Re: making decision about hysterectomy

[Guest guest]

At 08:58 AM 9/1/2002 -0000, wrote:

Let me be the first to tell you to at least consider embolization. And I

didn't see myomectomy mentioned--has it been ruled out? Specific comments

follow below.

>A recent ultrasound shows that I have a 17 cm uterus, a large

>fibroid that is 6x6x6x9, and three others half that size, and

>probably lots of other little ones.

....

>I was told that the embolization procedure

>doesn't work well with larger fibroids, and that there are still a

>lot of problems with the procedure and many patients still have to

>have a hysterectomy after undergoing the procedure.

While it's true that UAE doesn't work well with larger fibroids, yours

aren't that large. I have a 14 cm uterus with 8 fibroids, the largest of

which is 8x6x7. So I'm just a little smaller than you are, and my IR said

I was a very good candidate for UAE. I can't remember now the maximum size

uterus he would work on, but I was nowhere near it, and more like maybe

halfway there. That surprised me.

From what I'd read, I feared that my fibroids were too big to benefit from

UAE because I think I'll need them to be a lot smaller than they are to

provide symptom relief. But then I learned (from research) that softening

alone can alleviate a lot of symptoms, and shrinkage is a bonus on top of

that.

If you talk to this NP again, ask what constitutes " lots of problems " and

exactly what those problems are, as well as how many patients still have to

have a hysterectomy and why that would be necessary. Ask for sources of

this information.

My take on the UAE is that if it's a way for me to avoid surgery, I'm all

for it (although it's not without risks). If it doesn't provide enough

relief of my symptoms, then I can consider a myomectomy after that

(although my big fibroid is in a troublesome place for a myemectomy). But

if the UAE works, then I'm going to be one happy gal and _very_ relieved

that I didn't blindly accept the surgical option.

UAE may not be the best choice for you, but I encourage you to investigate

it on your own, and talk to an IR. I was fearful of getting a sales pitch

from the IR, but decided that it would be no more unbiased than what I was

getting pro-wait & watch/myomectomy from my gynecologist (he didn't mention

UAE until I brought it up, and then bad-mouthed it) and I would give

appropriate weight to the opinions I was receiving.

Debbie

[Guest guest]

Hello Jean. I am in a similar situation in that I'm 43 and infertile

anyway. And though I would have hoped my fibroids would have started

shrinking by now, they have actually appeared to grow (again) in the last

few years, since the onset of my " peri-menopausal " stage of life (which I

know understand it very common).

Anyway, after much soul-searching, I decided on having a second myomectomy

(my first one was 8 years ago, and my next one is scheduled for 9/12). But

this was only after ruling out UAE because I happen to have a large ovarian

cyst that has to come out at the same time, and I don't want to be having

two procedures in a row (especially because I'm very anxious to have my

worse symptom - bad back pain - gone, and the IR with whom I consulted about

UAE - after looking at my particular situation / MRI - felt the embolization

was not a good bet to take care of that due to the appearance of my

fibroids).

Having said that, if I didn't have to be cut open for the cyst anyway, and

especially if I had good reason to believe that I'd have a hard time

post-surgery (like you do with CFS), I would have been very interested in

persuing the less invasive embolization idea further. I've read & heard

lots of good/promising info about it and in fact there are many people on

the " embo " group who have had great success with it -- people of all ages

with fibroids of all sizes. (In fact, if you haven't already, I recommend

that you join the embo group as well as take a look through their archives

too.)

As far as hysterectomy, that is what was recommended to me at first (a

" subtotal " one, which leaves the ovaries & cervix intact). And that's what

I'd planned on for a while, and though I know if I'd gone that route I would

be guaranteed that no more fibroids would grow back yet again, I'd also be

guaranteed that my uterus wouldn't grow back either. And as I've gathered

more information about how our uteri are doing more than just making babies

for us, throughout our lives, I decided I should probably keep it at least

at little bit longer. I mean, keeping my uterus wasn't a huge priority to

me before I really started researching the subject, and I was actually

looking forward to no more (useless) periods - hooray! - and still have my

doubts about going against the " mainstream " thinking about it (including my

own gyn as well as my dear trusted uncle who is also a highly-respected

gyn), but the bottom line that keeps coming back for me is that my uterus is

not threatening my life, so I'd rather take my chances with it rather than

without it. (I guess I'd prefer not to trade the known problems that come

with fibroids for the unknown potential problems they might be replaced

with.)

