Zealand’s nationwide awareness video clip Endometriosis, it’s a BIG DEAL will be launched at this high profile fundraiser, and ENZ will continue throughout the month of March to raise awareness of the disease through local initiatives.

→ Registration at: http://360endo.eventbrite.com/
→ Endometriosis is a BIG DEAL (video)

Nigeria

23 MARCH 2012 (at 11.00)

Doctors’ Forum
Asaba Centre
5 Erhuvwit St
off Summit Road by Benzia Hotel
Asaba

→ To register call: 0706 401 0877

24 MARCH (10.00)

The Endometriosis Walk
Meet at City Mall
Lagos Island

MARCH 24 (13.00)

Open Forum
Four Points Sheraton Lagos
Plot 9/10 Block 2
Oniru Chieflainey Estate
Victoria Island
Lagos

→ To register call: 0706 401 0877

Poland

In Poland, the Honorary Patronage on the informational campaign organized for the 5-11 March has been, as earlier, taken by the First Lady of the Republic of Poland Anna Komorowska. The information campaign planned for the week are organized by Polish Endometriosis Association (Polskie Stowarzyszenie Endometrioza) and Foundation For Women (Fundacja Dla Kobiet).

During the Endometriosis Awareness Week 2012 we plan the following events:

6 MARCH (10.00)

Press conference: “Endometriosis, what we know about being a woman?”
Members of Polish Endometriosis Association and invited specialists will discuss the problems related to endometriosis.

Polish Press Agency
Warsaw

7 MARCH 2012 (12.00-14.00 and 15.00-19.00)

Open Day
Gadka Szmatka café
Mokotowska Str. 27
Warsaw

10 MARCH 2012 (10.00-14.00 and 15.00-17.00)

Open Day
Cinnamon restaurant
Mikołowska Str. 9
Katowice

11 MARCH 2012 (11.00-14.00 and 15.00-18.00)

Chimera – Winiarnia
Dominikańska Str. 7
Poznań

Open Days are meetings and conferences dedicated both for women with diagnosed endometriosis and those who suspect they may be ill. Open Days is a great opportunity to meet other women fighting with the disease, share experiences and learn more about the methods of improving quality of life. For the women who think they may be ill it is a chance to talk to a specialist about the symptoms. Everybody will have a unique occassion to learn more about endometriosis – its symptoms, consequences, methods of diagnosis and treatment.

During the meetings there will be a possibility of consultation with the specialist we cooperate with: e.g. Joanna Pabich – Worożbit MD, Izabela Zieliśka MD, a dietetician Ilona Cichecka, MSc, and a psychologist Joanna Bylinka MA. Furthermore, the following lectures will be offerred:

➢ What is endometriosis?
➢ Can our diet influence endometriosis? Can a diet be a treatment?
➢ How to cope with chronic pain?

→ To register go to: www.pse.aid.pl

Puerto Rico

3 MARCH 2012

Circles of support and information
by Fundacion Puertorrriqueña de Pacientes con Endometriosis

The Penthouse
The Auxilio Mutuo Hospital
San Juan

Circles….. of support and information will consist of round tables led by one or two experts where patients will have the opportunity to ask questions, discuss their issues, and obtain and give support, in an informal, intimate setting that we hope will be highly interactive and productive. After 30 minutes of discussion, the group will then move to the next Circle where another topic of relevance to the patients will be discussed. Among the topics to be part of Circles are: Endometriosis 101, Wellbeing, Nutrition, Labor Law, Stress management, and Yoga. There will be a Circle for spouses and another for family members/friends.

