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

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

Part 2 - Darcy Spears News Report on Lupron Depot - (KTVN, Las Vegas)

Rectal endometriosis causing colonic obstruction and concurrent endometriosis of the appendix: a case report

http://7thspace.com/headlines/389786/rectal_endometriosis_causing_colonic_obstruction_and_concurrent_endometriosis_of_the_appendix_a_case_report.html

Introduction Endometriosis is a clinical entity which presents with functioning endometrial tissue at sites outside the uterus. Bowel endometriosis is usually asymptomatic, but it may show non-specific symptoms.

The presence and/or association of appendiceal endometriosis, concomitant with rectal endometriosis, is possible.Case presentationA 36-year-old Greek woman was admitted to the emergency room of our hospital with signs of acute abdomen. On physical examination, our patient had a painful distended abdomen.

Digital examination revealed an empty rectum and bowel obstruction was diagnosed. Our patient underwent exploratory laparotomy and rectum stenosis (almost complete obstruction) was observed.

The bowel stenosis was resected, and temporary colostomy and appendectomy were performed. The pathology report showed endometriosis of the colon and the appendix, and our patient received medical treatment for endometriosis.

Six months after this operation our patient had another surgery for restoration of large bowel continuity. No endometriosis was found.

Our patient was doing well at the one-year follow up.

Conclusion: Endometriosis of the bowel is a disease that may cause large bowel obstruction. In women of reproductive age, the surgeon should consider endometriosis as a differential diagnosis in case of various gastrointestinal symptoms.

Author: N. KatsikogiannisA. TsarouchaK. DimakisE. SivridisC. Simopoulos

Credits/Source: Journal of Medical Case Reports 2011, 5:320

Endotimes blogger opinion: Yikes, I would never have an open surgery....if they can't do it laparoscoply then they aint good enough!

Aromatase inhibitors in post-menopausal endometriosis

Postmenopausal endometriosis is a rare clinical condition. The diagnosis and treatment of an endometriotic lesion in postmenopausal women is complicated.

First line treatment choice should be surgical, given that there is a potential risk of malignancy. Medical treatment may be considered as second line or as an alternate first line treatment whenever surgery is contradicted and aims to alter the hormonal pathway leading to endometriosis progress.

Different hormonal regimens have been administered to these patients, with conflicting however results. Aromatase inhibitors (AIs) represent one of the most recently used drugs for postmenopausal endometriosis.

Clinical data for the use of (AIs) in postmenopausal patients is scarce. Up to date only 5 case reports are available regarding the use of these agents in postmenopausal women.

Although definite conclusions may be premature, AIs appear to considerably improve patients'symptoms and reduce endometriotic lesions size. Nonetheless the subsequent induced reduction in estrogen production, leads to certain short-term and long-term adverse effects.

Despite the limited available data, AIs appear to represent a new promising method which may improve symptoms and treat these patients, either as first line treatment, when surgery is contraindicated or as a second line for recurrences following surgical treatment. However, careful monitoring of patients'risk profile and further research regarding long-term effects and side-effects of these agents is essential prior implementing them in everyday clinical practice.

Author: Nikolaos PolyzosHuman FatemiApostolos ZavosGrigoris GrimbizisDimitra KyrouJuan Garcia VelascoPaul DevroeyBasil TarlatzisEvangelos Papanikolaou
Credits/Source: Reproductive Biology and Endocrinology 2011, 9:90

Published on: 2011-06-21

Copyright by the authors listed above - made available via BioMedCentral (Open Access). Please make sure to read our disclaimer prior to contacting 7thSpace Interactive. To contact our editors, visit our online helpdesk. If you wish submit your own press release, click here.

http://7thspace.com/headlines/386793/aromatase_inhibitors_in_post_menopausal_endometriosis.html

Eggsploitation

04-06-11: Award-winning documentary, 'Eggsploitation', was shown at Boston College Law School. Risks of lupron, and the lack of data-tracking of women who undergo egg donation and IVF, were discussed. 'RESOLVE' (the organization that alleges to "educate, advocate, and support the infertile") had in attendance a Board Member who attempted to discredit 'Eggsploitation' as "biased" and 'not representative of the industry'. 'RESOLVE's' Board Member failed to inform the audience of 'RESOLVE's' conflicts of interest: RESOLVE has a history of receiving hundreds of thousands of dollars from the fertility drug manufacturers, fertility clinics, and fertility doctors.

