Re: new and evaluating my options

[Guest guest]

Hi Kathy,

Everyone's journey is different, but if I were you hysterectomy

should be my last option. Consider trying UFE or myo first. You can

always have a hysterectomy later on if UFE or myo don't solve the

problem to your satisfaction, but once it's gone, it's gone. Also

consider that with vaginal hysterectomy, they remove the cervix,

which shortens the vagina, which may lead to uncomfortable

intercourse. (Bet your PCP and gyn never mentioned that one!) You'll

also find info in the archieve about other risks of hysterectomy

such as heart disease.

As far as the pain goes, my fibroid hurt for awhile and I found

relief with accupressure. Depending on the fibroid and the time of

the month, they can swell up, they can shift. etc. etc.

As far as the hugh ball in your belly.... If you're looking for a

flat stomach, UFE probably won't do it, so you're probably looking

at myo. And if your doc tells you your fibroid is too big for a myo

it more than likely means he/she can't do a myo for a fibroid that

size, not that it can't be done. Then you're on to the next phase of

finding the right doctor.

Hope this has given you somethings to think about, but don't let

them talk you into a hysterectomy unless it's what you really want

after considering all the facts.

Gerri

>

> My best case scenario appears to be that the Lupron also shrinks

my

> uterus down to a size in which I can undergo a vaginal

hysterectomy

> rather than an abdominal. I think I know better than to hope for

that

> though....

>

> So, wise women, does this sound like a reasonable thought

process? What

> additional information should I have?

>

>

> Kathy from northern IL

[Guest guest]

Hi,

Research hyst before you decide on it. You may just be trading problems. " One

surgery and I am done " hysterectomy - this is soooo not necessarily true. You

may need more surgeries due to the hyst. If they take your ovaries then there's

HRT and all the problems concerning it. Hyst is a big bag of worms. The other

options have their own possible negatives, this is true too. This is what makes

deciding between the options so hard. But hyst is not a one time surgery and I'm

done with fibroids deal. It's also not a simple surgery.

Just think about ALL of your options but if you chose hyst, that's fine.

Ku

[Guest guest]

Hi Kathy

I also have a HUGE fibroid ... the size of a 6 month pregnancy. I

am scheduled for a myomectomy in July (I too managed to stop heavy

bleeding thru a combination of accupuncture, naturopath guidance and

a multitude of supplements). Don't accept the reasoning that your

fibroid is too big, therefore the only option is a hysterectomy.

Get a 2nd, 3rd and 4th opinion if necessary, especially if you don't

want a hysterectomy. Don't let them 'bully' you!

I believe that it is not the size of the fibroid that determines the

treatment but rather the skill of your doctor/surgeon. My gyne is

skilled with Laparoscopy and she wanted to perform one on my huge

fibroid, After much deliberation, I have decided on an open

abdominal laparotomy (ie myomectomy). Some things are just too big

to pull through a keyhole, even if it is cut up into thousands of

tiny pieces (sorry for the graphics)! My reasoning, not hers. The

length of time needed to perform such a surgery is beyond my comfort

zone.

I too want to keep my uterus. I am fighting tooth and nail to do

what I can. Just because I have not had nor do I think that I want

children doesn't give 'them' the right to think that I no longer

need my internal reproductive organs (as I've been told several

times)! I am only 36 years old. And a hysterectomy might just open

up a whole new can of worms that are unexpected and unnecessary.

Good luck with your research .... look at ALL the options and choose

what is best for you. Don't let 'them' make the decisions for you.

You do have options ... listen carefully to what you and your body

needs and wants.

sKY::

PS I had 1 1/2 UAE .... it was an attempt at trying to rid myself of

the symptoms of my large fibroid. Unfortunately, for the most part,

it failed, so the next best option for me is my scheduled July

myomectomy. I have tried EVERYTHING up until this point to heal

naturally and thru the medical system ... some successes, some

failures. Learning to read your body is the most dificult

challenge. But it is worth the effort. You are worth the effort!

> Hi! I am yet another new member to the group. I was diagnosed 7

years

> ago and am now at " 17-18 weeks " or large melon sized uterus. Lots

of

> problems and complaints along the way... I'm sure you know the

drill.

>

> My PCP was annoyed but willing to let me 'wait and see' until

recently

> when he did a CBC and realized I was severely anemic. I had been

for at

> least two years but that is another issue....

>

> So... off to a gyne who, of course, is insisting on a hysterectomy

with

> all the usual threats about what could happen if I don't have

one. She

> wants to start me on LupronDepot for awhile and let me build up my

> blood, then surgery.

>

> No one seems to care that I have rectified many of my most severe

> bleeding issues in recent months using a regimen of vitamins and

> minerals. The doesn't solve the discomfort, cramping, etc.

though. It

> also doesn't solve the huge ball in my belly.

>

> I would like some help in evaluating my options. I have been

doing a

> lot of reading but that never tells the whole story. Let me know

if

> this sounds right:

>

> 1) I am at peace with not having more children and am still 8-10

years

> away from menopause.

