Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 GlitterGirl69 wrote: > It sounds pretty risky to me and the idea of having that stuff in me > scares the hell out of me. I repeat the following excerpt from > http://www.uterinefibroidembolization.net/facts.html : > > The Following Adverse Effects Have Been Reported In Medical Publications: The problem with an adverse effects list such as this one put out by HERS, is that it doesn't even begin to address how often any one of these items actually occurs (and the range is 1 in 10,000 or more to 1 in 10 -- but how do you know which items are truly of greatest risk or any risk at all, depending on your own individual fibroid situation?) AND it presents the information in such a way as to deliberately scare women away from the procedure. Not inform objectively. Scare. In addition, I know of no treatment option for uterine fibroids which does not have its own lengthy list, very much like this one for UAE, of potential negative outcome. Ask yourself this: where on the HERS website is the informed consent list of adverse effects reported in medical publications for myomectomy? When you find it, let me know. Because it goes to the heart of taking objective responsibility for educating women on the issue of uterine fibroids and their reproductive healthcare. -- Carla Dionne Executive Director National Uterine Fibroids Foundation 1 (877) 553-NUFF mailto:carla@... http://www.NUFF.org http://groups.yahoo.com/group/uterinefibroids Author, " Sex, Lies, and the Truth About Uterine Fibroids " Questions are the window of opportunity. Sometimes, just sometimes, answers allow our souls to see beyond the shade of darkness and let the sunshine in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 I read those points from that uterinefibroidembolization website just about a week before my UAE in Nov. It concerned me a little bit, but I also read about all the side effects of hysterectomy. I think if you do your homework, research, etc. about your fibroid condition, you should do what " you " think is right for you. That is what I did. The only thing that concerned me a little was the particles they use for the embo, but I think I read that those have been used very successfully for a long time. There are risks with any medical procedure (simple or complex). I myself had very heavy bleeding/clotting/long periods and was fed up with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 In a message dated 1/4/03 5:41:55 PM Eastern Standard Time, MLic975220@... writes: << I also read about all the side effects of hysterectomy. >> Is there a site I can go to to read about hysterectomy and/or myomectomy side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Personally, I've found most of our options pretty scary. I've chosen to have a myo rather than UAE due to the size of my fibroid but the list of possible complications of a myo isn't much better, this is major surgery after all: emergency hysterectomy, hemorrhaging (potentially fatal), complications of anesthesia (again, potentially fatal), blood clots (yet again, potentially fatal), infection, uterine adhesions (big possibility there), loss of fertility due to scarring, a 4-6 week recovery and possibility of recurrence and having to go through it all again. Did I miss anything? Plus I've been on Lupron for 4 months pre-myo and before taking it, read about possible side effects of that as well. Of course, I could just do nothing. That would bring the list of possible complications down to blood clots, specifically DVT, bladder damage (my fibroid is pressed against my bladder) which can also result in kidney damage, crushed intestines, impossible/painful sex, and infertility. It's just appalling that a disease which strikes maybe as much as 50% of women has had so little research done and so few options for us to choose from. They'll probably find a cure for male pattern baldness before they find a cure for fibroids. DD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 I am sure that the HERS foundation will be happy to know that they have been able to scare you away from UAE as that is one of their agendas. They feel that myomectomy is the ONLY option for fibroids. Did you see any kind of balance in their website at all? I haven't. All they essentially say is Hysterectomy and UAE = bad, Myomectomy = good. They are just as bad as the doctors who promote hyst as the ONLY option. This group is about informing women of ALL options in fibroid treatment. Whenever I see such one sided crap I know that I am not reading the truth. > First, I would like to say that I hope that everyone who has chosen UAE is doing well and finding a great amount of relief since their procedure. I give you all a lot of credit for being so brave as to have this procedure...HOWEVER...I for one can say that after reading all of the pros and cons on UAE, UAE is DEFINITELY off my list of possibilities. There is no way I am going to even consider it; I have EXTREMELY BAD BLEEDING and I still will not consider even a remote chance of having this procedure done. I think I will just take my chances on other procedures and think that I would rather bleed than to have this