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Issue
# 24
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November 1, 2001
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In This Issue... |
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| Note:
This newsletter is supported solely by members of the National Uterine
Fibroids Foundation. We thank you for your support and ask you to
not forward this email to nonmembers. If you know of someone who might
be interested in receiving a sample copy, please email us at: Newsletter@NUFF.org.
Beginning January 1, 2002, this monthly newsletter will be sent ONLY
to registered members of NUFF. To become a member, complete the MEMBERSHIP/DONATION
form, print it out, and mail it to NUFF with your check of $30
today. This newsletter is best viewed using Internet Explorer. |
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| Changes, changes, changes....the National
Uterine Fibroids Foundation is evolving and, as we grow as an organization,
we hope that the changes meet with your approval! This new format
for the Fibroid Tidbits...may continue to change but, for now, we
certainly hope it is more reader and web friendly than the previous
text based email. Drop us a line and let us know what YOU think! Newsletter@NUFF.org.
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Director's Perspective Okay. That does it. Per news reports on how the American public is dealing with recent events, has anybody else suddenly realized that "comfort food" has taken over your normal eating pattern and replaced it with food that will fatten you like a hog being prepped for the slaughter? The stress of recent events combined with the onset of the holiday and I fear the potential for weight gain already...yikes! Fibroid laden women do NOT need this! The struggle to keep weight off is bad enough without war, much less what might turn out to be a financially lean holiday for many this year. Exercise. I must increase my daily exercise.... Hey, that's actually not a bad idea. After all, working our bodies out every day can relieve stress, increase our "feel good" hormonal output, increase the likelihood of eating healthier, and increase our overall physical health. Exercise has a positive impact on the cardiovascular system, bone density, mental awareness, etc. The list of benefits is long. I know, I know. With an ongoing struggle with fibroids, how can you possibly exercise? With a "pressing" need to urinate every 30 minutes, how could you possibly do anything strenuous that might take you too far away from a bathroom? With bleeding that rivals a water faucet constantly in the "on" position, how can you do much more than simply make it through the day? And, with a bulk mass sitting in your abdomen and interfering with the potential ability to do even so much as a single sit up, don't you just feel like punching the next doctor who tells you that your fibroids aren't the cause of your weight gain? Been there. Experienced that. I've silently seethed with anger over the callous commentary and suggestions made by more than one physician. In the end, becoming angry at medical professionals for my condition or their ignorant commentary really didn't help me much. I doubt it will help you much either. Can we really blame physicians who spew garbage at us over our fibroid driven health when there honestly isn't a heckuva lot of research on this disease condition? Maybe instead of listening to medical professionals spew ignorant commentary based on their woefully lacking medical school education that barely even touched on fibroids (much less any treatment beyond the hysterectomy for this condition), we need to politely and proactively educate them on what fibroids mean to our overall quality of life? It might help prevent them from making ridiculous suggestions to the next patient with fibroids they see. You never know. As for exercise, well, it is important to not just give up on this. How about taking a walk around the block? Start out slow to just get moving and then, as you begin to feel better (and with your physician's guidance), how about increasing that activity to something a bit more strenuous? And, of course, taking care of those fibroids through appropriate treatment should open new doors of being able to take better care of yourself. After you've received treatment, make an effort to not allow the slower lifestyle of fibroids remain in your life. Once you're healed and feeling better, take a swim. A hike. A bicycle ride. Remember what it was like to be a kid again and just go for it! Your heart will thank you for it. Your bones will thank you for it. Your brain will thank you for it. But, most importantly, everyone around you will thank you for it too. Why? Because your emotional disposition will move in a positive direction -- and everyone benefits from that. Carla
Dionne |
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| Press Releases & the Media... Not
a Lonely Net Oct.