→ To register call 787-840-2575 x2206/2192 or SMS to 787-362-2375 or send an email to endopr@gmail.com

Singapore

20 MARCH 2012 (12.00-13.00)

Lunchtime Talk
NUHS Tower Block, Auditorium

→ For more information and to register: http://medicine.nus.edu.sg/obgyn/e_Endometriosis_Awareness.htm

22 MARCH 2012 (12.00-13.00)

Fun and Light Exercise Session
NUHS Tower Block Auditorium/ Staff Club (Main Building)

→ For more information and to register: http://medicine.nus.edu.sg/obgyn/e_Endometriosis_Awareness.htm

24 MARCH 2012 (14.00-17.00)

O&G GP Forum on Endometriosis
NUHS Tower Block, Auditorium

→ For more information and to register: http://medicine.nus.edu.sg/obgyn/e_Endometriosis_Awareness.htm

31 MARCH 2012 (14.00-17.00)

Public Forum on Endometriosis
NTUC Centre, Room 801

→ For more information and to register: http://medicine.nus.edu.sg/obgyn/e_Endometriosis_Awareness.htm

Sweden

5 MARCH 2012 (18.00-20.00)

Members meeting in Vasastaden, Stockholm
→ To register: sanna@endometriosforeningen.com

5 – 9 MARCH 2012

Photo exhibition at the Young People´s Clinic in Sundsvall. See poster for information.
→ Information: kontaktsundsvall@endometriosforeningen.com

7 MARCH 2012 (18.30-20.30)

Members meeting in Gävle to discuss endometriosis and work-related issues.
→ To register: kontaktgavle@endometriosforeningen.com

7 MARCH 2012 (18.30-20.30)

Members meeting in Uppsala at café Konstantina to discuss endometriosis and nutrition.
→ To register: kontaktuppsala@endometriosforeningen.com

8 MARCH 2012 (17.30-21.00)

Members meeting in Gothenburg at Landsvägsgatan 13 to discuss problems to get pregnant, IVF and other related questions.
→ To register: mariebernstsson@hotmail.com

9 MARCH 2012 (18.00-20.00)

Seminar in Sundsvall, at Mitthögskolan, room 108, where our board member, associate professor Elisabet Andersson, gives a seminar and answer questions. Admission is free, registration in advanced not necessary. See poster for information.
→ More information: kontaktsundsvall@endometriosforeningen.com

20 MARCH 2012 (18.00-20.00)

Seminar at Malmö Högskola where members, medical staff, politicians and other people are invited to listen to Doctor Margita Gustafsson.

→ Registration: www.endometriosforeningen.com
→ Questions: kontaktmalmo@endometriosforeningen.com

21 MARCH 2012 (19.00-21.00)

AGM for Endometriosföreningen, Sweden and local Group Stockholm. Meeting is via webex
→ Register with Nina by 20 March at the latest: kontaktgoteborg@endometriosforeningen.com

22 MARCH 2012 (17.30-21.00)

Members meeting in Gothenburg, Landsvägsgatan 13
→ For registration and questions: mariebernstsson@hotmail.com

28 MARCH 2012 (18.30-20.30)

Members meeting in Västerås, Domherrevägen 4, to discuss: endometriosis care in Västmanland and ongoing activities.
→ For registration and questions: ordf@endometriosforeningen.com

In addition to distributing flyers and posters throughout Sweden, Endometriosforeningen will also work on getting articles into local newspapers, a follow-up of an article in the Swedish newspaper Aftonbladet in February concerning the death of one of our members due to endometriosis. We also demand to politicians to subsidise the new medicine, Visanne.

United Kingdom

1 – 31 MARCH 2012

Endometriosis UK will be launching its campaign: “Are my periods normal?”

• Production of two leaflets of easy-to-read information aimed at teenage girls and young women, one to explain periods and what to expect, and the second more specifically about endometriosis. Poster to support and signpost these materials and other activity. All materials to be produced in electronic form to be printed out as needed.
• Launch of a new free blogging micro-site, called www.aboutmyperiods.wordpress.com featuring the information above, and including case studies from other teens, blogging opportunities and signposting to other help including endometriosis-uk.org and other sites.
• Regular and promotional messages posted on various social media outlets including facebook (Endo UK and Aboutmyperiods), twitter (as facebook), HealthUnlocked (Endo UK only) and Bebo (Aboutmyperiods only)
• Press release to national and regional media (to go Friday 2 March), and via members and supporters (with suggested ‘Letter to Editor’), including case studies where appropriate. Local papers already known to be featuring: Enfield & Manchester Evening News
• Articles and features on itv DayBreak (tbc) and Metro newspaper (Infocus) and in the following magazines: Healthy Magazine (Holland & Barrett’s women’s health magazine); Cosmopolitan – A. Week; Zest – A. Week. Other possible features include Daily Express, Pick-Me-Up
• Email notification out to all UK MPs during Awareness Week to share the information and the report on activity.