done. It sounds pretty risky to me and the idea of having that stuff in me scares the hell out of me. I repeat the following excerpt from http://www.uterinefibroidembolization.net/facts.html : > > The Following Adverse Effects Have Been Reported In Medical Publications: > a.. Death - from embolism, or septicemia (the presence of pus- forming or other pathogenic organisms, or their toxins, in the blood or tissues) resulting in multiple organ failure > > > b.. Infection - from tissue death of fibroids, leading to endometritis (infection of the uterus) resulting in lengthy hospitalization for administration of intravenous antibiotics > > > c.. Misembolization - polyvinyl alcohol (PVA) particles flow or drift into organs or tissues where they were not intended to be, causing damage to other organs or other parts of the body > > > d.. Ovarian damage - resulting from PVA migrating to the ovaries > > > e.. Loss of ovarian function > > > f.. Infertility - loss of ability to conceive > > > g.. Loss of orgasm > > > h.. Failure of embolization surgery - continued fibroid growth, regrowth within four months > > > i.. Menopause - iatrogenic, abnormal, cessation of menstruation and follicle stimulating hormones elevated to menopausal levels > > > j.. Post-Embolization Syndrome (PES) - characterized by acute and/or chronic pain, temperatures of up to 102 degrees, malaise, nausea, vomiting and severe night sweats > > > k.. Foul vaginal odor - coming from infected, necrotic tissue which remains inside the uterus > > > l.. Hysterectomy - due to infection, pain or failure of embolization > > > m.. Pain - severe, persistent pain, resulting in the need for morphine or synthetic narcotics > > > n.. Hematoma - blood clot at the incision site > > > o.. Vaginal discharge - containing pus and blood > > > p.. Bleeding from incision site > > > q.. Bleeding from vagina > > > r.. Fibroid expulsion - fibroids pushing out through the vagina > > > s.. Unsuccessful fibroid expulsion - fibroid trapped in the cervix causing infection requiring surgical removal > > > t.. Life threatening allergic reaction to the contrast material > > > u.. Uterine adhesions Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 In a message dated 1/4/2003 11:23:24 AM US Mountain Standard Time, wildflowers2@... writes: > It's just appalling that a disease which strikes maybe as much as 50% of > women has had so little research done and so few options for us to choose > from. Sounds like a good topic for Oprah ;-) Becca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Glittergirl, I looked at the website. The first sentence under the heading of 'facts' is an outright LIE so I didn't bother to waste my time reading further. I quote " Unterine artery Embolization(UAE), also called Uterine Fibroid Embolization(UFE), is an experimental procedure currently being promoted as an alternative to hysterectomy or myomectomy as a treatment for fibroids. " UAE is NOT experimental and hasn't been for years. When an article starts out with lies, I am wise enough to take what follows with a grain of salt. I don't understand why the HERS Foundation is so set against UAE. It has helped many women gain relieve from fibroids without undergoing invasive procedures or face the risk of having their uterus or ovaries removed by an overzealous doctor. It's true all surgical procedures have risks but it is important to look at the statistics. Facts and figures don't lie. A comparasion of stats for the various options is a good place to start. It appears that this website has frightened you into not considering UAE. We all have to choose our own paths but please don't be afraid because of what you've read at one site. There are many good website by doctors and universities which address UAE that you may find more informative. Below is one of the best sites that I've come across. http://www.fibroidoptions.com/ If you would like to here first hand about the UAE procedure, then please e-mail me direct and I will be more than happy to tell you the details of my UAE. You can also get information and read other people's accounts at the embo website: embo Kathy Z (3 weeks post-UAE and feeling fine!) " Knowledge is power " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 > Glittergirl, > > I looked at the website. The first sentence under the > heading of 'facts' is an outright LIE so I didn't > bother to waste my time reading further. I quote " > Unterine artery Embolization(UAE), also called Uterine > Fibroid Embolization(UFE), is an experimental > procedure currently being promoted as an alternative > to hysterectomy or myomectomy as a treatment for > fibroids. " Actually, that statement is not an out right lie. Most insurance companies still consider it experimental and several institutions, I believe Duke University is one, is still doing research on the long term affects of UAE. I am not considering it because of the research I have done and for myself, I am not comfortable with a procedure no one can tell what the out come of having those pellets in your system might be in ten years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Those " pellets " have been in use in other procedures for many years