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BS: Hysterectomy vs Fibroidectomy: Opinions?

CarolC 01 Mar 08 - 12:52 AM
GUEST,Nancy 29 Feb 08 - 10:41 PM
GUEST,Cailleach2001 08 Mar 05 - 05:50 AM
CarolC 07 Mar 05 - 09:50 PM
CarolC 07 Mar 05 - 03:07 PM
Stilly River Sage 07 Mar 05 - 02:52 PM
wysiwyg 07 Mar 05 - 01:44 PM
CarolC 07 Mar 05 - 12:34 PM
Stilly River Sage 07 Mar 05 - 11:26 AM
wysiwyg 07 Mar 05 - 06:18 AM
GUEST,Cailleach2001 07 Mar 05 - 05:34 AM
CarolC 05 Mar 05 - 11:58 AM
GUEST,Cailleach2001 02 Mar 05 - 09:57 AM
GUEST,Cailleach2001 02 Mar 05 - 08:29 AM
NH Dave 02 Mar 05 - 02:51 AM
wysiwyg 01 Mar 05 - 03:35 PM
Charmion 01 Mar 05 - 03:21 PM
NH Dave 01 Mar 05 - 10:35 AM
jeffp 01 Mar 05 - 09:28 AM
Noreen 01 Mar 05 - 07:04 AM
Paco Rabanne 01 Mar 05 - 03:40 AM
CarolC 28 Feb 05 - 11:44 PM
Stilly River Sage 28 Feb 05 - 02:35 PM
sue exhull 28 Feb 05 - 01:31 PM
CarolC 28 Feb 05 - 12:46 PM
wysiwyg 28 Feb 05 - 11:31 AM
Noreen 28 Feb 05 - 11:23 AM
Stilly River Sage 28 Feb 05 - 10:06 AM
Paco Rabanne 28 Feb 05 - 08:57 AM
wysiwyg 28 Feb 05 - 08:41 AM
Noreen 28 Feb 05 - 07:45 AM
mg 27 Feb 05 - 07:55 PM
JudyB 27 Feb 05 - 07:37 PM
Hawker 27 Feb 05 - 06:12 PM
GUEST,CarolC 27 Feb 05 - 12:02 PM
GUEST,CarolC 27 Feb 05 - 11:59 AM
GUEST,Metchosin 27 Feb 05 - 11:58 AM
GUEST 27 Feb 05 - 11:57 AM
GUEST,Stilly River Sage 27 Feb 05 - 11:10 AM
rich-joy 26 Feb 05 - 08:22 PM
katlaughing 26 Feb 05 - 08:12 PM
rich-joy 26 Feb 05 - 08:06 PM
catspaw49 26 Feb 05 - 08:00 PM
Peace 26 Feb 05 - 07:29 PM
wysiwyg 26 Feb 05 - 05:37 PM
katlaughing 26 Feb 05 - 03:38 PM
CarolC 26 Feb 05 - 02:05 PM
wysiwyg 26 Feb 05 - 01:33 PM
wysiwyg 26 Feb 05 - 01:22 PM
SINSULL 26 Feb 05 - 01:12 PM
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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 01 Mar 08 - 12:52 AM

Heh. Well, what do you know? I had forgotten about this thread. Thanks Nancy and everyone. As it turns out, we stopped having insurance right around the time this decision needed to be made, so I guess the decision made me instead of the other way around.

What I ended up doing is trying to stay away from foods containing substances that act like estrogen in the body (although I can have some - I just need to use them sparingly), and using a very small amount of both progesterone and estrogen cream daily (I mean a very small amount), and biology just took care of the rest (ahem... some of the processes have ceased). I got a new doctor, too, shortly after I started this thread, and he wasn't quite so insistent about cutting out any of my parts. The original doctor ended up getting rid of all of his patients who used insurance to pay their medical bills, and now he just does cosmetic types of procedures, like botox and stuff. Maybe he wanted to spay me just to make a few extra bucks.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Nancy
Date: 29 Feb 08 - 10:41 PM

I had an endometrial ablation procedure in October 2003 after bleeding daily for nearly a year (wearing Depends in addition to super tampax AND pads) and two hospital visits for what I thought was hemorrhaging. I have a fibroid <4cm sq and a right ovarian cyst.   Very little pain ever.   
The endometrial ablation procedure was painless, quick, and effective. I still have normal to heavy periods at age 49, but hopefully they will go away within another few years. The blessing is that they are regular, predictable, manageable.   The hoped-for cessation of periods didn't happen. I highly recommend the procedure!
Nancy


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Cailleach2001
Date: 08 Mar 05 - 05:50 AM

"progesterone" - my mistake, my reservations refer to "natural" progestrogen too ("natural" in quotations as it is formulated in laboratory, usually derived from yams, although formulated to be bio-identical to human hormone). Fibroids often have accelerated growth during the high progestrogen environment of pregnancy, U486, an anti-progestrogen has shown promise a medication to shrink fibroids (used in much smaller doses than the same drug for early abortion, only available in trials/less side effects and can be used for longer periods than Lupron and related drugs). Some women writing on health boards have told of experiencing increase in fibroid size while using progestrogen cream; this is anecdotal evidence, but Dr John Lee's "evidence" is no better.