→ For more information: information@endometriosis-uk.org

7 MARCH 2012 (19.00-20.00)

Dian Shepperson Mills will give a talk on endometriosis available live on You Tube at The Nutri Centre.

→ Watch live at: http://www.nutricentre.com/t-video.aspx

USA

14 – 15 MARCH 2012

3rd Annual EFA Scientific/Surgical Symposium:
Tapping the roots for the next generation 

Einhorn Auditorium at Lenox Hill Hospital
131 E. 76th Street
New York City

→ Registration at: www.endofound.org/medicalconference

15 MARCH 2012 (19.00-23.00)

4th Annual Blossom Ball for Endometriosis
by the Endometriosis Foundation of America

New York Public Library
Stephen A Shwarzman Building
5th Avenue and 42nd Street
New York

→ For table and ticket information: www.endofound.org/blossomball

24 MARCH 2012 (08.00-13.30)

Living with endometriosis
A conference for teens and families
Speaker: Marc Laufer

Children’s Hospital Boston
300 Longwood Avenue
Boston, MA 02115

→ For full programme and registration: www.youngwomenshealth.org/endo_conf.html
→ More information: phaedra.thomas@childrens.harvard.edu or +1 617 355 7712

1 – 31 MARCH 2012

The Endometriosis Research Center will once again be hosting their annual Adopt a Doc campaign throughout March and beyond. Updated materials will be available to any party interested in raising awareness about the disease throughout their local physician and nursing communities. Newly updated ERC brochures are also now available.

→ To receive brochures for distribution please email askerc@endocenter.org

Launching in March, the ERC’s Girl Talk Program is delighted to present a new adolescent endometriosis education kit in partnership with the Center for Endometriosis Care.

→ To receive the education kit please email askerc@endocenter.org

Got talent?
ERC is pleased to announce a t-shirt design contest now underway to raise awareness and donations. Please contact the organizer directly for details and to submit your designs

→ rhysharper@gmail.com
→ +1 646-820-5316

For other fundraisers and various upcoming events, please visit ERC on Facebook at https://www.facebook.com/EndoResCenter.

Global

You can help raise awareness by sharing the World Endometriosis Society’s film about endometriosis, its symptoms, diagnosis, treatment options – and where to find support. Post the film on your websites, blogs, Twitter, and Facebook profiles.

Raise money for endometriosis research?

→ Contact the World Endometriosis Research Foundation (WERF) about how you can use your event to raise money for research!

Events in 2011

Get inspiration from Endometriosis Awareness Events in 2011!

The Endometriosis Foundation of America’s 3rd Annual Symposium this week was packed full of specialists in endometriosis sharing the latest developments in this field, including basic science and the forefront of surgical treatment of the disease – and an audience ready for debate!

Throughout this two-day meeting discussion played a key role, which was a central part of the purpose of the meeting: the exchange of ideas from a multi-disciplinary faculty.

Under the scientific chairmanship of doctors Tamer Seckin, Harry Reich, and CY Liu, thirty-six international faculty came together to address the underlying issues of endometriosis with a view to ensure better treatments for the next generation of women.

The meeting was kicked off by professor emeritus Jack Sciarra, who addressed a historical perspective of hysterectomies – a staggering 600,000 are still performed each year in the USA.

→ Professor Sciarra’s presentation (film and transcript)

All the highlights below link to each presenter’s film and transcript.

Session I

Session I comprised lectures by doctors Antonio Setubal and Harry Reich discussing the key role of film in the excellency of laparoscopic surgery as a learning tool and quality control measure, deep fibrotic endometriosis of the cul-de-sac and bowel, and the indication and techniques of hysterectomy.

The major question being: is what we diagnose today as endometriosis really endometriosis?

