Re: OUTRAGED!

[Guest guest]

Cheryl,

I stared a long rant which the computer just deleted.... anyways - I

have endometriosis. There is NO WAY a 15 year old needs a hyst

without having tried less drastic treatments. There are some VERY

GOOD Doctors who can help with this - yes, it will require a surgery,

but they can leave the uterus intact.

By the way, added estrogen can exacerbate endometriosis, and the

friend's doctor should be ashamed to have put her on additional

estrogen bcps.

Your daughter's friend should get in touch with the Endometriosis

Association for starters (http://www.endometriosisassn.org/) - they

can recommend doctors. They also have a hotline. There is a

treatment center in Atlanta, there are nationally-recognized doctors

like wine (you can find his info on the Web), and I can

recommend a couple surgeons in the Boston area (you, your daughter,

or her friend can contact me offline at jsuleski@...). She is

NOT ALONE - and she doesn't need a hyst at this point in time.

Sometimes women do get hysts for this, if the pain etc. is bad

enough, but there's so much else to try before resorting to that.

Sometimes a single surgery can make the endo manageable, sometimes

people end up with multiple surgeries, but you just don't know. It's

a wildly unpredictable and chronic condition and your daughter's

friend needs some really high-class doctors on her case, not the bozo

she has now.

Let me know how I can help!

Janet

> Hi ladies (my fellow fibroidians),

>

> I am asking for help on the behalf of my daughters friend who is 15

years old who has been told that an hys is her only option. Since my

knowledge is limited to fibroids I was hoping that some one could

help regarding my daughters best friend's ovarian cysts and

endometriosis. I am outraged that a gyno would even think about

doing an hys on a 15 year old girl. Since I have gotten this

information second hand I will let my daughter explain her friends

situation.

>

> Hi Ladies,

> My name is Dominique, I am Cheryl's daughter. I am writing to

explain to you about my best friend's terrible situation.

Unfortunately, after her horrible experience in a head on collision,

she started to show symptoms of these cysts+endo. It started after

the accident that she started to have stomach pains even when not on

her period. Her physical therapy doctors suggested that it had

something to do with her lower spine. Later on, she started to have

irregular periods and horrible cramps. As time went on, the pain

became so bad that she would pass out at least 2-3 times a day. When

she finally went in to the doctor, all they could give her at that

moment was more physical therapy and some bcp (Which she has been on

before for cramps). The pains progressively got worse to the point

where she has missed multiple months of school. After she went back

in again, they performed an ultrasound on her and discovered that she

had cysts on BOTH of her ovaries, and endometriosis (a condition

where endometrium, the lining of the uterus, is found in locations

outside of the uterus). At that moment they obviously still had no

idea what to do with her, and so they just kept her on bcp, but only

with more estrogen. She still became severely nauseated, bloated,

constipated and in a lot of pain. Until about 3 weeks ago, I

suggested to her, by my mom, that she ask her doctor about a

Lapendectomy (surgery where ONLY the cysts are removed). Before, I

had to convinced her to ask her doctor about more less complicated,

risky surgeries. Apparently, as I have found out today, her doctor

told her she could not have a lapen. and proceeded to convince her to

get a hys! Sadly enough, she doesn't have anybody else to turn to for

help. Right now I am the only one in her life that can even shine a

little light on her situation. Unfortunately, she cannot get help

from her parents. Because, her father is a retired police officer and

wants nothing to do with it. Her mother, hasn't got the slightest

clue to research and ask questions. She just happens to be, in light

of better terms, out in space. Luckily if I had told Sheryl NOT to

listen to the doctors recommendation to get the hys her own mother

might not have known what to think. It would be wonderful if you

could recommend a group that she could talk to, any doctors you might

recommend, and even any suggestions or words of encouragement that

you may have for her would be greatly appreciated.

> Thank You,

> Dominique

>

> Thank you ladies for helping my daughters friend.

>

> Cheryl

[Guest guest]

--- In uterinefibroids ,

I just did a quick search on a certain well known internet

bookseller's site and there are a lot of titles for Endometriosis

there: I hope it helps.

All the best

Aztek

[Guest guest]

Cheryl wrote:

> After she went back in again, they performed an ultrasound on her and

> discovered that she had cysts on BOTH of her ovaries, and

> endometriosis (a condition where endometrium, the lining of the

> uterus, is found in locations outside of the uterus).

Endometriosis is NOT diagnosable with ultrasound. Any doc who mouths

out a diagnosis of endometriosis based on ultrasound is a quack.

Furthermore, any doc who mouths a diagnosis of endometriosis based on

ultrasound and then has the nerve to recommend hysterectomy to a 15 year

old for this is a DANGEROUS QUACK. Report this doc to the state medical

board ASAP.

And you can tell that child's mother I said so. Run, don't walk, to

another gyn.