From: http://www.lupronvictimshub.com/

'Top Chef's Padma Lakshmi gets personal about endometriosis

'I didn’t know how much pain I was in until I wasn’t in pain anymore"

Cause Celeb highlights a celebrity’s work on behalf of a specific cause. This week, we speak with model, actress and television host Padma Lakshmi about her charity, the Endometriosis Foundation of America. Lakshmi herself had the painful disorder, which affects millions of women and adolescent girls in the United States.



Lakshmi joined the organization and relaunched it with Dr. Tamer Seckin in 2009. Lakshmi, host of “Top Chef” on Bravo channel, uses her celebrity to bring awareness to the disease and its symptoms. Endometriosis is an often painful disorder in which tissue that normally lines the inside of the uterus grows outside the uterus.On March 18, the Endometriosis Foundation of America hosted its third annual Blossom Ball to raise funds to combat the debilitating condition. To find out more information about endometriosis and future events, you can visit http://www.endofound.org/.

Click here to read more

No health insurance? Get help here

From Cnn
Click below for full story
http://www.cnn.com/2009/HEALTH/02/12/ep.health.insurance.help/index.html
Negotiating with doctors and hospitals is just one thing you have to learn how to do when your insurance disappears, says Steve Luptak, executive director of an assistance group called Healthcare Advocacy. "I've had so many people who've just been laid off coming to me for help because they've lost their insurance. They're so stressed, they're so depressed, they feel like it's the end of the world," he says. "But there are things you can do. It's not a futile situation," he says. Watch for more tips for the uninsured »
If you want to try to get new, affordable insurance, or find programs that offer you financial help for doctor's visits, prescription drugs and more, follow these steps:
Step 1: Get good advice
When you get laid off and lose your health insurance, you may need someone in your corner. Several places specialize in helping people find new, affordable insurance and free care:
Healthcare Advocacy
Patient Advocate Foundation
Patient Services Incorporated
Step 2: Search for affordable insurance
With advice from experts at the groups above, begin your search for affordable insurance. Start with COBRA, which means you continue with your employer's insurance, except now you're paying the entire premium on your own. You can learn about COBRA at the Department of Labor's Web site.
If you can't afford to go on COBRA, you're in good company; a recent study by the Commonwealth Fund found that only nine percent of people who are offered COBRA actually use it. Sometimes it's less expensive to buy your own insurance policy rather than going on COBRA. You can compare prices at ehealthinsurance.com.
Step 3: Get your child on SCHIP
Even if you have too much money to qualify for Medicaid, your children may qualify for SCHIP, the State Children's Health Insurance Program. Here's a state-by-state directory of SCHIP programs.
There are other government programs, too. Your entire family may qualify for insurance from a state high-risk pool if you live in a state that has one.
If you think you might quality for Medicaid, see this state-by-state Medicaid directory.
Step 4: Get help with prescription drugs
If you can't afford health insurance -- or if your insurance doesn't include good prescription drug benefits -- look for $4 generic drugs at many major supermarkets and drug stores. Also, your state may offer a discount drug program (after you click, scroll down to see Table 2). You can also check these private groups that offer prescription assistance.
HealthWell Foundation
FamilyWize discount drug card
Needy Meds
Rx Assist
Rx Hope
Chronic Disease Fund
Partnership for Prescription Assistance
The Access Project
Step 5: Find financial assistance for your particular disease
Many diseases have specific foundations that offer financial assistance.
Heart Disease: Heart Support of America
Kidney Disease: American Kidney Fund
HIV/AIDS: The Access Project
Hepatitis: The Access Project
Cancer: see this Empowered Patient for a list of services
Alpha-1 Antitrypsin Deficiency, Chronic Granulomatous Disorder, Huntington's Disease, Idiopathic Pulmonary Fibrosis, and Pulmonary Arterial Hypertension: Caring Voice Coalition
Other rare diseases: National Organization for Rare Diseases
Vision Care: EyeCare America and Vision USA
Step 6: Find free clinics
Federally funded health centers offer free care in both urban and rural areas. Put in your address here and find one near you.

