Director's Perspective

This has probably been one of the hardest months that many of us have had to face in a very long time. I've rewritten this opening to this month's newsletter about a dozen times and still find that I can't escape, no matter how hard I try, September 11. I want to move on. Don't want to dwell. Can't seem to 'cuz it's really not over yet. Probably won't be for quite some time.

And, I'm very worried about chemicals. Chemicals that may not kill us -- but present us with new autoimmune diseases or exacerbate those we already have potential for acquiring. I don't want the population of women with symptomatic uterine fibroids to go from 1 in 4 to 4 in 4 -- but it has crossed my mind as a potential. Endocrine disrupters are already abundant in our environment and wreaking havoc on our health. We don't need more. We can't handle those we already have. I feel at a complete loss as to what to think, or say, or do about any of this. Anyone else feel like they're stumbling in the dark on this issue and rambling incoherently from time to time? (Okay, I'll concede the possibility of it "just being me.")

However, the feeling of being "out of control" on this issue is, in an odd way, very similar to the feelings of trying to deal with fibroids that are "out of control." How many women try just about everything to avoid surgical intervention? With little to no success? Try a lesser invasive option, such as medical therapy, with limited success? Try a slightly more invasive therapy, such as UAE or myolysis or laparoscopy/hysteroscopy, with limited success? Go for all out war and just annihilate the stupid fibroids -- along with the uterus and maybe the cervix and ovaries via hysterectomy -- and then stand up shouting to others "SUCCESS!" (Or, perhaps, you believe in simply going straight to war and bypassing all other options, regardless of how often those seem to also bring on "SUCCESS" to those who travel down those paths of fibroid negotiation?)

But, at what cost? Is there a personal health "cost" to simply jumping straight to the most destructive and invasive method of treatment available? Yes, I do think so. Sometimes, however, we just don't care. We want to wage war to rid ourselves of this disease beast that's wreaking havoc on our lives. We're tired, upset, angry, distraught, sick to our stomachs (and minds) of dealing with the impact this has had on our lives and we just want to go straight to "first strike" and wipe it out of our bodies. We'll deal with the consequences of our actions later and worry about the peripheral damage needing repair as it becomes apparent.

Any of this sound familiar?

Fighting disease is very much like fighting a war. Do we "negotiate" our way to better health through research and development of treatment options which are non or lesser invasive? Or, simply wage an immediate campaign of all out destructive battle on our bodies by "removing it all"? In the case of uterine fibroids, gynecologists have been waging all out war on women's bodies for well over 150 years and it hasn't stopped the new troops from showing up in full force, year after year. Maybe it's time to stop this health "war" against women's bodies and negotiate our way to better health through appropriate research. Just maybe.

Carla Dionne

Footnote: On a much lighter sidenote and completely unrelated to fibroids--but not so unrelated to the stresses we've all been under lately--a little bit of laughter may be very much needed at this time. To lighten your burden just for a moment, perhaps you'll enjoy this website as much as I did: The Institute of Official Cheer.

Lynn Payer Dies at 56; Wrote of Culture and Medicine
By WOLFGANG SAXON
NY Times
September 24, 2001

Lynn Payer, a science writer and medical journalist best known for her books about the impact of culture on medical care, died Saturday at Calvary Hospice in the Bronx. She was 56 and lived in Manhattan.

Read the rest here (you'll need a NY Times account before this link will work--it's free--also, this link may only be good until Oct 1 as "free"):
http://www.nytimes.com/2001/09/24/
obituaries/24PAYE.html?searchpv=past7days

Another link:
http://www.latimes.com/news/local/la-000076867sep25.story

In case you're wondering why I would include the obit of this woman, the answer is simple. It has to do with a book she published back in 1987: "How to Avoid a Hysterectomy: an indispensable guide to exploring all your options--before you consent to a hysterectomy."

Hysterectomy, Early Menopause Linked to Parkinson's Disease

WESTPORT, CT (Reuters Health) Sept 26 - Early loss of endogenous estrogen may increase the risk of Parkinson's disease, researchers from the Mayo Clinic, Rochester, Minnesota, report in the September issue of Movement Disorders.

