Endometriosis ~ Abdominal Pain ~ Endo ~ Scar Tissue ~ Adhesions ~ Infertility ~ Hysterectomy
Showing posts with label DIE. Show all posts
Showing posts with label DIE. Show all posts

Tuesday, October 08, 2013

WHAT IF ENDOMETRIOSIS WAS A MEN’S HEALTH ISSUE?

The world would be a different place!


As a health journalist and a co-founder of Endo Warriors, a support organization for women with endometriosis, I often get asked “what is endometriosis?”
Which is funny since it is estimated that 176 million women worldwide have endometriosis and yet no one knows about this global health issue.

http://www.hormonesmatter.com/endometriosis-mens-health-issue/

Visit Endo Warriors - https://www.facebook.com/endowarriorssupport

Sunday, February 12, 2012

Gene variant linked to endometriosis

YALE (US) — Researchers may have identified a genetic basis of endometriosis, a condition that causes millions of women chronic pelvic pain and infertility.

The Yale University researchers’ discovery of a new gene mutation provides hope for new screening methods.


Published in the journal EMBO Molecular Medicine, the study explored an inherited mutation located in part of the KRAS gene, which leads to abnormal endometrial growth and endometrial risk.

Click here to read entire article: http://www.futurity.org/health-medicine/gene-variant-linked-to-endometriosis/

Tuesday, January 10, 2012

New Risks for Women with Endometriosis

New Risks for Women with Endometriosis
By Heidi Anne Duerr, MPH | January 3, 2012

Endometriosis affects as many as 6% of the general population. While some women with endometriosis remain asymptomatic, many women experience dysmenorrhea, dyspareunia, non-cyclical pelvic pain, and subfertility. Now, new research indicates that patients with endometriosis are also more likely to develop inflammatory bowel disease.
Read the rest here: http://hcp.obgyn.net/endometriosis/content/article/1760982/2012566

Monday, January 02, 2012

Endometriosis Linked to IBD

Endometriosis puts women at risk for Crohns Ulcerative Colitis
By: Lindsay Patterson

Reviewed By: Joseph V. Madia, MD

(dailyRx)Endometriosis is a common reproductive disorder that affects women during their childbearing years. It is often connected with infertility, and now, it's also been linked to inflammatory bowel disease.

New research has found that women with endometriosis are at least twice as likely to develop inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis.

Click here to read the rest: http://www.dailyrx.com/news-article/endometriosis-puts-women-risk-crohns-ulcerative-colitis-16651.html

Wednesday, December 14, 2011

Simple remedies for menstrual cramps

Simple remedies for menstrual cramps
GYNOISSUES

By DONNA HUSSEY-WHYTE All Woman writer husseyd@jamaicaobserver.com

Monday, December 12, 2011

SOME women endure cramps so bad each month, that they are forced to stop regular activities for a day or two.

Severe cramping can be caused by a number of things, like disease in the reproductive organs; endometriosis; pelvic inflammatory disease; narrowing of the cervix; or fibroids or growths on the inner wall of the uterus.

But whatever the cause, the recommended remedies are the same.

Gynaecologist and obstetrician at the University Hospital of the West Indies, Professor Horace Fletcher, said young women don't need to suffer horrible pain that keeps them away from work and school.

He suggested:

1. The best way to treat severe menstrual cramps is to take oral contraceptives. This kind of pain responds to contraceptive pills taken in the normal way — once daily for 21 days. The woman should be first evaluated by her doctor to make sure there are no contraindications.

2. Mild cramps respond to normal painkillers like Paracetamol, Panadol, Tylenol, or any of the non- steroidal anti-inflammatory drugs like aspirin or ibuprofen. All of these have some side effects.

3. Antispasmodics like Baralgin or Buscopan can work as well, usually in conjunction with the treatments above.

4. A hot water bottle or heating pad compress against the stomach helps.

Other remedies you could try are:


1. Drink herbal teas like chamomile, mint, raspberry and blackberry, which may help soothe tense muscles and anxious moods.

2. Exercise. Regular workouts decrease the severity of cramps. It is therefore recommended that you start exercising the week leading up to the start of your period.

3. Empty your bladder as soon as you have the urge to urinate.



Read more: http://www.jamaicaobserver.com/magazines/allwoman/Simple-remedies-for-menstrual-cramps_10343747#ixzz1gVWgRTKT

Friday, December 09, 2011

Study Links Ovary Removal in Younger Women to Bone Thinning and Arthritis

Released: 12/6/2011 8:45 AM EST
Embargo expired: 12/8/2011 11:30 AM EST
Source: Johns Hopkins Medicine


Note to Reporters: The authors of this study will present their data during a press conference at the CTRC-AACR San Antonio Breast Cancer Symposium on Thursday, Dec. 8 at 11:30 AM, ET. The dial-in phone number for the press conference is (888) 647-7462.


Newswise — Having both ovaries removed before age 45 is strongly associated with low-bone mineral density and arthritis in later years, according to a new study by Johns Hopkins oncologists and epidemiologists. The analysis covered several thousand women who took part in a U.S. government-sponsored, multiyear national health study, and excluded women whose ovaries were removed due to cancer.

“This is one of the largest national studies, to my knowledge, that highlights the difference in bone-mineral density in women who have their ovaries removed at a young age. Our results suggest that such women should be monitored closely for osteoporosis,” says Kala Visvanathan, M.D., M.H.S., associate professor of oncology and epidemiology in the Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center. Results of the study are expected to be presented at the 2011 CTRC-AACR San Antonio Breast Cancer Symposium, held Dec. 6-10.

The investigators were interested in studying the long-term effects of ovary removal, known as oophorectomy, on bone health since the procedure is recommended to reduce ovarian and breast cancer risk in women at high risk for these diseases. Oophorectomy also is a common procedure in women who undergo hysterectomy, or womb removal. In the U.S., about 600,000 1 women per year undergo a hysterectomy, or womb removal, and about half of these women also have both ovaries removed. Hysterectomy is commonly performed in middle-aged women to treat symptoms of pain or bleeding caused by conditions, such as fibroids, endometriosis, or uterine prolapsed, or cysts. Women having hysterectomies for these benign conditions may also have their ovaries removed at the same time, believing that it will reduce cancer risk, according to Visvanathan.