It sounds like the progestrogen cream helps you feel good, but if you use the cream, be careful and monitor your progress or otherwise, stop if fibroids are growing.

I used castor oil packs, they didn't change the fibroids but they did feel very soothing. Ditto for shiatsu, etc I was able to feel quite well while I had fibroids, but since my fibroid uterus was equivalent in size to a six month+ pregnancy and still growing, I did need to take more invasive action.

I would group the ultrasound procedure as being related to the MRI-guided laser ablation and cryo-surgery procedures. It reduces fibroid size, I don't believe it obliterates the tumours completely. It's mainly for treating small tumours. Contact Brigham and Woman's hospital for info. that is more detailed, correct and up to date! UAE also reduces fibroid size, doesn't remove fibroids completely. But these procedures, when successful, leave you with [smaller]dead fibroids, harmless scar tissue that will not grow any more. If you want the lumps completely removed, you need to have surgery. Depending on the size and position of the fibroids, laporoscopic surgery may be possible.

I sing and play folk music, but I still think groups such as uterinefibroids at Yahoo are more fruitful for this discussion than is Mudcat. After joining one of these mailing lists, you find you feel familiar with the more frequent correspondents. Some people do arrange to meet in person - I met two members of smartgroups UK discussion group and spoke on the phone with a couple of Irish members, and I even had an invite to visit a fellow fibroid survivor in Florida. Some of the US Yahoo-group participants organise "meet-up" sessions in cafés. You find more women with person experiences, similar anxieties, people who have had myomectomies and other procedures. Some women are newly-diagnosed and desperately seeking info and support, some - particularly at uterinefibroids on Yahoo which is monitored and include NUFF board members among its participants - have a wealth of knowledge on the subject.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 07 Mar 05 - 09:50 PM

I've been searching for information about the MRI-guided laser ablation, and so far, I haven't found anything not coming from the UK and also nothing any more recent than 2002. But what I did find looks like it might not be what I want. The information I saw indicated that this procedure only gets rid of part of the fibroid. I don't see much use in that.

I did a search using the key words, "sonic scalpel" and I only got two hits in Google... both of them to this thread.    ;-)    I was a bit amused by that. Then I searched on the words, "ultrasound" and "fibroids", and I got some interesting information. This procedure appears to remove the whole fibroid and doesn't involve any kind of invasive procedure. I'll now be on the lookout for any information about any possible down sides to this procedure. If I don't find any that look significantly worse than the others, and if the cost isn't significantly higher than the others, I think I'll probably go with that one.

I was talking to a neighbor today who had a hysterectomy (leaving the ovaries intact) about five years ago. She said her doctor recommended it because of her recurrent yeast infections. I asked her if they took the cervix along with the uterus, and she said she had no idea. She doesn't know whether or not she has a cervix. She said she had only two regrets... that she didn't have it done sooner (she doesn't miss having periods), and the other, that it didn't do anything at all to clear up the yeast problem.

Later on in the day, I ran into her again. She had just been talking with another neighbor who told her that she was going to be having surgery to tie up her bladder again. My neighbor asked her why she needed to do that, and the other lady said that when they tie up the bladder so it won't collapse or whatever it does, it only lasts about five or six years and then you have to get done all over again. That has me thinking more strongly about not getting the hysterectomy if I can avoid it, and to at least have the cervix left in if I can't avoid the hysterectomy. I understand that the cervix provides some support for the bladder in the absence of the uterus.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 07 Mar 05 - 03:07 PM

Thanks WYSIWYG.

SRS, the problem for me with finding out what feels "normal", is that I haven't had the experience of what it feels like to feel normal since I was fifteen years old. I really have no idea what "normal" would feel like for someone my age. So I just go for the best I can get ;-)


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Stilly River Sage
Date: 07 Mar 05 - 02:52 PM

The thing about trying them all is the patience one must practice for the duration. It took me at least six months to get the HRT to where it felt right. That meant that any new tweak in the amounts had to have a minimum of three weeks to begin to show up on its own without the previous level still wearing off, then a little more time to see how the adjustment fit. It was loads of fun [not], going through the pimples, hot flashes, weight gain, moodiness, the nagging feeling at the back of my neck that something *wasn't quite right yet.*

SRS


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 07 Mar 05 - 01:44 PM

I don't expect that the steps I'm taking now will necessarily produce the best results. But if they make me feel better than I was feeling for the time being, that's good enough for me.

Abso - OUT LOUD - feckin' - lutely!!!!!

I am a firm believer that when one cannot know which approach is the best-- try any and all that will cause no harm that are logistically possible. Throw 'em all at the wall. Sort out later what were the parts that worked. Every day, just do the best you can, and about the residence thing-- best of luck, Carol, and fast.

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 07 Mar 05 - 12:34 PM

WYSIWYG, stress will be reduced for me after we get the interview for permanent resident status adjustment over with. We've been waiting for that for two and a half years. We aren't really able to settle into any kind of "normal" lifestyle until that's finished.

Cailleach2001, progestogen does not behave in the body in the same way as natural USP grade progesterone cream. I know, because I've tried both. My body can't tolerate progestogen, but I find that I feel much better when I use the natural progesterone cream. In fact, I would have completely lost my mind a long time ago if I hadn't started using it. I would want to see research using the actual natural USP grade progesterone (topically applied) before I would stop using it, rather than research that was done using progestogen.

