Re: Introduction....................

[Guest guest]

H i there

We seem to have some similarities in our cases although my

periods are behaving normally and my doctor has been friedndly

and told me (correctly) I had fibroids. I am sorry to hear your

Doctor has been lousy. I am 35, in the U.K. and my mother had

fibroids. I'm not currently eating differently but intend to.

I have a first Gynaeologicval appointment on 1st April. I also have

a : large, bulky and retroverted uterus 110mm length x

depth 49mm x width 88mm. With a large fibroid mass 62mm x

61 mm 53mm arising from the right aspect of the uterus and at

least one small intra mural fibroid of 14mm present in the

anterior wall. The endometrial thickness is 7mm and within

normal limits and normal appearance. The right ovary is

enlarged, measuring 77mmx 54 mm x 62mm and comprised of

a multi septated thin walled anechoic cyst. The largest

components of the cyst are 49mm 36mm and 22mm.. The left

ovary is normal. (28 x 29 x 16mm). NO other adnexal masses or

pelvic collection seen.

I would like to have children and cxertainly like to have the option.

I'm looking for advice and words of wisdom too!

Good luck and I'm happy to swap emails on this with anyone.

[Guest guest]

Hi

Have you discussed either UAE or myomectomy with your doctor? My own experience

w/my fibroids (one of which is as large as your large one) is that my first gyno

said " everything must go " (including ovaries) and " don't worry, you'll just go

on HRT afterwards and you'll feel fine " - and this from a woman!!!! The second

doctor said " Why have surgery? " and started to discuss all the options starting

with drugs and working on up through UAE, myomectomy, etc.

You're in the right place to get a lot of really useful information, even within

the last month of reading postings in this group (and in the embo group) I feel

200% more informed about a decision than I did before. You definitely should

look at the embo group too particularly with regard to fertility and

intervention.

btw, as you probably know, as a black woman you are statistically much more

likely to have large fibroids... and would you think that there would be any

studies trying to analyse why? .... as far as having family history of

hysterectomies, up until about 2 years ago most women got steered into that kind

of surgery at the first hint of issues, especially if they had already had their

children. Just about all of my aunts had them and regarded this as a positive?!

good luck and make sure you read the posting by (within the last week)

on the embo group.....

laurie

[Guest guest]

First of all, fire your doctor. You do not want a doctor who doesn't take

your symptoms seriously. I know Canada's system is national, but if you

can, make sure you see someone who thinks you know what's going on in YOUR

OWN BODY.

Secondly, my (former) gyn put me on Prometrium (progesterone) to control my

bleeding and my fibroids GREW. Progesterone can convert to estrogen and, as

we all know, estrogen makes fibroids grow.

Thirdly, if you have pelvic pain, I mean real pain not just discomfort, you

should see an MD who will get to the source of your pain. It could be

something serious. You do not want to find out five years from now that you

have end-stage cancer.

Good luck and keep asking questions, reading, being assertive.

Faryl

Introduction....................

> Hello,

>

> After many missed periods, and fights with my Dr.( who claimed it

> was all in my head) I finally got diagnosed with fibroids in April

> 2002. I have had 2 ultrasounds since then and all showed a

> worsening condition. As a 30yr old black female, I do have a

> family history of fibroids with most family getting hystorectomies

> (I will not do that).

>

> I have saught treatment from alternative methods and since Dec '02

> take:

> 100,000IU Beta Carotene per day

> 1/4 tsp Natural Progesterone cream days 15-28 of cycle 2x per day

> Castor Oil packs (when I remember)

>

> My latest u/s results are:

> uterus: large, bulky and retroverted, 10.1 x 5.6x 6.3cm

>

> fibroids:

> a)5.7x 4.9 x5.7cm (growth of 0.1 x0.6x 0.9 cm, subserosal)

> 1.6 x1.8 subserosal right posterior

> c) 1.5 x1.4x 1.6 cm submucosal right side myometrial

>

> endometrium: 1.3cm (growth of 0.2cm)

>

> ovaries: Right- 3.5x2.3x3.3cm, cyst of 2.2x1.5 cm (there was only

> follicular cysts 6mnths ago)

> Left- unremarkable

>

> My symptoms are weight gain (about 10-15lb), very round abdomen,

> sugar cravings, pelvic pain, hemmoroids, pressure in pelvis.