31 — There was a dire prediction a few years ago that the Internet
would turn users into isolationists, content to sit in front of
the glow of their computer monitors. But a new survey says that
prediction never came true. |
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Insurance
Coverage and Uterine Artery Embolization |
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Show & Tell... As some of you may recall, the week of September 10, I was in Washington, DC for a reproductive health conference. Of course, in light of the events of 9/11, the conference was canceled and I was subsequently stuck, so to speak, in DC for the week. To keep busy, I visited almost every Senate office and left a copy of my book as well as NUFF materials with an aide in each of those offices. It was very quiet in DC that week. Eerily so. Needless to say, obtaining time to speak with a Senator's aide was not a problem. No one was visiting Congress but those reluctantly stranded, like me. Shortly after my visit, a request came through for "report language" on uterine fibroids for placement in the HHS appropriations bill. I'm pretty new and extremely "green" when it comes to all things related to Congress, but with tremendous hope that the placement of special language addressing uterine fibroids might actually garner this disease some research dollars and a NIH directive to get off the dime and start looking at this health issue seriously, I gave it my best shot. Here is the text of what was submitted: Leiomyomata or "uterine fibroids" is one of the most prevalent diseases impacting women today with over 70% of all women having fibroids present in/on their uterus. Overall, about one woman in four develops symptoms severe enough to require treatment. While uterine fibroids develop in women of all races, African-American women have the highest prevalent rates and are two to three times more likely to acquire symptoms related to uterine fibroids. The majority of all women with symptomatic uterine fibroids undergo hysterectomy, leading to the highest contribution to the hysterectomy statistics in this nation. According to the Center for Disease Control (CDC), the hysterectomy has been established as the second most performed surgical procedure on women for well over two decades with only ~11% of those procedures performed due to the presence of cancer. All other hysterectomies contributing to the annual surgical rate of ~600,000 are performed due to benign disease conditions, such as uterine fibroids. The Committee recognizes the advent of endoscopic surgical procedures performed on an outpatient basis, including the hysterectomy. As such, the hysterectomy statistics currently collected and published by the CDC are potentially inaccurate and/or incomplete and may not reflect the true number of hysterectomies performed annually in this nation. The Conferees strongly encourage the CDC to develop strategies for collecting accurate and complete data on this surgical procedure, as well as other reproductive surgeries performed on an outpatient basis. The Committee also requests the CDC in cooperation with the National Center on Minority Health and Health Disparities (NCMHHD) to develop an educational and awareness campaign directed to patients and practitioners regarding the alternative treatment options available for uterine fibroids, in an effort to thereby reduce the number of hysterectomies performed for benign disease. The Committee urges NIH and its institutes to aggressively increase efforts that will lead to the development of an understanding of the physiological endocrine mechanisms that create an environment for uterine fibroids to grow and become symptomatic. The Conferees also encourage research leading to new treatments, new preventives, and new interventions (beyond the hysterectomy) leading to alternative therapies in the care and treatment of women with uterine fibroids. Specifically, the Conferees direct the NIH and its NIEHS (National Institute of Environmental and Health Sciences) and NIBIB (National Institute of Biomedical Imaging and Bioengineering) institutes to establish priority research agendas for the prevention, diagnosis, and treatment of uterine fibroids disease as well as patient rehabilitation through the following recommendations: 1)
conduct studies leading to an understanding of the cause of uterine
fibroids; The Committee appreciates the leadership role the NIEHS has taken in the evaluation and development of the Uterine Fibroid Growth study which attempts to specifically identify diet, lifestyle, and environmental factors that contribute to the growth and symptomatic development of uterine fibroids. The Committee encourages further efforts by the NIEHS in this area as well as long-term research directed towards supporting the development of alternative treatments and minimizing treatment outcome risks on the reproductive and endocrine health of women. The Committee also encourages NIEHS to collaborate with the CDC, the NCMHHD, and the NIBIB to conduct research that will lead to a better understanding of how environmental and genetic factors contribute to the cause and development of uterine fibroids. Well, we never get completely what we ask for -- but, we did gain something from this. My submitted report language was trimmed significantly and also re-directed to a division of the NIH that has not proven to be supportive of researching alternatives to hysterectomy in the past. However, the simple fact that the issue of uterine fibroids came to the Senate's attention and they chose to act on it within the appropriations bill they are proposing is reason enough for all of us to celebrate. While it has just cleared the Senate subcommittee and still has a few more hoops to jump through before it is "final", it does look as though the issue of uterine fibroids funding for research has finally made it's way onto the table of referring recommendations. The following report language can currently be found in the Senate Subcommittee Report on recommended HHS appropriations: Uterine fibroids- Uterine fibroids (leiomyomata) are one of the most prevalent diseases impacting women today, with over 70 percent of all women having fibroids present in/on their uterus. African-American women have the highest prevalence rates and are two to three times more likely to acquire symptoms related to uterine fibroids. The majority of all women with symptomatic uterine fibroids undergo a hysterectomy. The Committee urges NICHD to aggressively increase efforts that will lead to an understanding of the physiological endocrine mechanisms that allow uterine fibroids to grow and become symptomatic. The Conferees also encourage research leading to new treatments, new preventives, and new interventions (beyond the hysterectomy) in the care and treatment of women with uterine fibroids. Read
the full text of the Senate Subcommittee Report here: The report language identified above can be found within the section of the report specific to the National Institute of Child Health and Human Development (NICHD). If you are a researcher or study coordinator interested in sharing information about YOUR work in this newsletter, please contact me at: carla@NUFF.org.  |
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What's New in Research... Pathologic
features of uterine leiomyomas following uterine artery embolization.