I don't expect that the steps I'm taking now will necessarily produce the best results. But if they make me feel better than I was feeling for the time being, that's good enough for me. And if they do actually produce real results in the long run, that will be icing on the cake.

SRS, I'm familiar with Dr. Northrup from seeing her on Public Television over a period of several years. I agree with some of the things she says, but not all of it.

Thanks for the input everyone.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Stilly River Sage
Date: 07 Mar 05 - 11:26 AM

I was surprised to see this thread at Mudcat. I am ambivalent about whether this topic should be posted here at all. It would be more fruitfully discussed on a women's health board. . .

Don't you just love it when random visitors second-guess the discussions going on here at Mudcat?

Carol, I suspect that with your allergies you're probably already ahead of the game as far as watching your diet and such. Don't discard Northrup because of that review--I think it is inaccurate, though I will say that if someone reading it doesn't recognize her desire to empower women to control their own health destinies they might have a guilty reaction when reading it.

There are other sources of estrogen in the body beyond the ovaries. But I think the ovaries are the only place where a small amount of testosterone is produced. I'm not up on the progesterone end of things because I never took the pill. Once the hysterectomy happened, progesterone was out of the picture. I tried for a natural HRT balance that "felt" most like I felt when I was healthy. That meant a mix of estrogen and testosterone (my compounded Rx FYI, is E2 0.2mg, E3 0.7 mg, Methyltest 1.75mg). Look into the types of estrogen, and what your body can do to them when it metabolizes them. I don't use E1 because it is most closely tied in with breast cancer and estrogen receptor stuff. Methyltestosterone is the synthetic version, but that's there because your system can metablolize the yam version back into E1. (It's pretty amazing what your body can do along those lines, actually.)

Consider what will help you now, but also try to take a long view and think about what you may have to deal with in the future. Don't borrow trouble, but try to make choices that won't compound problems later. Good luck!

SRS


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 07 Mar 05 - 06:18 AM

Carol, reducing stress and conflict also will help, as this links to the hormones as well. During my own battle, there were a whole lot of things I simply had to let go by. Whenever I resumed "combat," the symptoms would worsen.

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Cailleach2001
Date: 07 Mar 05 - 05:34 AM

I know about the hormone balance theories, but I'm very sceptical - and there is some evidence that progestrogen also promotes fibroid growth
(though to complicate matters, response to hormone supplementation seems to vary a lot from woman to woman)


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 05 Mar 05 - 11:58 AM

Cailleach2001, thanks for your input. I started this thread here in the Mudcat because I feel among friends here. I know many of the people who post here personally (have met them in person), and feel a natural affinity for many of the ones I have not yet met. I don't think I would feel that way about a message board that is specifically about fibroids. I have been reading some of the fibroid message boards, but I want to know what my friends who have had experiences with these issues have to say about them.

The word "fibroidectomy" is one that I made up specifically for this thread title because I knew that most women would have some idea of what the word "fibroid" related to, but many would not know what the word "myomectomy" referred to, and I wanted to get input from the widest range of people possible.

I want to research MRI-guided laser ablation (of the fibroids) a lot more. I find myself feeling more comfortable with that idea than any of the others I've read about so far, but I don't know much about it, so that could change.

Right now I am taking steps to try to effect the fibroids without any medical intervention. I have reduced to almost zero all foods and beverages that contain substances that can act like estrogen in the body. I don't eat meat, dairy, or eggs, but I had been consuming quite a lot of soy. I have now eliminated all products containing soy (with the possible exception of soy oil) from my diet. I have noticed a difference in the way I feel since doing that. Plus I use a natural (USP grade) progesterone cream, which is an estrogen antagonist. I want to see if it is possible to reduce the size of the fibroids any by doing that.

In the meantime, I'll be doing more research on all of the alternatives, especially the MRI-guided laser ablation of the fibroids.

flamenco ted, best of luck to Penny on her decision and whatever course of action she decides to take.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Cailleach2001
Date: 02 Mar 05 - 09:57 AM

Much of what Sinsull says about recovering from surgery is going to be true of any abdominal surgery, including myomectomy (with exceptions such as hysteroscopic resection of small fibroids on the inside of the womb and laparoscopic removal of some pedunculated extra-mural fibroids growing outside the womb on a stalk).

"Watching and waiting": Fibroids can often be managed conservatively. Waiting and waiting IS appropriate in many circumstances, but sometimes women put up with far too much deterioration in their quality of life for too long. I have heard of women who put off hysterectomy for years feeling so much better once they recovered from the operation and regretting not having done it sooner. (I've already said hysterectomy is a last resort, there are other procedures that can be tried first) Severe anaemia should not be tolerated for long if it is not sufficiently alleviated by iron and vitamin supplementation. In the case of large and growing fibroids, be aware that both surgical and less-invasive methods such as embolisation become more difficult or inadvisable with large fibroids. So if you have any fibroid dimensions in the 10 cm+ range, you should be thinking of acting sooner rather than later. Small submucosal fibroids on the inner lining of the uterus can be responsible for very heavy bleeding and if it is possible to remove them hysteroscopically through the vagina, that less-invasive procedure needs to be done when the fibroids are still small. By the way, I think R-J in Oz should look into UAE again (she can join the yahoo group "embo" if she wants to discuss her situation in more detail; there have been participants from Australia).