Regardless of the reason for such surgery, however, the procedure has adverse effects, the Hopkins researchers say. Levels of estrogens and related hormones that are normally produced by the ovaries fall steeply after oophorectomy, bringing on menopause abruptly in women who are not yet postmenopausal. Estrogens help protect the body from aging and age-related disease, and physicians and epidemiologists over the past two decades have linked their premature loss to increased risks of parkinsonism, dementia, arthritis, and the brittle-bone condition known as osteoporosis.

For the study, Anne Marie McCarthy, a Ph.D. candidate at Hopkins’ Bloomberg School of Public Health, and Visvanathan used existing information from a health research database, called the third National Health and Nutrition Examination Survey (NHANES III). The information was gathered as part of a U.S.-sponsored epidemiological study conducted during 1988-94, and, among other health measures, it includes data from standard, X-ray-based measure of bone-mineral density in the hip and spine for thousands of women. “Using the NHANES III data, we set out to measure bone mineral density in women who’d had a bilateral oophorectomy compared with women with intact ovaries,” says McCarthy.

Of the data on 34,000 Americans aged two months and older included in the NHANES III study, McCarthy focused on more than 3,700 women aged 40 and over with no history of cancer. Most had intact ovaries; of the 560 women who had oophorectomy, about half had surgery before age 45.

McCarthy found that women who had both ovaries removed before age 45 had on average three percent lower bone mineral density than women with intact ovaries.

McCarthy examined arthritis risk, too, and found that 48 percent of women who had oophorectomies before age 45 reported an arthritis diagnosis, compared with only 32 percent for those with intact ovaries.

When McCarthy excluded women who had taken hormone replacement therapy (HRT), which normally counters the effects of lost ovarian hormones, these added risks became even higher. “Women who had had a bilateral oophorectomy before age 45 and didn’t take HRT were about twice as likely to get arthritis and three times as likely to have low-bone mineral density, compared with those with intact ovaries,” she says.

The NHANES III data represent snapshots of subjects’ health, and do not conclusively establish that oophorectomy causes lower bone mineral density, according to the researchers. But the Hopkins researchers’ analysis is consistent with previous studies, they say, and strongly suggests that oophorectomy can accelerate age-related conditions, such as osteoporosis – and thus shouldn’t be done without a clear medical reason. “The key factor may be the abrupt removal of ovarian hormones, in contrast with natural menopause in which there is a gradual decline, but that’s something we need to study further,” says Visvanathan.

Women with cancer and other medical conditions that necessitate oophorectomy, and women with specific genetic mutations that bring extremely high ovarian cancer risk, should still get their ovaries removed, she adds. “But they should be monitored closely for early signs of low-bone mineral density, so that osteoporosis can be prevented with the appropriate treatments.”

The research was funded by the Breast Cancer Research Foundation.

On the Web:
http://www.hopkinskimmelcancercenter.org/

CTRC-AACR San Antonio Breast Cancer Symposium: http://www.sabcs.org/

Reference:
1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585770

http://www.newswise.com/articles/johns-hopkins-study-links-ovary-removal-in-younger-women-to-bone-thinning-and-arthritis

Thursday, December 08, 2011

Protagen Collaborates in Endometriosis Biomarker Project

Protagen Collaborates in Endometriosis Biomarker Project
Protagen AG
Protagen AG, a specialist for in-vitro diagnostics, has announced that it is to collaborate with Bayer HealthCare Pharmaceuticals on the clinical validation of Endometriosis biomarkers. The project will build on the results of the Endometriosis biomarker discovery study performed last year.

Endometriosis is a gynaecological condition which occurs in roughly 5-10% of women worldwide. It occurs when uterine cells grow outside of the uterine cavity, often on the ovaries. The debilitating condition can cause recurrent pelvic pain of varying severity, constipation, fatigue and infertility issues in sufferers.

Protagen has successfully developed the proprietary UNIarray® technology platform for the development of novel, non-invasive diagnostic tests based on auto-antibody signatures in human blood.

The ‘gold standard’ diagnostic test for endometriosis is currently laparoscopy, a visual inspection of the abdominal organs followed by surgical removal and examination of lesions. The collaborative project to be undertaken by Protagen AG and Bayer Healthcare Pharmaceutical, is aimed at employing the UNIarray® technology for the predictive diagnosis of Endometriosis.

“With the targeted advancement of the UNIarray® technology platform, Protagen has developed into a preferred partner for drug development companies”, states Dr. Peter Schulz-Knappe, CSO and Executive Vice President Diagnostics at Protagen, “now we can directly support our collaboration partners in pharma and biotech in all clinical Phases I-IV with the development of therapy specific diagnostic assays. Besides Endometriosis, our technology is applied in autoimmune diseases like Multiple Sclerosis, chronic inflammatory diseases and cancer. Cooperation partners are, amongst others, Bayer, Biogen-Idec und SuppreMol”.

In order to understand the biochemical and molecular biological processes of Endometriosis, new technologies like UNIarray® are becoming increasingly important. Improving the predictive diagnosis of Endometriosis should help to improve patient’s quality of life.

Saturday, December 03, 2011

Rise in Dangerous Type of Ovarian Cancer

Poon Chian Hui - Straits Times Indonesia | November 18, 2011

More women in Singapore are coming down with an aggressive form of ovarian cancer whose symptoms are vague and survival rate low.

In 1988, 5.2 percent of all ovarian cancers were of the type called clear cell carcinoma. In 2007, the figure went up to 13.4 percent.

Less than 40 percent of women who get it survive, even when the cancer is detected early, said Associate Professor Tay Sun Kuie of the Singapore General Hospital (SGH).

In contrast, other types of ovarian cancer have a survival rate of as high as 70 percent when discovered early.

Prof Tay led a study which looked at the profiles of 256 ovarian cancer patients seen at SGH from 2004 to 2009, and examined national trends based on data from the Singapore Cancer Registry from 1988.

Ovarian cancer is the fifth most common among women in Singapore after breast, colorectal, lung and uterus, and nearly 300 are diagnosed with it every year.

It affects one out of 18 female cancer patients, and some 40 percent of cases occur in those aged 55 and above. The clear cell type usually crops up earlier, in those aged 40 onwards.

The symptoms for clear cell carcinoma are vague, but it has been found to occur in women who have painful and irregular periods and who are mysteriously losing weight or their appetite.

The study also found that women who were never pregnant are 14 percent more likely to get this aggressive cancer, compared with ovarian cancer patients who had at least one child.

