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

Friday, May 02, 2014

Dr. Drew doesn’t understand your “garbage” diagnosis ~ Endometriosis and Interstitial Cystitis

Grrrrrrrrrr. All the work we do for awareness and then this schmuck comes along...

The "Loveline" cohost draws outrage for his comments on endometriosis



Dr. Drew Pinsky is a board certified internist and assistant clinical professor of psychiatry at USC, but most of us know him better as radio and cable television’s most tireless ambulance chaser. Over the years, he’s doled out a variety of less than sound and/or helpful ideas. But when he speculated recently to a “Loveline” caller about his fiancée’s endometriosis, he definitively made the case against getting medical advice from flippant talk show hosts.
As Erin Gloria Ryan first noted on Jezebel, Pinsky was fielding a call from a man who was concerned about his girlfriend’s “multitude of conditions,” including endometriosis, interstitial cystitis, lactose intolerance and what he described as “no stomach lining.” The good doctor quickly interjected before the listener could even pose his question, explaining, “These are what we call sort of functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re what we call ‘garbage bag diagnoses,’ when you can’t think of anything else, you go, ‘Eh, it’s that.’ So, it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?”
Though the caller did acknowledge that his fiancée had in fact survived abuse, let’s take a step back here and observe that he never said the woman was “preoccupied” and “visiting doctors all the time” – on the contrary, he said she almost always “refuses” to go to doctors, even when she’s “in so much pain.” But Dr. Drew had a handy explanation, stating, “Trust me, she saw lots of doctors before you.” He then went on to explain why her early abuse was causing her problems now. “When people have unexplained pain, pelvic pain, it’s called somatoform dissociation,” he said, “and the only way her body, which was suffering during those early experiences, can tell its tale of woe is with pain. And she really needs to see a trauma specialist, not a urologist. Know what I’m saying?” This was immediately segued with Pinksy’s colleague joking that an additional way someone could have unexplained pelvic pain was by having sex with the show’s guest, Alan Thicke. Charming.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is the link to the CNN contact form for Dr. Drew's show...also what I wrote. Please give them a piece of your mind. IC folks....go get him!
Dr Drews comments on endometriosis are outrageous. He is not educated in a disease that strikes more than one in ten women! Find another doctor! Chronic stage 4 endo with severe adhesions has almost killed me twice. It is real, incurable and I hope you devote air some time in spreading awareness about endometriosis to counteract  the sad stereotype that has made the burden of this horrible disease even harder. 


Wednesday, April 16, 2014

Researchers to present at the World Congress on Endometriosis in Brazil

 Updated 4 hours agoSPECIAL TO HNN PROVIDED BY MARSHALL UNIVERSITY
HUNTINGTON, W.Va. - Two investigators from the Joan C. Edwards School of Medicine at Marshall University will be traveling later this month to Sao Paolo to present their research at the World Congress on Endometriosis.
The congress is held every three years and brings together scientists, clinicians, nurses and other healthcare professionals involved in research or treatment of endometriosis a chronic, inflammatory condition that affects young women and adversely impacts their fertility and quality of life.

Dr. Nalini Santanam, a professor in the Department of Pharmacology, Physiology and Toxicology, and biomedical sciences doctoral student Kristeena Ray said they are looking forward to participating in the conference, which is being held April 30-May 3.
"Though 10 to 15 percent of young women suffer from endometriosis and almost two-thirds of these women suffer from chronic pain, the exact nature of this disease is not very well understood. My laboratory has a long-standing interest in understanding why some women get endometriosis and have pain," said Santanam. "We are very honored that our abstracts were chosen for presentation at this meeting. The most exciting part was to find out that Kristeena was selected to give an oral presentation and was one of only six investigators selected to receive the Rodolphe Maheux Travel Grant."

Saturday, March 22, 2014

New Guideline: Management of Women With Endometriosis

Peter Kovacs, MD, PhD
DisclosuresMarch 21, 2014

ESHRE Guideline: Management of Women With Endometriosis

Dunselman GA, Vermeulen N, Becker C, et al

Hum Reprod. 2014;29:400-412

Background

Endometriosis can be diagnosed when endometrial tissue is found in extrauterine locations. It is found in 10%-15% of the general population and in up to one third of the infertile population.[1] There are various theories that attempt to explain its etiology. Some cases can be explained by retrograde menstruation, but metaplasia, hormonal, inflammatory processes, and abnormal cytokine function also seem to play a role.[2]
A wide variety of symptoms may accompany endometriosis. Some women are asymptomatic, whereas others are affected by dysmenorrhea, menorrhagia, dyspareunia, chronic pelvic pain, and urinary and gastrointestinal symptoms. The symptoms typically recur in a cyclic fashion, and an exacerbation can occur around menstruation.