Anyway, I hope my story helps you with your decision. I think the important

thing to remember is that each woman's situation is unique, and each of us

needs to make a choice (out of the few imperfect ones out there) that feels

like it's the best for us, at the time. Good luck to you! Loretta

wrote:

> I am 48, have no wish to be

> fertile, but don't know if hysterectomy is the best/only real

> alternative. To complicate my decision, I also have Chronic Fatigue

> Syndrome (the fibroids pre-date the CFS) so I'm trying to manage two

> chronic illnesses that are unlikely to be related.

> I was told that the embolization procedure

> doesn't work well with larger fibroids, and that there are still a

> lot of problems with the procedure and many patients still have to

> have a hysterectomy after undergoing the procedure.

> I was told that although generally fibroids stop growing at

> menopause, they often don't shrink very much.

> So, at this point menopause looks to

> be at least several years away, and apparently offers little

> guarantee that the fibroids will reduce much in size.

>

> I am interested in information from people with similar

> predicaments. I don't fear surgery, but with another chronic

> condition fear feeling worse afterward.

[Guest guest]

Hi Jean;

Wow, you sound just like me! I am 46, 17 weeks sized uterus multiple

9 cm submucosal/intramural fibroids, large abdomen, regular periods

but excessive bleeding/clotting. I also have CFS, fibromyalgia, CTS,

anemia and am just recuperating from Guillain Barre Syndrome. BUT,

and a big BUT, I did have UAE on 5/22/02 and could not be happier!!

Yes, all the bulk symptoms are gone! No cramps, NO clots, minimal

period were I can use tampons 1-2 daily for 5 days (not usual 16!),

AND my abdomen IS shrinking down as my clothes just hang on me now, I

have better bladder capacity AND increase in energy I never thought I

would see!!! SO, just because you have a large fibroid and uterus

does NOT mean UAE is not for you! I am the same and I just love the

results so far! 3 months post UAE and still expect more and better

results! Research it more on the net....and do not be diswayed from

trying it.....I just wish my gyn had told me about it years and years

ago before everything got so big! I was not a surgical candidate for

hysterectomy as am too obese, especially in the abdomen...so I went

with UAE and sooo happy I did. Try it.....you could always have a TAH

later.

Melody

[Guest guest]

Hi,

Could you please tell me about your findings regarding

the uterus duties other than making the babies, or

perhaps refer me to the web sites.

Thanks,

Sem

[Guest guest]

Hi,

I am suprised that UAE seems to be commonly used now

in the USA. So far, I visited two GPs and both told me

that UAE is experimental. They even mentioned that I

might have up & down abdomen incision since the uterus

height is 17.7cm, too high! (I live in

Sydney-Australia). I have my first appoinment with a

gyn next week and am looking forward to it. I have 20

weeks sized uterus with at least 3 large fibroids, the

diameters ranging from 4.5cm to 6.5cm.

Sem

[Guest guest]

Dear Jean

I faced the same situation....47 ....3 children...but no CFS. I made the

hyst decision and with all the complications healing it was the right one

for me

take care

Barbara

[Guest guest]

In a message dated 9/2/02 6:47:24 AM Eastern Daylight Time,

demir_is@... writes:

> I am surprised that UAE seems to be commonly used now in the USA. So far, I

> visited two GPs and both told me that UAE is experimental. They even

> mentioned that I might have up & down abdomen incision since the uterus

>

Sem,

Believe it or not, the docs (and insurance companies) in the USA tell us that

UAE is still experimental here as well. If you can call at least 7 years of

experience in the USA (and even longer in Europe) as still experimental.

Also, you can check the archives, but I remember several women in the past 6

months state they are from Australia and I thought they were talking about

having UAE. You also might want to check the " embo " group (similar to this

uterinefibroids group, but for folks who have had, or are interested in UAE).

I wouldn't let any GP tell you that an option for treating a GYN problem is

not available to you. Just remember, GP stands for " general practitioner " .

I've found that most GP's (unless they keep up on literature specific to GYN

issues) wouldn't know much about UAE because they don't perform the

procedure. Also your post states " I have my first appointment with a gyn

next week " . Talk it over with this GYN and don't be afraid to get another

opinion.

Ann M.

Ann M.

[Guest guest]

> Sem wrote:

> Could you please tell me about your findings regarding

> the uterus duties other than making the babies, or

> perhaps refer me to the web sites.