There is also a link to endometriosis, a disorder where the womb lining responsible for menstruation is found outside the womb, leading to severe menstrual cramps, chronic pain in the pelvic region and infertility.

Patients who have the clear cell type are nearly five times more likely to have endometriosis than those with other types of ovarian cancer.

Clear cell carcinoma is the most lethal of all ovarian cancers. Even with surgery and chemotherapy, up to 80 percent of sufferers fail to improve, even if they were diagnosed at an early stage.

Prof Tay, a senior consultant in obstetrics and gynaecology, said the cancer cells have special genes that makes them more resistant to chemotherapy drugs. "Giving the cancer cells medicine is like giving them water - it doesn't kill them," he said.

SGH decided to research clear cell carcinoma because the cancerous cysts resemble ordinary ones in ultrasound and computed tomography (CT) scans.

Cysts in the ovaries are common and normally harmless.

"The cyst looks just like an empty fish bowl," said Prof Tay. "It can confuse doctors... because of the seemingly harmless appearance."

This was the case for a patient known only as Madam Lim in the study, which was first presented at the Singapore International Congress of Obstetrics and Gynaecology in August.

The 41-year-old manager, who was married but never pregnant, had a history of endometriosis.

When her pain flared up again, she underwent ultrasound and CT scans which revealed a large cyst measuring 15cm in diameter.

During the operation to remove it, doctors realized she actually had clear cell ovarian cancer.

Her condition is currently stable after treatment.

As doctors "cannot possibly take out every cyst in all women", Prof Tay hoped the study would help doctors in better diagnosing this cancer by pointing out, for example, the link with endometriosis.

He said women who experience an unexplained loss of appetite and worsening symptoms of endometriosis may want to seek medical advice early.

"This doesn't mean that one should be alarmist, but women ought to be more aware of changes in their body," he said.

Reprinted courtesy of Straits Times Indonesia. To subscribe to Straits Times Indonesia and/or the Jakarta Globe call 021 2553 5055.


http://www.thejakartaglobe.com/international/rise-in-dangerous-type-of-ovarian-cancer/479337#Scene_1

Wednesday, November 30, 2011

Notice of Decision for Pr VISANNE® Canada

Notice of Decision for PrVISANNE®Help on accessing alternative formats, such as Portable Document Format (PDF), Microsoft Word and PowerPoint (PPT) files, can be obtained in the alternate format help section.

(PDF Version - 23 K)
Contact: Bureau of Metabolism, Oncology and Reproductive Sciences

Date issued: November 7, 2011

On October 12, 2011, Health Canada issued a Notice of Compliance to Bayer Inc. for the drug product, Visanne.

Visanne contains the medicinal ingredient dienogest which is a progestin.

Visanne is indicated for the management of pelvic pain associated with endometriosis. The efficacy of Visanne has not been tested beyond 15 months.

Endometriosis is a gynaecological disease where endometrial tissue is found outside the uterine cavity, most commonly on the ovaries and the peritoneal surface. This tissue can cause inflammation and adhesions which result in chronic pelvic pain and often infertility. The cause of endometriosis remains unknown. Visanne reduces the endogenous production of estradiol and thereby suppresses the trophic effects of estradiol on both the eutopic and ectopic endometrium. When given continously, Visanne leads to a hyperprogestogenic and moderately hypoestrogenic endocrine environment causing initial decidualization of endometrial tissue. In addition to the estradiol-mediated effects Visanne also has direct antiproliferative, immunologic and antiangiogenic effects that contribute to the reduction of pelvic pain associated with endometriosis.

The market authorization was based on quality, non-clinical, and clinical information submitted. The efficacy and safety of Visanne were demonstrated primarily in three multicentre Phase III studies. All three studies enrolled patients with a confirmed diagnosis of endometriosis with various stages of disease severity. Assessment of pelvic pain associated with endometriosis was determined by using a visual analog scale (0-100 mm, where 0 mm represents no pain and 100 mm represents severe pain). The first study was a double-blind placebo-controlled study where 102 patients were treated orally (PO) with a Visanne 2 mg tablet once daily (OD) compared to 96 patients who were treated with a placebo, over a 12 week period. The second study was an open-label extension to the placebo-controlled study. The extension study included 168 women; 87 previously treated with Visanne (2 mg, PO, OD) and 81 previously treated with placebo. All 168 women received Visanne (2 mg, PO, OD) for an additional 52 weeks to assess the long-term efficacy of Visanne treatment. The third study compared Visanne (2 mg, PO, OD) to 3.75 mg leuprolide acetate administered intramuscularly every four weeks, where 120 patients received Visanne treatment and 128 patients received leuprolide acetate, for a 24-week treatment period. Results from all three studies demonstrated that treatment with Visanne produced clinically significant reductions in pelvic pain compared to baseline values. In the placebo-controlled study, following 12 weeks of treatment with Visanne, the mean reduction of pelvic pain compared to baseline was 27.4 ± 22.9 mm. The open-label extension study showed continued improvement in pelvic pain for up to 15 months. In the third active comparator study, Visanne demonstrated efficacy similar to leuprolide acetate in reducing pelvic pain associated with endometriosis. In all clinical studies, Visanne was generally well-tolerated.

Visanne (2 mg, dienogest) is provided in tablet form. The recommended dose of Visanne is one oral tablet per day, preferably taken at the same time each day, with some liquid as needed. Visanne tablets are intended for continuous administration regardless of any vaginal bleeding. Dosing guidelines are available in the Product Monograph.

Visanne is contraindicated in women with any of the conditions listed below, which are partially derived from information on other progestin-only preparations. Should any of the conditions appear during the use of Visanne, treatment must be discontinued immediately.

•Known or suspected pregnancy;
•Lactation;
•Active venous thromboembolic disorder;
•Arterial and cardiovascular disease, past or present [for example (e.g.) myocardial infarction, cerebrovascular accident, ischaemic heart disease];
•Diabetes mellitus with vascular involvement;
•Presence or history of severe hepatic disease as long as liver function values have not returned to normal;
•Presence or history of liver tumours (benign or malignant);
•Known or suspected sex hormone-dependent malignancies;
•Undiagnosed abnormal vaginal bleeding;
•Any ocular lesion arising from ophthalmic vascular disease, such as partial or complete loss of vision or defect in visual fields;
•Current or history of migraine with focal aura;
•Hypersensitivity to dienogest or to any ingredient in the formulation or component of the container.
Visanne should be administered under the conditions stated in the Product Monograph taking into consideration the potential risks associated with the administration of this drug product. Detailed conditions for the use of Visanne are described in the Product Monograph.

