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 2011.
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.

Endometriosis Awareness Week in Europe, Africa, Australasia, and South America is 5 - 11 March 2012, and in the United States and New Zealand it is for the entire month of March.

Awareness can be raised within local communities, regionally, and nationally, and also provides us with 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!

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, and Twitter and Facebook profiles.

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!

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

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

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.

During their Endometriosis Awareness Week, starting this Friday:

• 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

Israel

7 MARCH 2012

Clinical dilemmas in Endometriosis in 2012
organized by David Soriano

Endometriosis center
Sheba Medical Center
Tel-Aviv

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

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/

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

22 MARCH 2012 (12.00-13.00)

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

24 MARCH 2012 (14.00-17.00)

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

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

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

Raise money for endometriosis research?

What are YOU going to do?

Please get involved with your national support organisation! – Whatever you can do really will make a difference for the estimated 176 million women worldwide who suffer from endometriosis.

→ EMAIL US with your activities and these will be included on this page for everyone to join in – and as an inspiration for groups further away! This page will be updated weekly from January 2012 and until the end of March 2012.

→ 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!

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 Molecular Medicine 2011

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.

Two laparoendoscopic surgeons provide their experienced views on why we should wait for data, rather than respond to marketing claims.

A little over 10 years ago, the Food and Drug Administration (FDA) in the United States approved the use of the surgical robot to assist in the performance of laparoscopic surgery.

By that time, operative laparoscopy had come to be the predominant approach for some kinds of surgery (cholecystectomy, appendectomy, tubal sterilisation, treatment/removal of ectopic pregnancies, etc.) (Footnote: After FDA approval, instrument manufacturers are subject to almost no monitoring of marketing claims.)

Techniques for laparoscopic hysterectomy were developed in the late 1980s, but 15 years later, in the early 2000s, only about 12-15% of hysterectomies were done laparoscopically in the United States. In many countries in Europe, laparoscopic hysterectomy was adopted at a more brisk pace. For example, in Germany, about 60% of hysterectomies are done laparoscopically.

Enter the robot, approved for use in gynaecologic surgery in the US in 2005. What should its role be in gynaecologic surgery? Can it do laparoscopic gynaecologic surgery in general, and treatment of endometriosis in particular, better than regular “traditional” laparoscopy?

Surgical expertise comes with experience

The aspects of a surgical procedure that result in quick and widespread adoption of a laparoscopic technique include the relative difficulty of the surgical task and the annual volume done by the typical surgeon.

Professor John Steege

For example, laparoscopic cholecystectomy is relatively simple, involving the division of the cystic duct, the cystic artery, a few veins, and some connective tissue; the difficulty varies relatively little from one case to the next. The average general surgeon does many of these each year.

Within 5 years of the debut of laparoscopic cholecystectomy, well over 50% of surgeries were done with this technique, to the great benefit of patients. A slightly less clear, but similar, case can be made for laparoscopic appendectomy and for ectopic (tubal) pregnancies.

However, gynaecologic surgeries are more variable in the challenges they present:

• fibroids can be large or small, few or many, and can be in peculiar places;
• endometriosis can vary over a wide range of severity, only some of which can be measured by pelvic examination or imaging prior to surgery;
• adhesions or scar tissue from infection or previous surgery can also vary widely in degree, and usually cannot be seen at all well on imaging studies (ultrasounds, CT scans, MRIs).

In the USA, this issue, together with the fact that the average practicing gynaecologist performs only about a 12-15 major surgeries yearly, has slowed the adoption of minimally invasive surgical techniques.

So, does the robot aid gynaecological surgery?

The introduction of robotics to gynaecologic surgery has no doubt brought wider public attention to the advantages of laparoscopic surgery.

While this seems to have increased the proportion of surgeries done laparoscopically, the process of introducing robotics has given rise to a number of myths, none of which has any supporting evidence in the literature:

Where does this leave the prospective patient?