Menopause doesn't always sufficiently alleviate pressure symptoms from bulky fibroids
CarolC wrote that her doctor "never even mentioned the possibility of waiting until menopause to see if they would shrink (I'm 49... I might not have to wait all that long to find out)." I had UAE at age 49 and I am still menstruating at 54.

"About the Uterine Artery Embolisation, I'm a bit concerned about that one. One of the sites I encountered gave some statistics about women who had bad reactions to the particles that were put in their blood as a part of the process. Being as allergy-prone and chemical intolerant as I seem to be, that would be a big consideration for me."
There is at least one organisation which promotes myomectomy and severely and unfairly "disses" UAE. There are sometimes complications with UAE as there are with any medical procedure, but overall it has a good safety record. The PVA (polyvinyl alcohol) particles used to block the arteries in the fibroids become locked up in scar tissue in the small arteries and should not migrate outside the womb. UAE has only been used as a fibroid treatment for about 10 years, but PVA has been used for some 30 years for other forms of embolisation. I don't believe any of the radiologists I have seen writing about the topic consider chemical intolerance one of the contraindications to having UAE treatment, so do explore this issue further before dismissing this treatment option.

I haven't read Christine Northrup's books. I've read criticisms that she makes women feel guilty when they can't resolve their health difficulties through attention to diet, exercise and emotional healing; while she herself resorted to myomectomy. Improvement in your diet and physical and emotional health is going to benefit you, but you may still have fibroid problems. Vegetarians (etc) get symptomatic fibroids too (even if less of us do statistically). I went to a herbalist for 6 months, but he did warn me that large fibroids aren't likely to respond well to herbal medication; I do find that the whole area of vitamin, herbal, etc treatments is very confusing, lots of anecdotal advice, little documentation.

Hysterectomy – there are hysterectomies and hysterectomies. Most surgeons will remove ovaries if you are over 45 – though many women don't complete menopause until their mid or late 50s and the ovaries continue to produce some hormones for up to 12 years afterwards. The rationale for removing the ovaries is to safeguard against the possibility of developing ovarian cancer (though there is still a tiny chance of getting ovarian cancer in epithelial cells outside the ovaries!) and that HRT is available. But unless there are signs of ovarian disease or you have fibroids covering/intertwined with your ovaries, you should be able to elect to keep your ovaries. As someone else mentioned, they may fail prematurely anyway – but at least that might be gradual rather than abrupt.
You also have to consider whether or not to retain your cervix and whether to have vaginal or abdominal surgery. I think if your fibroids are small enough for vaginal hysterectomy, you should be looking for other ways to control the bleeding rather than removing your womb. Recovery is quicker from vaginal hysterectomy but abdominal surgery allows for fuller repair of the anatomy supporting your organs (some women have hysterectomy because fibroids are pressing on their bladder, but find they have incontinence problems due to weakness after surgery). I don't think a woman could keep her cervix with vaginal hystectomy, and the cervix is probably helpful for physical support and for sexual satisfaction. The scientific evidence such as it is seems to me to inconclusive.

Rich-Joy mentioned www.uterinefibroids.com this is a useful site with much info on various treatment options. Its proprietor Carla Dionne is head of the National Uterine Fibroid Foundation in the US (www.nuff.org) and also the moderator of the uterinefibroids (one word) Yahoo group. If you have fibroids and want to discuss the issues and experiences further, I do suggest joining this group. It has a large volume of mail, so be sure to opt of either the daily digest or website access only rather than receiving individual posts. If you are in the UK or Ireland, it is also worthwhile joining the UK fibroid discussion group at Smartgroups. Also in the UK, the Fibroid Network charity works out of London and has a website: http://www.fibroidnetwork.co.uk/ . There is also a German-language fibroid discussion group and I'm sure there are others.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Cailleach2001
Date: 02 Mar 05 - 08:29 AM

I was surprised to see this thread at Mudcat. I am ambivalent about whether this topic should be posted here at all. It would be more fruitfully discussed on a women's health board, but on the other hand if the subject doesn't appear in diverse media, too many people will remain ignorant of this common condition and its treatment options. As a participant in fibroid discussions hosted by www.groups.yahoo.com and www.smartgroups.com , I've read of women who suffered heavy bleeding and anaemia for years before they were diagnosed with fibroids. One wonders why the possibility that fibroids were the cause of these symptoms was not considered earlier, as diagnosis can usually be made simply with ultrasound. (On the other hand, even if a woman has fibroids she may have other conditions causing her heavy menstrual bleeding and/or anaemia). I myself had fibroids without heavy periods so I only discovered them when a tumour grew large enough to feel with my hand! I have also come across a number of women with similar experiences. If I'd known more about fibroids, I would have consulted a doctor sooner about very mild symptoms which I'd mistakenly thought were perimenopausal signs (urinary frequency and menstrual periods lasting a bit longer).

The word "fibroidectomy" is unfamilar to me; I know this procedure as "myomectomy". There would be no straight answer to such a question, for depending on the size, number and position of a woman's fibroids myomectomy can be a simple procedure or a very complicated and – due to the large blood supply to fibroids – potentially hazardous operation. Other considerations are (unfortunately) the skill of the available surgeons, insurance cover, the woman's feelings about hysterectomy, and the fact that myomectomy is likely to leave behind some tiny fibroids that may soon grow and become symptomatic. Obviously, if a woman strongly desires to bear children, even a window of opportunity of a couple of years is useful.