Lycopene

Mark Henderson, Science Editor, in San Francisco

An antioxidant chemical found in tomatoes could be used to treat common causes of abdominal pain such as internal scarring after surgery and endometriosis, new research has suggested.
Lycopene, the bright red pigment that gives tomatoes their characteristic colour, can inhibit proteins that are linked to the formation of abnormal patches of tissue called adhesions, according to a study of cells in culture.
Though the findings are very preliminary, they hint that a diet rich in tomatoes and tomato products, or supplements containing lycopene, might be a promising way of controlling adhesions.
Adhesions are patches of scar tissue or fibrous strands that form on internal surfaces in the abdomen, often connecting two organs or parts of organs together. They are a common side effect of surgery, and they also occur in endometriosis, a condition in which tissue that normally lines the womb grows in other parts of the abdomen. These growths can cause pain, bowel obstructions, bladder problems and infertility.
Related Links
Endometriosis
Food detective: best tomatoes
Abdominal adhesions are commonly associated with tissue damage caused by free radical oxygen molecules, leading a team headed by Tarek Dbouk, of Wayne State University in Detroit, to investigate lycopene because of its antioxidant properties.
The chemical, which is particularly abundant in cooked tomato products such as ketchup and pasta sauces, is already thought to have protective effects against cardiovascular disease and some cancers.
In the study, Dr Dbouk exposed human cells to lycopene in the laboratory, and measured its effect on proteins that serve as markers for adhesion formation. Levels of these proteins were substantially reduced, by as much as 80 to 90 per cent.
Dr Dbouk told the American Society for Reproductive Medicine conference in San Francisco that the results suggest that lycopene – and tomatoes that contain it – could be useful for treating post-surgical adhesions and other conditions such as endometriosis and uterine fibroids.
“What we found in our laboratory study is that lycopene can help with the adhesions that these conditions cause,” he said. “One of the major complications of endometriosis is that it causes inflammation which induces adhesions.
“The inflammation basically causes scarring. What we did was to look at protein markers that could help us trace the activity of the abnormal cells that cause these adhesions. The lycopene worked to reduce the abnormal activity of these cells.
“This means that you would not get the adhesions, which suggests that lycopene could work to mitigate the complications and ailments of endometriosis. So, hypothetically speaking, we might be able to reduce the adhesion effects of endometriosis.”
The study does not show whether lycopene absorbed through the diet would have the same effect on real cells in the human body, but Dr Dbouk said it could be practical to get it in this way. “It is certainly possible that you could get the amount you need from your diet,” he said. “Or if the patient did not like tomatoes, you could give them the lycopene as a supplement.”

http://www.timesonline.co.uk/tol/news/uk/science/article5135497.ece

Out-of-control enzyme may trigger endometriosis

A news flash from Stephanie St. James
http://www.myspace.com/stjamesendoawareness

Out-of-control enzyme may trigger endometriosis
Scientists may be one step closer to solving the mystery behind endometriosis — what doctors say is a common health problem for women. In their latest study, scientists at the University of Liverpool in the UK have discovered what may be triggering this condition. Their findings were recently published in the journal Human Reproduction.

The telomeres enable egg cells to continue dividing
© Shutterstock


'Endometriosis occurs when cells of the inner lining of the womb are found growing outside of the uterus,' explained Dr Dharani Hapangama from the Department of Reproductive and Developmental Medicine, University of Liverpool. 'At the time of a woman's menstruation cycle these cells, called endometrial cells, are shed and can be expelled into the abdominal cavity,' he said. 'If these cells continue to live and are implanted in the pelvis and abdomen it can cause severe pain and in serious cases can lead to infertility.'

The telomerase enzyme, found in cells and the inner lining of the womb, patrols the end parts of chromosomes, called telomeres. These telomeres hold the two ends of the chromosomes together and ensure that they stay intact during cell division. The researchers found that telomerase is released by cells in the inner lining of the womb at the beginning and towards the end of the menstrual cycle in women suffering from this condition. Cancer cells also contain this enzyme, which seemingly replicates DNA sequences during cell division in chromosomes, experts say.