The experience of the surgeon would seem to be much more important than would their acquaintance with the robot. The patient might therefore consider asking the following questions when a surgery is being discussed:

Professor Philippe Koninckx

How experienced is your prospective surgeon?

Before agreeing to any surgery – robotics or otherwise – you need to ascertain for how long the surgeon has been doing this type of surgery. You may wish to ask:

1. How long has s/he been doing this type of surgery?
2. How many cases a year do s/he perform by each method?
3. Out of 10 cases, how often do s/he have to convert to open (laparotomy)?
4. Is s/he comfortable working in the spaces underneath the surface of the pelvic lining (peritoneum, ie. around the ureters and bowel)?
5. What complications have occurred in his/her surgeries?
6. Is s/he willing to provide a video of the entire surgery for quality control?

See also: Ten things to consider before choosing a specialist

Things to consider before agreeing to robotic surgery

Are there dangers to using the robot? There would seem to be two to be aware of:

1. The absence of “tactile feedback”: in other words, the surgeon cannot feel the resistance of tissue as it is grasped and treated. S/he has to rely on only what can be seen, not felt.
2. The social pressure to keep using the robot even when the surgery is not going well. This happens when the expectation that the surgery will be completed laparoscopically pushes the surgeon to continue with it to a point that exceeds his/her experience and capability.

The literature documents that complications are equivalent when comparing laparoscopic with robotic-assisted laparoscopic surgeries [1,2]. However, almost all of these series are published by experienced laparoscopic surgeon. The complications of laparoscopic surgery done by less experienced surgeons most often go unreported. Unfortunately, these often include injury to the bowel or ureters.

Some surgeons may strongly prefer to use the robot, but that is their personal preference, not one that is supported by real data. The robot is a very costly piece of medical equipment, and at a time where it is difficult to get adequate reimbursement for complete laparoscopic treatment of endometriosis, it appears to be an unnecessary added expense.

As time goes on, however, we may experience an understanding of its place in medicine. However, at present, for most gynaecologic surgeries, it has no demonstrated advantages. The skill and experience of the surgeon are far more important.

Remember: it’s not the robot that does the surgery, it’s the surgeon!

References

1. Cho JE, Shamshirsaz AH, Nezhat C, Nezhat C, Nezhat F. New technologies for reproductive medicine: laparoscopy, endoscopy, robotic surgery and gynecology. A review of the literature. Minerva Ginecol 2010;62(2):137-67.This review notes more complications in the lymphatic systems (lymphocysts, lymphoceles, and lymphedema) in robotic assisted cases compared to laparoscopy and laparotomy groups in cervical cancer patients.
2. Bedient CE, Magrina JF, Noble BN, Kho RM. Comparison of robotic and laparoscopic myomectomy. Am J Obstet Gynecol 2009;201(6):566.Short-term post surgical outcomes were similar after robotic and laparoscopic myomectomy.

» Keep up with news and opinion in endometriosis by following us on Twitter

Pain during or after sexual intercourse is a common symptom for women with endometriosis.

Unfortunately, all too often it causes couples immense emotional pain and turmoil. Some of this can be avoided with an understanding of the problem, better communication, and a little experimentation.

Up to 50% of women with endometriosis complain of painful intercourse

The pain of painful intercourse has been described as sharp, stabbing, jabbing or a deep ache for the woman. It ranges in intensity from mild to excruciating. It may be felt during intercourse, for up to 24–48 hours after intercourse, or both.

Some women experience pain with any form of intercourse, but others experience it only with deep penetration.

Some women feel pain only at certain times of the month, such as around the time of the period, while others feel it throughout the month.

That’s the challenge with women with endometriosis:
our disease is not predictable!

Painful intercourse (dyspareunia)

Painful intercourse is usually caused by stretching and pulling of endometrial implants and nodules located behind the vagina and lower uterus. Sometimes, it is caused by vaginal dryness as a result of hormonal treatment or a hysterectomy in which the ovaries have been removed.

