Re: New to Group -- Feedback on UAE

April 5, 2001

Dear Celeste,

Thank you so very much -- this is exactly the kind of

thing I was looking for. You can read all you want

online or in magazines, but there's nothing like

hearing about what it's really like to go through this

procedure. I want to hear it all, the good and the

bad, so that I can make an informed decision. Of

course, I have the option of doing nothing and just

living with the darn things, since they aren't causing

bleeding, just discomfort, but I don't want to! I

hate the fact that I have these THINGS growing inside

me. I am a slender woman and at certain times of the

month, I can actually see them bulging in my abdomen.

Scared the heck out of my boyfriend when he ran his

hand over me several months ago and felt this hard

lump -- he made me go to emergency that same day

<sigh>.

Anyway, keep those reports coming -- I really, really

appreciate this! Thanks -- a

--- celeste keane wrote:

> Hi a,

> My name is Celeste, 38 years old. Today, I am one

> week post UFE. I honestly do not know where to

> begin.

> I suppose there are still many things you will want

> to know about the procedure as well as the anecdotal

> posts. My experience was extremely positive

> beginning

> with an excellent consult with the doctor and staff

> at

> the hospital. We(my husband and me)arrived at the

> hospital at7:00am We live about an hour away. I

> already had my MRI so knew what to expect in terms

> of

> location and size of fibroids. I waited for may be

> twenty minutes and was prepped. The recovery nurse

> told me that there were several things that needed

> to

> happen prior to the procedure. They started an IV,

> just glucose, put in a catheter,yuk, and I think

> started pain meds. The doctor came in shortly there

> after to talk with us. He went through again some

> of

> the risks and I signed informed consent. I was in

> the

> " procedure theater " about 8:45. Several additional

> things happened and the procedure began. I was

> fully

> alert although I literally felt NO pain. The IR

> talked with me the entire time, explaining each

> thing

> as he did it and instructing me on what I would see

> on the monitor. Thats' right, I watched the entire

> procedure on the monitor as well. I felt a warm

> sensation when they injected dye and at the end,

> 9:30,

> I distinctly recall cramping which they responded to

> promptly with an adjustment in pain meds. I returned

> to recovery very drugged and remained there for

> several hours. When able, the doctor agreed with my

> decision to go home and I was back in my own bed by

> 8:30 that night.

>

> We were sent home with several different types of

> medication. I had two narcotic pain medications, an

> antibiotic, something for constipation, and an

> anti-inflamatory. I had a difficult time for the

> next

> 36 hours as the pain management regimen was not

> effective and the doctor was away. We did

> eventually

> reach the person covering for him and adjusted the

> medications accordingly. After the adjustment

> things

> were much better and I stopped taking all

> medications

> day five post procedure. Today, I feel pretty good.

>

> I can't sleep much but have little to no pain. I do

> have a full feeling in my lower abdomen but that is

> it. I was pretty nervous going in and feel so happy

> with my decision. Good luck and do not delay

> getting

> information and meeting with doctors.

> Celeste --- " a S. " wrote:

> > I am new to this group; my name is a, and I'm

> > 43. Recently I was

> > diagnosed with two fibroid tumors -- one is 5 cm,

> > and the other is 10

> > cm. I am a candidate for UAE, and I would like to

> > try this, as I

> > don't want a hysterectomy. Not because of the

> > resulting infertility

> > (I had my tubes tied, so that's not an issue), but

> > it just seems a

> > hysterectomy is a very drastic solution. I do not

> > suffer from

> > excessive bleeding, but I do have pain and

> cramping,

> > frequent

> > urination and sometimes have pain/spotting with

> > intercourse. I like

> > the idea of minimally invasive surgery and reduced

> > recovery time.

> >

> > I would like to hear from the women who have

> > undergone this

> > procedure -- what was it like? How did you feel?

> > Did it work - have

> > your fibroids shrunk? Would you recommend it?

> Any

> > feedback will be

> > sincerely appreciated; naturally, my gynecologist

> is

> > pushing

> > hysterectomy, because that's the easiest and most

> > familiar procedure,

> > but I'm just not ready to accept that solution

> yet.

> >

> > Thanks, everyone --

> > a

> >

April 5, 2001

Dear Celeste,

Thank you so very much -- this is exactly the kind of

thing I was looking for. You can read all you want

online or in magazines, but there's nothing like

hearing about what it's really like to go through this

procedure. I want to hear it all, the good and the

bad, so that I can make an informed decision. Of

course, I have the option of doing nothing and just

living with the darn things, since they aren't causing

bleeding, just discomfort, but I don't want to! I

hate the fact that I have these THINGS growing inside

me. I am a slender woman and at certain times of the

month, I can actually see them bulging in my abdomen.