Session II

Dr Maurice Chung commenced this session by discussing simple procedures to reduce unnecessary surgeries, followed by Dr Tamer Seckin who explained endometriosis of the retroperitoneum (bladder, ureter, and pelvic floor).

Dr Steven Palter went on to talk about the now and the future in terms of the current and potential technological transformation of surgery when you combine film and medicine.

Session III

During the lunch session Padma Lakshmi, co-founder with Dr Tamer Seckin of the Endometriosis Foundation of America, took the microphone to talk about her journey with endometriosis.   This was followed by the personal journeys of three women with endometriosis, Jhumka Gupta, Ekta Misra, and Noemi El Hadad, whose stories were debated with the audience.

On the second day of the conference, Thursday the 15th of March the key message was:

think paradigm challenging thoughts!

Session I

Linda Griffith PhD kicked off the second day by provokingly proclaiming that endometriosis is not a benign disease, her rationale being that a disease which has such a tremendous impact on a person’s life is not “benign”!

Dr Patrick Yeung went on to ask whether endometriosis can be eradicated through early detection and complete excision, followed by Professor Thomas D’Hooghe who, in a similar vein, queried if early detection and treatment can prevent adult endometriosis?  The conclusion was that we don’t know, but that this should not prevent anyone from treating endometriosis at the earliest onset of symptoms!

Stacey Missmer ScD concluded this session by emphasising the importance of what we do now does matter later!

Session II

For the past three years, EFA has honoured outstanding pioneers in the field of endometriosis*.

Professor Hugh Taylor, Yale School of Medicine

This year’s Scientific Honouree was Professor Hugh Taylor, Yale University, recognised for his outstanding work in genetics, epigenetics, and stem cells, which was the topic of his key note lecture.   Professor Taylor has recently published a description of the genetic basis of endometriosis suggesting that a specific gene mutation may shed new light on different types of endometriosis, which will be valuable in targeting treatments to specific types of the disease.

He was followed by Dr Grace Janik, addressing applied anatomy for the treatment of endometriosis, and Dr Juan Salgado-Morales, who explained the role of sonography in the early diagnosis of deep infiltrating endometriosis.

Session III

Professor Charles Koh

Session III saw the second key note lecture of the day delivered by Clinical Honouree Professor Charles Koh, who as a surgical pioneer merged the art of microsurgery to laparoscopic surgery and performed the world’s first laparoscopic tubal anastomosis in 1992.   In his lecture Dr Koh explained how to merge micro surgery with laparoscopy: excision surgery that gives rather than takes away.

Dr Charles Miller went on to discuss laparoscopic surgical treatment for pelvic pain, followed by a compelling presentation by Dr Arnold Advincula arguing for the next frontier in endometriosis surgery: robotically assisted surgery.

The day concluded with a debate on the ongoing challenge of determining which types of endometriosis warrant which type of treatment and, indeed, whether different types of endometriosis can be identified through new classification systems and thus make treatment outcome and further risk of recurrence predictable, as expertly explained by Dr David Adamson.

The Annual Scientific Symposium by EFA has, in its third year, proven to be meeting where you want to be, if you are seriously involved in endometriosis, to share leading edge technologies with your peers and debate the value of these.

→ Keep up to date with instant news in endometriosis by following us on Twitter

*Previous EFA Honourees

2009:  Harry Reich
2010:  Camran Nezhat (clinical) and Linda Griffith (scientific)
2011:  David Redwine (clinical) and Caroline Gargett (scientific)

A study published today in Lancet Oncology suggests that women with endometriosis are associated with  a higher risk of developing three specific types of ovarian cancer.

However, the World Endometriosis Society (WES) explains that the overall risk factor for women with endometriosis to develop ovarian cancer continues to remain low.

In this study, a team from The Ovarian Cancer Association Consortium (OCAC) calculated the size of the association between endometriosis and the risk of the five major ovarian cancer histological subtypes separately (high-grade serous, low-grade serous, clear cell, endometrioid, and mucinous carcinomas). The study consisted of a pooled analysis of 13 case-control studies, across North America, Australia, and Europe, which included data from over 23,000 women (13,326 controls, 7,911 with invasive ovarian cancer, 1,907 with borderline cancer) [1].