Dealing with pain during intercourse

Dealing with painful intercourse can be a difficult and emotional task. It needs open and honest communication between you and your partner. It also needs both of you to be patient and understanding towards each other. In particular, you need to develop an awareness of each other’s predicament and feelings. Without these efforts, dealing with the problem can quickly degenerate into an emotional battlefield.

Communicate – it is difficult but essential

As a woman with endometriosis you need to explain to your partner the nature of your pain, and how it affects you, physically and emotionally.

You also need to talk about such things as:

• your need to love and be loved
• your fear of intercourse
• your fear of intimacy that may lead to intercourse
• your guilt about not being able to have intercourse
• your guilt about letting your partner down
• your fear of losing the relationship to someone else, and
• your fear that your unwillingness to have intercourse will be interpreted as a sign of rejection.

At the same time your partner needs to talk about such things as his/her need to love and be loved, frustrations at not being able to have intercourse with you, fear of hurting you, frustration at your emotional withdrawal during times of intimacy, and fear of being rejected.

Once you have discussed and resolved some of these issues, you will have the foundations for moving on and finding ways of resolving the problem.

Sex therapists may also be able to help you with this.

Experiment – and check out the time of the month…

With a little experimenting, you may be able to find ways or times when you can have intercourse. If appropriate, try experimenting with different positions.

Some women are able to enjoy intercourse if it is shallow, or if slow and gentle penetration is used. You may like to try experimenting with foreplay and artificial lubricants. Some women are able have pleasurable intercourse if there is plenty of foreplay to stimulate the natural lubricants in the vagina or if a lubricant such as KY Jelly is used.

Similarly, it may be appropriate to try experimenting with the timing of intercourse. Some women find that intercourse is pleasurable at certain times of the month, such as in the week after ovulating or in the two week period after having a period. If you can identify the times when intercourse is pain-free, make that time of the month a special time to enjoy intimacy together.

Keep talking…

If you experience pain during intercourse, it is important to tell your partner immediately, so he can stop. Trying to conceal the pain will usually result in you unconsciously withdrawing from him, which may be perceived as rejection. Even though it isn’t.

In the long term, it may lead to hesitation on your part regarding any intercourse, which will place unnecessary stress on the relationship. It is better to be open and honest at the time, so you and your partner can learn which situations create pain. That way you can learn which situations to avoid, so you can both have pleasurable and satisfying intimacy together.

Find alternatives

Even with the most patient and sensitive experimentation, some women will not be able to experience pain-free intercourse because of their endometriosis. If this is the case, you need to experiment to find other ways of sharing intimacy and lovemaking — after all, intercourse is not the only way of being intimate!

Lying in bed together, kissing, hugging, holding, stroking, massaging, and mutually masturbating can be as just pleasurable as intercourse if you want it to be.

See also

» Lone Hummelshoj’s talk on “Sex and endometriosis …perhaps not in the morning”
» Marta Meana’s talk on “Painful intercourse …taking sex seriously“

Keep up to date with progress in endometriosis: follow us on Twitter

Women in Government’s 2nd Annual Healthcare Summit kicked off this morning with an hour-long session on endometriosis and its impact on the estimated 176 million women across the world who are affected by the disease.

This is the first time endometriosis has been addressed at a legislative level in the United States!

The World Endometriosis Research Foundation‘s chief executive, Lone Hummelshoj, who was invited as a key note speaker, emphasised how endometriosis affects women’s general physical, social and mental wellbeing during their prime and most productive decades.

She stressed that endometriosis is not a “life style disease”and that it doesn’t discriminate between age, ethnic, or social circumstances.  Endometriosis affects an estimated 176 million women and girls worldwide during their prime and most productive decades — and there is no known cure or prevention.