Click here for the Full Story (you'll need a Medscape account--it's free--before this link will work):
http://diabetes.medscape.com/reuters/
prof/2001/09/09.27/20010926epid005.html

Unfortunately, the current issue of Movement Disorders is not indexed yet. Click here to read/order the Movement Disorders paper identified in this story (once it does become available):
http://www.interscience.wiley.com/jpages/0885-3185/

Headache Impact Test

With so much discussion on the uterinefibroids message board this past week focused on headaches, it would seem that some of us could stand to take this "Headache Impact Test" and print it out to give to our docs. Words of caution when visiting this website:

1. Nowhere does this website disclose its relationship to any pharmaceutical. But, there is a relationship. Most definitely. Following the trail of who owns what and who has input on what, it was difficult -- but not impossible -- to discern the pharmaceutical ties to this test. Here's a shortcut for you:
http://www.health-news.co.uk/dsp_loggedout_story.cfm?FORMStoryID=53072

IMNSHO, amIhealthy.com needs to disclose this information directly on the website where this test is located.

2. Anemia, or excessive blood loss resulting in lowered hemoglobin levels (and less oxygen carried to the brain), is NOT identified in this test as a possible cause of headaches (you'll see what I mean when you complete the test). Maybe I'm out to lunch here, but I definitely question this omission.

Click here to Take the Test:
http://www.amihealthy.com/headachetest/index.asp

Show & Tell...

Uterine Fibroid Growth Study at NIEHS

Way back in February of this year, six women with uterine fibroids from all across the U.S. had the pleasure of traveling to North Carolina -- with the end goal of sharing what it's like to be a woman with fibroids with researchers at the National Institute of Environmental Health Sciences. In return, we were allowed to review and offer our comments and suggestions into the Uterine Fibroid Growth Study which in August 2001 began enrolling patients. Carla Dionne (CA), Marsha Weaver (FL), Leonie Finkel (NJ), Eddie Murphy (CA), Tawanda Queen (MD), and Ronda Fowler (NY) all were empowered to speak up and share their perspective in a way that, we hope, helped to shape the research that a terrific team at NIEHS had already worked so hard towards on all of our behalf. Special thanks to Dr. Barbara Davis for allowing us this opportunity for inclusion.

Because I continue to receive requests for this information, here it is, once again. The contact information for women living in North Carolina who might be interested/eligible to enroll in this study (please share this info with any woman with fibroids living in NC!):

Ania Kowalik
(919)-966-5287
Ania_Kowalik@med.unc.edu
CB#7570, UNC-Chapel Hill
Chapel Hill, NC 27599-7570

To read more about this study:
http://www.niehs.nih.gov/dert/council/2001/wmnshlth.htm

What's New in Research...

The Value of Providing Quality-of-Life InformationTo Managed Care Decision Makers
Crawford BK, Dukes EM, Evans CJ
Drug Benefit Trends 13(7):45-52, 2001

This article explores how decision makers view quality-of-life (QoL) information; in particular, the current and future use of such information, the usefulness and understanding of several types of QoL instruments, and the perceived weaknesses and strengths of QoL research.

Click here to read the full text on Medscape (you'll need a Medscape account--it's free--before this link will work):
http://www.medscape.com/SCP/DBT/2001/v13.n07/dbt1307.06.craw/pnt-dbt1307.06.craw.html

Uterine fibroid embolization compared with myomectomy
McLucas B, Adler L
Int J Gynaecol Obstet 2001 Sep;74(3):297-9

No abstract available. Don't even get me started on this paper because the ranting won't have an end...

Click here to order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11543757&dopt=Abstract

The vascular impact of uterine artery embolization: prospective sonographic assessment of ovarian arterial circulation
Ryu RK, Chrisman HB, Omary RA, Miljkovic S, Nemcek AA Jr, Saker MB, Resnick S, Carr J, Vogelzang RL
J Vasc Interv Radiol 2001 Sep;12(9):1071-4

Does nontarget embolization of the ovary occur during routine UAE? What impact might this have on fertility? What impact might this have in regard to the health of women who experience premature menopause after they undergo UAE? Looks like we need more research...

