Re: About doctors, diagnosis, infertility, hysterectomy threats and utter despair

August 6, 2001

Oh dear, I feel so sad for you. I wonder if you could come to the USA and

see a specialist here?? I don't know what your financial situation is but I

can feel your despiration. How is medical care there?? I would'nt rush into

a hysterectomy either have they talked about a myomectomy??? I don't know if

a embolization would be good for you to have if you still want children. I

am not a doctor but I do know there are other choices out there maybe its

harder in your part of the world to have choices I don't know but I wish you

luck...Rose

August 6, 2001

Hi - welcome to the group. I hope you can find courage in the

women here who have to deal with ignorant doctors and their lack of

understanding about fibroids. Don;t give up! It's great that you are

doing research on your own because you can have the power to

contradict the doctors who tell you that you only have one option.

I'm 27, no children yet, and also have a 20 week size uterus with one

very large fibroid and other smaller fibroids. My doctor never even

mentioned taking my uterus as an option. I'm having a myomectomy in

late August, which is pretty much the only option if I want to have

children later. Maybe you could look in the internet and find a

doctor in your area that could perform this surgery? Most doctors

push for a hysterectomy because the don't want to admit that they

don't know how to do a myomectomy, but it's a pretty common surgery,

and there's got to be a doctor that can do this for you. Maybe

instead of a gyn, a doctor who specializes in infertility? I'm so

sorry you have to deal with such jerks- please feel free to write to

me if you have any more questions or even if you just want to write.

Holly- slicey91@...

-- In uterinefibroids@y..., " Mortil " <kristinmortil@k...>

wrote:

> Hi.

> This is my first mail to the list - have been reading for about a

month. I´m 31, no children, live in Denmark.

> Now I thought I would vent my total frustration instead of crying

and crying.

> Please bear with me if I don´t make sense, my head is spinning...

> Short version: I have just come home from ultra sound at the

hospital and they want to remove my uterus. The thing I want most in

life is children. And I´m extremely scared.

>

> The very long story:

> I went to the doctor the 20th of June because I felt a lump in my

abdomen and was suddenly " bulging " . I actually thought I might be

pregnant despite having my periods...

> The doc thought I was 20 weeks pregnant, but of course the test was

negative, so I was referred to an ultra sound. I heard the doctor use

the term tumor and was absolutely hysterical for the next week

waiting for the U S.

> My husband and I have been trying for years to conceive, but

thought it was just bad timing. Though I have been very depressed

every time my period came. And the prospect of not having children

makes me think that life isn´t worth living.

> The U S doctor coldly stated that " with that uterus you will not

have children - it is just one large fibroid - if there is pressure

on the internal organs you will have to be operated " . Next patient

please... He didn´t even tell me what a fibroid is.

> I went home and cried for two days.

> My regular doctor had gone on vacation and I was supposed to get

the U S results from his substitute. I had a really hard time trying

to get to see her. I ended up screaming at the secretary that I would

not leave until I got an appointment or my test results which I would

take to the hospital - if they wouldn´t see me at the hospital either

they would have to have me removed by the police. Then I got to see

the doctor...

> She couldn´t tell me anything more. Just said that it was extremely

bad news and had I thought about adopting?! She didn´t know how many

fibroids I had or where they were located.

> I have spent an enormous amount of time researching on the net. And

have learned a great deal from this list. (Suddenly I understand why

I have devastating back pains...)

> I´ve gone on a diet, take a lot of vitamins, minerals, Vitex,

homeopathic medicine etc. And use all my money on acupuncture. I´m

not ready to hoist the white flag yet. Or wasn´t until today.

> 27th of July I finally got an appointment at the hospital. The

doctor did a vaginal ultra sound and said that I could go home and

celebrate. My uterus looked fine. I had a mass (presumably fibroids)

on the top of my uterus, but it could be removed without taking my

uterus along with it. But I had a cyst on one of my ovaries and I

might lose that ovary. I felt confused, but immensely relieved.

> Then today I had a more thorough U S (both abdominal and vaginal).

I told the radiologist that I did not want to lose my uterus in any

way (even if I can´t have children I do not want them to yank my

uterus out!). And he replied with " I don´t understand why you don´t

want that operation " . Since I thought I was in the clear I was

horrified. Waiting for my test results in the hallway packed with

pregnant women was an absolute nightmare.