The diagnosis can be suspected on the basis of symptoms but is established when histologic confirmation of endometrial glands and stroma is made from a tissue biopsy sample obtained from an extrauterine location.

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/

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/

Monday, October 10, 2011

What you don't know can hurt you: Knowledge is Power in a Doctor/Patient Relationship

Meet Jennifer Lewis, a long time endo sufferer and advocate for victims of endometriosis.


What you don't know can hurt you: Knowledge is Power in a Doctor/Patient Relationship
By Jennifer Lewis | October 7, 2011


I was intimidated from the get-go. I was a 23 year old woman going on her fourth Laparoscopy for endometriosis. I had been experiencing severe pain and abnormal bleeding with and w/o my periods since I was fifteen, diagnosed with endometriosis at eighteen and already had three surgical laparoscopies to remove the endometial growths. This time the doctor wanted to try a different technique called a LUNA or uterine ablation. This procedure severs the ligaments in the uterus thus reducing pain created by cramping during menstruation. By this time I was having varying degrees of bleeding throughout the month as well as pain that did not correlate with my periods. I thought, "what the heck, maybe the fourth times’ a charm". I didn’t research the fact that LUNA’s are only of considerable benefit to women with pain DIRECTLY associated with their periods. At the time of the surgery I was in pain 75% of the time, and it was NOT only related to what by now had become unbearable menstruation. By the time I was 25 I had two more similar surgeries to relieve pain and abnormal bleeding caused by the regrowth of the endometrial tissue. I inquired on more than one occasion about a hysterectomy but was told by the heroes in white coats that I was either too young, I would regret it, menopause at my age would be ghastly, maybe I should seek therapy and learn to "live" with the pain"(that was a good one!) or that I should, as one of my FORMER GYN’s put it, "Swallow the pain medication and Buck Up". Essentially, I let my doctor be the ringmaster of the circus inside my body. I was intimidated by the number of degrees on his walls and the various snapshots of smiling new mothers and newborns; all having had complete faith in this physician to lead them down the path to a better life. Why should I think any different? I mean, who am I, Jennifer, to question a man who spent half his life learning how to practice medicine? But my gut and my instinct were pulling me in another direction; a direction that saved my life.

Only after seven surgical procedures, years on addictive narcotic medications, high doses of mind altering hormones, ER visits, catheterizations and mental anguish did I learn how to learn about being a patient. After experiencing fear and abandonment along with complete lack of faith in both the field of medicine and the doctors who practice it did I begin my true healing. Essentially, I became my own health advocate, and it changed my life.

Knowledge is power, plain and simple. Whether you are stricken with a life threatening illness or dealing with a persistent problem that affects the quality of your life you must take your health and any problems associated with it and ATTACK it with knowledge. In being your own advocate, it is essential that you approach your provider with sense of self and dignity; a competent individual who is aware of her own body. Your own research on and about the issue at hand is vital as well as your own personal ammunition; use it! As much as your physician would like to be, she/he may not be current on all of the cutting edge research and experimental trials that you may be eligible for. Go to the local University or college and research the medical section. The local hospital will also have up to date periodicals and medical journals that may contain useful information. In doing your own research, you become better able to understand your options. Only then can you make an informed consent on the treatment best suited for you. Utilize your provider as you would a consultant. This will enable a mutually effective exchange and your doctor will not only respect your interest in your own healthcare but respond to it.