without adverse effects. > > Glittergirl, > > > > I looked at the website. The first sentence under the > > heading of 'facts' is an outright LIE so I didn't > > bother to waste my time reading further. I quote " > > Unterine artery Embolization(UAE), also called Uterine > > Fibroid Embolization(UFE), is an experimental > > procedure currently being promoted as an alternative > > to hysterectomy or myomectomy as a treatment for > > fibroids. " > > Actually, that statement is not an out right lie. Most insurance > companies still consider it experimental and several institutions, I > believe Duke University is one, is still doing research on the long > term affects of UAE. I am not considering it because of the research > I have done and for myself, I am not comfortable with a procedure no > one can tell what the out come of having those pellets in your system > might be in ten years. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Very True Of course male pattern baldness is an epidemic (ha ha) --- DD Amasa wrote: > It's just appalling that a disease which strikes > maybe as much as 50% of women has had so little > research done and so few options for us to choose > from. They'll probably find a cure for male pattern > baldness before they find a cure for fibroids. > DD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Hi! ALL fibroid removing procedures are scary! Especially hysterectomy as to me, it has the MOST complications and as I was not a surgical candidate for TAH due to obese abdomen, I had to research other fibroid ridding options and UAE was the most practical to me. Yes, I am VERY familiar with that page and questions my IR and gyn about it at length but HAD to do something about my horrific bleeding (16+ days at two Always plus sized pads every hour with hand sized clots and cramps!!!)......I had a 17 weeks sized uterus, too big for a vaginal hysterectomy too! So I had UAE on 5/22/02 with only a few days of bad cramping which resolved as days past and first and subsequent periods have been a BLESSING!!! 5 days using 1-3 regular tampons!!! NO CRAMPS!! NO CLOTS FROM HELL! I have my life back! PLUS, my abdomen is noticably shrinking!! So I am very happy with my UAE and only regret not having done it years ago.....by the way, I am 47 years old, 5'6 " 280#. > First, I would like to say that I hope that everyone who has chosen UAE is doing well and finding a great amount of relief since their procedure. I give you all a lot of credit for being so brave as to have this procedure...HOWEVER...I for one can say that after reading all of the pros and cons on UAE, UAE is DEFINITELY off my list of possibilities. There is no way I am going to even consider it; I have EXTREMELY BAD BLEEDING and I still will not consider even a remote chance of having this procedure done. I think I will just take my chances on other procedures and think that I would rather bleed than to have this done. It sounds pretty risky to me and the idea of having that stuff in me scares the hell out of me. I repeat the following excerpt from http://www.uterinefibroidembolization.net/facts.html : > > The Following Adverse Effects Have Been Reported In Medical Publications: > a.. Death - from embolism, or septicemia (the presence of pus- forming or other pathogenic organisms, or their toxins, in the blood or tissues) resulting in multiple organ failure > > > b.. Infection - from tissue death of fibroids, leading to endometritis (infection of the uterus) resulting in lengthy hospitalization for administration of intravenous antibiotics > > > c.. Misembolization - polyvinyl alcohol (PVA) particles flow or drift into organs or tissues where they were not intended to be, causing damage to other organs or other parts of the body > > > d.. Ovarian damage - resulting from PVA migrating to the ovaries > > > e.. Loss of ovarian function > > > f.. Infertility - loss of ability to conceive > > > g.. Loss of orgasm > > > h.. Failure of embolization surgery - continued fibroid growth, regrowth within four months > > > i.. Menopause - iatrogenic, abnormal, cessation of menstruation and follicle stimulating hormones elevated to menopausal levels > > > j.. Post-Embolization Syndrome (PES) - characterized by acute and/or chronic pain, temperatures of up to 102 degrees, malaise, nausea, vomiting and severe night sweats > > > k.. Foul vaginal odor - coming from infected, necrotic tissue which remains inside the uterus > > > l.. Hysterectomy - due to infection, pain or failure of embolization > > > m.. Pain - severe, persistent pain, resulting in the need for morphine or synthetic narcotics > > > n.. Hematoma - blood clot at the incision site > > > o.. Vaginal discharge - containing pus and blood > > > p.. Bleeding from incision site > > > q.. Bleeding from vagina > > > r.. Fibroid expulsion - fibroids pushing out through the vagina > > > s.. Unsuccessful fibroid expulsion - fibroid trapped in the cervix causing infection requiring surgical removal > > > t.. Life threatening allergic reaction to the contrast material > > > u.. Uterine adhesions Quote Link to comment Share on other sites More sharing options...
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