Re: article on MRI as predictor for success ful emboliz...

[Guest guest]

,

Could you give us a little more information-

1.Your age, fertility issues-have you had children?

2. Symptoms prior to the lupron therapy? (ie, bulk, pressure,

frequent urination, back pain, heavy menstrual periods)

3. Type of tests you had prior to the lupron-- ultrasounds,

MRI's, endometrial biopsies, etc. What was the estimated size

of your uterus/fibroids, either by pelvic examination or ultrasound/or MRI?

What type of fibroids did you have?

4. Did you ask for Lupron based on internet research or was it

suggested to you by your physician? For what purpose were

you advised to have this therapy? Did you receive add-back therapy with the

lupron?

Did you experience any side-effects from the lupron?

5. Have you had a recent sonogram/MRI/pelvic indicating how fast,

how much they grew back? Are you experiencing severe discomfort/symptoms

from the fibroids since they grew back? Are the fibroids impinging on your

ureters?

6. On your 4/10 pre-op, I would ask: how many hysterectomies the

physician has performed, her/his familiarity with lupron/fibroids, whether

the size of your fibroids/uterus might require embolization to prevent

hemmorahge, if not do you need to donate blood for the hysterectomy.

7. Will you be at one of the large teaching hospitals? On the consent

form, indicate that only your gynecologist may perform the hysterectomy.

Reading your post, I became quite concerned when I read " my uterus

and fibroids are swollen and now up to my waist " .

Take good good care of yourself , make sure you have

lots of good support from family and excellent medical staff and facilities.

If the fibroids are now impinging on your ureters--that is extremely

important and must be dealt with.

Sincerely,

Marsha V. Weaver

[Guest guest]

--

After checking out all possible options, it looks like the best answer for me

may be plain old hyst after all. I know the general theme of this group is

to keep one's uterus no matter what, but sometimes, it just ain't gonna fly.

I'm not 100% sure yet if I'm going to go this route or wait them out until

menopause (I'm 45, and my mother wasn't menopausal until 55!). I would be

very grateful to hear from any women out there who did bikini-incision

hysterectomy and are glad they did... And please keep me posted on your

choices and decisions, too.

M.

[Guest guest]

--

After checking out all possible options, it looks like the best answer for me

may be plain old hyst after all. I know the general theme of this group is

to keep one's uterus no matter what, but sometimes, it just ain't gonna fly.

I'm not 100% sure yet if I'm going to go this route or wait them out until

menopause (I'm 45, and my mother wasn't menopausal until 55!). I would be

very grateful to hear from any women out there who did bikini-incision

hysterectomy and are glad they did... And please keep me posted on your

choices and decisions, too.

M.

[Guest guest]

,

After reading your response to my questions, I was

intrigued that the ultrasound indicated the uterine fibroids

were outside the uterus. Have you asked your Doctor:

1. If an MRI would indicate more clearly if the fibroids were

pedunculated subserous fibroids or subserous. If so, could

they be more easily removed, especially, pedunculateds(grow

on stalks) via hysteroscopy? I believe Reynolds used

this option--, are you still reading posts?

2. If there are both types, pedunculated subserous and

subserous fibroids, does he perform myomectomy?

With this procedure, there might be regrowth of the tumors,

but you are also closer to menopause. And also with

myomectomy, there is the issue of an incision?

These are the only other 2 options, I could think of, given

your medical description, that might present a uterine-sparing

option.

Otherwise, you sound very comfortable with your Doctor

and the hospital locations--situated so close to Washington DC.

I respect your feelings about your discomfort level with the

tumors inside your body and your desire to excise them totally.

Best wishes to you, on your decision. Isn't it amazing

how these tumors consume a person's life---you have certainly

given it your best investigation. Now, moving toward a decision...

One more item, most important, are you on federal health care

insurance? I was on my husband's GEHA as a dependent, thank

goodness, only by it was I able to look carefully at all my options.

Sincerely, Marsha

[Guest guest]

,

After reading your response to my questions, I was

intrigued that the ultrasound indicated the uterine fibroids

were outside the uterus. Have you asked your Doctor:

1. If an MRI would indicate more clearly if the fibroids were

pedunculated subserous fibroids or subserous. If so, could

they be more easily removed, especially, pedunculateds(grow

on stalks) via hysteroscopy? I believe Reynolds used

this option--, are you still reading posts?

2. If there are both types, pedunculated subserous and

subserous fibroids, does he perform myomectomy?

With this procedure, there might be regrowth of the tumors,

but you are also closer to menopause. And also with

myomectomy, there is the issue of an incision?

These are the only other 2 options, I could think of, given

your medical description, that might present a uterine-sparing

option.

Otherwise, you sound very comfortable with your Doctor

and the hospital locations--situated so close to Washington DC.

I respect your feelings about your discomfort level with the

tumors inside your body and your desire to excise them totally.

Best wishes to you, on your decision. Isn't it amazing

how these tumors consume a person's life---you have certainly

given it your best investigation. Now, moving toward a decision...

One more item, most important, are you on federal health care

insurance? I was on my husband's GEHA as a dependent, thank

goodness, only by it was I able to look carefully at all my options.

Sincerely, Marsha

[Guest guest]

Thank you for your interest, Marsha Weaver! I will answer your questions in

the order in which they were posed.