Based on the Health Canada review of data on quality, safety, and efficacy, Health Canada considers that the benefit/risk profile of Visanne is favourable for the indication stated above.

© 2011, Bayer Inc.
®VISANNE is a trademark used under license by Bayer Inc.

Notices of Decision (NDs) are produced in accordance with the Summary Basis of Decision (SBD) initiative. All NDs will be reproduced within the corresponding SBD, normally available within 5 months of product authorization.

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/nd_ad_2011_visanne_132174-eng.php

Saturday, November 26, 2011

Endometriosis

This patient education video explains endometriosis. Endometriosis is a common medical condition that affects women. The program covers anatomy, symptoms, causes, diagnosis, and treatment options.




Sunday, November 20, 2011

'Top Chef' Host Padma Lakshmi On Dealing With Her Chronic Pain From Endometriosis

Padma Lakshmi, an author, model and Emmy-nominated host of Bravo's "Top Chef," suffered chronic pain every month for 23 years before she was finally diagnosed with endometriosis at age 36.

"I even had regular exams, and I had an ovarian cyst removed. They said everything would be better, but it didn't, and that was the tip of the iceberg," Lakshmi, now 41, said in an interview with HuffPost. "If I had been diagnosed at 20, or 25, the quality of my life would have been drastically different."

Endometriosis is actually quite common, affecting 8.5 million women in North America, though many are not diagnosed until their mid-20s, according to the Endometriosis Foundation of America, a non-profit organization Lakshmi co-founded with her doctor, Dr. Tamer Seckin, MD, to educate girls and young women about the condition. Just last month, the foundation held a conference to teach nurses about endometriosis, as they are often the first to see potential signs of the condition.

Undiagnosed and untreated, endometriosis causes abnormally painful cramping, bloating and nausea, and can even lead to infertility, according to the Mayo Clinic. It's often confused for ovarian cysts, pelvic inflammatory disease and irritable bowel syndrome. There is no cure for the condition, which occurs when the endometrium (the tissue that lines the inner part of the uterus) grows outside of the uterus, most commonly on the ovaries, bowel or the tissue that lines the pelvis, according to the Mayo Clinic. Depending on the pain, painkillers, hormone therapy, surgery and even hysterectomy are options for treating the condition.

Risk factors for the condition include having a shorter-than-normal menstrual cycle, having never given birth and having a family history (a mom, aunt or sisters) of the disease, the Mayo Clinic reported.

Lakshmi's in the family history camp. Her mother had undiagnosed endometriosis, and so when Lakshmi grew up experiencing the severe pain every month, she thought "it was just my lot in life."

Click here to read the rest: http://www.huffingtonpost.com/2011/11/15/padma-lakshmi-endometriosis-chronic-pain_n_1094003.htm l

Thursday, November 10, 2011

Oxytocin receptor expression in smooth muscle cells of peritoneal endometriotic lesions and ovarian endometriotic cysts.

Oxytocin receptor expression in smooth muscle cells of peritoneal endometriotic lesions and ovarian endometriotic cysts.
Authors
Mechsner S, Bartley J, Loddenkemper C, et al.
Institution
Endometriosis Research Center Berlin, Department of Gynecology, Charité, Campus Benjamin Franklin, Hindenburgdamm 30, 12200 Berlin, Germany.

Source
Fertil Steril 2005 Apr.:1220-31.
Abstract
To investigate the expression of oxytocin receptor (OTR) in peritoneal and ovarian endometriotic lesions.Retrospective nonrandomized study.University hospital endometriosis research center.Premenopausal women with histologically confirmed endometriosis were selected. Peritoneal endometriotic lesions (n = 120); ovarian endometriotic cysts (n = 40); peritoneal biopsies, distant from the endometriotic lesion (n = 55); and unaffected peritoneal biopsies from patients without endometriosis (n = 11) were obtained. Hysterectomy specimens from patients without endometriosis and/or adenomyosis were used for controls (n = 10).Histopathological examination of peritoneal and ovarian specimens for OTR expression and identification of smooth muscle cells by immunohistochemistry staining with antibodies against OTR and smooth muscle actin. In addition, Western blot analysis, double-immunofluorescence, and in vitro studies with primary cell cultures have been performed.Comparison of the immunoreactive score of the OTR and smooth muscle actin expression with the smooth muscle content in peritoneum with and without endometriosis.In the epithelial cells of endometriotic lesions, we could demonstrate a high OTR expression. The stromal cells were OTR negative with the exception of some single cells. By using a monoclonal anti-smooth muscle actin antibody, these cells could be identified as intrastromal OTR-positive smooth muscle cells. The peritoneum of women with endometriosis shows a significantly higher smooth muscle content than the peritoneum of women without endometriosis. There were no significant differences between the smooth muscle content of active or inactive lesions and the stage of disease.Oxytocin receptor is expressed in smooth muscle cells and epithelial cells of peritoneal endometriotic lesions and ovarian endometriotic cysts. The inhibition of OTR by specific inhibitors might be a useful approach for the treatment of endometriosis-associated pain.

Mesh
Adult
Blotting, Western
Endometrium
Female
Fluorescent Antibody Technique
Humans
Metaplasia
Middle Aged
Myocytes, Smooth Muscle
Myometrium
Ovarian Cysts
Peritoneum
Receptors, Oxytocin

Language
eng

Pub Type(s)
Journal Article Research Support, Non-U.S. Gov't

PubMed ID
15831296
http://www.unboundmedicine.com/anesthesia/ub/citation/15831296/Oxytocin_receptor_expression_in_smooth_muscle_cells_of_peritoneal_endometriotic_lesions_and_ovarian_endometriotic_cysts_

Wednesday, November 09, 2011

Does laparoscopic management of deep infiltrating endometriosis improve quality of life? A prospective study.

 Deep infiltrating endometriosis (DIE) can affect importantly patients'quality of life (QOL). The aim of this study is to evaluate the impact of the laparoscopic management of DIE on QOL after six months from treatment.MethodS: It is a prospective cohort study.