Scared the heck out of my boyfriend when he ran his

hand over me several months ago and felt this hard

lump -- he made me go to emergency that same day

<sigh>.

Anyway, keep those reports coming -- I really, really

appreciate this! Thanks -- a

--- celeste keane wrote:

> Hi a,

> My name is Celeste, 38 years old. Today, I am one

> week post UFE. I honestly do not know where to

> begin.

> I suppose there are still many things you will want

> to know about the procedure as well as the anecdotal

> posts. My experience was extremely positive

> beginning

> with an excellent consult with the doctor and staff

> at

> the hospital. We(my husband and me)arrived at the

> hospital at7:00am We live about an hour away. I

> already had my MRI so knew what to expect in terms

> of

> location and size of fibroids. I waited for may be

> twenty minutes and was prepped. The recovery nurse

> told me that there were several things that needed

> to

> happen prior to the procedure. They started an IV,

> just glucose, put in a catheter,yuk, and I think

> started pain meds. The doctor came in shortly there

> after to talk with us. He went through again some

> of

> the risks and I signed informed consent. I was in

> the

> " procedure theater " about 8:45. Several additional

> things happened and the procedure began. I was

> fully

> alert although I literally felt NO pain. The IR

> talked with me the entire time, explaining each

> thing

> as he did it and instructing me on what I would see

> on the monitor. Thats' right, I watched the entire

> procedure on the monitor as well. I felt a warm

> sensation when they injected dye and at the end,

> 9:30,

> I distinctly recall cramping which they responded to

> promptly with an adjustment in pain meds. I returned

> to recovery very drugged and remained there for

> several hours. When able, the doctor agreed with my

> decision to go home and I was back in my own bed by

> 8:30 that night.

>

> We were sent home with several different types of

> medication. I had two narcotic pain medications, an

> antibiotic, something for constipation, and an

> anti-inflamatory. I had a difficult time for the

> next

> 36 hours as the pain management regimen was not

> effective and the doctor was away. We did

> eventually

> reach the person covering for him and adjusted the

> medications accordingly. After the adjustment

> things

> were much better and I stopped taking all

> medications

> day five post procedure. Today, I feel pretty good.

>

> I can't sleep much but have little to no pain. I do

> have a full feeling in my lower abdomen but that is

> it. I was pretty nervous going in and feel so happy

> with my decision. Good luck and do not delay

> getting

> information and meeting with doctors.

> Celeste --- " a S. " wrote:

> > I am new to this group; my name is a, and I'm

> > 43. Recently I was

> > diagnosed with two fibroid tumors -- one is 5 cm,

> > and the other is 10

> > cm. I am a candidate for UAE, and I would like to

> > try this, as I

> > don't want a hysterectomy. Not because of the

> > resulting infertility

> > (I had my tubes tied, so that's not an issue), but

> > it just seems a

> > hysterectomy is a very drastic solution. I do not

> > suffer from

> > excessive bleeding, but I do have pain and

> cramping,

> > frequent

> > urination and sometimes have pain/spotting with

> > intercourse. I like

> > the idea of minimally invasive surgery and reduced

> > recovery time.

> >

> > I would like to hear from the women who have

> > undergone this

> > procedure -- what was it like? How did you feel?

> > Did it work - have

> > your fibroids shrunk? Would you recommend it?

> Any

> > feedback will be

> > sincerely appreciated; naturally, my gynecologist

> is

> > pushing

> > hysterectomy, because that's the easiest and most

> > familiar procedure,

> > but I'm just not ready to accept that solution

> yet.

> >

> > Thanks, everyone --

> > a

> >

April 5, 2001

Dear Celeste,

Thank you so very much -- this is exactly the kind of

thing I was looking for. You can read all you want

online or in magazines, but there's nothing like

hearing about what it's really like to go through this

procedure. I want to hear it all, the good and the

bad, so that I can make an informed decision. Of

course, I have the option of doing nothing and just

living with the darn things, since they aren't causing

bleeding, just discomfort, but I don't want to! I

hate the fact that I have these THINGS growing inside

me. I am a slender woman and at certain times of the

month, I can actually see them bulging in my abdomen.

Scared the heck out of my boyfriend when he ran his

hand over me several months ago and felt this hard

lump -- he made me go to emergency that same day

<sigh>.

Anyway, keep those reports coming -- I really, really

appreciate this! Thanks -- a

--- celeste keane wrote:

> Hi a,

> My name is Celeste, 38 years old. Today, I am one

> week post UFE. I honestly do not know where to

> begin.