Hysterectomy sometimes has adverse effects and I think of it as a last resort. As several of the previous contributors to this thread have pointed out, this is not a straight either/or question as there are now other options for fibroid treatment. If your fibroids are small but bleeding is a problem, in some cases either conventional drug-treatment and alternative/herbal treatments may be helpful. If these treatments don't work, or fibroids are getting large, there are less-invasive therapies such as Uterine Artery Embolisation (UAE or UFE, particularly useful for woman who have large numbers of fibroids) and MRI-guided laser ablation (ablation of the fibroids, NOT of the uterine lining; variants of this rather new treatment is offered only in a few centres which I believe include the U of Missippi, Brigham and Women's Hospital in Boston, Mass, and St Mary's Hospital in London, England)

...more to follow ...


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: NH Dave
Date: 02 Mar 05 - 02:51 AM

I have a problem with ANY expert who dons this guise of fake humor, as if both of you are going to enjoy the trip. As far as I am concerned said practitioners should be brought up short with some well chosen comments about the meaning of, "WE".

Dave


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 01 Mar 05 - 03:35 PM

Never stick with a doc who says, "Well we're just going to have to go in there and take a look!" Generally, this actually means, "Prepare to be violated."

(WE are not going IN anywhere!) (You can't send postcards from "there"!)

The proper reply (as one exits the table) might be, "I might have LET you look inside me, but inside me is not a PLACE, and BTW you people don't get to "go in," you only get to use an implement to LOOK."

Really, the whole thing is, on so many levels, so ridiculous!

Ya know, if I could take all the muscle power a uterus has, and unleash it as kick-boxing, so many bad medical things would not have happened and might never happen to anyone else!

Hmmm.... OK. Next time I let someone "go in there for a look" I think I'll first insert an old diaphragm clearly lettered: "BEWARE: ATTACK UTERUS!"

Another useful piece of verbiage to use as needed: "No, we DON'T have to do xxxx. I get to decide what we will and will not do! Tell me the medically BEST approach, and the associated risks and benefits, and then I will decide. Tell me how my coverage may or may not cover what I want, and I will decide if I want to fund my plan myself or settle for what is 'covered'!"

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Charmion
Date: 01 Mar 05 - 03:21 PM

NH Dave, that treatment looks good in theory but sometimes doesn't work out so well in practice. My best friend (age 50, same as me) had it done 18 months ago and is now right back at square one, with heavy bleeding almost fifty percent of the time -- and that after enduring an exquisitely unpleasant surgical experience with a Stalinesque doctor who left her feeling like crap in more ways than one. She's now awaiting a hysterectomy, and gnashing her teeth at the wasted months of discomfort.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: NH Dave
Date: 01 Mar 05 - 10:35 AM

One of the treatments that sounds good over here is interrupting the blood flow to the tumor either by going into it with a laparoscope and mucking with the blood vessels within it, after which the tumor(s) die, in place or simply going into the abdominal cavity and blocking various blood vessels to the area. There's a pretty good site here whicch can answer many of your questions and possibly allay any fears about the various procedures.

Dave


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: jeffp
Date: 01 Mar 05 - 09:28 AM

My wife had her ovaries removed in October, due to metastatic cancer from her gall bladder. Since she is going through chemotherapy with a mediport in her chest, the doctor said "ABSOLUTELY NOT!" to HRT. Major threat of clotting, like 40-60% chance. He did, however recommend herbal approaches. She has been taking Estroven (I think that's how it's spelled), an herbal menopause supplement. The hot flashes have all but disappeared and she's not really showing much in the way of mood swings either.

BTW, the prognosis is very good after the 6 months of chemo are up.

P.S. Spaw, I nearly spit hot cocoa all over my screen!

jeffp


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Noreen
Date: 01 Mar 05 - 07:04 AM

Fibroids at NHS Direct Online Health Encyclopaedia
(This also has links to other sites dealing with fibroids, including the BMJ 'Best Treatments' page.)


Fibroids at Patient UK


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Paco Rabanne
Date: 01 Mar 05 - 03:40 AM

Thanks Carole.
             Penny read this thread last night, along with a shedload of medical information that I found through google, so she is a bit happier. She is seeing her own doctor on monday, who she has known for donkey's years.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 28 Feb 05 - 11:44 PM

I'm heading out of town for a few days, so I need to put this issue on hold until I get back. I haven't had time to form questions to ask the people who have offered for me to send them PMs. But I definitely want to do that, and will when I get back into town (probably after the weekend).

Thanks again everyone.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Stilly River Sage
Date: 28 Feb 05 - 02:35 PM

There have been stories like that around also: (Sixty Minutes did a story a couple of decades ago about an old small-town doctor who regularly misdiagnosed and mutilated pregnant women).

I'm sure that not all will agree with Northrup, that goes without saying of any practitioner in any field, and also because she does represent a more holistic and feminist school of thought. She has been seen in lectures here in the US for a number of years on the Public Broadcasting System, and peppers her medical talks with a lot of common sense. I found the appendices in her books to be very useful when evaluating and researching my own health issues. (Another one who did very useful lectures was Judith Reichman, MD, who also produced a few books as the result of the popularity of her lectures).