In a tertiary care university hospital, between April 2008 and December 2009, 100 patients underwent laparoscopic management of DIE and completed preoperatively and 6-months postoperatively a QOL questionnaire, the short form 36 (SF-36).Quality of life was measured through the SF-36 scores. Intra-operative details of disease site, number of lesions, type of intervention, period of hospital stay and peri-operative complications were noted.

Results: : Six months postoperatively all the women had a significant improvement in every scale of the SF-36 (p<0,0005). Among patients with intestinal DIE, significant differences in postoperative scores of SF-36 were not detected between patients submitted to nodule shaving and segmental resection (p>0.05). There were no significant differences in the SF-36 scores at 6 months from surgery between patients who received postoperative medical treatment and patients who did not (p>0.05).

Conclusions: : Laparoscopic excision of DIE lesions significantly improves general health and psycho-emotional status at six months from surgery without differences between patients submitted to intestinal segmental resection or intestinal nodule shaving.

Author: Mohamed MabroukGiulia MontanariManuela GuerriniGioia VillaSerena SolfriniClaudia VicenziGiuseppe MignemiLetizia ZannoniClarissa Frasca'Nadine Di DonatoChiara FacchiniSimona Del FornoElisa GeraciGiulia FerriniDiego RaimondoStefania AlvisiGiulia Gio

http://7thspace.com/headlines/399070/does_laparoscopic_management_of_deep_infiltrating_endometriosis_improve_quality_of_life_a_prospective_study.html

Friday, November 04, 2011

Massachusetts Adopts Groundbreaking Endometriosis Resolution

http://www.prweb.com/releases/2005/11/prweb306562.htm
Representative Elizabeth A. Poirier (R) introduces Endometriosis Awareness to Massachusetts with the resolution below urging increased awareness of endometriosis.
Email PDF Print .(PRWEB) November 5, 2005

Massachusetts House of Representatives

Urging Increased Awareness of Endometriosis

Whereas, Endometriosis is a painful, reproductive and immunological disease which is a leading cause of female infertility, chronic pelvic pain, and gynecological surgery, and accounts for nearly half the 600,000 hysterectomies performed annually, and endometriosis is more prevalent than Alzheimer's disease, Parkinson's disease and even Breast Cancer, that places significant costs for the individual, and the Commonwealth in medical bills and lost productivity; and

Whereas, Endometriosis can negatively affect a woman or teen's ability to work, attend school, social functions or care for herself and her family, and can frequently be misdiagnosed due to lack of awareness and understanding of the symptoms ; and

Whereas, Endometriosis symptoms include pelvic pain with or without menstruation, infertility, miscarriage, ectopic pregnancy, pain associated with sexual intercourse, gastrointestinal difficulties, fatigue, chronic pain, allergies and other immune system-related dysfunction and associations to diseases including multiple sclerosis, lupus, and fibromyalgia, and endometriosis can lead to painful internal scar tissue know as adhesions, resulting in a complex set of symptoms called Adhesion Related Disorder; and

Whereas, studies have also shown an elevated risk of certain cancers and autoimmune disorders in women with endometriosis and rarely, even malignant changes within the disease itself, thus researchers remain unsure as to the specific cause of endometriosis and there is no definitive cure, and current treatments are often accompanied by significantly negative side effects; and

Whereas, in recognition of the disabling effects endometriosis as a significant disabling disease in women, it is incumbent upon the citizens of the Commonwealth of Massachusetts to support the courageous individuals living and coping with this painful condition; therefore be it

Resolved, That the Massachusetts House of Representatives moves to promote Endometriosis Awareness Month every March and to encourage awareness of the Endometriosis Research Center, The Endometriosis Association, and The International Adhesion Society; and be it

Resolved, That a copy of these resolutions be forwarded by the clerk of the House of Representatives to the Endometriosis Association.

House of Representatives, adopted October 31, 2005

http://www.endometriosisassn.org/
http://www.endocenter.org/
http://www.adhesions.org/
http://endotimes.blogspot.com/

Our deepest gratitude to Representative Elizabeth A. Poirier for her continuing dedication to women's issues in the Commonwealth.

Teen finds relief from debilitating endometriosis

BY CYNTHIA BILLHARTZ GREGORIAN • cbillhartz@post-dispatch.com > 314-340-8114 STLtoday.com  |

Read more: http://www.stltoday.com/lifestyles/health-med-fit/fitness/article_aea7c10e-1f4f-5f7b-8353-1761f10c6d9e.html#ixzz1cjQpZ7fu
Endometriosis is a common disease by most standards. Between 6 percent and 10 percent of women of child-bearing age have the condition, which results when cells from the lining of the uterus grow in other parts of the body.

Yet many women, like Emily Ingargiola, endure intense and prolonged pain and the possibility of infertility because they're misdiagnosed or inadequately treated, says Dr. Patrick Yeung. He intends to change that.

In August, Yeung, one of a handful of OB-GYNs nationwide who call themselves "excisionists," joined SLUCare and formed the Center for Endometriosis at St. Mary's Health Center. Before that, he'd been practicing at Duke University, where he founded a similar center.

The main mission of the clinic, Yeung said, is to take seriously the women who come to him seeking pain relief. In those who prove to have endometriosis, he'll use a CO2 laser to excise it. All of it. No matter how big or small or where it is.

Most doctors only recognize some lesions as endometriosis and won't touch it on certain organs.

The center at St. Mary's also will study the value of excising endometriosis with CO2 lasers compared to more traditional removal methods such as cauterization and ablation, Yeung said. And it will become home to an endometrial tissue bank for further study.

Ingargiola, 19, of High Ridge, became Yeung's first patient shortly after he set up shop in St. Louis.

By then, she and her mother, Nancy Ingargiola, a registered nurse who has worked in obstetrics and gynecology, had grown frustrated with a medical system that initially refused to believe Emily had a problem.

Ingargiola's troubles started shortly after she reached puberty at age 14. At first she had extreme pain but just during menstruation.

Then she started urinating and defecating blood. Her periods were so heavy that she'd use a tampon and maxi-pad simultaneously and bleed through both. The pain started lasting all month, often leaving her doubled over, unable to go to school.

At first, she said, her doctors told her pain was normal. That she was being whiny. Then they said she had irritable bowel syndrome, most likely from stress.

She spent an entire month during her junior year of high school in the hospital. "It's really traumatic to have something going on in your body and having a lot of pain and having doctors not believe you and say that you're crazy," Emily Ingargiola said. "Not being listened to was the hardest part for me."

