Re: RE: Unknown

[Guest guest]

Marsha,

Thank you for yourletter of suppport. You have helped me alot. Yes my

quality of life has been impacted. I seems that I eat, sleep and breath

fibroids. My husband and children must be sick of hearing about it. They are

so supportive about this.

I will try to answer all the questions and I have a few to ask myself. All

the doctors I've seen have given me pelvic exam, which are very painful for

me (no joking, they make me cry). Speaking of which that is when one doctor

told me that I must have been mentaly affected when I was younger and that

she could refer me to another kind of " doctor " . I was so insulted and

humiliated!!! Now I'm only mad at her for saying this. Anyway back to the

subject. Not one of the doctors that I have seen has mentioned the size of

my uterus. I didn't even know about how the compare our uterus to pregnacy

to mesure it. I found that out on the internet the other day. Another

question for the doctor. I have no idea where the fibroid is. Another good

question...I don't know what a endometrial biopsy is therefore I haven't had

one. What exactly is it??

Ever since I got pregnant for my first child I have had problems. Since

then I have been on iron supplements. Even today I need them otherwise I

would be so tired and lightheaded(even dizzy)

The pain I feel is sort of a light contraction. Pain in my back but mostly

cramping in my abdomen. Since this started in May, the doctors tried

different medication, trying to find relief. Finally one of the doctors

gave me a sample of Vioxx to try. During my periods I feel some pain but it

is more controled during the rest of the cycle.

No, the gynocologist did not mention adenomyosis. I don't even know what it

is. I will look it up at Carla's websit. More searching to do. I would

like to know more about it so that I could mention it to the gynocologist I

will be seeing.

As for AUE, I will go to the site you mention to see if they do this

procedure in Manitoba(where I live).Thanks for the info...Yes I have found

site that explain the procedure very well. One question is what are the

risks involved?

Myomectomy. I have read on one site of how it is difficult almost imposible

to remove fibroids that are in the wall of the uterus. Is this true or not?

What happens if the doctor cut too deep and reaches the uterine cavity? What

then? Can he repair that? Does he then do a hysterectomy?

Contact Reflex Analysis:I have been to the site quackwatch. They aren't too

impressed with this. I have been to many of there sites. Of course they

won't say it isn't good. In one of the sites I have posted a message talking

about fibroids. Asking questions. No one has replied yet! I will try to

access someone by e-mail to get answers. Good idea.

Thanks again for the info. The questions you asked and the ones I must find

answers for. I have some research to do. Thanks again I really appreciate

it.

Lucie

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Subject: RE: Unknown

Date: Mon, 23 Oct 2000 23:07:05 EDT

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From sentto-1029685-2082-972356846-lugregoire Mon Oct 23 20:14:43 2000

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Hello Lucie,

Welcome!

Lucie, I'm so very sorry to hear of the intense periods and pain

your having at age 35...your quality of life has surely been

impacted.

If you don't mind me asking questions, it may help

so that others can give personal anecdotes or refer

you to other websites with information. Of course,

there is no obligation to answer anything.

Your diagnosis was a enlarged uterus/ovaries. Did your

Dr. give you a pelvic exam and indicate in weeks, what

he thought your uterine size was, ie, 12 weeks or 14 weeks?

You had an ultrasound indicating an intramural fibroid, 2 inches.

Is it located low, near the cervix or at the top of the uterus in the

fundal portion?

You had a laparoscopic procedure to rule out endometriosis.

Have you had an endometrial biopsy? Are you anemic?

Can you describe the pain? Is it sharp, knifelike?

Did your gynecologist give you any support on this issue?

Did he prescribe the vioxx and is it helping?

Did your gynecologist mention the possibility of

adenomyosis? This is a form of internal endometriosis

of the uterus. You can take a closer look at this

disease on Carla Dionne's website, uterinefibroids.com,

go to the Related Health Link and access the

adenomyosis link. Adenomyosis is a difficult

disease to diagnose--enlargement of uterus can be related to this condition

and one can have both adenomyosis and uterine fibroids.

If there are Members who have adenomyosis, please post as

to your diagnosis, symptoms, recommendations for treatment, and

post-treatment results.

A small percentage of uterine fibroids can be cancerous

(leiomyosarcomas), the majority of uterine fibroids are benign.

Uterine Artery Embolization (UAE) also known as Uterine Fibroid

Embolization (UFE) is undergoing clinical trials in Canada:

http://www.utoronto.ca/interv/frames2/patinfo/clininfo.htm

Have you found some good sites on UAE that answered your

questions?

There are many women on board who can provide personal

infomation about myomectomy. There have been some

good posts recently on the topic.

It's very normal to try to " shrink " your fibroids via

herbal remedy or diet or pills or what your sister-in-law has

recommended, and of course, in a very well-meaning way.

You may want to look at another website addressing

Contact Reflex Analysis:

http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/cra.html

I would contact them and ask how many women have successfully

shrunk their fibroids, if you can access them by e-mail or telephone to talk

with

them personally. One of the problems with fibroids is the large vascular

systems of feeder vessels they can develop after a certain size.

It sounds like your fibroid is definitely symptomatic--

I am concerned about the pain your experiencing, Lucie.

I hope with the second consult, you can get a better diagnosis

and others on uterinefibroidsegroups that had similar

type pain will post.

Many thoughts for relief of your pain and healing,

Marsha

We have many women on uterine fibroids that

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[Guest guest]

In a message dated 10/25/00 1:12:34 PM Eastern Daylight Time,

lugregoire@... writes:

> One question is, my sister tells me she had endometriosis(she

> had a hysterectomy in January) but she also tells me that they discovered

it

>

> when she had an internal biopsy. To me that sounds more like adenomyosis.

> What do you think?

>

Lucie,

Did your sister request a copy of her medical records from the surgeon

including the pathology reports? Such reports might include a more

complete picture for her if she is interested. For a long time, adenomyosis

was diagnosed, post-hysterectomy. It appears that MRI is becoming

a more reliable method of diagnosing adenomyosis. Has anyone had a

diagnosis of adenomyosis with ultrasound?

I mentioned the adenomyosis initially because you were presenting

with such uncomfortable pain. But uterine fibroids as you read on that

link can cause pain too. And, tests indicated yours to be an intramural

fibroid.

I'm glad your in contact to check on UAE/UFE via clinical trials.

Hopefully

the participating physicians are board-certified, and very well experienced

with UAE/UFE. Additionally, your

gynecologist should be supportive, aware that your being considered

as a candidate should you elect to go with UAE/UFE so that she/he can

carefully monitor you, post-UFE or just like any other surgical procedure

that might present with post-infection episode. In my case post-UFE,

I had a 6 month and 12 month MRI to monitor and determine shrinkage of my 15

cm

intramural fibroid and the results were forwarded to my Gynecologist.

In addition, I had a one year pelvic exam from the gynecologist and

upon manipulation determined my uterus had shrunk from a 17-18 week

size to 12 week size uterus. With a smaller fibroid, Lucie, your results

should be much better. Will the clinical protocol include monitoring post-UFE

for a year?

monitoring is part of the clinical protocol. Will you need private insurance

in Canada to pay for a clinical trial?

Is myomectomy a popular procedure in Canada?

At age 48, UAE/UFE has been a good procedure for me. 20 months post

and I am grateful to have a full functioning uterus. I hope to go into

natural menopause in the next few years...

As with any procedure, however, results can differ dramatically, individual by

individual. And of course, work with your Dr.

Keep us informed of your progress, Lucie.

Marsha

Best wishes, Marsha