Key Note 35

Key News – Endometriosis SHE Trust (UK)
Registered Charity No: 1076843
Autumn 2012
Issue 35

Dear All,

We wish you all a Happy and Healthy 2012-13 from all the Trustees at Endometriosis SHE Trust (UK).

2011 had been a difficult year for us as we had several Trustees indisposed and two resigned due to work and family commitments. This left just four Trustees to run the Charity. We had to cut down our workload and redesign our programme for 2011-12. Please watch the web site for information as to time and place.

We will send an e-blast so please make sure that we have your text mobile number or email details by phoning the office number 08707 743665 and leaving your details. Or Email Or by post to our address:

Endometriosis SHE Trust (UK)
Silveroaks Farm
East Sussex
TN21 0RS

Sadly Jayne Tullett had to leave us in Spring 2011 due to build up of her workload, which made acting as Chair terribly difficult with all her many commitments. We have to give her a big thank you for the sterling work she did to help the charity progress. I have taken over for the next year at least, until we can begin to follow our strategic plan from a point of strength.

From September 2011 we began to rebuild and have several new Trustees on board so that we can reshape and renew our Aims and Objectives and fulfill our Mission to you all. By Autumn 2012 we will have our new format ready to reveal. Our new Trustees include a GP, a nurse, a media specialist and a researcher from Oxford university, as well as our Accountant and myself. We are always looking for new Trustees so if you feel able to give 4 Saturdays per year to help us and have skills we need please contact us.

All our Information leaflets are still available to you, plus new GP information is shortly becoming available to you. We are putting many of our leaflets on-line for members to download in the New Year. The web site is under reconstruction and will soon be revealed. Those who still require hard copies of everything please let me know by emailing or by phoning us..

Please send us new ideas for what information you would like to hear in the next Key News in Spring 2013. Please send us your story; it may help other women struggling out there cope with their illness.

Endometriosis affects more than 170 million women worldwide, 2 Million in the UK alone. 10% of women of reproductive age. 30% and 60% in women with infertility and pelvic pain respectively. (Simoens et al. 2007). Together we can make a difference to how their endometriosis affects their lives. Alone we are a ship adrift in a stormy sea, please join in  and help us to help others who feel alone to feel supported.

Kind regards,

Membership Renewals
Please remember that your membership needs to be renewed in November 2012.

We put a hold on membership fees for all of 2011 due to our inability to keep up to date.

We apologise for this but with just two to four of us able to work for half of last year we had no choice but to be becalmed for 9 months.

Endometriosis SHE Trust (UK)
You can pay us direct by Internet Banking

Sort Code: 72-06-00
Account Number 491593287

Or send a Cheque to:
Endometriosis SHE Trust (UK)
Silveroaks Farm
East Sussex
TN21 0RS

Types of Membership are for 3 Key News letter each year, web site access for Members and reductions for Workshops and on-line lectures, and we will send you the Labyrinth Endometriosis Booklet plus the leaflet on Support for Pain Relief free of charge:

  • · 1 year £18.00
  • · 1 year overseas £24
  • · 1 year unwaged £10
  • · 1 year Clinical membership £30

Your support helps us to reach out to other women like yourselves and try to make a difference to their lives.

Please help us to continue our work to reach all ages of women, especially the teenagers who are so frightened by their pain and receiving very little help and understanding.

Becoming a Charity Trustee
If you want to help us to move the Charities work onwards and upwards please contact Dian Shepperson Mills  at

We need your skills! If you are good at speaking to the public, have any experience in fundraising, or advertising/marketing or PR we do need your help.

And so do other women out there who are struggling to cope. I remember well my first phone call to someone called Heather in Norfolk. I cried for an hour after the call with sheer relief that someone out there knew what the pain was that I was talking about. My GP thought it was just tummy cramps, there was no understanding of the grappling hook tearing pains.

We need you to help us to help others. The more support we have the more we can do together.

Later in Summer I will be doing a Sponsored Walk on the South Downs, I would love you to support me in fundraising.