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11535770&dopt=Abstract

Intraarterial lidocaine for pain control after uterine artery embolization for leiomyomata
Keyoung JA, Levy EB, Roth AR, Gomez-Jorge J, Chang TC, Spies JB
J Vasc Interv Radiol 2001 Sep;12(9):1065-9

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11535769&dopt=Abstract

Initial experience with use of tris-acryl gelatin microspheres for uterine artery embolization for leiomyomata
Spies JB, Benenati JF, Worthington-Kirsch RL, Pelage JP
J Vasc Interv Radiol 2001 Sep;12(9):1059-63

AKA Embospheres and the Phase I clinical results through 6 months post UAE.

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11535768&dopt=Abstract

Read the press release just sent out by BioSphere on this:
http://www.biospheremed.com/SEP2501.html

Reporting standards for uterine artery embolization for the treatment of uterine leiomyomata
Goodwin SC, Bonilla SM, Sacks D, Reed RA, Spies JB, Landow WJ, Worthington-Kirsch RL
J Vasc Interv Radiol 2001 Sep;12(9):1011-20

No abstract available. However, this is still a "must read" document for all clinician's referring women for UAE, performing UAE, and/or patients with an interest in just how THEIR outcome may (or, perhaps, SHOULD) be followed post UAE -- particularly if they are part of the Fibroid Registry.

Click here to order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11535763&dopt=Abstract

Magnesium sulfate does not reduce postoperative analgesic requirements
Ko SH, Lim HR, Kim DC, Han YJ, Choe H, Song HS
Anesthesiology 2001 Sep;95(3):640-6

Gee, if there's so little pain associated with the hysterectomy, why the need for this type of research?

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11575536&dopt=Abstract

Selective postoperative inhibition of gastrointestinal opioid receptors
Taguchi A, Sharma N, Saleem RM, Sessler DI, Carpenter RL, Seyedsadr M, Kurz A
N Engl J Med 2001 Sep 27;345(13):935-40

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11575284&dopt=Abstract

And, the media machine is not far behind on this drug...

Pill May Help Abdominal Healing
September 26, 2001
By Associated Press BOSTON -- A pill that blocks the ill effects of painkillers on the digestive system could speed recovery following abdominal surgery, allowing patients to be discharged earlier.

Click here to read the full story:
http://www.latimes.com/news/nationworld/
wire/sns-ap-pain-pill0926sep26.story

Symptom experience in women after hysterectomy
Kim KH, Lee KA
J Obstet Gynecol Neonatal Nurs 2001 Sep-Oct;30(5):472-80

Interesting review of the literature as it relates the hysterectomy to post-operative symptoms. Had a hysterectomy and suddenly feeling like you are not getting enough sleep? You may not be alone...

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11572527&dopt=Abstract

The general health in women suffering from gynaecological disorders is improved by means of hysterectomy
Rannestad T, Eikeland OJ, Helland H, Qvarnstrom U
Scand J Caring Sci 2001 Sep;15(3):264-270

Good grief. 12 months is considered a "long-term" study of hysterectomy impact? Give me a break! Only goes to show how little we truly follow women after a treatment such as hysterectomy and how ignorant we really are of true long term outcome. I have one word for this paper: blech.

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11564235&dopt=Abstract

Basically, a rehash of the following (and I still say "blech"):

Are the physiologically and psychosocially based symptoms in women suffering from gynecological disorders alleviated by means of hysterectomy?
Rannestad T, Eikeland OJ, Helland H, Qvarnstrom U
J Womens Health Gend Based Med 2001 Jul-Aug;10(6):579-87

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11559455&dopt=Abstract

And, let's not overlook this final one. How many ways and in how many journals can a singular piece of less that stellar research see itself reproduced in a given year? These guys are going for a record...

