Genetic Link to Endometriosis – Unique Icelandic Study Provides Further Proof

An article that was released in Febrtuary of 2002, stated that “A woman has more than five times the normal risk of developing endometriosis if her sister has the disease, according to research published today (Thursday 28 February) in Europe’s leading reproductive medicine journal, Human Reproduction*.”

The full article can be found at SciTecLibrary. (original article no longer available) – an alternative overview is here:

I apologise for the delay in posting this article. I did have it saved in my file folder but things were very hectic at that time due to projects and midterms.


House of Representatives Overwhelmingly Supports H. Con. Res. 291 in Session of 107th Congress.

DELRAY BEACH, FL. / October 3, 2002 — The Endometriosis Research Center (ERC) is delighted to announce that House Concurrent Resolution 291 was unanimously passed in the House of Representatives on October 1, 2002.
Introduced by Congressman Buck McKeon (R-25th District) and supported by numerous Co-sponsors, H. Con. Res. 291 officially recognizes the need for
Endometriosis awareness and education, and expresses the sense of Congress that it “strongly supports efforts to raise public awareness of
Endometriosis throughout the medical and lay communities and recognizes the need for better support of patients with Endometriosis, the need for
physicians to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure.”
The ERC, which began working on H. Con. Res. 291 last summer, has been instrumental in other Endometriosis-related legislation as well. Earlier
this year, the ERC celebrated the enactment of Assembly Concurrent Resolution 160, which was unanimously passed by the California State Senate
in March. Introduced by Assemblyman George Runner (R-36th District) and Assemblywoman Patricia Bates (R-73rd District) and supported by 70
Co-Sponsors, ACR 160 officially proclaimed the month of March as “Endometriosis Awareness Month” in conjunction with the ERC’s anniversary.
The ERC also previously testified before the California State Legislature at the invitation of Assemblyman Dennis Cardoza (D-26th District) on behalf of AB 2820, a consequential bill calling for independent research into the presence of Dioxin, which has been linked to Endometriosis, in feminine
hygiene products and the subsequent risks this toxin poses to women and their children. AB 2820 was approved by majority vote and passed on to the Senate Committee on Health & Human Services.
“We are extremely gratified that the 107th Congress has recognized the significant need for awareness and understanding of this painful disease,” said Michelle E. Marvel, Founder and Executive Director of the ERC. “Those who live with Endometriosis know all too well the negative impact the disease can have on their lives,” she said. “However, outside of the Endometriosis community, awareness is severely lacking. We have found that the disease continues to remain misdiagnosed, misunderstood, and ineffectively treated, despite being one of the most prevalent causes of chronic pain in today’s society. Only though awareness can we increase education about Endometriosis.”
Often referred to as “painful periods,” Endometriosis is more than just killer cramps. With Endometriosis, tissue like the endometrium (tissue
lining the uterus which builds up and sheds each month during menstruation) is found outside the uterus, in other areas of the body. These implants
respond to hormonal commands each month and break down and bleed; however, unlike normal endometrium, these implants have no way of leaving the body. The result is internal bleeding, inflammation of surrounding areas, expression of irritating enzymes, and formation of scar tissue. In
addition, depending on the location of growths, interference with the bowel, bladder, intestines and other areas of the pelvic cavity can occur.
Endometriosis has also been found lodged in the skin and at extrapelvic locations such as the arm, leg and even brain.
Symptoms include pelvic pain with or without menstruation, infertility, miscarriage, ectopic pregnancy, pain during or after intercourse,
gastrointestinal difficulties, fatigue, chronic pain, allergies and other immune system-related dysfunction. Studies have also shown an elevated risk of certain cancers and autoimmune disorders in women with Endometriosis. Though there are several theories, researchers remain unsure as to the specific cause of Endometriosis, and there is currently no definitive cure. The current method of diagnosis is an invasive surgical procedure; however, research is underway concerning non-invasive diagnostics.
The pain from Endometriosis can be so debilitating as to render a woman or teen with the illness unable to carry out her normal routine. Businesses
lose millions of dollars each year in lost productivity and work time because of Endometriosis pain. In addition, the cost of surgery required to
diagnose the disease in each patient alone adds greatly to the financial burden of both consumers and companies. “Yet, many people have never even heard of Endometriosis,” said Mary Prenger, Leader of the ERC’s Legislative Awareness Committee. “In fact, in approaching various Representatives to garner support for both ACR 160 and H. Con. Res. 291, we learned that many
of them were unfamiliar with the disease until the ERC brought it to their attention.”
The ERC is a 501(c)3 non-profit organization that was founded by Executive Director Michelle E. Marvel in early 1997 to address the growing needs of the international Endometriosis community. The ERC helps to improve the quality of life for those with the disease through their International
support and education programs, which include nearly 45 in-person support groups throughout the United States, Canada and the Caribbean, and the
Internet’s largest electronic Endometriosis support group; providing practitioners, patients and all those interested in the disease with extensive educational materials; raising awareness about Endometriosis; working with legislators to facilitate proper funding for Endometriosis research; conducting product focus studies; facilitating patient recruitment and participation in clinical trials and research studies; assisting medical
industry leaders with developmental research and data collection on Endometriosis; much more. The ERC is currently implementing their latest program for Professionals, EndoMED(tm), which is designed to encourage global collaboration and advance the study and treatment of Endometriosis. Unlike similar women’s health organizations, the organization is unique in that it is not fee-based. There is never a cost to participate in the ERC programs. The organization exists solely on the donations and contributions of concerned individuals and organizations that share the ERC’s vision of
helping women and teens with Endometriosis–and of someday finding a cure for the disease.
“With the sponsorship of policymakers like Congressman McKeon and our other supporters, we can ensure that Endometriosis is no longer treated as an insignificant issue,” said Marvel. “Patients, physicians and society at
large need to understand that Endometriosis is a disease which affects all of us.”
The Endometriosis Research Center a 501(c)3 Tax Exempt, Tax Deductible Organization
World Headquarters:
630 Ibis Drive | Delray Beach, FL 33444 USA
Toll free: 800/239-7280
Direct: 561/274-7442 Fax: 561/274-9117
Email: |