The lead researcher went on to say that the team found the telomere to be unusually long in women with endometriosis. 'During menstruation, telomeres normally shorten in length with each cycle of cell division until they reach a certain length at which they can no longer divide,' Dr Hapangama commented. 'The enzyme can extend the length of the telomeres so that they can continue to divide and this can happen in some special cells, such as sperm and egg cells, but not normally in cells that make up the organs of the body.'

'Women who have endometriosis express this enzyme in both the early and late stages of the menstrual cycle which means that the cells will continue to divide and lose their "focus" in supporting the establishment of a pregnancy,' he said. Due to this, the womb's lining 'may be more hostile to an early pregnancy', Dr Hapangama explained. 'The cells that are shed at this late stage in the menstrual cycle may be more "aggressive" and more able to survive and implant outside the uterus, causing pain in the pelvic or abdomen area.'

In general, endometriosis emerges in the lower region of the female pelvis causing extreme pain and discomfort. Around 50% of the cases involve the ovary, and the condition is also responsible for half of the infertility cases.

More than 88 million women worldwide are affected by endometriosis. While the condition affects around 15% of women of reproductive age, up to 4% of the cases are diagnosed in the postmenopausal period.
http://ec.europa.eu/research/headlines/news/article_08_09_18_en.html

Stephanie'>http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=6466478">Stephanie St. James talking about Endometriosis

Find Out about ARD, before you have any surgery!

September is Adhesion Related Disorder Awareness Month.

What are Adhesions?
An ADHESION is a type of scar that forms an abnormal connection between two parts of the body. Adhesions can cause severe clinical problems. For example, adhesions involving the female reproductive organs (ovaries, Fallopian tubes) can and do cause infertility, dyspareunia (painful intercourse) and debilitating pelvic pain. Adhesions involving the bowel can cause bowel obstruction or blockage. Adhesions may form elsewhere such as around the heart, spine and in the hand where they lead to other problems.
Adhesions occur in response to injury of various kinds. For example, non-surgical insults such as endometriosis, infection, chemotherapy, radiation and cancer may damage tissue and initiate ADHESIONS. By far the most common kind of ADHESION is the one that forms after surgery. ADHESIONS typically occur at the site of a surgical procedure although they may also occur elsewhere.

Dr. David Wiseman - International Adhesions Society

Please visit these site for advocacy news and general education.
International Adhesion Society

United Kingdom Adhesion Society

Adhesion Related Disorder
GynSurgery website
ARDchat.com

ARDvark Blog

EndoTimes

Education helps prevent Adhesions!

Everything you always wanted to know about menopause but were afraid (or forgot) to ask

This article features a broad array of information.
Included as issues are bone density to heavy bleeding, even how it effects your teeth.

Also included:
Signs and symptoms of perimenopause
Signs that you are in perimenopause include:
Irregular menstrual periods.
Less frequent, light menstrual periods.
Heavier menstrual periods than you are used to having.

Symptoms of menopause
Symptoms related to menopause are caused by changing or dropping hormone levels and usually end 1 or 2 years after menopause. Some women continue to have symptoms for 5 or more years afterward. Menopause symptoms include:
Hot flashes.
Sleep disturbances (insomnia).
Emotional changes, such as mood swings or irritability.
A change in sexual interest or response.
Problems with concentration and memory that are linked to sleep loss and fluctuating hormones (not a permanent sign of aging).5
Headaches.
Rapid, irregular heartbeats (heart palpitations).
Generalized itching.
Menopause caused by surgery, chemotherapy, or radiation therapy can cause more severe symptoms than usual.6 Preexisting conditions such as depression, anxiety, sleep problems, or irritability can get worse during the perimenopausal transition.

When to Call a Doctor
During perimenopause or postmenopause, call your health professional about:
Menstrual periods that are unusually heavy, irregular, or prolonged (1½ to 2 times longer than normal).
Bleeding between menstrual periods, when periods have been regular.
Renewed bleeding after having no periods for 6 months or more.
Unexplained bleeding while you are taking hormones.
Perimenopause symptoms, such as insomnia, hot flashes, or mood swings, that aren't responding to home treatment and are interfering with your sleep or daily life.
Vaginal pain or dryness that does not improve with home treatment, or you have signs of a urinary tract infection.
If you have concerns about osteoporosis risk and prevention, talk to your health professional during your next office visit.
For more information, see the topics Abnormal Vaginal Bleeding, Dysfunctional Uterine Bleeding, and Osteoporosis.