Fertility Show, Olympia 4-5th November 2011
Add Pictures
We gave out over 2000 leaflets at the two day event. Over 4,500 people attended the meeting and gave a talk on nutrition and fertility for women with endometriosis. We made links with several different IVF clinic gyneacologists and new members.  At present 1:6 couples are sub-fertile, but the professors of environment and toxicants feel that this will rise over the next 5 years to 1:3 couples due to the presence of oestrogenic pesticides and chemicals in our foods and in the air and water. We need to protect ourselves wherever possible by trying to use more organic fruits and vegetables. We need to try to eat more traditional nutrient-dense meals like our grandparents, as they were quite fertile in their day.

Endometriosis Meetings
Dian Shepperson Mills attended these meetings as part of her work and training, at no cost to the Charity.

Endometriosis Symposium, Atlanta March 2011
This meeting was looking at the introduction of robotic surgery on endometriosis patient’s and many pieces of research were presented..

World Endometriosis Society (WES) meeting, Montpellier, France September 2011
Consensus days were held on research and on gynaecological treatments of women with endometriosis. The three day meeting reported on research into endometriosis.

Many of the world groups for endometriosis attended this meeting, from the Netherlands, Sweden, Norway, France, Spain, America, Italian, Spanish, New Zealand. It was good to catch up with each other’s work and to agree an approach to Endometriosis Awareness Week in March 2012.

American Society for Reproductive Medicine (ASRM) meeting in Orlando, Florida October 2011

Dian is the Chair of the Nutrition Special Interest Group for the ASRM and Chaired
the Post Graduate course on ‘Improving Fertility through Nutritional Medicine – Preconceptional Care’. The Endometriosis Special Interest Group held a Post Graduate day on ‘Endometriosis: The Link Between Pathophysiology and Treatment’.

Research Data
Maternal, hair mercury levels and early in vitro fertilization (IVF) outcomes.
D. L. Wright et al.; Harvard School of Public Health. Department of Obstetrics and Gynecology, Brigham and Womenís Hospital, Boston, MA.

Increasing attention has been focused on human exposure to mercury (Hg) with the primary source through ingestion of seafood. Higher hair mercury concentrations were associated with reduced odds of implantation failure.

Endometriosis in women with polycystic ovary syndrome (PCOS) and it’s role in poor reproductive outcomes.
K. L. Holoch et al. Department of Public Health Sciences, Clemson University, Clemson, SC.

Polycystic ovary syndrome (PCOS) has long been known to be associated with poor reproductive outcomes, beyond simply ovulatory dysfunction. Determine the prevalence of endometriosis in women with PCOS and infertility. A significant proportion of infertile women with PCOS may have unrecognized endometriosis, due to heavy menstruation and anovulatory bleeding. Laparoscopy significantly improves pregnancy outcomes in women with PCOS and endometriosis in monitored cycles.

Dietary supplementation with fish oil inhibits endometriosis-associated, postsurgical adhesive disease and secondary uterine inflammation in a mouse model.
K. L. Bruner-Tran, et al.; Womenís Reproductive Health Research Center, Vanderbilt University Medical Center, Nashville, TN.

Adhesive disease is a significant surgical complication and a common co-morbidity among endometriosis among endometriosis patients. Peritoneal inflammation associated with endometriosis-related adhesions is thought to negatively affect uterine function via poorly understood mechanisms. A fish oil diet effectively reduced not only experimental endometriosis-related post-surgical adhesion development, but also inhibit inflammation within the uterus.

Omega-3 fatty acids and ovulatory function.
S. L. Mumford, et al.; National Institute of Child Health and Human Development, Rockville, MD; Department of Social and Preventive Medicine, University at Buffalo, Buffalo, NY.

Emerging evidence suggests potential links between omega-3 fatty acids and improving fertility, hypothesized to impact reproduction via prostaglandin synthesis and steroidogenesis. These results highlight the importance of type of fat intake on reproductive hormones and anovulation among women of reproductive age. Future studies are needed to confirm these findings as simple dietary changes may have important implications to improve fertility outcomes.

Impact of vitamin D deficiency on IVF outcome: an observational study.
S. Dubourdieu, et al. Medecine at Biologie de la Reproduction, CHU de Nantes, Nantes, France.

The role of Vitamin D as a cofactor of female infertility has has not been extensively investigated, and studies yielded contradictory results. The prevalence of Vitamin D deficiency is higher in this population of infertilile women than in the general population in Europe (40% of European people do not have replete vitamin D status). Therefore, systematic supplementation of infertile women undergoing IVF should be considered.