Northrup has produced several large books, but I suspect they're the product of a collective with her staff or colleagues to put together research-wise, with her text layered in. I don't read this kind of book cover-to-cover, I pick it up to get a general introduction and then go to the chapters that pertain to the reason I picked it up in the first place.

I hope this helps in evaluating her work. If you're interested in the real hard-core feminist view of women's medicine, the 25-Anniversary edition of Our Bodies, Ourselves is coming out this year. I have the earlier edition, so I'll probably pick this one up also. :)

SRS


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: sue exhull
Date: 28 Feb 05 - 01:31 PM

Not to cause a scare but....... 20 odd years ago my aunt was diagnosed with fibroids at 42, 6 month later she gave birth to a son !!!!! :) she was quite surprised !!


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 28 Feb 05 - 12:46 PM

"Estrogen...tends to irritate the nervous system. Progesterone, on the other hand, is associated with tranquility"

I don't know if I would agree with everything Dr. Northrup has to say, but I definitely have found this statement to be true in my own experience.

Thanks for the great information and personal anecdotes everybody. I'm still doing a lot of searching for info online as well as here. At this point I'm not any closer to knowing what I'm going to do than I was before, but I do feel a much greater sense of ease about not rushing ahead with any decisions, and that is in no small part because of the input I've gotten from the posts in this thread as well as from what people have said to me in PMs.

flamenco ted, I recommend that you and/or your beloved do a lot of online research on this subject as well as reading what's been recommended in this thread.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 28 Feb 05 - 11:31 AM

She was trained as a regular MD and once she began her practice, saw how ridiculously women are usually treated. She then began to explore other aspects of medicine and add them to her training. I'm not here to represent her, but I have never gone wrong with her advice myself.

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Noreen
Date: 28 Feb 05 - 11:23 AM

I have not heard of Dr. Christiana Northrup before today, and from a Google search it appears that she is excellent at producing and selling books.

Some of the things she says though sound very odd from the mouth of a qualified doctor, e.g. "Estrogen...tends to irritate the nervous system. Progesterone, on the other hand, is associated with tranquility" (apparently from the book referred to earlier in this thread, and quotred in nutri-notes)

Theer are others who are not such fans of Dr. Northrup: A Question of Accountability (my ordeal as a patient of Dr. Christiane Northrup MD)

I have no axe to grind here, but since I have never seen in any other source that oestrogen is produced by the uterus, I would tend to disbelieve this unless I had information from elsewhere to back it up.

Noreen Keene
Information Officer
NHS Direct


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Stilly River Sage
Date: 28 Feb 05 - 10:06 AM

Here is a National Institutes of Health (NIH) page that will give you some useful information also.

SRS


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Paco Rabanne
Date: 28 Feb 05 - 08:57 AM

This is amazing!!! My beloved was diagnosed this very morning as having fibroids! I will print this off for her to read tonight. The next stage for her is see her own doctor in Whitby and make an appointment for an ultrascan. All human life is on mudcat eh what?
             Flamenco, still the true path!


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 28 Feb 05 - 08:41 AM

Northrup's book.

~S~


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Noreen
Date: 28 Feb 05 - 07:45 AM

Excuse me butting in, but WYSIWYG, where did you get the information that
The uterus secretes estrogen, itself, along with the ovaries?


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: mg
Date: 27 Feb 05 - 07:55 PM

I would get at least one opinion from a teaching hospital..must be one in Atlanta if you are somewhat close. But Mudcat is the second best...mg


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: JudyB
Date: 27 Feb 05 - 07:37 PM

Carol -

I'd like to reinforce the importance of finding the right doctor, even if he or she eventually says the same thing. When my periods reached the point that I had 3-5 days a month without heavy bleeding, I knew I had to do something. When I went to discuss it with my OB-GYN and asked about fibroidectomies, he said something like "oh, you've been reading those women's magazines, haven't you?" I answered politely and never went back (would possibly have been more useful if I'd discussed how unhelpful that remark was, but I was younger then). I ended up having a hysterectomy (too many fibroids and future children weren't an issue), but I was comfortable knowing that my new doctor had considered the alternatives and that she removed only what was essential (I still have my cervix, and had itsy-bitsy periods every month for years afterwards - useful to help me know where my hormones were in the cycle). During the 6 weeks I was required to be out of work, Charlie and I went (with my doctor's blessing) to the Caribbean for the first time - swimming in that warm water and knowing I wouldn't suddenly have an embarrassing incident was WONDERFUL! It was years ago and theories have changed - I was on Lupron (sp?) for a couple of months to force me into menopause temporarily so I could get unanemic enough to self-donate blood before surgery (didn't need it, but useful just in case). Like some of the other folks, I'm much better now than I was before. I think I'm in menopause now (harder to tell, but I'm pretty sure) and there have been some changes but they've been gradual and we've found ways to adapt (and my Crohn's disease is better! - though maybe that's not related). PM me if you have any questions - but it was years ago and much of my info is out of date.
   - JudyB


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Hawker
Date: 27 Feb 05 - 06:12 PM

Carol,
I had a haemorrhaghing problem that left me so weak and tired that I sought help - far later than I should really. I had a hysterectomy at 38. They also removed one ovary as it was polycystic. I have not got more of a weight problem than I had before, infact I a stone lighter. I feel so much better and have heaps more energy. I had a hormonal blip after about 3 days for 24 hours and experienced premature menopause about 4 months after surgery, but not insufferable to get through. My husband is delighted with the new me - no more monthly mood swings ( I'm nasty all the time now LOL) and sex is good too! I found it good for me, but everybody is different. I wish you well whatever you decide and send you kind thoughts to get through it your way, to a successful conclusion.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,CarolC
Date: 27 Feb 05 - 12:02 PM

LOL, Metchosin.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,CarolC
Date: 27 Feb 05 - 11:59 AM

Thanks for the perspective, SRS.