I think the best opinion I've read so far on this topic was from Dorie

Eldridge, list moderator of Yahoo!'s " HysterList " group

(http://groups.yahoo.com/group/HysterList/), in her post #2065 from

yesterday (Sun 9/1/2002). She said...

" All of the non-gestational functions of the uterus are poorly understood

(if not denied by many doctors), so it

is not clear to most of us exactly what we may be giving up in future health

needs. "

She also said...

" Please don't be frightened by this--the vast, vast majority of hysts do not

entail major negative effects. In fact, most women report a greater state of

health afterwards than they had before the surgery, even when they can

identify some negative surgical outcomes. But there are also lists full of

bitter women who are suffering severe

complications of one sort or another who are all second-guessing their

decisions. "

I guess I'm just not ready to be one of those second-guessing women at this

point in my life. Some of the possible issues that concern me are listed on

the following website. HOWEVER, before you go there PLEASE keep in mind

that I was informed that this research was only done among this

(anti-hysterectomy) organization's members, a group of women who are more

likely to have had such problems. If it were done among a more general

group of hysterectomized women my guess is that many of the numbers reported

in this survey's results would have been much lower, if not non-existent.

So we really need to take these " statistics " with a big grain of salt.

Having said that, for me it was enough just to know that there was at least

some chance that removal of my non-life-threatening uterus could result some

of these problems, even if that chance is very, very small.

http://www.hersfoundation.com/ (click the " Adverse Effects Data " link for

the study results with the list of possible side-effects)

And at the same time, for balance, I also encourage you to read the full

text of Dorie Eldridge's post #2065 dated Sun 9/1/2002 at

http://groups.yahoo.com/group/HysterList/.

Loretta

[Guest guest]

I too must say after really studying up on all my options and my own needs,

making a decision for hysterectomy was my choice. I allowed myself much

time to ponder, question and see myself with all the possible outcomes to

find the most compatible solution for me. Good luck in your journey to make

a decision for you! Marie

[Guest guest]

Jean

I have to say Melodie has said a lot of what I would wish to say to

you as well. I was initially offered Hyst only and given a lot of

the flannel you have heard and this was years ago when my fiboids

were smaller. I am afraid this reflects a lack of knowledge.

My uterus was large and very misshapen, my fibroids were big -

several the same size as yours and I am very happy that:

1. My fibroids have stopped growing following UAE - my primary

requirement.

2. All my symptoms - bladder and bowel pressure, prolonged bleeding,

back ache [and worse], lack of energy etc have all been improved,

some remarkable so.

3. My abdomen has shrunk two inches so far and I am now 14lb lighter

after 20 weeks, without any dieting involved.

Not everyone benefits this way from UAE but most do. It is the least

invasive of the options available to you and should be seriously

considered - it does not prevent you from taking any other otions on

later if you are not happy. It also has a much lower rate of

complications.

MRI is really the best way to get a proper diagnosis - I really

doubt that your fibroids are sufficiently clear from an ultrasound

scan to tell you how many smaller fibroids you have, let alone to

give you accurate measurements of the bigger ones. Smaller fibroids

shrink very well, so on this alone UAE will give you good results.

This is where my major success came from, but I have seen 20% off my

bigger ones also on my 3 month follow up MRI. If you can get an MRI

then you will get to speak with an IR at the same time and can get a

more objective opinion of your issues and potential for improvement

from UAE.

I cannot see that you can make this decision on the partial

information given to you. An IR consultation will round this out,

and will also deal with some of the scaremongering stories you have

been told. My experience tells me that they are not as true as you

have been led to believe. Can I suggest you log onto the embo site

on Yahoo and look for the posts by DR Worthington Kirsch, I am sure

he had something to say about this in the past. His posts are

generally worth reading.

Best of luck,

Anne

Ps Fibroid weight is also covered in some posts but good luck trying

to find them!

[Guest guest]

Hi Anne ~ I'm new to the group and am trying to find out other people's

experience with UAE ~ I'm 45, have multiple symptomatic fibroids (largest one

I know of is 6.7 centimeters) and I'd like to try UAE. I'm getting an MRI

this Thursday. I have read alot about fibroids & UAE but I've only talked to

one person who actually had UAE. My biggest fears are losing ovary function

after UAE (and going into premature menopause if the PVA particles obstruct

the ovarian arteries). I'm also curious if sex drive or function is

adversely effected. What about pain? What skrinkage can I expect? I love

to hear from anyone who has had a UAE. Advice on pre & post op welcome!

Thanks!

Francine