>

> So far, my Dr. has continued to recommend, a " wait and see "

> approach.with ultrasoudns every 6 months. I am so frustrated and

> scared. I just feel that this is a losing battle. My fertility is

> #1 concern to me. I'm not quite ready to try to conceive yet. Maybe

> another 2 years.

>

> Does anyone have any advice to offer? Words of wisdoms?

>

> I have tried to read as much as possible but I really need to hear

> from other women who have experienced fibroids themselves.

>

> I live in Toronto, Canada. I look forward to sharing with you all.

[Guest guest]

hello there,

You say that your uterus is 10 x 5, well I have you beat. My MRI that I did 2

weeks ago show that my uterus is 24 x 22. My largest fibroid is 14x10, the

second one is 10x9 and so on. I have had these things inside of me for over 7

years. I am now 38 years old and due to the fact that I did not want a

hysterectomy, and no doctor could guarantee the outcome of a myomectomy, I

suffered in silence.

I got so sick of people telling me to do it, do it. Well, it wasnt them who was

going to be traumatized. Thank goodness I hung in there. Next week I will be

having my endometrial biopsy, and once everything looks good, I am going in for

uterine artery embolism. I will be there at the crack of dawn as soon as they

schedule me.

I have endured a lot of heavy bleeding for over 5 years now. no pain at all. I

have been truly lucky, however I do have some constipation during certain times

of the month. Please, please find a new doctor. I wish I didnt take their

" wait and see " approach, but at the time, there was a limited amount of

information on alternative treatment for fibroids.

Please let us know what you decide to do. As for me, I will keep the group

informed of my progress.

ciao!

Trina

[Guest guest]

Trina,

Oh my--you've been suffering for 5 years now. How did you do it? I suffered

with heavy bleeding, clotting, long periods for a little over a year. I

couldn't take it. It was so debilitating. (I know there are worse things to

have, but this was bad enough.) I finally had a UAE in Nov. I was so glad I

did. Hope you get good results from your procedure, too. Let us know how it

goes.

[Guest guest]

Hi sbtvqueen,

I was in a similar place 2 months ago - 2 6x5x4 cysts (one on each

ovary), and 2 similar-sized fibroids. I didn't have much pain up

until about 2 months before my surgery, but it was getting

progressively worse. I chose to have a laparotomy, where they

removed both the fibroids and the cysts. The result is a 4.5 inch

vertical incision below my belly button (most surgeries have a

horizontal incision, but some have a vertical), tremendous pain

relief, and a good prognosis for being able to conceive (I'm nearly

34, no children, will need a c-section if any children are

forthcoming). I agree with the other writer who told you to " fire

your doctor " . You don't need a hysterectomy! You are wonderful for

standing up to your doctor. Watching and waiting can be useful, or

it can be harmful, but at a minimum I suggest a second opinion. If

you can have a myomectomy to remove the fibroids, and a cystectomy,

if necessary, to remove any troublesome cyst from your ovary, I

believe that's an excellent option.

I wish you the very best!

Janet

> Hello,

>

> After many missed periods, and fights with my Dr.( who claimed it

> was all in my head) I finally got diagnosed with fibroids in April

> 2002. I have had 2 ultrasounds since then and all showed a

> worsening condition. As a 30yr old black female, I do have a

> family history of fibroids with most family getting hystorectomies

> (I will not do that).

>

> I have saught treatment from alternative methods and since Dec '02

> take:

> 100,000IU Beta Carotene per day

> 1/4 tsp Natural Progesterone cream days 15-28 of cycle 2x per day

> Castor Oil packs (when I remember)

>

> My latest u/s results are:

> uterus: large, bulky and retroverted, 10.1 x 5.6x 6.3cm

>

> fibroids:

> a)5.7x 4.9 x5.7cm (growth of 0.1 x0.6x 0.9 cm, subserosal)

> 1.6 x1.8 subserosal right posterior

> c) 1.5 x1.4x 1.6 cm submucosal right side myometrial

>

> endometrium: 1.3cm (growth of 0.2cm)

>

> ovaries: Right- 3.5x2.3x3.3cm, cyst of 2.2x1.5 cm (there was only

> follicular cysts 6mnths ago)

> Left- unremarkable

>

> My symptoms are weight gain (about 10-15lb), very round abdomen,

> sugar cravings, pelvic pain, hemmoroids, pressure in pelvis.