Finally, in March 2010, doctors at the Mayo Clinic suggested that maybe she had endometriosis. An ultrasound in St. Louis indicated that was likely. When hormone suppressants didn't work, doctors performed laparoscopic surgery and found severe endometriosis on her bladder, bowels, ureter, ovaries and pelvic lining. They ablated it twice. Ablation vaporizes endometrial lesions by either freezing, heating, microwaving or sending electrical currents through them.

It didn't work. The pain and endometriosis returned within weeks.

By this time, Ingargiola was enrolled at Bellarmine University in Louisville, Ky. Out of desperation, she began getting Lupron injections, which suppressed the endometriosis and induced menopause. The side effects were almost as bad as the pain.

"I turned into a different person," Ingargiola said. "I was getting hot flashes, I was completely unable to remember things or focus on school, and I had horrible mood swings."

She had been on Lupron for three months when her mother attended a medical conference and heard about Yeung.

Emily Ingargiola had the laparoscopic CO2 laser excision surgery Aug. 23.

THE TEXTBOOK PATIENT

Ingargiola is the type of patient Yeung hopes to help.

Many OB-GYNs have accepted that recurrences of pain and endometriosis after ablation and cauterization are normal, particularly in teenagers, he said.

But excisionists like Yeung who train at the Center for Endometriosis Care in Atlanta don't accept that.

They're taught to recognize subtle forms of the disease, including the slightest of spots, which other OB-GYNs either miss or dismiss as something else. Then they use a CO2 laser to cut out every last bit of it.

Most OB-GYNs only cauterize or ablate tissue on the surface of organs.

"You might be getting just the tip of the iceberg," Yeung said. "We know endometriosis can invade, and you can't tell which lesions are invading. I and others believe that excision, which is cutting out the entire implant down to healthy tissue, is the only way to 100 percent treat it."

Read more: http://www.stltoday.com/lifestyles/health-med-fit/fitness/article_aea7c10e-1f4f-5f7b-8353-1761f10c6d9e.html#ixzz1cjQa2nB i

Wednesday, October 26, 2011

Endometriosis slowly emerges as a debilitating Disease for Women

Endometriosis slowly emerges as a debilitating Disease for Women

Written by Cleophas Mutinda
Imagine a pain in your abdomen so excruciating that you are unable to get out of bed for several days every month. That is horrible enough, but when it continues 12 times a year for more than 27 years, majority of people would agree it is cruel.

Most women with endometriosis will recognise this shocking scenario as not imaginary, but very real. They know the misery of pelvic pain and have poignant stories of how endometriosis has devastated their lives with terrible suffering. Many women feel angry or despondent about being robbed off a normal life during teenage, adulthood and even sometime a ruined motherhood.

Endometriosis is a gynaecological condition, which occurs when, cells like the ones (endometrial cells) lining inside of the uterus (womb) grow outside, usually on the surfaces of organs in pelvic and abdominal areas. It can be found within the peritoneal cavity, on the ovaries and the bowels or bladder. In extremely rare cases, endometriosis can be found in lungs or other parts of the body. Endometriosis can affect any menstruating woman, from time of her first period to menopause, regardless of race, ethnicity or socio-economic status. Endometriosis rarely persists after menopause. The disorder, for which there is no absolute cure, affects over 70 million women and girls worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness.

It is not known exactly what causes endometriosis. But over the years several theories have been advanced to explain the probable cause of the disease although none can fully explain the various clinical manifestations of the disease. A theory proposed by John Sampson in the 1920s, suggests that endometriosis may result from something called “retrograde menstrual flow”, in which some of the tissue that a woman sheds during her period flows back through the tubes and grows in the pelvic cavity. While studies show that retrograde menstrual flow is a universal phenomenon among women of reproductive age, the theory fall short of explaining why the tissues survive in some women, but fail in others. Another theory proposed by Iwanoff in 1898, claims that, the transformation of what we call coelomic epithelium into endometrial-like tissue may be a cause of endometriosis. This theory has been supported by experimental data. The induction theory, proposes that an endogenous factor can induce peritoneal cells to develop into endometrial tissue. This theory has been supported by experiments in rabbits.



Lymphatic or vascular hypothesis suggests that endometrial fragments may be transported through blood vessels or the lymphatic system to other parts of the body. This theory speculates how endometriosis ends up in distant sites, such as the lung, brain, or the skin. A genetic linkage has been adduced which claims that, this disease could be inherited, or result from genetic errors, making some women more prone to develop the condition than others.



Studies show that the risk of endometriosis is seven times greater if the disease has affected a first-degree relative. This theory has been supported by experiments in mouse model but has not been verified either in women. Immunological etiology (cause) has also been conjured since studies report that many women with endometriosis exhibit immunological abnormalities. It is speculated that the immune system may fail to clear the menstrual debris in the pelvic cavity, allowing the endometrial cells to implant and develop into endometriosis.



Also most scientists agree that endometriosis is exacerbated by oestrogen; a hormone involved in the thickening of the endometrium and appears to promote the growth of disease implants. Some studies have pointed out environmental factors like toxins may contribute to the development of endometriosis, though this theory has not been confirmed and remains controversial.



The most common symptoms of endometriosis are abdominal pain and infertility. Some studies have reported that endometriosis may occur in 30%-40% of women with infertility and the incidence of endometriosis in women with pelvic pain may be higher than 50%.



Endometriosis associated pain may include but not limited to extremely painful (disabling) menstrual cramps, chronic pelvic pain (which includes lower back pain and pelvic pain), pain during or after sex, painful bowel movements or painful urination during menstrual periods, heavy menstrual periods and bleeding between periods. The amount of pain a women feels is sometimes not linked to degree of endometriosis. Some women have no pain even though their disease is extensive, while others have severe chronic pelvic pain even though they have only few affected areas.

The relation between endometriosis and pain is still shrouded in the mist of intricate puzzle and ignorance. Many women with endometriosis feel pain during their periods. Normally, a woman’s menstrual cycle involves her endometrial tissue to build up, breaks down into blood and tissue debris, and is shed as her menstrual flow or period. This cycle of growth and shedding happens every month under normal condition. Endometriosis grows outside the uterus and also goes through a similar cycle, build-up, breakdown and bleed every month. The problem is the tissue is in the wrong place and can’t leave the body the way a woman’s period normally does. Studies show that as part of this process, endometriosis may spur the production of substances that may irritate the nearby tissue, as well as provoke the release of chemicals that cause or mediate pain. Over time, endometriosis areas can grow and become nodules or bumps on the surface of pelvic organs, or become cysts (fluid-filled sacs) in the ovaries and may cause the organs in the pelvic area to adhere together.