Impact of endometriosis

Heather Guidone and Lone Hummelshoj in Washington DC at Women in Government's Annual Healthcare Summit

In her presentation Hummelshoj highlighted the key findings from WERF’s Global Study of Women’s Health (the first global prospective study to investigate the impact of endometriosis), and presented preliminary data from WERF’s EndoCost study which suggests that reduced productivity at work by women with painful endometriosis may account for twice that of direct health care costs — all because of the pain associated with the disease preventing these women to perform optimally.

“Getting the painful symptoms of endometriosis under control early is crucial, since the first global studies investigating the impact and cost of endometriosis, across ten countries on five continents, have found that women with endometriosis report a 38% greater loss of work productivity than those without endometriosis – mainly explained by a greater severity of pain symptoms among women with the disease.

What’s more, reduced effectiveness at work accounts for two-thirds of the annual costs associated with the disease (ie. twice that of the direct cost of treatments)”

said Hummelshoj, who also showed that it still takes >7 years before women, who present with symptoms suggestive of endometriosis, are diagnosed and treated – further compounding the overall effect of the disease.

What needs to be done at legislative level?

Together with co-presenter Heather Guidone, Director of Education for the Endometriosis Foundation of America, Hummelshoj called for action in three areas:

1. EDUCATION

Young women, and primary care providers, need to be educated about what is and isn’t normal when it comes to menstrual pain

If pain prevents a girl from going to school or a woman from being productive at work it is not normal and she needs treatment.

→ LEGISLATORS can work towards state/regional/national education campaigns

2. SPECIALIST CARE WITH APPROPRIATE REIMBURSEMENT

Treatment for endometriosis needs to be specialised and access to this treatment made available to everyone who needs it.

Insurance companies and payers have to acknowledge that surgery for endometriosis requires highly trained and specialised surgeons and that such specialised surgery must be reimbursed appropriately. If this does not occur then this treatment modality will gradually disappear all together, which will further compromise millions of women’s lives.

→ A DIALOGUE must be entered into with insurance companies and payers to change status quo. 

3. RESEARCH INTO DISEASE MECHANISMS  

Endometriosis, affecting one-in-ten women during their most productive years, should become a research priority in line with other life-altering, yet non-fatal, diseases.

Until we understand the pathogenesis and underlying mechanisms of this disease (that affects so many women in so many different ways) it will be impossible to develop more effective and safe treatments.

→ FUNDING ALLOCATED TO RESEARCH on pain mechanisms and infertility in women with endometriosis is urgently needed to prevent this devastating and debilitating disease in the next generation of women.

What can YOU do?

WRITE to your state legislators and provide them with facts about endometriosis and the policy needs listed above.  Urge them to act now so that we can work towards preventing endometriosis in the next generation of women.

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There was added emphasis on endometriosis at this year’s AAGL meeting attended by more than 1500 delegates from many countries. Key note lectures featured Padma Lakshmi and Linda Griffith – and Professor Leila Adamyan was honoured at the opening ceremony.

At its 40th Annual Meeting the AAGL had chosen endometriosis to feature in this year’s Jordan M Phillips Keynote Session.

Padma Lakshmi, who is well known in the USA and a co-founder of the Endometriosis Foundation of America, kicked off the session talking about endometriosis from a patient’s perspective – a woman, who struggled to get a diagnosis and consequently battled debilitating pain for a large part of her adult life.

I had my period 25% of each month, often having to take several days off to stay in bed because of the pain

said Lakshmi who, after surgical excision of her disease, is now the proud mother of a daughter.

Endometriosis is not a benign disease

Endometriosis is not a benign disease, according to Professor Linda Griffith who is the Director of the MIT Center for Gynepathology Research, a member of the National Academy of Engineering, a MacArthur Foundation “Genius” Grant Fellow – and, who teaches Physical Chemistry (molecular thermodynamics).