2 News Articles

Study Links Endometriosis With Other Diseases
Research Confirms 10-Year Delay Between Onset Of Pain, Diagnosis

POSTED: 10:31 a.m. EDT September 27, 2002

LONDON — Women with endometriosis are much more likely to also have other medical conditions, according to a new study.

The findings document something that many women with the painful condition already know.

The study was conducted by researchers from the National Institute of Child Health and Human Development in Bethesda, Md., the School of Public Health and Health Services at George Washington University in Washington, D.C., and the Endometriosis Association in Milwaukee. Their findings are published in Friday’s issue of the journal Human Reproduction.

Researchers found that endometriosis was linked to other conditions, including rheumatoid arthritis, lupus, chronic fatigue syndrome, fibromyalgia and allergies.

They found that 20 percent of the 3,680 endometriosis sufferers they studied had more than one other disease.

The study also confirmed that there is typically a 10-year delay between the onset of symptoms of endometriosis and the diagnosis of the disease. The researchers urge doctors to consider a diagnosis of endometriosis in girls and women complaining of pelvic pain and to watch out for other potentially serious conditions in these patients.

Endometriosis is a leading cause of infertility. It occurs when tissue from the uterine lining grows elsewhere in the body, attaching itself to organs and frequently causing pain, inflammation, bleeding and reproductive problems. It affects an estimated 8 to 10 percent of women of reproductive age. Its cause, and the causes of the other conditions, are not known.

Copyright 2002 by The Associated Press contributed to this report. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Menstrual Problem Going Unnoticed In Teens
Left Untreated, Endometriosis Can Cause Infertility

UPDATED: 11:53 a.m. EDT September 10, 2002

Endometriosis is a mysterious disease causing pain and infertility in thousands of women.

Doctors are learning more about the disease and now they’re paying closer attention to teens.

When she was 13, Katie Barton began having severe pain with some of her periods — pain that wouldn’t go away with over-the-counter medication.

“I would be doubled over and not be able to function. I would either have to leave school or take the day off,” she said.

Doctors thought Barton had digestive problems but couldn’t explain what was wrong.

But years later, she did get some answers. She has endometriosis, where menstrual tissue develops outside the uterus, often in the abdominal cavity. It’s what caused her pain since she was a teen.