Click here to order a copy of the published letter:
Alternative
treatment for symptomatic fibroids. Myomectomy
during cesarean section. I gotta
say -- this study made me nervous! Under controlled conditions with
highly skilled surgeons this might be acceptable. However, I'm not
so certain this one is such a good idea to float "out there"
as a general gyn practice though....definitely makes me nervous. Randomized
double-blind study evaluating the efficacy on uterine fibroids shrinkage
and on intra-operative blood loss of different length of leuprolide
acetate depot treatment before myomectomy. Outcome
and resource use associated with myomectomy. Do
leiomyomas of deep soft tissue exist? An analysis of highly differentiated
smooth muscle tumors of deep soft tissue supporting two distinct
subtypes. Effect
of gonadotropin-releasing hormone agonists on monocyte chemotactic
protein-1 production and macrophage infiltration in leiomyomatous
uterus. Pseudo-Meigs'
syndrome caused by a hydropic degenerating uterine leiomyoma with
elevated CA 125. Progesterone
and ovulation. Click here to read the abstract or order the paper from
PubMed: Laparoscopic-assisted
vaginal hysterectomy and the hyperglycemic response to surgery:
an observational study. Click here to read the full paper here: Does
mode of hysterectomy influence micturition and defecation? The short answer? Yes. But will it stop docs from recommending/performing vaginal hysterectomies at the prevalence rate they currently are? Doubtful. Click here to read the abstract or order the paper from
PubMed: Sensitivity
and specificity of the RAND/UCLA Appropriateness Method to identify
the overuse and underuse of coronary revascularization and hysterectomy. Wow. I'd give anything to know the driving politics behind this review. Somebody want to clue me in? And yes, I do believe medical politics drove this one--regardless of the study's conclusion. Click here to order these pages from PubMed:
Cost
of pelvic organ prolapse surgery in the United States. Click here to read the abstract or order the paper from
PubMed: Enterocele:
is there a histologic defect? Click here to read the abstract or order the paper from
PubMed: Is
incontinence associated with menopause? The hysterectomy
implicated in yet another study of incontinence...along with other
factors beyond simply menopause. Click here to read the abstract or order the paper from
PubMed: Post-hysterectomy
fallopian tube prolapse. Click here to order these pages from PubMed:
Vaginal,
laparoscopic, or abdominal hysterectomies for benign disorders:
immediate and early postoperative complications. Click here to read the abstract or order the paper from
PubMed: Long
term outcome following laparoscopic supracervical hysterectomy. A "must"
read for women with endometriosis considering LSH. Click here to read the abstract: Click here to read the full paper: Assessment
of laparoscopic injuries by three methods. Click here to read the abstract or order the paper from
PubMed: Prevalence
and associated factors of cancer screening: why are so many older
Mexican American women never screened? This
isn't a fibroid related paper but it caught my eye nonetheless.
A very real gap exists among citizens who do not speak English and
those in the medical community who could provide services to them.
What are we doing to bridge that gap and care for these women? Click here to read the abstract or order the paper from
PubMed: Perioperative
hypothermia and postoperative opioid requirements. Click here to read the abstract or order the paper from
PubMed: Voiding
dysfunction. From the abstract: "New
surgical techniques to identify vesical branches of the pelvic nerves
intraoperatively during radical hysterectomy have been shown to
help prevent voiding dysfunction postoperatively." Click here to read the abstract or order the paper from
PubMed: Dysfunctional
uterine bleeding: advances in diagnosis and treatment. Click here to read the abstract or order the paper from
PubMed: Sexual
response in women with spinal cord injury: neurologic pathways and
recommendations for the use of electrical stimulation. A "must
read" for researchers interested in female sexual function. Click here to read the abstract or order the paper from
PubMed: If this paper captures your attention, perhaps you'd also be interested in reading the following, published earlier this year: Sexual
arousal and orgasm in women: effects of spinal cord injury. Click here to read the abstract or order the paper from
PubMed: Challenges
in conducting multicenter clinical trials in female sexual dysfunction:
baseline differences between study populations. Click here to read the abstract or order the paper from
PubMed: The
selling of 'female sexual dysfunction'. Sigh.