The authors found that women with a history of endometriosis are significantly more likely to develop three specific types of ovarian cancer (clear cell, endometrioid, and low-grade serous).

World Endometriosis Society explains the real risk

According to the article published today, women with endometriosis have an odds ratio of about 1.5 of developing an invasive ovarian cancer compared to the general female population.

Professor Paolo Vercellini, WES President

“From this point of view, these data are “reassuring” in comparison with some previous reports indicating a much higher risk. An odds ratio of 1.5 means that a woman with endometriosis has a life-time risk of developing an ovarian cancer of about 1.5% instead of 1%”

said World Endometriosis President, Professor Paolo Vercellini.

Whereas the study showed no link between endometriosis and high-grade serous, mucinous, serous borderline, or mucinous borderline ovarian cancers, the authors stress that their paper describes for the first time an association between endometriosis and low-grade serous ovarian cancers translating to a doubling of the risk in women with a history of endometriosis.

Professor Vercellini agrees this is an important finding, but does offer another word of caution:

This finding only has pathogenic and not clinical implications, as the incidence of this cancer subtype is limited to 336 out of 7911 cases in this pooled analysis and thus the practical consequences are modest.

Indeed he stresses that it is important to be cautious with the definition of endometriosis in general as a precursor lesion for clear-cell and endometrioid ovarian cancers, as reasonably only atypical endometriosis should be considered a definite precursor lesion [2].

Furthermore, without the specification of which sub-types of endometriosis, the lack of information on subsequent treatment with or without danazol, and the possible differential recalling rate between cases and controls, there are still some uncertainties that need to be resolved in future studies.

In particular, future studies need to determine whether the association is causal with a clear temporal relationship or merely association due to exposure to shared risk factors.

Protecting against ovarian cancer

This study, in line with previous studies on endometriosis and cancer, shows that most women with endometriosis do not develop ovarian cancer.

However, healthcare providers should be alerted to the increased risk, however slight, of specific subtypes of ovarian cancer in women with a history of endometriosis

Interestingly the authors have chosen not to mention the protective effect of oral contraceptives, bearing in mind that one of the co-authors is also the co-author of the article by Modugno et al demonstrating the effect of OCs on ovarian cancer risk in women with endometriosis [3].

References

1. Pearce CL et al. Association between endometriosis and risk of histological subtypes of ovarian cancer: a pooled analysis of case–control studies. Lancet Oncology 201213(4):385-394.
2. Wei JJ et al. Endometriosis and ovarian cancer: a review of clinical, pathologic, and molecular aspects. Int J Gynecol Pathol 2011;30:553-68.
3. Modugno F et al. Oral contraceptive use, reproductive history, and risk of epithelial ovarian cancer in women with and without endometriosis. Am J Obstet Gynecol 2004;191:733-40.

Researchers at Yale School of Medicine may have, for the first time, described the genetic basis of endometriosis. The researchers’ discovery of a new gene mutation provides hope for new screening methods  - at least for certain types of endometriosis.

Published this week in the online issue of EMBO Molecular Medicine, the study from Hugh Taylor’s team explored an inherited mutation located in part of the KRAS gene, which leads to abnormal endometrial growth and a risk of developing endometriosis.

Whereas endometriosis is suspected to be heritable, the specific genes, or gene, responsible for this disease have not previously been identified. In mice, activation of the KRAS gene causes spontaneous endometriosis, however no mutations in this gene have been identified previously in women with the disease.

KRAS is regulated in part by small RNA molecules called microRNAs. One microRNA called let-7 binds near KRAS and prevents the expression of this gene.

Taylor’s team screened 150 women with endometriosis for a mutation in the site of let-7 binding in the KRAS gene and found that 31% had the mutation as opposed to only 5% in the general population. This mutation leads to greater KRAS expression in endometrial cells which in turn causes them to grow faster, invade more, and to loose some of their ability to respond to progesterone (progesterone resistance being another known factor in endometriosis).

This mutation has been identified previously in women with ovarian cancer, perhaps explaining the possible increased risk of this disease in some women with certain types of endometriosis.

What does all of this mean?