Click here for even more!

Secret to endometriosis unlocked by scientists

Scientists may have solved the riddle of a mysterious womb complaint that causes infertility and pain for millions of women in the UK.

By Daily Telegraph Reporter Last Updated: 6:47PM
BST 05 Aug 2008
Endometriosis results in patches of the womb's inner lining growing in other parts of the body.
Around two million women in the UK are affected by the condition, which can cause severe pain, heavy periods and infertility.
The precise cause remains unknown but scientists have uncovered how it may cause infertility in some sufferers.
The team at University of Liverpool have identified an enzyme that could be responsible for the condition.
Telomerase is released by cells in the inner lining of the womb during the later stages of the menstrual cycle in women affected by endometriosis.
The enzyme found in cells that divide frequently, including cancer cells.
Around two million women in the UK are affected by the condition, which can cause severe pain, heavy periods and infertility.
The precise cause remains unknown but scientists have uncovered how it may cause infertility in some sufferers.
The team at University of Liverpool have identified an enzyme that could be responsible for the condition.
Telomerase is released by cells in the inner lining of the womb during the later stages of the menstrual cycle in women affected by endometriosis.
The enzyme found in cells that divide frequently, including cancer cells.
Click here to Read the Rest

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On the Teen Scene:Endometriosis: Painful, but Treatable