Barton’s not alone. According to Dr. Fermin Barrueto, a gynecologist at Mercy Medical Center in Baltimore, teens with unexplained menstrual pain were often ignored, but a recent study discovered teens are especially vulnerable to the disease.

“They found out that in patients below age 22, the recurrence rate was twice as much as patients over 22,” he said.

Early diagnosis is important. Barton needed surgery to remove her endometriosis and Lupron, a medication to keep it under control.

“Finally I know what’s wrong with me and what can be done,” she said.

Endometriosis affects an estimated 10 million American women, and since it often results in infertility, early detection is important, according to research.

Copyright 2002 by All rights reserved. This material may not be

First Article –

Second Article –

Thanks to AthinaMarie for this information – her website can be found in the websites section of this site!.

“Fears Over Contraceptive Supply”

This article found on the BBC News site discusses the fact that there is a shortage of Depo-Provera.

“Supplies of a contraceptive that is used by thousands of women across Britain are running out.
Production problems have hit stocks of Depo-Provera, according to manufacturers Pharmacia.”

Conclusions that may be drawn from the Endosupp 2002 Questionnaire results

The majority of women who suffer from Endometriosis and are diagnosed with it or seek online information or support for Endometriosis are between 20 years old and 39 years old.
It should be noted that this age-range is affected by the age of

the majority of Internet users – studies show that men and women above the age of 35 tend not to utilise the Internet as extensively as those ages before 35 (this figure is improving all the time).

The majority of respondents were from the UK, this is due to many factors, the questionnaire was publicised both in the UK and in the USA on official message boards and mailing lists, however the UK community tend to have a more focused approach with many sites available for messaging, live chats etc. This led to a faster and more widespread response from the UK than from any other country. We are seeking ways of publicising the next questionnaire further.

The majority of women have been diagnosed for 1 to 5 years, this may be because women who have been diagnosed for less than a year are still learning about Endometriosis and have not yet found online resources to help them and so they haven’t learnt about the questionnaire. The drop in numbers for people diagnosed above 6 years may be because these people fall into the over 35 range and may not use the internet.

On the subject of other medical condition people suffer from several conditions stand out as having a good possibility of being closely linked to Endometriosis. Ovarian Cysts formed a massive 39 percent of other conditions that exists with Endometriosis; this may indicate that any woman who has been diagnosed with Ovarian Cysts may have Endometriosis, especially if the woman suffers from one or more of the other frequent conditions. Migraines feature highly, this is probably due to the pain and stress induced in many women by Endometriosis and probably cannot be taken as a condition linked to Endometriosis as in today’s lifestyle so many aspects can trigger off migraines. On the other hand IBS and Depression do seem to be symptoms that many women suffer from with Endometriosis. Many Endometriosis sufferers were initially diagnosed with IBS, this would indicate that Ovarian Cysts, combined with IBS – both of which can lead to depression being diagnosed – are strong indications that Endometriosis may be involved.

The symptoms that women have with Endometriosis was by far the largest ranged, but some results stand out. These symptoms could(or should) be taken as indications that a women may have Endometriosis and that potentially more diagnosis should be undertaken to ascertain if this is the case.

Fatigue is the biggest symptom; unfortunately it can be brought on my many aspects of modern life and on its own cannot be taken as a good indication. However what is apparent is that the community could benefit in help in dealing with fatigue.
Back Pain is present in a surprising number of women with endometriosis, this is another area that more information needs to be made available to Endometriosis sufferers in order to help people cope with it.
Headaches are present in many women, this is probably due to the indirect effects of Endometriosis. Fatigue and Back Pain coupled with Depression are most likely major contributors to this.
Many women suffer from bloating, from the results of the questionnaire this appears to be a good indication of Endometriosis with over 75 percent of responders suffering from it. Along side this Pelvic Pain and Painful Bowel movements along with constipation appear to be linked to Endometriosis.
A strong link is apparent between painful sex and Endometriosis, the figures may be higher than reported due to the personal nature of the question.

For more information look at the results page on
If you want more detailed information about the results you can send an email to asking for the information you requires, if you can tell us why you want the information we will respond as soon as we can.
N.B. All information divulged would be without any information that could identify the respondents in any way.

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