--

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

1 (877) 553-NUFF

mailto:carla@...

http://www.NUFF.org

http://groups.yahoo.com/group/uterinefibroids

Author, " Sex, Lies, and the Truth About Uterine Fibroids "

Questions are the window of opportunity. Sometimes, just sometimes,

answers allow our souls to see beyond the shade of darkness and let the

sunshine in.

[Guest guest]

Cheryl,

Is your friend's daughter in Washington too? What city? Also, could

you possibly share with me (offline, if need be) the name of the doc who

recommend the hysterectomy to that 15 year old? Also, do you know if

they have health plan restrictions for seeing another doc?

--

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

1 (877) 553-NUFF

mailto:carla@...

http://www.NUFF.org

http://groups.yahoo.com/group/uterinefibroids

Author, " Sex, Lies, and the Truth About Uterine Fibroids "

Questions are the window of opportunity. Sometimes, just sometimes,

answers allow our souls to see beyond the shade of darkness and let the

sunshine in.

[Guest guest]

Cheryl--your daughter's friend not only needs a different doc, she needs

different parents. She sounds like she has quite alot of abandonment in her

history--by that I mean parents who are not paying attention to her at all,

who are CLUELESS and SELF-ABSORBED and god knows what else.

I hope you will, indeed, work with Carla about getting this girl appropriate

medical treatment and reporting the doc who suggested hyst. But what to do

about this girl's parents???? Cheryl, do you think you could speak to the

mother and try to befriend/educate her? You might be able to figure out

WHAT is going on in this family. I will guarantee you that some kind of

abuse exists in that household. Might be that the best way to help the

daughter is to start by helping the mother.

Feel free to write me off-list if you need support or suggestions on this.

Sounds like this girl has no one watching out for her. It is a very sad and

serious situation. She is lucky to have your daughter as a friend.

Good luck.

Faryl

[Guest guest]

Hi LOL,

Carla,

Yes this girl lives in Renton, Washington. I have found out that this doctor is

a family doctor in which s/he specializes in back problems. I am getting the

impression that this doctor has not taken the appropriate steps in diagnosing

this girl correctly. This doctor has explained procedures regarding what s/he

thinks this girl has, but doesn't know without further tests. This doctor has

explained about Lapendectomy but doesn't want to do it because it would require

abdominal surgery, instead this doctor prefers laser surgery. This doctor has

explained lapen to her parents, but the parents don't fully understand this

procedure. Doctor has explained that hys would put this girl in to early

menopause. I can't seem to get the doctors name from this girl. But the more

facts I get the more I think that this doctor is doing things backwards.

Putting this girl in an absolute state of fear without any real diagnosis. She

has not been referred to an gyno, which I think is real wrong. I have invited

this girl over my house. The soonest that she can come over is Sat. May 31st.

Would it be possible for her to call you or email you directly from my home

phone or my computer? I have saved links and info that have been given to me

regarding her situation so that she could do the research from my computer and

forward on links that I have on to her email.

Janet,

I have saved your link and your email. This girl may need to talk to someone

that has a clue card about doctors, symptoms, fear, and everything else that

goes with this. From what I know her father was going through cancer treatments

last year, not sure if he is in remission or not. But based on my impression

this family doesn't have the financial resources to go out of state, but it is

only my impression.

Aztec,

Thank you very much for the links. I have saved these links so that this girl

can check them out on Sat.

Faryl,

I have met her parents because I will not let my daughter spend the night over

anyone's house with out meeting the parents first. This girls father does have

cancer and looks to be in his mid to late 50's. I do know that chemo/radiation

does age you from 10 to 20 years. My father had cancer as well. He does

exactly what my father did watched TV and sleep because of the pain and effects

of the cancer and treatments. I think because of his generation, fathers tend

to take a back seat to their daughters reproductive conditions. So much fear

that fathers have now is being falsely accused of any misconduct so mothers take

the lead roll regarding any physical concerns. I think this is why he doesn't

want anything to do with it. Her mother is a very pleasant but passive woman

possibly in her early to mid 50's. She doesn't drink, smoke, or cuss. It's my

impression that her mother may be one that thinks doctors know best or doesn't

question doctors. It is my hope to befriend/ask her mother about her daughters

condition Sat when I take her home. My daughter assures me without a doubt that

no abuse has been done to this girl. This family thinks the world of my

daughter and has went to the extent of including her into their

Thanksgiving/Christmas parties and gift exchanging. My daughter is the only one

of this girls friends that has been invited and included within their family.

Her family feels that we have done a good job in raising our daughter to be

polite, courteous, and use proper manners when she is a guest in someone else's

home. For this reason my daughter has been the only one in which she has been

re-invited and included in family gatherings. My family has been educated the

hard way about doctors, their skills, doing what's best for themselves instead

of what is best for the patient, doctors idea's of giving a magic Rx that makes

things worse, the lack of desire to take proper steps in diagnosing a patient,

yelling at insurance companies, filing grievances against doctors with insurance

companies (waste of time there), and the for lack of a better word the shitty

bedside manner of some doctors. My daughter has witnessed all this at a early

age regarding children that I have lost (genetic disorder) and my son who has

several internal problems that may be related to an genetic disorder. So my

daughter knows to research, question, and never trust a doctor just because s/he

is a doctor. This is what she is getting across to the girl. Right now this

girl is terrified out of her mind and is asking for help.