Endometriosis is more than just simple "killer" cramps. Women and girls around the world continue to suffer in silence with a disease that can be potentially devastating to every aspect of their lives. It can be so painful as to render a woman or teenager unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Endometriosis has a negative impact on the individual quality of life, affecting both physical and emotional well-being. A study by the American Endometriosis Association, demonstrated that 81% of the endometriosis patients in USA were unable to work, including household chores, because of pelvic pain. Approximately 27% were incapacitated for 3 or more days and 87% complained of fatigue or low energy. These figures are indicators of enormous suffering, in addition to the healthcare costs incurred. The need to develop intervention strategies is eminent, a published poll reveals women have to wait an average of 11.7 years in US and 8 years in UK to get a correct diagnosis after the initial onset of symptoms and a patient will seek the counsel of five or more physicians before her pain is adequately addressed and diagnosed. Once diagnosed, it is not unusual for a patient to undergo repeat surgeries and embark on many different medical therapies in an attempt to treat her symptoms. Endometriosis is a bit puzzling. We do not know why it causes such extreme symptoms in some women, while less in others. The treatment options can sometimes be unsuccessful. Sadly, endometriosis is associated with menstruation, sex, infertility, and pain (taboos in many societies), thus it is a disease that is not well known, understood, or accepted in the general public. This is frustrating for those who suffer from endometriosis, and for those who care for someone with the disease.

There is no non-invasive test to diagnose endometriosis. In fact, the only gold standard diagnosis of endometriosis is a surgical procedure known as laparoscopy and confirm histologically by taking a biopsy of the suspicious tissue.

However, this is an expensive, minimally invasive procedure. Furthermore, a specialised surgeon is needed for adequate assessment of the pelvis, for recognition of the various types and appearances of the disease. If the patients decline surgery, this makes diagnosis a challenge, and therefore an experienced gynaecologist should be able to recognise symptoms suggestive of endometriosis. The fact that there is no non-invasive diagnostic test for endometriosis is frustrating for clinicians as well as for women with the disease and underscores the need for search of better diagnostic tools.

Since the cause of endometriosis remains unknown, a treatment that fully cures the disease is yet to be developed. Choosing a holistic, treatment option comes down to the individual woman's needs, depending on symptoms, age, and reproductive desires.

Pain is the most common symptom in many women with endometriosis, mainly managed by painkillers, which may vary from simple analgesics to non-steroidal anti-inflammatory drugs. Most researchers agree that endometriosis is exacerbated by oestrogen. Subsequently, hormonal treatments for endometriosis attempt to reverse oestrogen production in a woman's body and thereby alleviate symptoms. However, hormonal therapies have varying degrees of side effects, and unfortunately, whatever pain relief is achieved tends to be only temporary for many women. Most gynaecologists agree that laparoscopic surgery is the only way to diagnose and treat endometriosis. Laparoscopy involves a small cut or incision in the abdomen, inflating the abdomen with harmless gas, and then inserts a viewing instrument with help of light (Laparoscope) into the abdomen. The success of surgery depends largely on the skills of the surgeon and the thoroughness of the surgery. The aim is to remove all endometriosis lesions, cysts, and adhesions. Today, most endometriosis surgery is being done through the laparoscopy, although a full abdominal incision called a laparotomy may still be required in rare cases for extensive disease or bowel resections.

Although the prevalence of endometriosis is well documented in women living in the developed world, studies among African women are still limited. The current myth is that endometriosis rarely affects women of African origin. However, among African-American women in the USA, studies have shown endometriosis is one of the common indications for major gynaecological surgery and hysterectomy, and is associated with a high hospital costs. Although genetically, African-American and African women from the African continent are not necessarily identical given the known genetic admixture among the African-American population. Lack of awareness of endometriosis as a potentially disabling disease and poor access to state-of art diagnostic and therapeutic facilities has contributed to the meagre data on prevalence of the disease in the African population. There is need to initiate awareness campaign of endometriosis to reach all women in Africa. Also to highlight the general lack of information, facilitate endometriosis research efforts and draw attention to the impact and implications of the disease to healthcare systems in our country and the continent in general.

The writer is a Senior Scientist with special interest in endometriosis and ovarian cancer research

http://www.africasciencenews.org/en/index.php/health/63-health/194-endometriosis-slowly-emerges-as-a-life-threatening-disease-for-women

Monday, October 24, 2011

Putting the pieces together: endometriosis blogs, cognitive authority, and collaborative information behavior

J Med Libr Assoc. 2011 April; 99(2): 127–134.
doi: 10.3163/1536-5050.99.2.004 PMCID: PMC3066582