> The doctor who interpreted the results said that they were not

completely sure, but it seemed that the uterus itself was enlarged

because of fibroids in the wall - how many he had no idea - and the

only solution was to remove the uterus. There was a slight chance

that there was only one large fibroid, and that they would have to

scrape some tissue out to see for sure.

> What about embolization? I asked. Oh, we don´t do that here, he

replied.

> The hospital in question is the largest in the country, so second

opinions is impossible to come by...

> I´m just about to give up completely... All responses from you are

more than welcome (if any one has read this far)

>

August 6, 2001

Listen sweetie pie, please don't cry, just read and listen and get a new doctor.

I had a large thyroid removed a month ago. I'm intact. You need compassion,

support and expertise. Just ask, question, and listen and then find the best

guy and the guy who other women have used and liked. Don't accept this abrupt

clown's diagnosis. Flesh it out totally.

Mortil wrote:

> Hi.

> This is my first mail to the list - have been reading for about a month. I´m

31, no children, live in Denmark.

> Now I thought I would vent my total frustration instead of crying and crying.

> Please bear with me if I don´t make sense, my head is spinning...

> Short version: I have just come home from ultra sound at the hospital and they

want to remove my uterus. The thing I want most in life is children. And I´m

extremely scared.

>

> The very long story:

> I went to the doctor the 20th of June because I felt a lump in my abdomen and

was suddenly " bulging " . I actually thought I might be pregnant despite having my

periods...

> The doc thought I was 20 weeks pregnant, but of course the test was negative,

so I was referred to an ultra sound. I heard the doctor use the term tumor and

was absolutely hysterical for the next week waiting for the U S.

> My husband and I have been trying for years to conceive, but thought it was

just bad timing. Though I have been very depressed every time my period came.

And the prospect of not having children makes me think that life isn´t worth

living.

> The U S doctor coldly stated that " with that uterus you will not have children

- it is just one large fibroid - if there is pressure on the internal organs you

will have to be operated " . Next patient please... He didn´t even tell me what a

fibroid is.

> I went home and cried for two days.

> My regular doctor had gone on vacation and I was supposed to get the U S

results from his substitute. I had a really hard time trying to get to see her.

I ended up screaming at the secretary that I would not leave until I got an

appointment or my test results which I would take to the hospital - if they

wouldn´t see me at the hospital either they would have to have me removed by the

police. Then I got to see the doctor...

> She couldn´t tell me anything more. Just said that it was extremely bad news

and had I thought about adopting?! She didn´t know how many fibroids I had or

where they were located.

> I have spent an enormous amount of time researching on the net. And have

learned a great deal from this list. (Suddenly I understand why I have

devastating back pains...)

> I´ve gone on a diet, take a lot of vitamins, minerals, Vitex, homeopathic

medicine etc. And use all my money on acupuncture. I´m not ready to hoist the

white flag yet. Or wasn´t until today.

> 27th of July I finally got an appointment at the hospital. The doctor did a

vaginal ultra sound and said that I could go home and celebrate. My uterus

looked fine. I had a mass (presumably fibroids) on the top of my uterus, but it

could be removed without taking my uterus along with it. But I had a cyst on one

of my ovaries and I might lose that ovary. I felt confused, but immensely

relieved.

> Then today I had a more thorough U S (both abdominal and vaginal). I told the

radiologist that I did not want to lose my uterus in any way (even if I can´t

have children I do not want them to yank my uterus out!). And he replied with " I

don´t understand why you don´t want that operation " . Since I thought I was in

the clear I was horrified. Waiting for my test results in the hallway packed

with pregnant women was an absolute nightmare.

> The doctor who interpreted the results said that they were not completely

sure, but it seemed that the uterus itself was enlarged because of fibroids in

the wall - how many he had no idea - and the only solution was to remove the

uterus. There was a slight chance that there was only one large fibroid, and

that they would have to scrape some tissue out to see for sure.

> What about embolization? I asked. Oh, we don´t do that here, he replied.

> The hospital in question is the largest in the country, so second opinions is

impossible to come by...

> I´m just about to give up completely... All responses from you are more than

welcome (if any one has read this far)

>

August 6, 2001

Do not give up please! Do you have a teaching hospital at all nearby? You don't

know how strong you are to have come as far as you have. Find docs who

specialize in alternatives. Keep finding them until one resonates. gg

Mortil wrote:

> Hi.

> This is my first mail to the list - have been reading for about a month. I´m

31, no children, live in Denmark.

