RE: Let me introduce myself....

[Guest guest]

Meg,

What part of the country do you live?

[Guest guest]

Meg,

What part of the country do you live?

[Guest guest]

Meg, Hi! So sorry to hear about those migraines. I get them also

especially around my period time. I injured my neck falling down

roller skating. I guess it was a whiplash. I walk out of there

just fine, but as months past, I got achey, shoulders and neck, then

the headaches started on a daily basis. Awful. I went for physical

therapy, then after a year, I finally broke down and went to a

chiropracter. It's been like 5 years. Through on and off physical

therapy, and chiropracters, it's gotten much better, but I still can

get the headaches/migraines during a period. Still go to the

chriopracter about once a month.

About your fibroids, your symtoms don't sound that severe. I

would not rush into a hysterectomy!!!! LIke 98% of all gyno's will

tell you that you need this off the bat!!!!! How crazy is that?

Thats their answer for everything. It's sick. How often are you

peeing at night? I have that symtom also. I had a 10cm fibroid

with major bleeding and hemoraging. Finally end of Jan, I went

ahead with the UFE. Of course the gynos said hysterectomy which was

absolutely out of the question!! I've had wonderful results and my

periods are so managable now. I still get up at night to pee, like

3 times, hopefully over time the fibroid will continue to shrink.

This takes time. I was not happy with my choices, hysto, myo or UFE

but after all my research, UFE was my only choice and my bleeding

got so bad that I had to do something and by the process of

elimination, it was UFE> I found the yahoo embo group who was a

great support throughout the whole entire process.

Good luck in your process, you could look into the embo group

also. It's a great resourse if you want to look more into UFE.

Your bleeding does not sound that bad. I was told that if I'm

changing a super tampon every hour, thats a sign that it could be

time to do something.

Just remember, if you go the hysto route, you don't want to trade

1 set of problems for a whole other.

Jen

[Guest guest]

Meg, Hi! So sorry to hear about those migraines. I get them also

especially around my period time. I injured my neck falling down

roller skating. I guess it was a whiplash. I walk out of there

just fine, but as months past, I got achey, shoulders and neck, then

the headaches started on a daily basis. Awful. I went for physical

therapy, then after a year, I finally broke down and went to a

chiropracter. It's been like 5 years. Through on and off physical

therapy, and chiropracters, it's gotten much better, but I still can

get the headaches/migraines during a period. Still go to the

chriopracter about once a month.

About your fibroids, your symtoms don't sound that severe. I

would not rush into a hysterectomy!!!! LIke 98% of all gyno's will

tell you that you need this off the bat!!!!! How crazy is that?

Thats their answer for everything. It's sick. How often are you

peeing at night? I have that symtom also. I had a 10cm fibroid

with major bleeding and hemoraging. Finally end of Jan, I went

ahead with the UFE. Of course the gynos said hysterectomy which was

absolutely out of the question!! I've had wonderful results and my

periods are so managable now. I still get up at night to pee, like

3 times, hopefully over time the fibroid will continue to shrink.

This takes time. I was not happy with my choices, hysto, myo or UFE

but after all my research, UFE was my only choice and my bleeding

got so bad that I had to do something and by the process of

elimination, it was UFE> I found the yahoo embo group who was a

great support throughout the whole entire process.

Good luck in your process, you could look into the embo group

also. It's a great resourse if you want to look more into UFE.

Your bleeding does not sound that bad. I was told that if I'm

changing a super tampon every hour, thats a sign that it could be

time to do something.

Just remember, if you go the hysto route, you don't want to trade

1 set of problems for a whole other.

Jen

[Guest guest]

Hi Meg,

I'm very sorry to hear about the dreadful time that you've been

having with those horrendous migraines. Iam, however, even more

appalled by the, in my opinion, irresponsible and criminal advise

that you have received from the so-called professionals!

Oh on earth can a hysterctomy CURE migraines?!!! I really thought

I'd heard it all but this really takes the biscuit!!! A 5 day period

with a heavy flow where you change every 3 hours DOES NOT constitute

grounds for the removal of your uterus. Even with the anaemia in the

equation, ( which incidentally sounds as if it was only mild, if you

were able to build your levels up in less than month) is not a good

enough reason for such a drastic operation.

Your awful experience with the BCP's are indicative of the kind of

bad bleeding that many sufferers of fibroids finds forces them into

surgery. But they experience this all the time,not just as a one-off

like you have had because of the pills. The effects of the BCP's not

only on your bleeding but your migraines, shows quite clearly that

you are suffering from some kind of hormonal imbalance.