The quality of life in women suffering from gynecological disorders is improved by means of hysterectomy. Absolute and relative differences between pre- and postoperative measures.
Rannestad T, Eikeland OJ, Helland H, Qvarnstrom U
Acta Obstet Gynecol Scand 2001 Jan;80(1):46-51

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11167188&dopt=Abstract

Borders on a propaganda campaign, if you ask me. This is NOT long-term research. Not in MY book anyway. This a 4-person campaign to get women to buy into the hysterectomy based on short-term symptom relief. Been beat to death about six ways from Sunday*. Why repeat it (with slight variation on the theme) and then publish the results over and over again? Motivation? This one got me raising MY eyebrows...but also had me wondering why in the world the Journal of Women's Health and Gender Based Medicine didn't ask more questions before publishing this hash. Surely THEY consider a long-term study to be one a wee bit more than 12 months...don't they? Could we, by any chance, agree that "long-term" perhaps BEGINS at around 5 years worth of data but maybe extends itself to 20 or more years? Please?!!!

* "... beat six ways from Sunday..." a phrase of Roman origin deriving from the practice of doling out daily beatings, from Monday through Saturday, on the person who showed up last for Sunday services. Seemed like an appropriate phrase befitting of this research. Sorry.

Hysterectomy for nonmalignant conditions
Sharts-Hopko NC
Am J Nurs 2001 Sep;101(9):32-40; quiz 40-1

No abstract available.

Click here to order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11559984&dopt=Abstract

Complications of hysterectomy
Quinn M
Obstet Gynecol 2001 Sep;98(3):518-9

Letter. You gotta read this one! Can it get any worse than doctors arguing over which type of hyst is "better" for women? Particularly without relevant long term research on any specific type of hyst? (See: Management of Uterine Fibroids/Evidence Report/Technology Assessment: Number 34. BTW, anybody "out there" have a clue as to when we can expect the published "Full Report" from this study completed in January 2001? January 2002? 2003? Anybody?)

Click here to order these pages from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11547788&dopt=Abstract

Oh, and don't forget to read the rebuttal. It's a beaut. This argument brought to you by gynecologists in the UK.

Magnetic resonance imaging and transvaginal ultrasonography for the diagnosis of adenomyosis
Dueholm M, Lundorf E, Hansen ES, Sorensen JS, Ledertoug S, Olesen F
Fertil Steril 2001 Sep;76(3):588-94

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11532486&dopt=Abstract

Soy product intake and premenopausal hysterectomy in a follow-up study of Japanese women
Nagata C, Takatsuka N, Kawakami N, Shimizu H
Eur J Clin Nutr 2001 Sep;55(9):773-7

The question of whether or not to increase or decrease soy intake gets asked at least once a week via our info@nuff.org email address. Heck, I don't know! This study showed positive benefit...but others haven't. Definitely more research needed!

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11528492&dopt=Abstract

Laparoscopic hysterectomy in obese women: a clinical prospective study
Holub Z, Jabor A, Kliment L, Fischlova D, Wagnerova M
Eur J Obstet Gynecol Reprod Biol 2001 Sep;98(1):77-82

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11516804&dopt=Abstract

Fast track hysterectomy
Moller C, Kehlet H, Friland SG, Schouenborg LO, Lund C, Ottesen B
Eur J Obstet Gynecol Reprod Biol 2001 Sep;98(1):18-22

Absolutely no comment. Well, maybe one. Ugh.

Click here to order these pages from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11516794&dopt=Abstract

Decisions about treatment: interpretations of two measures of control by women having a hysterectomy
Entwistle VA, Skea ZC, O'Donnell MT
Soc Sci Med 2001 Sep;53(6):721-32

A "must" read for clinicians.

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11511048&dopt=Abstract

Hydrothorax: an unexpected complication after laparoscopic myomectomy
Kanno T, Yoshikawa D, Tomioka A, Kamijyo T, Yamada K, Goto F
Br J Anaesth 2001 Sep;87(3):507-9

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11517142&dopt=Abstract

An intranodal morcellation technique employing loop electrosurgical excision procedure for large prolapsed pedunculated myomas
Kanaoka Y, Hirai K, Ishiko O, Ogita S
Oncol Rep 2001 Sep-Oct;8(5):1149-51

Incredible. Just how does a 28 year old woman grow a 13 cm submucosal fibroid and not get appropriate treatment before it gets this big and prolapses? Sigh. That's not the question being asked in this paper but one I'd certainly like to hear the answer to...directly from the patient, if at all possible...