by Dixie Farley
"The pain was so sharp I thought I'd ruptured my appendix, but the doctor said, no, it wasn't that. It was between my periods, so I didn't connect it with menstruation. I was 16.
"Over the next 10 years, I had more and more of these 'pain attacks,' and my periods gradually became heavier and more painful.
"When I was pregnant with my first child, I was virtually pain-free. But shortly after he was born, each month around ovulation, I went to bed in tears from horrible pain. And I bled so much during menstruation I didn't dare leave the house. I went back to the doctor. It was endometriosis."
--A woman from Des Moines, Iowa
Endometriosis is a mysterious, often painful, and disabling condition in which fragments of the lining of the uterus (womb) become embedded, or implanted, elsewhere in the body.
Of the more than 3,000 patients registered with the research program of the International Endometriosis Association in Milwaukee, 41 percent report having symptoms as teenagers. About 5 million American women and girls, some as young as 11, have endometriosis, according to the association.
"These girls have terrible pain," says Lyle Breitkopf, M.D., a gynecologist in New York City. "Typically, they come to the school nurse month after month--maybe six to eight of their 12 menstrual cycles--needing something for pain or being sent home vomiting, writhing on the floor."
For the woman from Des Moines, 25 years with endometriosis led to removal of her uterus, fallopian tubes, and ovaries a number of years ago. For many women today, new medicine and less drastic surgery reduce endometriosis symptoms and preserve reproductive organs.The Food and Drug Administration has approved several drugs to treat endometriosis and regulates medical devices, such as lasers, used in surgical treatment.
A woman who thinks she may have endometriosis should be examined by a gynecologist. The sooner treatment begins, the better it is for the patients, says Breitkopf. "When we find them at an early stage, we can arrest the condition more easily and keep after it so it doesn't progress as far."
Doctors don't know why endometriosis only strikes certain women.
Some probably inherit it, says Breitkopf. "I've seen it in sisters, including identical twins, and in grandmother-mother-daughter situations."
According to Robert Badwey, M.D., a gynecologist in suburban Washington, D.C., "For whatever reason--greater incidence, better diagnostic techniques, or both--we're much more aware of endometriosis now than even a few years ago."
What's Happening in the Body?
Normally, an increased level of hormones each month triggers the release of an egg from the ovary. Finger-like tissues on one of the fallopian tubes grasp the egg, and tiny hair-like "cilia" inside the tube transport it toward the uterus. When the egg is not fertilized, the uterine lining breaks down and is shed during menstruation.
The abnormal implants of endometriosis are not in the uterus, but they respond to hormonal changes controlling menstruation. Like the uterine lining, these fragments build tissue each month, then break down and bleed. Unlike blood from the lining, however, blood from implants outside the uterus has no way to leave the body. Instead, it is absorbed by surrounding tissue, which can be painful.
As the cycle recurs month after month, the implants may get bigger. They may seed new implants and form scar tissue and adhesions (scarring that connects one organ to another). Sometimes, a collection of blood called a sac or cyst forms. If a cyst ruptures, it often causes excruciating pain.
Symptoms vary from patient to patient. Severity of symptoms frequently has little to do with the extent of the implants. For instance, some women with just a few implants have severe pain, while some with many implants have little or no pain.
For some, pain starts before or during menstruation and gets worse as the period progresses. Others report pain at a variety of times during the month. There may be a sharp pain at ovulation when the egg, trying to move into the fallopian tube, causes a cyst on the ovary to burst. (Many women normally feel a twinge of pain at ovulation. Pain caused by a ruptured endometriosis cyst is severe.)
Patients whose implants affect the bladder or intestines often report painful urination or bowel movements and, sometimes, blood in the urine or stool.
Endometriosis sometimes causes premenstrual staining and, as the period progresses, heavy menstrual flow.
Often, endometriosis remains hidden a long time. A symptom such as pain at menstruation may not be seen as unusual, explains Mary Lou Ballweg, executive director of the Endometriosis Association.
"Perhaps a young woman is told by Mom, who had the same problems, that menstrual pain is normal," Ballweg says. "So she just lives with it and doesn't see a doctor until the symptoms become unbearable. Some young women with endometriosis have apparently normal menstrual periods for years before having discomfort and pain. Others report they've nearly always had difficult periods."
As many as 30 percent of women who report infertility problems have endometriosis.
Severe endometriosis can lead to infertility in various ways. In the ovaries, it can produce cysts that prevent the egg's release. In the fallopian tubes, implants can block the passage of the egg. Also, adhesions can fix ovaries and tubes in place so that projections on the tubes can't grasp the egg and move it into the tube. The effect of mild endometriosis on infertility is less clear.
Women with endometriosis may have a higher rate of "ectopic" pregnancy, a potentially life-threatening condition in which the fertilized egg begins to develop outside the womb.
The most common way to see whether a woman has endometriosis is by surgical examination using laparoscopy, a fairly simple procedure usually done without an overnight hospital stay. The doctor makes a tiny incision and inserts a lighted, flexible, telescope-like device called a laparoscope that allows a close look at the pelvis and internal organs. However, sometimes the implants themselves can only be seen through microscopic evaluation of biopsy specimens.
Drug Treatment
Drugs for endometriosis should not be taken by women who are, or who may be, pregnant.
The earliest drug approved to treat endometriosis was Danocrine (danazol), a synthetic steroid related to the hormone testosterone. Taken orally, in pill form, Danocrine changes endometrial tissue, shrinking and eliminating implants in some cases. Side effects include fluid retention, weight gain, and masculinizing effects such as voice change, hairiness, and reduction of breast size. Other side effects include menstrual irregularities, hot flashes, and vaginal dryness.
Other drugs, related to gonadotropin-releasing hormone (GnRH), act in a different way to decrease the hormones that make abnormal implants grow. One version is a nasal spray called Synarel (nafarelin acetate). In clinical studies, Synarel, at 400 or 800 micrograms a day (within the prescribed dosage range), was comparable to Danocrine at 800 milligrams a day (the recommended dosage) in relieving the clinical symptoms of endometriosis (such as pain) and in reducing the size of implants. Side effects include non-menstrual vaginal bleeding or ovarian cysts during the first two months of use, cessation of menstruation, hot flashes, headaches, decreased sex drive, vaginal dryness, acne, reduction in breast size, and a small loss in bone density. In clinical trials, about 10 percent of the patients experience nasal irritation from the spray.
Other drugs approved for treatment of endometriosis that are chemically related to Synarel include Lupron Depot (leuprolide acetate), a drug injected monthly into muscle, and Zoladex (goserelin acetate implant), which is injected under the skin of the upper abdomen. These drugs don't cause nasal irritation, but otherwise their side effects are similar to those of Synarel, and their effectiveness is also similar.
Women taking endometriosis drugs need to watch for problems such as difficulty breathing or chest or leg pain, which may indicate a blood clot and should be reported to the doctor immediately. Other possible severe side effects include irregular heart rhythms. Frequent checkups are needed to monitor effects such as possible thinning of the bones. A patient should immediately report any new or worsened symptoms to the doctor. However, it's normal for endometriosis symptoms to temporarily worsen when a woman begins taking medicine.
Surgery
Sometimes medicine is not enough. Surgery may be needed to remove diseased tissue or to correct misaligned organs.
One method to remove diseased tissue combines laparoscopy with laser surgery. The laser is connected to the laparoscope and positioned so that its intense light beam is directed through the laparoscope onto the tissue to destroy it. The procedure usually is done without an overnight hospital stay and requires only about a week's recovery time at home.
Recurrence rates after treatment need further study, Ballweg says.
The monthly pain and heavy menstrual periods of chronic endometriosis can be frustrating and painful, and can lead to conceiving and infertility problems. But today, with prompt diagnosis and treatment, a young woman's life can often return to normal.
Dixie Farley is a staff writer for FDA Consumer.