1. I am 47 with a wonderful son of 21 and a great daughter of almost

19. The only current concern, then, is that female members of my family do

not begin menopause until their mid-50s or later.

2. My symptoms which have become markedly increased over the years is

the bulk, the pressure, frequent urination, and constipation. Back pain and

heavy bleeding do not figure into my problems. However, the feeling of

carrying around a bag of rocks with my abdomen my center of gravity is

getting tiresome.

3. Prior to my August and then October Lupron injections, I underwent

ultrasound where the dimensions of the uterus were measured in centimeters

at 14.5 x 9.0 x 11. My metric conversion shows this is approximately 6 x 3

x 4 inches. One of the many fibroids measures in centimeters at 6.0 x 5.7 x

4 or 3 x 2 1/2 x 1 1/2 inches. The fibroids are on the outside of the

uterus.

4. My internet research and the doctor's suggestion led to the initial

Lupron injection. He advised that the shrinkage of the uterus and fibroids

that would result would make hysterectomy less traumatic. Simultaneously, I

began taking Caltrate with D and soy isoflavens which truly have prevented

the hot flashes I endured in the first few days postLupron. So, although I

visited the Lupron Victims Network, I cannot agree with their complaints.

5. My most recent ultrasound was conducting last July and showed that

although the kidneys and other organs were not squeezed yet, it was a matter

of time. So when I underwent a gynecological exam in August, hysterectomy

seemed the obvious choice and a Lupron injection was administered. The

resulting decrease in bloating was quite noticeable. The second Lupron

injection on October 13 should have worn off by midJanuary. Although I have

not yet had a period, I felt that the uterus and fibroids had exploded like

popcorn even bigger than before. I am 5'5'' and 125 pounds but feel like

the Goodyear blimp. The reason I do not look as bloated as I feel is

probably due to the abdominal exercises and dumbbell lifting regime of the

past few years, part of my self-improvement program.

6. My gynecologist, Dr. Maggid, works in the Rockville, land

suburbs of Washington, D.C. He has been affiliated with Dr. Spies of

town who continues to conduct embolization studies and with whom I

have spoken by phone and met at an FDA panel meeting. I have complete faith

in Dr. Maggid and only backed out of the previously scheduled surgery as I

learned of more and more alternatives.

7. I think I have my choice of area hospitals including Suburban in

Bethesda, land; Holy Cross in Silver Spring, land; and Shady Grove

Hospital in Rockville, land where Dr. Maggid will perform the operation.

Now, for some of my own thoughts . . . I am in great conflict now as the

prospect of regaining a feeling of lightness and suppleness is offset by

worry about resulting psychological and physiological changes in me. After

struggling as a single mother for almost 20 years, I have been in a

committed relationship with my soulmate for several years now. So I often

have the feeling that my female organs have been targetted for divine

retribution for enjoying life so much during the past few years. Due to

exercise and healthy eating, I feel that I have been looking better than

ever before, too, so the thought of abdominal scarring is disgusting to me.

The plastic surgeons with whom I have consulted refuse to do a tummy tuck

simultaneous to a hysterectomy citing excess physical trauma to patient.

However, the image of all that alien or distorted tissue inside my body, or

even the vestiges that embolization would leave, probably overrides

superficial vanity at this point.

So, while I have been silently reading e-mails from the uterine fibroids

group since I discovered it in the fall, I am now resigned that hysterectomy

may be best for my case. I do, however, welcome the opinions of the

wonderful women out there before this is a done deal!

> Re: article on MRI as predictor for

> success ful emboliz...

>

> ,

> Could you give us a little more information-

> 1.Your age, fertility issues-have you had children?

> 2. Symptoms prior to the lupron therapy? (ie, bulk, pressure,

> frequent urination, back pain, heavy menstrual periods)

> 3. Type of tests you had prior to the lupron-- ultrasounds,

> MRI's, endometrial biopsies, etc. What was the estimated size

> of your uterus/fibroids, either by pelvic examination or ultrasound/or

> MRI?

> What type of fibroids did you have?

> 4. Did you ask for Lupron based on internet research or was it

> suggested to you by your physician? For what purpose were

> you advised to have this therapy? Did you receive add-back therapy with

> the

> lupron?

> Did you experience any side-effects from the lupron?

> 5. Have you had a recent sonogram/MRI/pelvic indicating how fast,

> how much they grew back? Are you experiencing severe discomfort/symptoms

> from the fibroids since they grew back? Are the fibroids impinging on your

> ureters?

> 6. On your 4/10 pre-op, I would ask: how many hysterectomies the

> physician has performed, her/his familiarity with lupron/fibroids, whether

> the size of your fibroids/uterus might require embolization to prevent

> hemmorahge, if not do you need to donate blood for the hysterectomy.

> 7. Will you be at one of the large teaching hospitals? On the consent

> form, indicate that only your gynecologist may perform the hysterectomy.

>

> Reading your post, I became quite concerned when I read " my uterus

> and fibroids are swollen and now up to my waist " .

>

> Take good good care of yourself , make sure you have

> lots of good support from family and excellent medical staff and

> facilities.

> If the fibroids are now impinging on your ureters--that is extremely

> important and must be dealt with.

>

> Sincerely,

> Marsha V. Weaver

>

>

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