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11496333&dopt=Abstract

Prevention of postoperative nausea and vomiting after laparoscopic gynaecological surgery. Combined antiemetic treatment with tropisetron and metoclopramide vs. metoclopramide alone.
Papadimitriou L, Livanios S, Katsaros G, Hassiakos D, Koussi T, Demesticha T
Eur J Anaesthesiol 2001 Sep;18(9):615-9

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11553257&dopt=Abstract

Analysis of the expression of estrogen and progesteron receptors, and of PCNA and Ki67 proliferation antigens, in uterine myomata cells in relation to the phase of the menstrual cycle.
Zaslawski R, Surowiak P, Dziegiel P, Pretnik L, Zabel M
Med Sci Monit 2001 Sep-Oct;7(5):908-13

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11535933&dopt=Abstract

Reduction of postsurgical adhesions with intergel(R) adhesion prevention solution: a multicenter study of safety and efficacy after conservative gynecologic surgery(1).
Johns DB, Keyport GM, Hoehler F, diZerega GS
Fertil Steril 2001 Sep;76(3):595-604

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11532487&dopt=Abstract

Reduction of Post-surgical Adhesions With Ferric Hyaluronate Gel: A European Study
Lundorff P, van Geldorp H, Tronstad SE, Lalos O, Larsson B, Johns DB, diZerega GS
Hum Reprod. 2001;16:1982-1988

Click here to read the abstract or order the paper from PubMed:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=11527909&dopt=Abstract

The Views of Ovarian Cancer Survivors on Its Cause, Prevention, and Recurrence
Stewart DE, Duff S, Wong F, Melancon C, Cheung AM,
Medscape Women's Health 6(5), 2001

Interesting paper on personal views of women with ovarian cancer. Worth reading to see how and where you fit with your views on uterine fibroids. I wonder, do men think this way about cancer? If not, why not? Or rather, what are the differences in how men view and personally ascribe disease vs. women?

Click here to read the paper from Medscape:
http://oncology.medscape.com/Medscape/WomensHealth
/journal/2001/v06.n05/wh0911.stew/mig-pnt-wh0911.stew.html

Uterinefibroids Yahoo Email Group...

It's all about growth!

The good news is...women and researchers are finding the Yahoo!Groups Uterinefibroids email list group and joining in droves and our membership is up to 1,250 now. About a dozen new members join each day while 4-6 leave. Hopefully those who are leaving are doing so because they've been helped and want to get on with their lives!

However, we do know that some are leaving because of the bad news...more members means MORE EMAIL! While the discussion and support that occurs on this list group is incredible, sometimes the sheer volume of individual email can be overwhelming. Everyone can help out by following a few simple guidelines:

1. consider posting those short words of encouragement offline and directly to the intended party
2. limit your own email to no more than 3 meaningful posts with commentary or suggestions per day (I know that sometimes this is hard to do -- but consider combining email responses to several participants into 1 email
3. always change the subject line to reflect the content of YOUR email post

What else can you do?

If the volume of individual email is too much, change your account preferences to either "Daily Digest" or "No Email". These choices will cut down the number of email you receive daily, significantly. To make this change:

1. Go to: http://groups.yahoo.com/group/uterinefibroids

2. Sign in.

3. Check the right side of the webpage for the link to "Edit My Membership" and click on it.

4. Choose a new method of "Message Delivery" and then click the "Save Changes" button.

Going On Vacation?

Instead of unsubscribing, why not simply set your account to "No Email." This will save you the hassle of trying to figure out how to REsubscribe once you return and keep your account active and open.

Bouncing Email...

If you've registered under a Yahoo, Hotmail, Juno, or any other "free" email account address, you might find that you suddenly stop receiving email from this list group altogether. Why? Because the volume of email generated from this group is simply too much for the amount of disk storage space you've been allocated to use on these free email accounts. Generally, you are not unsubscribed from the uterinefibroids group unless we receive notification from Yahoo that your account is "unknown" or "disabled" BUT if your account starts to "bounce" email because your Inbox is always full, your uterinefibroids account will be set to "No Email."

A few additional thoughts...