Great story, Spaw. I'm going to have to remember that line. It could come in handy some time.

Thanks to all who have posted more information. I'll definitely see about the pantothenic acid (if I can find some not made from corn ;-)...

About the Uterine Artery Embolisation, I'm a bit concerned about that one. One of the sites I encountered gave some statistics about women who had bad reactions to the particles that were put in their blood as a part of the process. Being as allergy-prone and chemical intolerant as I seem to be, that would be a big consideration for me.

Does anyone have any first-hand knowledge of women who have had their fibroids removed with a sonic scalpel? Also, does anyone have any first-hand knowledge of women who have had their fibroids removed using myolysis? (Myolysis is the use of a laparoscopic incision and an electrical current to the fibroid.)

Thanks again, everybody.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Metchosin
Date: 27 Feb 05 - 11:58 AM

oops, I'm a guest.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST
Date: 27 Feb 05 - 11:57 AM

Speaking of dinner table conversation, it was determined a number of years ago that I had a couple of problamatic cysts on my ovaries, which inconveniently and painfully, according to my hormone levels, bled into my body cavity once a month. The doctor described one as the size of a grapefruit and the other as an orange.

I speculated that it was odd that doctors always seem to compare these things to fruit, to which my husband suggested that it was easier in our culture to discuss fruit at the dinner table than to bring up the topic of monkey's heads.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: GUEST,Stilly River Sage
Date: 27 Feb 05 - 11:10 AM

Carol, you have probably already realized that this is a subjective call--the symptoms may not be fatal but can be terribly debilitating. The surgeries have various outcomes. Though it took about six months of tweaking to get the HRT adjusted to what felt like "me," I'm satisfied with that outcome. I found the constant bleeding frightening and inconvenient for just the few weeks that I experienced it; I can't imagine dealing with it for months or years. Of course, my surgery was prescribed because the bleeding polyp was cancerous, and the hysterectomy provided the "clear margin" needed to pronounce it cured.

Choose or don't choose whatever surgery for your quality of life reasons. For me, the prospect of continual bleeding would beg the question "how much is too much?" and the inconvenience of always bleeding (an abnormal and restrictive occurance) would dictate surgery to resolve the problem. There may well be too many hysterectomies in the U.S.; I remember as a young woman resolving that I was going to go into my crone years intact, that no doctor was going to tell me "you're not using it anymore, let's rip it outta there." That didn't happen. I went through a period of mourning, at having lost such an elemental part of myself, one of those "chakras" that we hear about, etc. But I'm past that now, and I'm alive.

SRS


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: rich-joy
Date: 26 Feb 05 - 08:22 PM

This was also a good book, detailing the rugged journey through the Hysterectomy INDUSTRY and the eventual path to good health :

Sex, Lies, and the Truth About Uterine Fibroids
A journey from diagnosis to treatment to renewed good health
Carla Dionne, Executive Director, National Uterine Fibroids Foundation
Foreward by Scott C. Goodwin, M.D.
ISBN: 1583330704

and her journal and much info are on the website :

www.uterinefibroids.com

Cheers! R-J


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: katlaughing
Date: 26 Feb 05 - 08:12 PM

An Aside to Spaw: did you happen to see the woman on Oprah the other day? She'd had a tumour since childhood which apparently most docs thought was inoperable. (I missed the first part.) Anyway, when they took it out, it was 300 LBS!!! Hell of a way to diet!


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: rich-joy
Date: 26 Feb 05 - 08:06 PM

CarolC - I can't urge enough, for you to investigate ALL the options before "The Big H" - and ESPECIALLY more than one medical opinion!!! All my doctor knew of was "Hysterectomy" too - he'd never even heard of the alternatives - and he was perplexed at my resistance, saying "but you don't ever want children, so why not just have it all out?" :-))))   (strangely, female GP doctors are often no better in this regard!!)

Science cannot agree on the causes for Fibroids and particularly for those that "get out of hand". It probably varies from woman to woman anyway - in my case it seems to be linked to being on The Pill for 33 years straight. I never seemed to have any problems with this contaceptive method, so the doctors "left well-enough alone"!! It was only at that late 40s-early 50s time of life, that it became evident that I was NOT getting off scott-free!!

Below is a link to one of MANY sites that detail the UAE treatment for Fibroids. It's not suitable for every case, but you may be lucky.

UAE - Uterine Artery Embolisation - is probably THE LEAST INVASIVE medical method for Fibroid treatment, which is a plus straight off!!!
Please check it out.

http://www.fibroidworld.com/UAE.htm

Also, check out the natural homeopathic treatment alternatives and the Chinese herbal and acupuncture treatments. If you DO decide to go for the chop, having as strong and healthy a system as possible is critical and these natural health practices will help you more than any damned pharmaceutical company product!!!!!!