>

> 2) A myo is not really an option as my largest is well beyond

the '12

> week' rule. Also, even if the largest was smaller, as I am not

> interested in further pregnancies and would probably have

additional

> fibroids in time I am trying to figure out what the advantage of a

myo

> would be over a 'one surgery and I am done' hysterectomy.

>

> 3) I have long been interested in getting a UFE but am concerned

because

> I also have Multiple Chemical Sensitivities and am allergic to

latex.

> Expecting to have PVC inside of me for the next 40-60 years with

MCS

> seems dangerous. Also, even at a 50% maximum reduction in fibroid

size

> I will still - always - have a huge uterus.

>

> (Has anyone here had an allergic reaction to the materials used in

an

> UFE? Anyone with similar issues? I found no reference to

allergies

> anywhere in the archives of this list!)

>

> 4) That seems to leave me one choice - going the route of the

dreaded

> hysterectomy. I dread the thought of any surgery (I have had 7

> operations before and all natural childbirth so I'm not a wimp - I

just

> hate undergoing more drugs, more chemical exposures, more fights

with

> doctors and staff, days of constantly being on guard with " are

those

> latex gloves? " and " I can't have latex adhesives on my skin " ,

lengthy

> recovery times... ugh!). I dread even more the thought of losing

my

> uterus - but most of the complaints I hear from women who have had

a

> hysterectomy seem like nothing in comparison to what I have been

living

> through for several years now.

>

> My best case scenario appears to be that the Lupron also shrinks

my

> uterus down to a size in which I can undergo a vaginal

hysterectomy

> rather than an abdominal. I think I know better than to hope for

that

> though....

>

> So, wise women, does this sound like a reasonable thought

process? What

> additional information should I have?

>

>

> Kathy from northern IL

[Guest guest]

Hi Kathy,

1. If you do tell a non-skilled dr that you are happy w/not having

more children, you are basically allowing them to make the decision

for you. Hence the hysterectomy. Some ob/gyn's only concern is

delivery babies.

2. I'm not sure where you found information on the " 12-week rule " but

it is a tall tale. There are women that uteri the size of a 9

month/full term pregnancy that have had sucessful myomectomies.

3. If you are allergic to the materials used you need the staff to be

aware of this so you won't have the allergic reaction problems that

you fear to occur. Communication w/a skilled dr will ensure your

safety....and his/her's from a lawsuit as well.

4. You are 8-10 yrs away from menopause, and I hope you do realize by

having a hysterectomy there is not only a chance that you may have to

have surgery again, BUT if the take your ovaries you'll be on HRT.

You already stated that you have multiple chemical allergies. What

makes you think that this may not be one of them? My aunt had a

hyst (full)for her fibroids and she was put on HRT and she has been

miserable w/side effects and everytime I see her I cry. She can't

take HRT it effects her bloodpressure to the point that she's close

to stroke. My mom had a partial hyst and she tells me if there was

another option she would've taken it, but 12 yrs ago that's all she

was given. She is also heavily medicated b/the loss of her uterus has

caused a imbalance in her body that can not be fixed.

I'm going to tell it to you straight just b/that's the way I am.

There are dangers in all prodecures and you must take that in

account. You also shouldn't short change yourself. How many doctor's

have you seen? Did you see a Reproductive Encrinolgoist? Did you

express concern as to how you'd like to preserve your uterus. As the

women of the group know it has more functions than just being home to

a fetus. Why do a vaginal hysterectomy over an abdominal one? What if

dead tissues are still left inside of you and then cause infection?

Lupron can only be taken 2 or 3 times max. What if your blood count

is too low to go through the surgery and you already have taken

maximum dosage? Then you're back at square 1. Have you researched

Lupron's side effects? Did your dr say you were a candidate for

vaginal hysterectomy??? Some women haven't had any shrinkage w/the

Lupron, what if you are one of those women?

I hope this helps you brainstorm a little.

Shaunah

Myo scheduled -June 1st

> Hi! I am yet another new member to the group. I was diagnosed 7

years

> ago and am now at " 17-18 weeks " or large melon sized uterus. Lots

of

> problems and complaints along the way... I'm sure you know the

drill.

>

> My PCP was annoyed but willing to let me 'wait and see' until

recently

> when he did a CBC and realized I was severely anemic. I had been

for at

> least two years but that is another issue....

>

> So... off to a gyne who, of course, is insisting on a hysterectomy

with

> all the usual threats about what could happen if I don't have one.

She

> wants to start me on LupronDepot for awhile and let me build up my

> blood, then surgery.

>

> No one seems to care that I have rectified many of my most severe

> bleeding issues in recent months using a regimen of vitamins and

> minerals. The doesn't solve the discomfort, cramping, etc.

though. It

> also doesn't solve the huge ball in my belly.