“A prospective study of dietary fat consumption and endometriosis risk”.

Missmer SA, Chavarro JE, Malspeis S, Bertone-Johnson ER, Hornstein MD, Spiegelman D, Barbieri RL, Willet WC, Hankinson SE.. Hum Reprod 2010 Epub 24 MARCH 2010

New research suggests that women whose diets are rich in foods containing Omega-3 oils might be less likely to develop endometriosis, whilst those whose diets are heavily laden with trans fats might be more like to develop the disease. This study finds trans fats are linked to an increased risk of endometriosis and that Omega-3 rich foods are linked to a lower risk. The study – which is the largest to have investigated the link between diet and endometriosis risk and the first prospective study to identify a modifiable risk factor for the condition – found that while the total amount of fat in the diet did not matter, the type of fat did [1]. Dr Stacey Missmer, states that “women with the highest consumption of omega-3 fatty acids had 0.78 times the risk of endometriosis diagnosis compared to those who had the lowest consumption”.  Women with the highest consumption of trans fats had 1.44 times the risk of endometriosis diagnosis compared to those who had the lowest consumption.  This provides more evidence that a healthy diet is not necessarily low in fat overall but rather is low in unhealthy fats and higher in healthy fats”.  This study included nearly 120,000 US nurses who were aged 25-42 and who had not been diagnosed (neither clinically nor surgically) with endometriosis at the start of the study.  Detailed information about their diets was collected over 12 years and identified those who were and were not diagnosed with endometriosis.  Based upon animal studies and the investigators’ understanding of the influence that fatty acids have on prostaglandin production and inflammatory responses, it was suggested that healthy fats known as Omega-3 fatty acids (the fats in fatty fish such as salmon and mackerel and in olive oil) would be more prevalent in the diets of women who remained free of endometriosis.

Conversely, it was suggested that the women with diets highest in the most unhealthy form of fat — trans fats (which are hydrogenated oils found in many fried and processed foods) — would have a greater risk of being diagnosed with endometriosis.  This was observed in the results.  The authors state that this is the first large, prospective study of the relation between the different types of fat in the diet and that these associations need to be replicated in additional populations.   “Hopefully this is evidence that large scale study of risk factors for endometriosis is possible and critical to understanding this enigmatic disease.  Studies have helped to identify lifestyle factors that are now well substantiated so that there are recommendations from doctors to patients to prevent cardiovascular disease and several types of cancer.  It is reasonable to believe that such facts are waiting to be identified for reproductive health as well” the researchers said, “a next step could be to investigate whether dietary intervention that reduces trans fats and increases Omega-3 oils can alleviate symptoms in women who already have endometriosis”.The study has been funded by the US National Institutes of Health.

Symptoms in teen years may foretell severe endometriosis Amy Norton. NEW YORK | Fri Nov 19, 2010 10:31pm GMT

NEW YORK (Reuters Health) – In some teenage girls, very painful menstrual periods that interfere with daily life may signal an increased risk of developing the most extensive form of endometriosis, a preliminary study suggests. In a study of 229 women undergoing surgery for endometriosis, French researchers found that those with the most extensive form — known as Deep Infiltrating Endometriosis (DIE) — were more likely to have had particularly painful periods as teenagers. As a group, they were four times as likely as women with non-DIE endometriosis to have used birth control pills to treat severe menstrual pain before the age of 18. And they were 70 percent more likely to say they’d missed school days because of menstrual symptoms. The findings, published in the journal Fertility and Sterility, suggest that such problems in adolescence can sometimes predict a later diagnosis of DIE.

In endometriosis, pieces of the tissue that lines the uterus (the endometrium) also grow outside the organ — often on the ovaries, the fallopian tubes or elsewhere in the pelvis. Like the endometrium, this misplaced tissue changes with each menstrual cycle, thickening and then breaking down and bleeding. This leads to a buildup of adhesions, or scar tissue, outside the uterus, with symptoms including pelvic pain and heavy, painful menstrual periods. Some women also have difficulty becoming pregnant. There are three forms of endometriosis: superficial endometriosis, ovarian endometriomas and DIE, with the latter being the most extensive. Women with DIE usually have adhesions in multiple areas of the pelvis, including the vagina, bladder, bowel and the ligaments attaching the uterus to the pelvis.

