BS: Hysterectomy vs Fibroidectomy: Opinions?

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.

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.

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

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

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

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.

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

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

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 ...

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.

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.

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)

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

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

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.

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

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

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 ;-)

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.

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.

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

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.