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Endometriosis Has Major Effect on Lives of Women
By Todd Neale, Staff Writer, MedPage Today
Published: May 22, 2010
NEW YORK --
Uncertainty about its cause, a lack of effective prevention or cure, and delays in diagnosis and treatment all contribute to a major societal impact of endometriosis, according to research presented here.
It is estimated that about 176 million women ages 15 to 49 worldwide, and eight million in the U.S., have the painful condition, Lone Hummelshoj, secretary general of the World Endometriosis Society, reported at a half-day conference hosted by the Endometriosis Foundation of America.
Those numbers are likely underestimates, she said, because many women with the disease have not yet received a diagnosis.
Increased awareness about endometriosis among women and healthcare professionals may help lessen delays in diagnosis, which average about 11 years from symptom onset, she said.
"And then of course we need . . . funding for basic research to understand the natural history of the disease," Hummelshoj said in an interview, "so that one day, perhaps, we can prevent it so that the next generation of women don't have to suffer like this one has."
Little is known about how the disease develops and about how it reduces the fertility of women who have it.
There currently is no cure and no effective prevention for it.
Because of taboos surrounding menstruation, sexual problems, and pain, many women are embarrassed to talk about it, Hummelshoj said, a problem compounded by a lack of awareness about endometriosis among women and healthcare professionals.
Following several presentations on basic research, management challenges, and links to cancer, Hummelshoj previewed results of two unpublished studies exploring the impact of endometriosis.
"We have never really had very good data about the impact of the disease from a prospective point of view," she said.
"And here we have studies with a control group clearly showing us that the impact of endometriosis is higher than for those who don't have endometriosis."
The first study was a market research survey by Bayer Schering Pharma.
It included 21,746 women from eight countries -- the U.S., U.K., France, Germany, Italy, Canada, Brazil, and South Korea -- who completed online interviews. They ranged in age from 15 to 49 in all countries except the U.S., where the youngest women were 18.
The second study -- the Global Study of Women's Health (GSWH) -- was funded by the World Endometriosis Research Foundation, of which Hummelshoj is the CEO.
It recruited 1,405 women ages 18 to 45 presenting to 16 centers in 10 countries with symptoms suggestive of endometriosis.
All underwent laparoscopy; 660 received a diagnosis of endometriosis and 745, who served as the controls, did not.
Hummelshoj pulled data from both studies to illustrate how endometriosis affects women.
Even though 5% of women in the Bayer study said they had received either a clinical or surgical diagnosis of endometriosis, it is likely that the prevalence of the disease is closer to 10%, if some of the symptomatic women are included, Hummelshoj said.
According to the GSWH, 62% of the women diagnosed with endometriosis started having symptoms before they were 30, with an average age of onset of 23.
Delays in diagnosis are a major problem with the disease, however.
On average, according to Hummelshoj, it takes three years to first seek medical treatment after the onset of symptoms, and another eight years before diagnosis and treatment.
The average age at diagnosis was 34 in the GSWH and 28 in the Bayer study.
The average number of doctors seen before receiving a diagnosis was six.
"Think about what this is actually costing society and the waste of everybody's time," Hummelshoj said.
Adding to the cost of delayed diagnosis are the ineffective treatments used to ease the sometimes debilitating pain of the condition.
In the Bayer study, mean levels of pain ranged from 6 to 7 on a 10-point scale for cramping, pain during and after menstruation, chronic pelvic pain, painful intercourse, pain midcycle, pressure on the bladder, and pain when using the toilet.
Numerous medications, most lacking an indication for endometriosis, were used to try to alleviate the pain, but none worked for all women.
The most frequently used were
nonprescription painkillers (20%),
oral contraceptives (19%), and
prescription painkillers (14%).
The only treatment that appears to be effective at relieving endometriosis is surgery, but the results rely heavily on the skill of the surgeon, Hummelshoj said.
A previous survey conducted in 2004 and 2005 found that only 8% of women reported that their operations were very or moderately effective.
Another 22% said the operation was slightly effective, 24% said it was not effective, and 46% said their condition was worse after surgery.
Delays in diagnosis, substantial pain, and a lack of effective treatments adds up to a much lower quality of life for women with endometriosis, Hummelshoj said.
Women in the Bayer study reported the impact of the disease on their quality of life in the previous year.
Half said their sex life had been affected, 36% said their relationship and family life had been affected, and about a third said their performance and attendance at work or school had suffered.
In the GSWH, women with endometriosis reported poorer quality of life in aspects of mental role limitation, social functioning, mental health, vitality, and bodily pain.
Hummelshoj and her colleagues estimated that endometriosis is responsible for a loss of productivity of 10 hours per patient per week.
Although she did not have any numbers to support the comparison, Hummelshoj said she thought it would probably cost about the same to manage endometriosis as it is now -- through delayed diagnosis and hit-and-miss treatments -- as it would to manage it through early detection and good specialist treatment.
"Why don't we, then, invest in the second scenario and try and really work to improve the lives of these women?"
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http://tinyurl.com/2cyphno
it effected me as well.