>

> So far, my Dr. has continued to recommend, a " wait and see "

> approach.with ultrasoudns every 6 months. I am so frustrated and

> scared. I just feel that this is a losing battle. My fertility is

> #1 concern to me. I'm not quite ready to try to conceive yet. Maybe

> another 2 years.

>

> Does anyone have any advice to offer? Words of wisdoms?

>

> I have tried to read as much as possible but I really need to hear

> from other women who have experienced fibroids themselves.

>

> I live in Toronto, Canada. I look forward to sharing with you all.

[Guest guest]

Hi. There is a small fibroid support group in Toronto which you might want to

contact if you are not already aware of it. It meets once a month and should be

meeting next Thursday March 27 from 6 -8 PM. When I receive notice of the

meetings I post them to this list. I'll give you the particulars in the

meanwhile - : Meetings are at Women's Health in Women's Hands, 2 Carlton Street,

Suite 500, Toronto. For further info you can contact Judith or Germaine at 416

593 7655. The facility is also a community health clinic. Its primary clientele

are women of colour and a number of black women attend the meetings, many of

them having family histories of hysterectomy. Some have had treatment for

fibroids. Others are looking for information about coping with the condition and

treatment options. You might want to give a call and confirm the meeting date

for next Thurs if you're interested.

Jill

[Guest guest]

Laurie,

Thanks so much for telling me about the other group. I didn't know

about it. I will spend some time checking out the info there. I

think it is time to start rethinking my options!

I know some women who had myomectomies and the fibroids grew back in

less than a year! I am freaked out at this point. ALl I can do is

get info from others and read as much as I can and make a decision

from there.

RB

[Guest guest]

RB,

hey, you're welcome. I know how much better I have been feeling since I found

these groups and realized a) how much info was available and how much better

the decision-making process would be and c) how nice it was to have support. I

feel as though there is a limit to the amount of time I want to spend sharing my

thoughts and fears with friends and family members; it feels great to be able to

communicate with other women who are going through/have been through this

process in their lives.

The one thing that sticks out in my head though is that this whole situation is

just scandalous. The statistics for the number of women who have hysts is

obscene... no one knows what causes fibroids and I don't see evidence of a big

push to find out what the deal is either. Sigh. Your remark about a friend

whose fibroids grew back so quickly is a cautionary tale of sorts, in the sense

that I don't think anyone can tell what will happen to any particular

individual.

Anyway, near as I can figure, there just isn't enough data to be really

predictive about myo/embo and fertility. Since both procedures leave the uterus

intact, pregnancy is still possible. BTW, both procedures have a probability

that the fibroids will eventually come back, mostly if you are young. In my

case I'm not too concerned, being 49 the likelihood is that I will become

menopausal before any of them grow back to the point where they are a problem.

In your case, since you want to have kids, you may just have to live with the

reality of another procedure somewhere down the line. In particular with embo

since it's not 'surgery' per se at least the post-operative risks are lower and

the recovery is way, way faster.

laurie

sbtvqueen wrote:Laurie,

Thanks so much for telling me about the other group. I didn't know

about it. I will spend some time checking out the info there. I

think it is time to start rethinking my options!

I know some women who had myomectomies and the fibroids grew back in

less than a year! I am freaked out at this point. ALl I can do is

get info from others and read as much as I can and make a decision

from there.

RB

[Guest guest]

In a message dated 3/20/03 8:35:19 AM Pacific Standard Time, paulfar@...

writes:

> Progesterone can convert to estrogen and, as

> we all know, estrogen makes fibroids grow.

>

Faryl, on what evidence can you substantiate this claim?

Robin D.

[Guest guest]

I can't remember where I read it (I've read so many books/articles over the

years) and then an MD mentioned it and a little light bulb went on for me

because my fibroids had not grown in about 10 years. Then I did 6 mos. of

Prometrium and they had grown significantly.

I wish I had a better source for you. Sorry.

Faryl

Re: Introduction....................

> In a message dated 3/20/03 8:35:19 AM Pacific Standard Time,

paulfar@...

> writes:

>

> > Progesterone can convert to estrogen and, as

> > we all know, estrogen makes fibroids grow.