Just my 2c worth ...

Cheers! (and Good Luck)
R-J


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: catspaw49
Date: 26 Feb 05 - 08:00 PM

Excellent thread Carol and the info is quite good. May I inject a bit of humor in this often humorless subject?

It took me awhile to get used to living with Karen. She is a histotech, meaning her job is a bit weird. When anything is removed, sectioned, or biopsied on anyone, living or dead in a hospital, the tissue samples go through the lab. In the histology lab, the "big parts" are cut by a pathologist into "small parts" which go through several and varied procedures so they can be cut and mounted (with the cells colored for easier diagnosis) on a slide for the path to read and discuss with your doctor. I am proud to tell you BTW, that she is the lead tech on the main production shift in a hospital lab that does NOT make you wait. If you have your surgery before 5 PM, your doc, in most cases, will have back complete results the next morning, not just the frozen sections. Anyway, she's good at her job.

It took awhile to get used to normal conversation to include lines like, "I had to run down to the morgue and get the arm out of the freezer." Or, "The tumor was the size of a basketball but after it drained it was amybe as small as a golf ball." Geeziz......this is weird stuff as you try to eat supper. I got used to it and now it's as normal as breathing. But it can still be interesting.........

We're at a party and the group we are sitting with are talking about strange things that happened to them on the job that day. Karen generally doesn't join into party talk and we would neither one have been at this one except out of obligations on my job. Neither of us could later figure why she was inspired to speak up at this time, but as a lull came in the chit-chat, Karen said, "We had a four pound uterus today,"

It was like the stock commercial where everyone goes silent. Not a sound could be heard for what seemed miles around and at least 6 hours! It wasn't that long of course but it wassilent!!!

Spaw


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: Peace
Date: 26 Feb 05 - 07:29 PM

Pantothenic Acid (B5) is readily available in 'health food' stores.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 26 Feb 05 - 05:37 PM

Oh, right, the corn thing-- I forgot. I dunno, but you should be able to find at least the B5 somewhere!

~S~


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: katlaughing
Date: 26 Feb 05 - 03:38 PM

Carol, you might check with Nutri-West. They can answer any questions over the phone, plus they have a catalogue and search function online. They advertise all of their products as hypoallergenic. I checked a couple of them and didn't see any corn fillers listed. I have taken some of their supplements as prescribed by my acupunturist and not had a problem, though I don't have near the allergies that you do. Good luck.

kat


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: CarolC
Date: 26 Feb 05 - 02:05 PM

The problem with the supplements (beyond just the fillers) is that many of the actual nutrients these days are derived from corn. Most brands of Vitamin E, most ascorbic acid (vit. C), most brands of calcium... this page should give you an idea of what I am up against when it comes to finding suplements that don't contain corn. I've been looking for a company that can guaranee corn-free supplements, but I haven't had much luck so far. Plus, I am also allergic to several other things as well. I'm sure my inability to get proper nutrition because of the allergies is a contributing factor in my general lack of robust health.

But thanks for the link to the info on adrenal recovery. I will check it out.

Sinsull and Johnne, you both have my deepest sympathy on the severety of your symptoms. I'm glad you were able to get things sorted out to your satisfacion.


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 26 Feb 05 - 01:33 PM

Ahah-- what I have is the URL where I posted all I know about adrenal recovery, at the Annexe:

CLICK HERE

Just correct for supplement-allergies and get as much as you can from food.

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: wysiwyg
Date: 26 Feb 05 - 01:22 PM

Carol, no B6 would be necessary; as I recall there would normally be a B-complex just for general health, but you certainly can get those from eating well. What you CANNOT get from eating well is enough B5 tho-- pantothenic acid-- in big numbers. Also there is not enough of it, in any "stress" supplement marketed. Please PM if you want me to PM you my info about adrenal recovery taken from her book and from my own experience. I think I have it as a saved message from sending it to others.

If you want to build yourself up before major decisions or surgery, I'd allow six months, for exercise, nutrition, and adrenal recovery supplements. These are also things you would be wise address now even if you don't have surgery. You CAN at least feel better! :~)

BTW when I have had supplement allergies, it's been from the filler used in making them, not the item itself. YMMV.

~Susan


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Subject: RE: BS: Hysterectomy vs Fibroidectomy: Opinions?
From: SINSULL
Date: 26 Feb 05 - 01:12 PM

Ah yes,iamjohnne. Those were the good old days. Twenty-one day long periods requiring doubled and tripled maxi pads, crying in frustration at the horrific pain, sleeping on towels, iron supplements. Fond memories.

As to menopause. Mother Nature had a field day with me. Started menstruating at 8 1/2. At 57, I am in menopause. 12 more years of chronic anemia - I don't think so.

Three days after a D&C, I was menstruating full force. The doctor had me come in to see for himself - he didn't believe me. My ultimatum: "You take it out or I will."

And of course there were the tcchhh tcchhers who looked at me in dismay and said "You know doctors do it all the time now whether you need it or not to pay for their equipment."

Do your homework and make your decision based on trust in your doctor and common sense. Good luck, Carol.


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