Endometriosis can be tricky to diagnose, and many girls and women go years before a diagnosis. The condition may, for instance, be mistaken for other causes of pelvic pain, like ovarian cysts, pelvic inflammatory disease or, depending on the symptoms, irritable bowel syndrome. In addition, while a pelvic exam or ultrasound test are often used to help diagnose endometriosis, the only way to definitively diagnose it is through minimally invasive laparoscopic surgery to take a tissue sample. Compared with the other forms of endometriosis, DIE appears to have a longer delay to diagnosis. In a new study, Dr. Charles Chapron and colleagues at Universite Paris Descartes tried to find out whether women undergoing surgery for endometriosis had any early symptom history that was associated with a greater likelihood of having DIE. This study included 229 women who had surgery at a single medical center between 2004 and 2009; 43 percent had DIE, while the rest had the less-extensive forms of endometriosis. All of the women were interviewed about their symptom history; their average age at the time of surgery was 32. Overall, 58 percent of women with DIE had ever been prescribed birth control pills to treat severe menstrual pain, versus 26 percent of women with non-DIE forms. Similarly, 21 percent of women with DIE had their first prescription before the age of 18, compared with 6 percent of those in the non-DIE group. When it came to missed school days, 38 percent of DIE patients said they’d had absences due to menstrual symptoms, versus one-quarter of women in the non-DIE group. Women with DIE were also more likely to report a family history of endometriosis; 13 percent did, compared with just under 5 percent of women with non-DIE endometriosis.

The study has a number of limitations, including the fact that it surveyed women at one time point and asked them to recall symptoms from adolescence. A study that followed young women over time to see whether symptoms predicted a later diagnosis of DIE would be more informative. A new long-term study will look at  whether diagnosing endometriosis earlier will eventually lead to fewer cases of DIE and less need for surgery.”Today, there is no effective way to prevent the progression of endometriosis to its most severe stage, DIE,” Chapron said.

The current results suggest that treating severe menstrual pain with birth control pills does not prevent progression to DIE, as a history of such treatment was linked to the condition. Chapron also pointed out, however, that this does not mean that birth control pills contributed to the development of DIE either. Still, even though it is not clear whether progression to DIE can be prevented, an earlier diagnosis of endometriosis would at least allow girls and women to know the cause of their symptoms. According to Chapron and his colleagues, girls and women with severe menstrual pain that does not respond to pain relievers like ibuprofen should see their doctors, and, if appropriate, be evaluated for endometriosis. Besides painkillers and birth control pills, non-surgical treatments for endometriosis include several types of hormonal medications that inhibit the growth of the endometrial tissue. Fertility and Sterility, online November 11, 2010.

Oxidized Lipoproteins are the Alleged Pain Molecules in the Peritoneal Fluid of Women with Endometriosis. P-178  ASRM Denver 2010

N. Santanam, J, Fahrmann, C. Cook, H. King, R. Egleton, B. L. Dawley, Joan C Edwards School of Medicine, Marshall University, Huntington, WV.

Endometriosis, a disease with unknown causes affects women of child-bearing age. It is characterized by the growth of endometrial tissue outside the uterus and is associated with chronic pelvic pain and infertility. The peritoneal fluid of women with endometriosis is a rich source for growth promoting and inflammatory factors. The peritoneal fluid also has a measurable levels of pain-inducing prostaglandins series 2 (PGE2) and the endometriotic tissue is full of nerve endings. Non-steroidal anti-inflammatory drugs, though routinely used in the treatment of endometriosis, are insufficient to relieve pain suggesting the presence of non-cycloxygenase generated pain molecules. Earlier studies indicated the importance of oxidative stress (free radicals present in fluid surrounding the implants), in the trigger factors for endometriosis and showed that antioxidant supplementation (selenium Vitamin A, C, E) in women with endometriosis decreased both inflammatory markers in the peritoneal fluid and their pain scores. They also found increased presence of modified lipoproteins in the peritoneal fluid of these women. The objective of this study was to investigate the role of oxidative stress in the pain associated with endometriosis. This study for the first time identifies oxidized lipoproteins as an additional source of pain in women with endometriosis which can be treated with an antioxidant supplementation. Supported by: Department funds.