If I were you I'd find an Endocrinolgist, which is a specialist who

deals with all reproductive, hormonal and fertility issues.

Whatever, you do PLEASE dont let this bad experience frighten you

into having this unneccessary operation.

I'm really sorry that you had to go through such a traumatic

experience. Once again this is yet another example of how the

medical rpofession is failing women so very, very badly.

I hope that the bleeding has subsided now and that you are feeling

better.

Take care,

xx

[Guest guest]

Hi Meg,

I'm very sorry to hear about the dreadful time that you've been

having with those horrendous migraines. Iam, however, even more

appalled by the, in my opinion, irresponsible and criminal advise

that you have received from the so-called professionals!

Oh on earth can a hysterctomy CURE migraines?!!! I really thought

I'd heard it all but this really takes the biscuit!!! A 5 day period

with a heavy flow where you change every 3 hours DOES NOT constitute

grounds for the removal of your uterus. Even with the anaemia in the

equation, ( which incidentally sounds as if it was only mild, if you

were able to build your levels up in less than month) is not a good

enough reason for such a drastic operation.

Your awful experience with the BCP's are indicative of the kind of

bad bleeding that many sufferers of fibroids finds forces them into

surgery. But they experience this all the time,not just as a one-off

like you have had because of the pills. The effects of the BCP's not

only on your bleeding but your migraines, shows quite clearly that

you are suffering from some kind of hormonal imbalance.

If I were you I'd find an Endocrinolgist, which is a specialist who

deals with all reproductive, hormonal and fertility issues.

Whatever, you do PLEASE dont let this bad experience frighten you

into having this unneccessary operation.

I'm really sorry that you had to go through such a traumatic

experience. Once again this is yet another example of how the

medical rpofession is failing women so very, very badly.

I hope that the bleeding has subsided now and that you are feeling

better.

Take care,

xx

[Guest guest]

xx: Thanks for your warm, kind reply. You can definitely get me on a

very tall soapbox about hysterecomies performed with no medical necessity. I

need to correct one misconception. Not one physician has ever even remotely

suggested I have a hysterectomy to " cure my migraines. " My fault is how I

drafted my message. During my gyn consults, the subject came up of removing

the ovaries or keeping them in the context of the effect either move would

have on my migraines, as my treating physicians all know my migraines are

disabling me at this point from working and the situation must improve, not

worsen. However, I have had medical colleagues tell me to get a hysterectomy

" to cure my migraines. " That anyone would tell me this, let alone women, is

appalling! One of these colleagues was a supervisor! Great suggestion to

consult with an endocrinologist. I know my other physicians will see this as

an affront to their egos, but I have cried " Hormones! " for years now and

they will just have to deal with my intent to direct my own medical care.

During one visit when I brought up this need for a endo referral, I was told

" I believe we can address that in the future. Let's not go there just now "

(as I was handed yet another prescription). Translate managed care, ego? I

found out just recently I can self refer! Just bought a great book by

Vliet, MD, Screaming to Be Heard: Hormone Connections Women

Suspect and Doctors Still Ignore. This book should be required reading for

all physicians!

Jenficks: I have seen firsthand in my profession how many women suffer

long-term hyst-related problems--serious problems that stay with them for

the rest of their life, and I'm not talking about adjusting HRT. It seems as

though having an unnecessary hyst opens up the floodgates for years of

either subsequent surgeries, diagnoses, or diseases. I have often wondered

if the diseases were as a direct result of a major assault on the immune

system when a major organ supplying life-altering hormones was removed.

Meg

From: uterinefibroids

Date: Monday, May 03, 2004 07:10:10 AM

To: uterinefibroids

Subject: Re: Let me introduce myself....

>If I were you I'd find an Endocrinolgist, which is a specialist who

>deals with all reproductive, hormonal and fertility issues.

[Guest guest]

Okay, so besides all the symptoms described, you are always tired and

have to adjust your schedule because of these heavy flows. I've been

through what you described but had a myo three months ago - UFE was not

an option for my case. Now I am bouncing around with plenty of energy.