> Now I thought I would vent my total frustration instead of crying and crying.

> Please bear with me if I don´t make sense, my head is spinning...

> Short version: I have just come home from ultra sound at the hospital and they

want to remove my uterus. The thing I want most in life is children. And I´m

extremely scared.

>

> The very long story:

> I went to the doctor the 20th of June because I felt a lump in my abdomen and

was suddenly " bulging " . I actually thought I might be pregnant despite having my

periods...

> The doc thought I was 20 weeks pregnant, but of course the test was negative,

so I was referred to an ultra sound. I heard the doctor use the term tumor and

was absolutely hysterical for the next week waiting for the U S.

> My husband and I have been trying for years to conceive, but thought it was

just bad timing. Though I have been very depressed every time my period came.

And the prospect of not having children makes me think that life isn´t worth

living.

> The U S doctor coldly stated that " with that uterus you will not have children

- it is just one large fibroid - if there is pressure on the internal organs you

will have to be operated " . Next patient please... He didn´t even tell me what a

fibroid is.

> I went home and cried for two days.

> My regular doctor had gone on vacation and I was supposed to get the U S

results from his substitute. I had a really hard time trying to get to see her.

I ended up screaming at the secretary that I would not leave until I got an

appointment or my test results which I would take to the hospital - if they

wouldn´t see me at the hospital either they would have to have me removed by the

police. Then I got to see the doctor...

> She couldn´t tell me anything more. Just said that it was extremely bad news

and had I thought about adopting?! She didn´t know how many fibroids I had or

where they were located.

> I have spent an enormous amount of time researching on the net. And have

learned a great deal from this list. (Suddenly I understand why I have

devastating back pains...)

> I´ve gone on a diet, take a lot of vitamins, minerals, Vitex, homeopathic

medicine etc. And use all my money on acupuncture. I´m not ready to hoist the

white flag yet. Or wasn´t until today.

> 27th of July I finally got an appointment at the hospital. The doctor did a

vaginal ultra sound and said that I could go home and celebrate. My uterus

looked fine. I had a mass (presumably fibroids) on the top of my uterus, but it

could be removed without taking my uterus along with it. But I had a cyst on one

of my ovaries and I might lose that ovary. I felt confused, but immensely

relieved.

> Then today I had a more thorough U S (both abdominal and vaginal). I told the

radiologist that I did not want to lose my uterus in any way (even if I can´t

have children I do not want them to yank my uterus out!). And he replied with " I

don´t understand why you don´t want that operation " . Since I thought I was in

the clear I was horrified. Waiting for my test results in the hallway packed

with pregnant women was an absolute nightmare.

> The doctor who interpreted the results said that they were not completely

sure, but it seemed that the uterus itself was enlarged because of fibroids in

the wall - how many he had no idea - and the only solution was to remove the

uterus. There was a slight chance that there was only one large fibroid, and

that they would have to scrape some tissue out to see for sure.

> What about embolization? I asked. Oh, we don´t do that here, he replied.

> The hospital in question is the largest in the country, so second opinions is

impossible to come by...

> I´m just about to give up completely... All responses from you are more than

welcome (if any one has read this far)

>

August 7, 2001

Hi ,

Take heart everything has a way of working out just fine.

You said you were in Denmark, I don't know much about the situation

in Denmark, but what I do know ( and I am not being racially

discriminatory) is that since fibroids tend to be more common with

black people, you should try and find a doctor in a predominantly

black area/ part of town. I am in London/England and was

treated/operated upon by a doctor in a predominantly black

borough/council/district. She had had a lot of experience with

fibroids and knew exactly what was right for me. If you do have an

area like that, then you should try talking to a gynaecologist

there. It doesn't matter the size of the hospital. What is

important is the doctor's level of experience in the particular area

of medicine.

What ever you do, DO NOT GIVE YOUR CONSENT IF YOU HAVE JUST THAT

INKLING OF DOUBT, no matter how confident the doctor is. It is

better to have a uterus with fibroids at your age than not to have a

uterus at all. It is difficult but not impossible to conceive with a

fibroids. It is just very complicated and a bit high risk. But a lot

of women have had kids in our condition. I am 21 weeks pregnant and

I have fibroids. They were a bit of a worry when I first got

pregnant but they seem to have shrunk or they have realised that I

and the baby are not going to let them dictate to us!!!!

Take heart, there is always a solution somewhere.

Love

Beri.