For more information, contact:International Endometriosis Association 8585 N. 76th PlaceMilwaukee, WI 532231-800-992-3636
Publication No. (FDA) 93-1205

March is Endometriosis Awareness Month

Endometriosis Research Center Celebrates Disease Awareness Throughout Month of March in Honor of Women and Girls Living with Painful Illness
Source: Endometriosis Research CenterMar 03, 2008 14:11:05

Mar 03, 2008 – Backed by formal legislation, the Endometriosis Research Center (ERC) is once again celebrating March as “Endometriosis Awareness Month” in honor of all those affected by the illness. Endometriosis is a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) migrates outside the uterus and implants in other areas of the body. The disorder, for which there is no absolute cure, affects over 5.5 million women and girls in the United States alone and over 70 million more worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness. A primary cause of chronic pelvic pain, female infertility and a myriad of related symptoms, Endometriosis is a leading cause of gynecologic surgery, including more than half of the 600,000 hysterectomies performed in the U.S. annually. Symptoms include pelvic pain at any point in a woman or girl's menstrual cycle, infertility, pain with sexual activity, gastrointestinal difficulties, urinary tract difficulties, fatigue, allergies, and immune system dysfunction. The disease can also implant in extrapelvic areas such as the lungs, diaphragm and in rarer cases, even locations like the brain. Recent research has also shown an elevated risk of certain cancers and autoimmune disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis, which can only be diagnosed through surgery like laparoscopy, and there is no definitive cure. Current studies indicate that genetics, immune system dysfunction or exposure to environmental toxicants may be contributing factors to disease development. Leading experts such as Robert B. Albee, Jr., MD, FACOG, ACGE and Ken Sinervo, MD, FRCSC, ACGE of the Center for Endometriosis Care, a specialty treatment center, believe multiple causative etiologies exist. The ERC maintains that Endometriosis is more than just simple "killer" cramps. “We continue to find that even now, Endometriosis remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of pain in women and teens around the globe," said Michelle E. Marvel, ERC Founder and Executive Director. "Even in 2008, we see women and girls from all around the world continuing to suffer in silence with a disease that can be potentially devastating to every aspect of their lives," she noted. The economic impact of Endometriosis is staggering: American businesses lose billions of dollars each year in lost productivity and work time because of the disease. Endometriosis knows no racial or socioeconomic barriers, and can affect women ranging from adolescence to post-menopause. It can be so painful as to render a woman or teen unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Despite the hallmark symptoms associated with the illness, the average delay in diagnosis remains an astounding nine years, 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. Many such therapies carry significantly negative and long-lasting side effects, and none offer long-term relief. A growing number of younger women are being diagnosed each year, with studies indicating that as many as 70% of teenagers with chronic pelvic pain ultimately have Endometriosis proven by laparoscopy. Other reports show that as many as 41% of patients experienced Endometriosis pain early in life as an adolescent. The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical. Many adolescents with Endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities, and sports due to significant pain and other symptoms of Endometriosis. Of even greater concern, recent studies have shown that Endometriosis may in fact have an even bigger impact on younger patients than older women: in patients under 22 years of age, the rate of disease recurrence was double that of older women (35% versus 19%). Studies have also revealed that the disease behaves differently in younger women; leading some researchers to believe it is a different form of Endometriosis altogether. “We are seeing the focus of research aimed at the infertility aspect of the disease, and treatment efforts continue to be directed towards medical therapies, rather than curative efforts for all women and girls,” said Marvel. “It is imperative that we recognize the far-reaching impact this illness continues to have on patients of all ages, not just those trying to conceive, in order to ensure that our daughters do not suffer as we have,” she said. The ERC is an established 501(c)3 non-profit organization focused on research facilitation, providing education and support, and raising awareness. The ERC strongly advocates early intervention, timely diagnosis, and efficacy of treatment for the disease. Through the ERC's efforts to raise public awareness, the organization hopes to facilitate better support of patients, increase physician understanding of the disease, and raise research funding leading to more effective treatments and ultimately, a cure. The organization has long pioneered and led efforts to increase recognition of Endometriosis among local, state and federal policymakers throughout the nation since the organization was founded in 1997. Through the ERC’s work, Congress previously passed the country's first-ever National Endometriosis Awareness Resolution, the first and only of its kind to formally recognize the disease and declare March as Endometriosis Awareness Month. The states of New York, Utah, Florida, Colorado, California, Wyoming, Pennsylvania, Michigan and others have also worked with the ERC to pass similar legislation recognizing the disease. The ERC is a completely free foundation available to anyone wishing to learn more about Endometriosis. The organization is sponsoring various educational, awareness and fundraising endeavors throughout March. For details, visit www.endocenter.org or contact the organization's Director of Fundraising, Denise Childs, at FundraisingDirector@EndoCenter.org.
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The ERC is an established 501(c)3 non-profit organization focused on disease research facilitation, providing education and support, and raising awareness about Endometriosis.
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Anguish for new victims of disgraced surgeon