> I suppose there are still many things you will want

> to know about the procedure as well as the anecdotal

> posts. My experience was extremely positive

> beginning

> with an excellent consult with the doctor and staff

> at

> the hospital. We(my husband and me)arrived at the

> hospital at7:00am We live about an hour away. I

> already had my MRI so knew what to expect in terms

> of

> location and size of fibroids. I waited for may be

> twenty minutes and was prepped. The recovery nurse

> told me that there were several things that needed

> to

> happen prior to the procedure. They started an IV,

> just glucose, put in a catheter,yuk, and I think

> started pain meds. The doctor came in shortly there

> after to talk with us. He went through again some

> of

> the risks and I signed informed consent. I was in

> the

> " procedure theater " about 8:45. Several additional

> things happened and the procedure began. I was

> fully

> alert although I literally felt NO pain. The IR

> talked with me the entire time, explaining each

> thing

> as he did it and instructing me on what I would see

> on the monitor. Thats' right, I watched the entire

> procedure on the monitor as well. I felt a warm

> sensation when they injected dye and at the end,

> 9:30,

> I distinctly recall cramping which they responded to

> promptly with an adjustment in pain meds. I returned

> to recovery very drugged and remained there for

> several hours. When able, the doctor agreed with my

> decision to go home and I was back in my own bed by

> 8:30 that night.

>

> We were sent home with several different types of

> medication. I had two narcotic pain medications, an

> antibiotic, something for constipation, and an

> anti-inflamatory. I had a difficult time for the

> next

> 36 hours as the pain management regimen was not

> effective and the doctor was away. We did

> eventually

> reach the person covering for him and adjusted the

> medications accordingly. After the adjustment

> things

> were much better and I stopped taking all

> medications

> day five post procedure. Today, I feel pretty good.

>

> I can't sleep much but have little to no pain. I do

> have a full feeling in my lower abdomen but that is

> it. I was pretty nervous going in and feel so happy

> with my decision. Good luck and do not delay

> getting

> information and meeting with doctors.

> Celeste --- " a S. " wrote:

> > I am new to this group; my name is a, and I'm

> > 43. Recently I was

> > diagnosed with two fibroid tumors -- one is 5 cm,

> > and the other is 10

> > cm. I am a candidate for UAE, and I would like to

> > try this, as I

> > don't want a hysterectomy. Not because of the

> > resulting infertility

> > (I had my tubes tied, so that's not an issue), but

> > it just seems a

> > hysterectomy is a very drastic solution. I do not

> > suffer from

> > excessive bleeding, but I do have pain and

> cramping,

> > frequent

> > urination and sometimes have pain/spotting with

> > intercourse. I like

> > the idea of minimally invasive surgery and reduced

> > recovery time.

> >

> > I would like to hear from the women who have

> > undergone this

> > procedure -- what was it like? How did you feel?

> > Did it work - have

> > your fibroids shrunk? Would you recommend it?

> Any

> > feedback will be

> > sincerely appreciated; naturally, my gynecologist

> is

> > pushing

> > hysterectomy, because that's the easiest and most

> > familiar procedure,

> > but I'm just not ready to accept that solution

> yet.

> >

> > Thanks, everyone --

> > a

> >

April 6, 2001

I want to encourage you to get another opinion from at least one other

doctor. I also have a fibroid inside the uterus and I am scheduled to have

it removed hysteroscopically removed in 3 weeks. This is usually an option

for those that have fibroids entirely within the uterine cavity. You guys

should seek out a doctor experienced in this procedure to see if it is an

option for you. If the fibroid is too large, the doctor may want to try

Lupron or a similar drug to shrink it before surgery to increase the odds

of success. Hysteroscopy is less invasive than a traditional myomectomy as

no incision is made, the fibroid is removed through a hysterocope and this

is usually done on an out patient basis.

I have talked to several doctors willing to do this procedure for me and

not one of them has ever suggested that they may have to remove the

uterus. I think you both would feel better if you got another doctor's (or

2 o 3) opinions about removal and the likelihood of removing the

uterus--this advise just doesn't sit right with me. If there are some

special circumstances in your wife's case that makes this true, wouldn't

you rather hear it confirmed by several other professionals before you

agree to this possibility?

You also mentioned UAE in your message, it is a bit unknown whether this

may affect fertility so you may not want to take that risk.

You are so good to be actively involved in your wife's research--I applaud

your involvement and support.

Good luck to you both.

Sydney

At 07:44 PM 4/5/01 -0700, you wrote:

>and she

>found out yesterday that she has a very large fibroid

>tumor growing inside of her uterus. I am writing

>since she does not have much time to sift through the

>emails. The doc wants to perform surgery to remove

>the tumor, but says that he may have to remove the

>uterus if it is damaged.

April 6, 2001