Professor Linda Griffith speaking at the 40th Annual Meeting of the AAGL

The word “benign” is used in the medical community in references to diseases that are not cancerous. From the patient/scientist perspective, however, Professor Griffith urged that any form of symptomatic endometriosis be referred to as “non-malignant” in order to capture the significant morbidity this disease exerts on the daily lives of patients.

The use of the term “non-malignant” also highlights that certain pathological processes are shared by endometriosis and various forms of cancer, and that the respective research communities might learn from each other!

The surgical community, in fact, has been extraordinarily receptive to building closer ties to the basic science and engineering communities, as shown at the AAGL by featuring a scientist as a key note speaker!

What does the MIT Center for Gynepathology Research do?

The MIT Center for Gynepathology Research (CGR), which is based in the School of Engineering with strong ties to the School of Science and Harvard Medical School, was founded in part to increase basic and translational research in endometriosis by biological engineers, biologists, chemists, and others at the forefront of research in other areas of biomedicine. At the time the CGR was founded, dozens of MIT faculty were actively involved in breast cancer research, but no one was investigating endometriosis.

Now, about a dozen MIT faculty in 5 different academic departments are actively engaged in basic and translational endometriosis research, with access to both patient tissues and clinical perspective from the CGR clinical co-director, Dr Keith Isaacson and his partner Dr Stephanie Morris, along with Harvard School of Public Health collaborator Dr Stacey Missmer.

Drawing from advances in cancer and other fields, MIT addresses the following questions:

1. Improving patient stratification – can we find better molecular markers that will allow prediction of whether patients will develop aggressive forms of endometriosis, and even cancer, to tailor therapies?
2. Molecular mechanisms of disease progression, to inform development of new drug targets, and
3. Aetiology of endometriosis.

Can we learn how to predict endometriosis the way early stage breast cancer can be predicted?

As an example of MIT’s efforts to develop better stratification, a new method for predicting which early stage breast cancer patients will likely have metastatic recurrence was described by Professor Griffiths. The approach, called the “tumour micro-environment of metastasis”, was pioneered by MIT biologist Frank Gertler and coworkers at Albert Einstein Medical School.

Professor Gertler discovered how a protein that helps control movement in normal cells, “Mena”, can be mutated to cause tumour cells to be highly invasive and move into the bloodstream. In examining histology of tumours, the tumours are scored for how many times the pathologist sees a combination of a tumour cell expressing this protein next to a blood vessel and next to a macrophage – a high score gives a 22-fold higher probability of metastasis.

It is known that endometrium expresses Mena and that Mena can be overexpressed in endometrial tumours, but whether it is associated with endometriosis is unknown. One facet of MIT research is to investigate possible association of mutant Mena with invasive forms of endometriosis, and this new frontier is being approached in a multi-investigator collaborative effort that includes scientists from several countries.

Watch this space for more news on these exciting research initiatives!

Professor Leila Adamyan is honoured by the AAGL

Professor Leila Adamyan, well-known in the field of endometriosis, was presented with an “Honorary Membership of the AAGL” at the opening ceremony of its 40th Annual Meeting.

AAGL Executive Vice President and Medical Director, Frank Loffer, presents Professor Leila Adamyan with her Honorary Membership of the AAGL

This very distinguished honour is bestowed on those AAGL members, who have been long time advocates of minimally invasive gynaecology, and who have proven to spread the use of minimally invasive surgery though teaching and mentoring.

Professor Adamyan, who has been an AAGL member since 1989, founded the Russian Society of Gynaecologic Endoscopists (RSGE) in 1991 which, through her leadership, has grown to encompass more than 2,000 members.  During these past twenty years she has mentored colleagues and organised major educational meetings attracting not only Russian surgeons but renowned surgeons from around the world – all there to learn from each other.

In bestowing Professor Adamyan with this Honorary Membership the AAGL acknowledges that she has been responsible for raising the level of care for women – not only in Russia, but in neighbouring countries and thus have exemplified the AAGL’s mission of advancing minimally invasive gynaecology worldwide.

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