By Grainne CunninghamWednesday February 13 2008

A VICTIM of Dr Michael Neary last night spoke of the "devastation" the disgraced surgeon has caused to a newly identified group of women.
Mother-of-two Caitriona Molloy, whose womb was removed after the birth of her second child Seamus, said the unnecessary surgery performed on these patients was "totally cruel".
Many of the women covered by the Porter/Clements investigation were relatively young and should have been able to look forward to having more children if they wished to do so.
Instead, women as young as 31 had both their ovaries removed, a procedure Ms Molloy described as "radical".
Menopause
"They had surgery that was totally unnecessary," she said.
As a result of having their ovaries removed, they were plunged into an early menopause, with all the physical and emotional complications that can present with that.
They were at a higher risk of osteoporosis and exposed to other negative effects, earlier and possibly for longer than the average woman.
In other cases, Dr Neary had told them that the surgery he was proposing was essential because they had endometriosis, a disease that causes the lining of the uterus to grow abnormally.
In many cases, his diagnosis was incorrect and their reproductive organs were healthy.
But Dr Neary told them that not only was the operation necessary, but that if they did not have it, the endometriosis would damage them irreparably, could become malignant and ultimately cause their death.
This was completely untrue. Endometriosis always improves at the menopause and is not a pre-malignant condition.
After the surgery, the women were told they should not take hormonal replacement therapy.
"It was totally cruel, what they were put through, they did not deserve this," Ms Molloy, of Patient Focus, said.
For years after they were subject to this surgery, many of these women continued to believe that they had nearly died.
Apart from the fear of an early death, they had to live with the knowledge that they would never again conceive or carry a child, which in itself, is a significant psychological burden for many women.
These already distressed women also had to cope with the discomfort of early menopause and were forbidden the drugs which could have helped them to endure it.
And if they had managed to come to terms with their loss and move on with their lives, they were then faced with fresh emotional turmoil when the disturbing facts about Dr Neary began to emerge.
"It was completely devastating, given the trust they put into that doctor," Ms Molloy explained. These women had trusted Dr Neary with their lives and he had responded by mutilating them unnecessarily and by presenting them with a future devoid of the joy of more children.
Sheila O'Connor of Patient Focus, which represents many of the women affected by Dr Neary, said: "They were left changed, they were different people, they will need counselling, and for a long time to come."

http://www.independent.ie/national-news/anguish-for-new-victims-of-disgraced-surgeon-1288395.html