It took me ten years of chasing white coats until I sat still enough to see my pattern. Be it intimidation, laziness or apathy, I had no regard for my most precious gift, my health. This is a society where we are inherently trained to entrust our healthcare in the hands of doctors. Asking for a second opinion, questioning a test result or inquiring about or expressing concerns over medications you may be taking can be difficult at best. When I was faced with the option of having my seventh surgery I began to really sit and think about my body, my goals (realistic) of the outcome of the surgery as well as the quality of my life. I was not comfortable speaking freely and easily with my current provider so I changed doctors. Instead of walking in her office uninformed, I confidently presented her with a list of questions I had, similar case studies and outcomes of the treatments and my realistic goals. I was able to weigh the pros and the cons intelligently and make an informed decision based on both my research and her professional experience. Less than two weeks later I had a total hysterectomy, something I had wanted and inquired about many times before only to be told that I could not possibly know for certain that was what I wanted because I was too young, too disillusioned or just too naïve about the consequences. Only after ten years did I find restitution in having the total hysterectomy and the ironic thing is that I was fought all that time by the doctors who proclaimed they wanted to help me. I got better when I finally decided to help myself.

Questions to ask your doctor include:

What are the benefits of doing this?
What are the risks involved?
What are my other options?
What should I do first?
What are the probable outcomes of each of these options?
What are the probable outcomes if I decide NOT to do this?
How many times have you performed/administered this drug before and what were the outcomes?

Remember, this is your body, your healthcare and your decision. Every woman has the potential to be her own powerhouse when it comes to her body, seize the opportunity or someone in a white coat will.

Jennifer Lewis
Author, Endometriosis: One Womans Journey
Freelance writer


http://hcp.obgyn.net/hysterectomy/content/article/1760982/1965908

Saturday, October 08, 2011

Endometriosis.

Niger J Med. 2011 Apr-Jun;20(2):191-9.
Endometriosis.
Okeke TC, Ikeako LC, Ezenyeaku CC.
SourceDepartment of Obstetrics & Gynaecology University of Nigeria Teaching Hospital, Enugu, Nigeria. Ubabikctochukwu@iyahoo.comendometriosis

Abstract
BACKGROUND: Endometriosis is a common mysterious and fascinating gynaecological condition with diverse clinical manifestations, highly variable and unpredictable clinical course with decreased quality of life. Despite extensive research, endometriosis is fraught with controversies.

METHODS: Review of pertinent literature on endometriosis, selected references, internet services through gynaecological search which have been critical in the understanding of this puzzling gynaecologic condition were included in the review.

RESULTS: Endometriosis most commonly afflict women in there late 20s and 30s. The classic symptom complex include dysmenorrhoea, dyspareunia, menorrhagia and infertility. About 30% of the patients are asymptomatic. The incidence of infertility amongst women suffering from endometriosis ranges from 30%-40%. The factors implicated in causing endometriosis-associated infertility are multiple and its management is shrouded in controversy, complex and imperfectly understood.

CONCLUSION: Inspite of diverse clinical manifestations, variable and unpredictable clinical course, there is a chance to improve pregnancy rates with improvement in assisted reproductive technology.

PMID:21970227[PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/21970227

Thursday, October 06, 2011

Neurocrine Wins $20M from Abbott Related to Elagolix for Endometriosis

Neurocrine Biosciences received a $20 million milestone payment from Abbott following a pre-Phase III meeting with FDA on the companies' treatment of endometriosis-related pain called elagolix. That brings the total milestone payments paid by Abbott in the third quarter of this year up to $30 million.

Last month Neurocrine received a $10 million milestone fee after Abbott started a Phase II trial to evaluate elagolix in the treatment of uterine fibroids. The firms' partnership, valued at $575 million, covers elagolix for endometriosis and all next-generation gonadotropin-releasing hormone (GnRH) antagonists for a variety of women’s and men’s health conditions.

Under the exclusive, worldwide collaboration, inked in June 2010, Abbott is responsible for all development, marketing, and commercialization costs and will be entitled to an undisclosed percentage of worldwide sales of GnRH compounds. Abbott made an up-front payment of $75 million.

Neurocrine could receive additional milestone payments of about $500 million from Abbott toward achievement of certain development, regulatory, and commercial milestones; funding for certain internal collaboration expenses; plus royalty payments on any future product sales.

http://www.genengnews.com/gen-news-highlights/neurocrine-wins-20m-from-abbott-related-to-elagolix-for-endometriosis/81245782/ 


http://www.genengnews.com/gen-news-highlights/neurocrine-wins-20m-from-abbott-related-to-elagolix-for-endometriosis/81245782/

Sunday, April 24, 2011

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/