My life is now mine! I m 47, had two (lucky me, only two) gyns who told

me that I needed a hyst. Here are my recommendations:

1) Seems like you want to choose a wait and see approach, but be ready

for surgery if you suddenly have nonstop heavy bleeding, which was my

case. If you have lots of clots, check with your doctor about the D&C

procedure. It will temporary relieve the bleeding. In the meanwhile,

you may want to take these steps:

1) Spend time and read as many posts as possible from this group. Try

starting from January, there are many valuable info such as women with

many large fibroids have myos. Also check the embo group for postings

on UFEs.

2) Go for MORE opinions, but not to any doctors. You need to find out

first whether the doctor believes in myo and UFE and the wait and see

approach - if hyst is the first recommended option, and others are just

barely mentioned, run.

Where do you live? Perhaps someone from this group can recommend a

doctor for you. I understand that it's not difficult to perform a hyst,

and it takes a skilled surgeon to perform a myo. My former gyn told me

that she could try to perform a myo on me but there would be lots of

blood lost and more likely it would turn into a hyst. I learned that

that was not because of my condition but because of her mediocre skill.

I was extremely anemic and bleed heavily for almost 30 days right before

my surgery, but I needed no blood transfusion because there was little

or no blood lost during the surgery. Oh yes, I was confident because I

found a good doctor/surgeon who cared for me as a patient, who answered

all my questions and told me that he never had to convert a myo into a

hyst.

3) Migraine - There was time that I was so weak from my anemic that I

had to lay down on my kitchen floor. I could not even sit up. The next

few days I just ate iron-rich food and took heavy doses of prescribed

iron tablets, and I had one solid day of headache, from morning till

night. more headaches after that but all is gone now.

You want to know all your options and their issues and short/long term

complications. If I were you, I'll find a doctor that I can be

comfortable with.

Jackie

[Guest guest]

Would scheduling an appointment with an RE be my best chance to locate a

surgeon skilled in myo?

I have heard of anemia as serious as yours--not being able to move. It can

literally kill. It creeps up on people more than they know. I was never

white, " never had what I thought the " class symptoms " would be. If I would

have guessed anything, I would have guessed thyroid abnormalities.

After I began eating iron-rich food and taking twice daily prescribed iron (

in the form of ferrous sulfate), I was considered out of anemic range within

a month. However, last we checked my iron stores were still growing.

My chronic daily headaches (daily = 24/7 every day in some form or another)

next to disappeared with iron therapy. Now I get a headache as often as the

general population, if there is such a thing! My migraines, I would guess,

are about 80% hormonal. No family history that I am aware of, but they are

also triggered by some non-hormonal causes at times. I can take migraines

at times " -- it's the ovulatory and perimenstrual ones that hit me hard and

every single month--no month fear of severe pain in over five years.

Thanks for your great suggestions!

Meg

-- RE: Let me introduce myself....

Okay, so besides all the symptoms described, you are always tired and

have to adjust your schedule because of these heavy flows. I've been

through what you described but had a myo three months ago - UFE was not

an option for my case. Now I am bouncing around with plenty of energy.

My life is now mine! I m 47, had two (lucky me, only two) gyns who told

me that I needed a hyst. Here are my recommendations:

[Guest guest]

Meg,

Yes, there were several posts on this board recommended that we talk to

an RE. Also, there is a list of questions posted here (I don't remember

when but I think it's this year) for doctors.

My believe is that I am the consumer and doctors are providing me paid

services. I need to be satisfied with their services/skills. So I did

run down the list with my doctors. The doctor who did my surgery is not

an RE, but he was recommended by a member of this list. He answered all

my questions very sincerely.

Jackie

-----Original Message-----

From: gal522

Would scheduling an appointment with an RE be my best chance to locate a

surgeon skilled in myo?

I have heard of anemia as serious as yours--not being able to move. It

can literally kill. It creeps up on people more than they know. I was

never

white, " never had what I thought the " class symptoms " would be. If I

would have guessed anything, I would have guessed thyroid abnormalities.

After I began eating iron-rich food and taking twice daily prescribed

iron ( in the form of ferrous sulfate), I was considered out of anemic

range within a month. However, last we checked my iron stores were still

growing.

My chronic daily headaches (daily = 24/7 every day in some form or

another) next to disappeared with iron therapy. Now I get a headache as

often as the general population, if there is such a thing! My

migraines, I would guess, are about 80% hormonal. No family history

that I am aware of, but they are also triggered by some non-hormonal

causes at times. I can take migraines

at times " -- it's the ovulatory and perimenstrual ones that hit me hard

and every single month--no month fear of severe pain in over five years.

Thanks for your great suggestions!

Meg