According to Professor Taylor it is expected that these findings will enable genetic testing for disease risk in those women with KRAS mediated endometriosis. The identification of KRAS alterations in endometriosis also suggests new potential therapies that specifically target this pathway.

Professor Hugh Taylor, Yale School of Medicine

This may be a way to identify who among women with endometriosis is at higher risk for cancer.  We have not proven that this test can predict cancer yet, however I am hopeful that it will save lives by identifying those at risk once further testing is done prospectively.

As for screening, it will not be present in all endometriosis.  There are likely several pathways to get the disease. It will likely work like BRCA testing for breast cancer:  if your mother has endometriosis and the mutation then you should be tested.  If you have it you are at risk.

said Taylor, who also emphasised that if you do not carry this mutation then you cannot say that you will never get endometriosis, but rather that you might not get this particular type of the disease.

Professor Taylor’s research, and comments, lend fuel to the speculation that what we today call “endometriosis” may be more then one disease – each with its own complex trait.  Just like certain cancers.

Watch this space for more updates on research in endometriosis and follow us on Twitter for instant updates!

Reference

Olga Grechukhina et al. A polymorphism in a let-7 microRNA binding site of KRAS in women with endometriosis. EMBO Mol Med 2012;4:206-17

Professor Linda Giudice, University of California, San Francisco

Professor Giudice is a biochemist, gynaecologist, and reproductive endocrinologist who specialises in endometriosis, implantation and ovulatory disorders, infertility, and assisted reproduction.

She is President Elect of the ASRM and the World Endometriosis Society; Vice President of the World Endometriosis Research Foundation; a leader in research on the environmental impacts on reproductive health and founder of the UCSF Program on Reproductive Health and the Environment (PRHE); and a former president of the Society for Gynaecologic Investigation (SGI).

Professor Giudice has served on numerous NIH study sections, is the former Chair of the Reproductive Health Drugs Advisory Committee to the FDA, and chaired the NIH Reproductive Medicine Network and Specialised Cooperative Centers Programme in Reproduction and Infertility Research Steering Committees. She was elected to the Institute of Medicine of the National Academies in 2002 and is currently a member of the IOM Health Sciences Policy Board. In 2011, Professor Giudice was elected Co-Chair of the NICHD Director’s Reproduction Vision Workshop.

Giudice’s contribution to reproductive science

In her research, Professor Giudice focuses on endometrial biology and placental-uterine interactions relevant to implantation and pregnancy disorders, environmental impacts on reproductive health (including endometriosis), and human embryonic and endometrial stem/progenitor cells.

Professor Giudice is the recipient of numerous awards for her work including the 2008 SGI President’s Distinguished Scientist Award, the 2008 Women in Science Award from the American Medical Women’s Association, and the ASRM 2008 Distinguished Researcher Award.

She was honoured as one of the NIH Great Teachers and the NIH Perinatology Branch Wall of Honour. She is also the recipient of the American Infertility Association “Illumination Award” for her work on the environment and reproductive health.

The AAAS fellowship recognises Professor Giudice’s distinguished contributions to the field of reproductive medicine and reproductive science, including endometrial biology, environmental impacts on reproductive health, infertility, and human embryonic and endometrial biology.

The award will be presented at the AAAS Annual Meeting on 18 February 2012  in Vancouver, Canada.

The Colour Atlas, authored by doctors Dan Martin, David Redwine, Harry Reich, and Arnold Kresch, was first published in 1990.

Recognition of endometriosis is necessary for diagnosis and treatment, and as this volume demonstrates the diagnosis of endometriosis and differentiation from other diseases of similar appearances can be difficult.

This volume provides, in addition to descriptions of retroperitoneal disease, unique photographs of various atypical presentations of endometriosis as well as of diseases that may masquerade as endometriosis.

As John Rock writes in the foreword:

Removing these lesions requires careful observation not only for dark puckered lesions but also for the subtler varieties.  The gynaecologist will find the text and slides a valuable addition to his or her library. Careful study of the atlas will help the laparoscopist identify lesions he or she may not have appreciated in the past.

Download the Colour Atlas.