Copyright © 2011, Authors.
Putting the pieces together: endometriosis blogs, cognitive authority, and collaborative information behavior*
Diane M Neal, PhD
Assistant Professor ; Email: dneal2@uwo.caPamela J McKenzie, PhD
Associate Professor and Assistant Dean Research; Faculty of Information and Media Studies, The University of Western Ontario, North Campus Building, Room 240, London, ON, Canada N6A 5B7 ; Email: pmckenzi@uwo.caReceived June 2010; Accepted October 2010.
Readers may use articles without permission of copyright owners, as long as the author and MLA are acknowledged and the use is educational and not for profit. Other Sections▼
AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCESAbstractObjective:
A discourse analysis was conducted of peer-written blogs about the chronic illness endometriosis to understand how bloggers present information sources and make cases for and against the authority of those sources.Methods:
Eleven blogs that were authored by endometriosis patients and focused exclusively or primarily on the authors' experiences with endometriosis were selected. After selecting segments in which the bloggers invoked forms of knowledge and sources of evidence, the text was discursively analyzed to reveal how bloggers establish and dispute the authority of the sources they invoke.Results:
When discussing and refuting authority, the bloggers invoked many sources of evidence, including experiential, peer-provided, biomedical, and intuitive ones. Additionally, they made and disputed claims of cognitive authority via two interpretive repertoires: a concern about the role and interests of the pharmaceutical industry and an understanding of endometriosis as extremely idiosyncratic. Affective authority of information sources was also identified, which presented as social context, situational similarity, or aesthetic or spiritual factors.Conclusions:
Endometriosis patients may find informational value in blogs, especially for affective support and epistemic experience. Traditional notions of authority might need to be revised for the online environment. Guidelines for evaluating the authority of consumer health information, informed by established readers' advisory practices, are suggested. Other Sections▼
AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES Highlights
•Endometriosis patients who blog about the illness may determine authority of information sources through both cognitive and affective methods.
Implications
•Because patients with chronic illnesses might have different authority criteria than medical librarians do, it could be useful to carefully incorporate electronic patient discussion forums, medical blogs written by laypeople, and other nontraditionally authoritative resources into consumer health information selection policies. Standard biomedical resources are certainly important to recommend to consumers, but they do not convey the complete picture of a chronic illness and its related experience.
•Patients with chronic illnesses and caregivers can benefit from sources such as blogs and online discussion lists that provide social and emotional support as well as accounts of “lived experience.”
•An understanding of the patient's potential epistemological community can make the librarian's recommendations more appropriate for the individual user.
Other Sections▼
AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCESINTRODUCTIONChronic illness is a context in which people may do a great deal of “information work” [1]. Chronic illnesses are often broad in scope and effect, difficult to diagnose, complex, ever changing, and not amenable to conventional treatments. They often have significant physical, emotional, and social repercussions, and their management requires work by the ill person and those around the ill person, much of which may require considerable time and energy, be mentally and emotionally demanding, and occur beyond doctors' offices [1].A major barrier to information access expressed by people with chronic illnesses is the difficulty of finding information relevant to their situations [1, 2]. Chronic illness is an important impetus for collaborative information behavior [3, 4]: As do information seekers in other contexts, people with chronic illnesses tend first to seek help or information from people like themselves [5]. Acquaintances with the same disease can provide socially appropriate opportunities to expose a seeker to disease-relevant information and support [6]. The desire for support underlies the creation of resources, services, and groups in which peers physically or virtually “come together to provide emotional and other support through sharing their personal lived experience as well as exchanging other resources” [7]. Participants in health-oriented support groups [8, 9] and online resources such as discussion forums and peer-authored blogs [10] report receiving both informational and emotional support. Illness blogs have many of the advantages of face-to-face peer sources without the stigma of approaching a peer with a personal question [6].Peer sources may also offer a highly valued and particularly relevant kind of information based on “wisdom and know-how gained through reflection upon personal lived experience” [11] rather than on professional knowledge. Experiential knowledge “consists of the statements, stories or narratives reflecting some aspect of an individual's experience that she or he values and trusts as knowledge. To an uninvolved observer, much experiential knowledge may sound like or appear to be small talk or everyday conversation” [11].The significance of experiential knowledge for people with chronic illnesses poses particular challenges for information professionals, who are schooled in selecting traditionally authoritative resources and employing evidence-based techniques for evaluating health information sources. Selection criteria for a health sciences journal include, among other things, its perceived “scholarly” status, its publisher, the affiliations of the journal's authors and editors, and its impact factor [12]. Health sciences monograph selection tools consist of resources such as core lists, vendors, and book reviews in medical journals [13]. Guidelines for consumer health information collection development focus on patient education literature written by health professionals, as well as by patient advocacy and professional organizations. Consumer-oriented library materials might also include general medical reference books [14]. These and other standard evaluation criteria assume that the most authoritative resources are authored by health care professionals and researchers. However, people with chronic illnesses may use authority criteria that are completely distinct from those that information professionals use [15]. For example, while a blog describing the author's experience with a chronic disease is unlikely to meet librarians' traditional standards for authority, it might be considered very authoritative by someone who is learning to cope emotionally with a new diagnosis [16].Library and information science (LIS) researchers have long been interested in the ways that individuals and communities evaluate the authority of information sources. The concept of cognitive authority has offered a useful framework for explaining an individual's situated judgments about the authority of information sources [17]. Cognitive authority is a particularly important concept for understanding users' evaluations of web resources [18]. It has been defined by Rieh, following Wilson [17], as “the extent to which users think that the information is useful, good, current, and accurate. Cognitive authority is operationalized as to the extent to which users think that they can trust the information” [18]. More recently, LIS researchers have adopted new approaches to the study of authority that consider not the cognitive processes by which an individual makes decisions about an information source, but the social practices whereby a community collaboratively negotiates what counts as an authoritative information source [19–,21]. Depression patients were found to rely on a wide range of resources, while using personal, experiential knowledge as confirmation of treatment effectiveness [20]. A study of the ways that members of a chronic illness community collectively filter, interpret, evaluate, and synthesize as they share can provide insight into the ways that authority is developed and challenged in that community [4]. Studies such as this can provide practitioners with new ways of thinking about the criteria they use when evaluating or recommending peer sources for chronic illness.This article analyzes the ways that peer bloggers with endometriosis present information sources and make cases for and against their authority. Endometriosis is an enigmatic chronic disease that causes uterine tissue implantation in areas other than the uterus. Highly underdiagnosed, it may affect up to 25% of reproductive-age women. Symptoms vary widely, but the most frequent complaint is pelvic pain, and endometriosis is a cause of common infertility. The broad spectrum of presentation and symptoms, as well as the absence of satisfactory treatments, leaves patients largely at a loss for information that they perceive as reliable [22]. For these reasons, Whelan characterizes women with endometriosis who work together to find answers as an “epistemological community” [23]. This analysis will show how bloggers' justification strategies draw on understandings that members of their specific epistemological community commonly hold.Blogs authored by people with chronic illness are of particular interest to LIS researchers, because they provide naturalistic sources of data about the blogger's illness-related information work [2], including selection, justification, evaluation, and interpretation of information identified by the blogger from other sources. Comments and links on blogs provide evidence of what Talja and Hansen call a “community of sharing” [4], a group of people who develop shared understandings and create knowledge structures that may in turn be used by others. Blogs allow both members and nonmembers of epistemic cultures to interact in dialogue and to participate in the culture [24]. They therefore offer the possibility of extending the face-to-face social networks that Veinot [6] has shown to mediate information validation. LIS researchers have begun to study social and community aspects of health- and illness-related information work [6, 25–,27]. Important findings about the readers of illness blogs have been identified [10]. However, there has so far been little consideration of what the blogs themselves can tell librarians and researchers about how people living with chronic illness evaluate information sources.
Read More : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3066582/