While visiting the National Museum of Women in the Arts a few weeks back, and running out of time before my flight home, I almost passed up the opportunity to view the works on display on the fourth floor -- which is primarily comprised of an art research library. But, since I was there and wasn't sure when I would be able to visit again, I decided to take a few quick moments to go up the extra flight anyway. The moment the elevator doors opened, my mouth dropped. Awestruck. Before me were two paintings by Grandma Moses ("Life is what we make it, always has been, always will be."). Just hanging there. I've only seen these paintings in magazines (and on cards, dishes, etc.) and I have to tell you -- it's just not the same.

Going the extra distance (even if it was only 1 floor!) has its rewards. No doubt about it. Time and again I've learned that pushing myself just a little beyond what others would consider "enough" has proven to bring rich rewards, self satisfaction, and sheer joy in the effort and knowledge it brought me. It was a simple thing to take the elevator up another flight. But, oh the reward.

I wish it were that simple with evaluating the healthcare choices that lay before each of us. We read, research, read some more, ask questions, discuss our options with others, scratch our heads, read some more, but when is any of it "enough"? Since research on uterine fibroids is sparse and there is little data that would make our decision an easy one, our symptoms seem to be in control and far too often dictate when "enough is enough."

We're lucky if we get a bit of a head start on doing the research before we reach the point of begging for a treatment--any treatment. Lucky. Lucky enough to then be able to intelligently choose a crappy treatment choice from the menu of crappy treatment choices. Is this medicine at its finest, or what? Sigh. (I know there are many dedicated doctors trying to help us out -- but honestly, I haven't met one yet who believes the choices we have are truly terrific.)

I want to climb that extra flight of stairs and find the most incredible treatment option ever devised. A treatment option that is noninvasive, without risks, and so incredibly simple that it takes your breath away when those doors of knowledge open. Don't you? Where is our Grandma Moses of Medicine when we need her? (Probably still awaiting funding from the NIH that will never come...if their past history is any record to gauge them by, that is...).

Trying to remember to breathe. It's been hard this month. I picked up a CD at the Museum store before leaving D.C. that has helped me a great deal these past couple of weeks and thought I would share it with you. It opens with Braham's Lullaby -- a lullaby that I used to "sing" to my babies when they were just infants. Hearing it in the museum, incredible memories of cradling each of my children while nursing them and singing to them gently flooded every pore in my body. Okay, so I'm a sentimental slob easily moved. So what? This CD brought me peace, perhaps it will you too:

Celtic Lullabies, Dreaming for Little Souls

This CD is Christian music -- very soothing melodies and instrumentation, but the lyrics are strictly Christian. It's not my intent to present music of any one given faith, but rather, that which is melodic and soothing in a way that helps me to breathe and relax. Please feel free to send me YOUR CD suggestions and I'll be happy to include them in future issues of this newsletter.

Can we collectively take a few deep breaths and try to remember to do so every day? Please. I'll try my best -- if you will too.

Peace to you,

Carla Dionne
Executive Director
National Uterine Fibroids Foundation
carla@NUFF.org
(805) 482-2698
1 (877) 553-NUFF
Author, "Sex, Lies, and the Truth About Uterine Fibroids"

"Never doubt that a small group of thoughtful committed citizens can change the world. Indeed it's the only thing that ever has." Margaret Mead

NUFF Mission Goals

The National Uterine Fibroids Foundation is a nonprofit public charity dedicated to the following five goals:

1. To provide information to the public about the diagnosis of, and treatment options for, uterine fibroids and related conditions;
2. To advocate for the rights of all women to maintain independent choice in the matter of deciding upon treatment options;
3. To facilitate research;
4. To promote alternatives to hysterectomy in an effort to reduce the number of unnecessary hysterectomies performed;
5. To provide support to internet-developed women's health groups.

To read more about our Mission Goals, visit the NUFF site at: http://www.nuff.org/about_mission.htm

Do not "Reply" to this email. Send suggestions and comments to: Newsletter@NUFF.org

The Fibroid Tidbits... is (c) 2000-2001 National Uterine Fibroids Foundation. All Rights Reserved. No part of this Newsletter may be reproduced in whole or in part without written permission.

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