>

> I would like some help in evaluating my options. I have been doing

a

> lot of reading but that never tells the whole story. Let me know

if

> this sounds right:

>

> 1) I am at peace with not having more children and am still 8-10

years

> away from menopause.

>

> 2) A myo is not really an option as my largest is well beyond

the '12

> week' rule. Also, even if the largest was smaller, as I am not

> interested in further pregnancies and would probably have

additional

> fibroids in time I am trying to figure out what the advantage of a

myo

> would be over a 'one surgery and I am done' hysterectomy.

>

> 3) I have long been interested in getting a UFE but am concerned

because

> I also have Multiple Chemical Sensitivities and am allergic to

latex.

> Expecting to have PVC inside of me for the next 40-60 years with

MCS

> seems dangerous. Also, even at a 50% maximum reduction in fibroid

size

> I will still - always - have a huge uterus.

>

> (Has anyone here had an allergic reaction to the materials used in

an

> UFE? Anyone with similar issues? I found no reference to

allergies

> anywhere in the archives of this list!)

>

> 4) That seems to leave me one choice - going the route of the

dreaded

> hysterectomy. I dread the thought of any surgery (I have had 7

> operations before and all natural childbirth so I'm not a wimp - I

just

> hate undergoing more drugs, more chemical exposures, more fights

with

> doctors and staff, days of constantly being on guard with " are

those

> latex gloves? " and " I can't have latex adhesives on my skin " ,

lengthy

> recovery times... ugh!). I dread even more the thought of losing

my

> uterus - but most of the complaints I hear from women who have had

a

> hysterectomy seem like nothing in comparison to what I have been

living

> through for several years now.

>

> My best case scenario appears to be that the Lupron also shrinks my

> uterus down to a size in which I can undergo a vaginal hysterectomy

> rather than an abdominal. I think I know better than to hope for

that

> though....

>

> So, wise women, does this sound like a reasonable thought process?

What

> additional information should I have?

>

>

> Kathy from northern IL

[Guest guest]

Hi Kathy,

I don't know why your surgeon says you can't have a myo with a

fibroid your size. Mine was 10cm and my uterus was at 18weeks, and I

successfully had an abdominal myo last month.

Maybe you should get a 2nd opinion. Lupron is not a good option.

> Hi! I am yet another new member to the group. I was diagnosed 7

years

> ago and am now at " 17-18 weeks " or large melon sized uterus. Lots

of

> problems and complaints along the way... I'm sure you know the

drill.

>

> My PCP was annoyed but willing to let me 'wait and see' until

recently

> when he did a CBC and realized I was severely anemic. I had been

for at

> least two years but that is another issue....

>

> So... off to a gyne who, of course, is insisting on a hysterectomy

with

> all the usual threats about what could happen if I don't have one.

She

> wants to start me on LupronDepot for awhile and let me build up my

> blood, then surgery.

>

> No one seems to care that I have rectified many of my most severe

> bleeding issues in recent months using a regimen of vitamins and

> minerals. The doesn't solve the discomfort, cramping, etc.

though. It

> also doesn't solve the huge ball in my belly.

>

> I would like some help in evaluating my options. I have been doing

a

> lot of reading but that never tells the whole story. Let me know

if

> this sounds right:

>

> 1) I am at peace with not having more children and am still 8-10

years

> away from menopause.

>

> 2) A myo is not really an option as my largest is well beyond

the '12

> week' rule. Also, even if the largest was smaller, as I am not

> interested in further pregnancies and would probably have

additional

> fibroids in time I am trying to figure out what the advantage of a

myo

> would be over a 'one surgery and I am done' hysterectomy.

>

> 3) I have long been interested in getting a UFE but am concerned

because

> I also have Multiple Chemical Sensitivities and am allergic to

latex.

> Expecting to have PVC inside of me for the next 40-60 years with

MCS

> seems dangerous. Also, even at a 50% maximum reduction in fibroid

size

> I will still - always - have a huge uterus.

>

> (Has anyone here had an allergic reaction to the materials used in

an

> UFE? Anyone with similar issues? I found no reference to

allergies

> anywhere in the archives of this list!)

>

> 4) That seems to leave me one choice - going the route of the

dreaded

> hysterectomy. I dread the thought of any surgery (I have had 7

> operations before and all natural childbirth so I'm not a wimp - I

just

> hate undergoing more drugs, more chemical exposures, more fights

with

> doctors and staff, days of constantly being on guard with " are

those

> latex gloves? " and " I can't have latex adhesives on my skin " ,

lengthy

> recovery times... ugh!). I dread even more the thought of losing

my

> uterus - but most of the complaints I hear from women who have had

a

> hysterectomy seem like nothing in comparison to what I have been

living

> through for several years now.

>

> My best case scenario appears to be that the Lupron also shrinks my

> uterus down to a size in which I can undergo a vaginal hysterectomy

> rather than an abdominal. I think I know better than to hope for

that

> though....

>

> So, wise women, does this sound like a reasonable thought process?

What

> additional information should I have?

>

>

> Kathy from northern IL