Editorial point: Red meat and dairy foods increased PGE2 inflammation levels, whereas fish oils (salmon , mackerel, herrings, halibut), nut and seed oils and cold pressed extra virgin olive oil help to reduced inflammation within the body.

Resveratrol Reduces Human Endometrial Stromal Cell Invasiveness.

P-366 ASRM Denver 2010

A. Sokalska, A. Cress, K. L. Brunner-Tran, K. G. Osteen, A. J. Duleba, Ob/Gyn, University of California Davis, Sacramento, CA; Ob/Gyn, University of Medical Sciences, Poznan, Wlkp, Poland; Ob/Gyn, Vanderbilt University School of Medicine, Nashville, TN.

The formation of endometriotic implants involves invasion by endometrial cells. Invasion may be enhanced by excessive expression of matrix metalloproteinases (MMPs) leading to local destruction of the extracellular matrix and hence establishment of the disease. Recently we have reported that resveratrol (3,5,4′-trans-trihydroxystilbene), a natural polyphenol synthesized by plants, decreases MMP3 and MMP9 gene expression in primary human endometrial stromal cells and reduces the number and the size of human endometriotic implants in a nude mouse model. The present study was undertaken to investigate the effect of resveratrol on invasiveness of human endometrial stromal.

Resveratrol reduced HES cell invasiveness by 40%. The present findings indicate that resveratrol may inhibit the development of endometriosis by mechanisms involving reduction of invasiveness of HES.

Supported by: Eunice Kennedy Shriver NICHD Grant U54 HD052668.

Editorial point: Resveratrol is a member of the stilbene group, present in many plants including red/black muscadine grapes, berries, leaves, and canes of grapevines and red wines.

Pre-Treatment Serum Fatty Acid Levels and In Vitro Fertilisation (IVF) Treatment Outcome. O-311 ASRM Denver 2010

J. E. Chavarro, A. F. Vitonis, H. Campos, D. W. Cramer, M. D. Hornstein, S. A. Missmer. Channing Laboratory, Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA; Department of Obstetrics, Gynecology and Reproductive Biology, Brigham and Women’s Hospital, Harvard Medical School of Public Health, Boston, MA.

To evaluate the association between serum levels of fatty acids, as biomarkers of fatty acid intake and metabolism, and treatment outcome among women undergoing IVF. A case-controlled study, among women undergoing IVF treatment in three fertility centers in the Boston area. Pre-treatment levels of serum fatty acids were measured in 100 women as the percentage of total fatty acids.  There was an inverse relation between pre-treatment serum levels of trans fatty acids and live birth rate. The association was strongest for serum levels of 18:2 trans fats. Compared to women in the lowest third of serum 18:2 trans fats, women in the middle third had 90% and women in the highest third had 82% lower odds of live birth per initiated cycle. The lower birth rate appeared to be due in part to a greater frequency of implantation failure. Pre-treatment serum levels of 18:2 trans fatty acids, a biomarker of intake, are associated with a greater implantation failure rate and lower live birth rate among women undergoing IVF. Supported by: NIH grant HD32153 and department funds to JEC.

Editorial point: Try to avoid an excess of hydrogenated trans fats in processed foods, eat more oils such as cold pressed extra-virgin olive oil, nut and seed oils and fish oils.

Research Articles
Triclosan, Another source of dioxin
Research data is showing that the presence of dioxin in women with endometriosis may be a causal factor in development of the disease as it weakens the immune system, as well as being a caner-causing agent.

The common sources of dioxins are fatty foods, which build up their dioxin load from exposure to pesticides and fungicides and herbicides sprayed into growing crops. They also come through the air via incineration of plastics so that if you or the foods you eat are near incinerators or crematorium the local food may be contaminated.

Now it is reported that asource of dioxin is Triclosan, originally used only in hospital settings. Now it is in the anti-bacterial soaps and other products that contain Triclosan. Both Triclosan and Triclocarban in these products metabolise in the body to form dioxin.

The advice from the American Endometriosis Association who reported this finding is:

1. to use plain soap and water to wash your hands thoroughly to kill germs
2.  Avoid personal care products which contain Triclosan and Triclocarban on the ingredient label.
3. Avoid anti-bacterial products. They also lead to antibacterial resistance so that when you become ill the antibiotics no longer work effectively on infections.
5. – which looks at their use in cosmetics


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