I consider myself part of the "women's movement" and yet
don't agree at all with Dr. Teifer. In fact, I'm tired of psychiatry
and socialism attempting to "control" what little we know
about female sexual function. I'd like some physiological research
(finally!) into the biomechanics of female sexual function and wish
this particular researcher would sit down and zip it. Of course,
commercialism is ALWAYS of concern in medicine -- female sexual
function is hardly unique in this regard. Click here to read the abstract or order the paper from
PubMed: A
double-blind placebo-controlled study of ArginMax, a nutritional
supplement for enhancement of female sexual function.
Then
again...while we're on this topic of commercializing female sexual
function... Click here to read the abstract or order the paper from
PubMed: Sidenote:
The entire current issue of J Sex Marital Ther 2001 Oct-Dec captivated
me this month. I won't list all the papers here but do suggest it
may be worthy of perusal if you are at all interested in the study
of female sexual function. Clinical
relevance of benign endometrial cells in postmenopausal women. Click here to read the abstract or order the paper from
PubMed: Was there research overlooked for this past month which should have been listed here? Let us know by dropping us an email! Also, here's a tip on how to gain access to all of these papers without purchasing the journals at all: Call your local hospital and find out if it has a medical library. Most do, but don't publicize that fact. More than likely, if you ask you'll find you do indeed have permission to access that library and its medical references. |
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NUFF Board of Directors Meeting... |
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Uterinefibroids Yahoo Email Group... Anyone in the group can upload images to add to this file. If you have a roll of film from YOUR surgery needing development and are wondering how to get them online, be sure and ask for digital images on a CD rom when you send them in for developing. If you have paper photographs, you can still turn them into digital images ready for uploading online either using your own personal scanner OR a special scanner readily available at most photography stores and even at drugstores like Walgreens! Once you have a digital file of the image, simply follow the instructions for adding a photo found here: http://photos.groups.yahoo.com/group/uterinefibroids/lst If you are a member of the online discussion group and this link doesn't work, have you also registered with Yahoo and signed in? If not, you'll need to do so in order to access the content available on the uterinefibroids discussion group website -- including the photos. Have any tips? Share them. Full credit is given for every tip published, including your name and URL. |
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A few additional thoughts... But, this issue did hit me personally as my trip to D.C. resulted in a great deal of correspondence from Senate offices arriving at my home. I thought absolutely nothing of it until the flu bug hit my household and my kids and I became ill. Suddenly, it occurred to me that the mail coming in from D.C. made my family vulnerable to the possibility of anthrax. It also made me wonder about ALL the mail coming from the D.C. area. I noticed mail carriers wearing gloves and delivering packages at a distance from their bodies. I called the Health Department in Los Angeles and was not reassured by the lack of scientific knowledge on how anthrax is being contained -- or spread. Was/is my family at risk? Believe me, breathing became a whole lot harder this past month as I struggled to find out what no one really knows. My family is fine. Flu. Just the flu. Probably exacerbated by the stresses of events surrounding 9/11. But, in corresponding with Senator's aides over this issue during the past few weeks, it occurred to me that my stress and my family's bout with the flu was nothing compared to what the men and women in Washington, D.C. have to face each and every day as they get up and muster the strength and courage to go to work in our nation's capital. Most Congressional offices are staffed with young, idealistic, future political hopefuls who now are reassessing their goals in this life. Some are very afraid, as they never anticipated being on the frontlines of what is essentially a war zone. Some have vowed to leave D.C. after their internship and never look back. I think that while we hear the words of Congressional Senators and Representatives and see their struggle with this issue, we sometimes forget who really runs their offices and just how many men and women support these elected officials in Congress. How many vacancies will there be during the next legislative session due to this horrific bioterrorism and the fear it has generated in what is essentially an underpaid (or internship filled) staff? My personal appreciation goes out to the staff of each and every Congressional office. These individuals came to work the week of 9/11 and were there to meet with me to talk about fibroids when, I'm quite certain, they were actually wanting to just be home. No different than me. They have continued to work for all of us through this very difficult time and deserve our support and gratitude. Since mail in D.C. is a bit constrained right now, I would like to ask each of you to pen a thank you letter and send it to your local state office for your Senate or Congressional Representative telling them just how much you appreciate their staff's endeavours on all our behalf. If you want to make it fibroid related, then thank them for the appropriations report language -- but mostly just thank them for doing their jobs and let them know just how much you appreciate their efforts and their daily struggles with going to work in our nation's capital during this very difficult time. I don't know. Perhaps writing a letter or two will help you to breathe easier. It certainly helped me. Remembering to breathe, Carla
Dionne |
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NUFF Mission Goals
To
read more about our Mission Goals, visit the NUFF site at:
http://www.nuff.org/about_mission.htm |
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