Kukalaka,

Thank you for that information. I have saved your email.

Christy R,

First of all my daughter would like to say Thank you for typing in her name. So

was so excited to see her name. She spent a lot of time typing in the story and

trying to do her best in explaining what was going on. My daughter has read

some of the posts from this group. She has expressed that she enjoys reading

the humor that you ladies have shown over something that isn't that funny. She

loves the humor. These posts have given her much more information about what

not to allow a doctor to do. She has learned much from this group, and has

prepared her for when she is out on her own the responsibility she needs to take

regarding her own body and her own choices. She has the RIGHT to say NO to a

doctor. In turn she is telling her friend the same thing. Say NO.

Cecile,

Yes, I'm sure that their would be a long line of us insuring that the tar and

feathering gets done. The minute I heard from my daughter this story of her

friend and asked my daughter to get permission to post her story in this group

from her friend. The girl was desperate and without hesitation said yes, she

wants help from anyone. I had told my daughter that I would be getting back

lots of comments. She said really? I said yes because LOL will feel the same

as I do, absolutely NO hys for a 15 year old girl, in fact hys should not have

even been mentioned. Life really doesn't begin until after high school

graduation, and her life would be destroyed before she had a chance to begin her

life and the LOL know this.

Maggie,

Thank you so much for the information. My daughter hasn't read your post yet,

but she will as soon as she gets home and will feel good about your compliments.

My daughter is a person that wears her heart on her sleeve. She is very

sensitive, compassionate, and sympathetic and will give the shirt off her back

to help a friend. She will love hearing from you that she did the right thing

for her friend. I have already told her this, but coming from someone that

isn't her mother tends to go farther.

I would like to thank all of you ladies for the help and quick responses (I am

so grateful for the LOL). I welcome any help with this girl. I feel I'm a

little out of my league since the only knowledge that I have is fibroids since

that is my only condition.

Cheryl

OUTRAGED!

Hi ladies (my fellow fibroidians),

I am asking for help on the behalf of my daughters friend who is 15 years old

who has been told that an hys is her only option. Since my knowledge is limited

to fibroids I was hoping that some one could help regarding my daughters best

friend's ovarian cysts and endometriosis. I am outraged that a gyno would even

think about doing an hys on a 15 year old girl. Since I have gotten this

information second hand I will let my daughter explain her friends situation.

Hi Ladies,

My name is Dominique, I am Cheryl's daughter. I am writing to explain to you

about my best friend's terrible situation.

[Guest guest]

For starters GET A NEW DOCTOR! Continue to search for one that

honor's a woman's/young girl's body. I have not read all the

responses to your e-mail so I apologize any repeated information. My

own bias is against surgery. I was diagnosed at an early age - had

someone told me the complications down the road, I would have made

different life choices. I think it is important for this young girl

to understand the future impact of her condition will have on her

life and then she can decide. I would recommend contacting

http://www.womentowomen.com. Check out Dr. Northrup's book. SHe has a

section on fibroids and ovarian cysts.

Although, they are few and far between there are physicians out there

that respect a women's body and can discuss various options with this

girl. Personally, I would opt for a Nurse Practitioner or OB/GYN

focusing on women's health before going straight to a surgeon or any

other specialist.

I am also of the belief that traumatic accidents or events can affect

the body. I would not rule out alternative methods such as Reiki.

Post this on the naturalhealing fibroid Yahoogroup as well. It is

suspcious that this would come up after an accident. The body may be

holding onto the trauma. I only say this because my brother was in a

near fatal head on collision. His life and body were really never the

same. Fifteen years later he has worked through a lot of the emotions

of it.

My thoughts are with you and her. I feel for you both!

> I am asking for help on the behalf of my daughters friend who is 15

years old who has been told that an hys is her only option

[Guest guest]

Cheryl wrote:

> Would it be possible for her to call you or email you directly from my

> home phone or my computer? I have saved links and info that have been

> given to me regarding her situation so that she could do the research

> from my computer and forward on links that I have on to her email.

>

Cheryl,

I'm going to be traveling on the 31st but will email you offline with my

cell #. And of course any email from her is welcome as well. Do you

have IM set up on your computer? If so, send me your user name in an

offline email to cdionne @ earthlink.net and maybe we can set up a time

for a chat.

--

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

1 (877) 553-NUFF

mailto:carla@...

http://www.NUFF.org

http://groups.yahoo.com/group/uterinefibroids

Author, " Sex, Lies, and the Truth About Uterine Fibroids "

Questions are the window of opportunity. Sometimes, just sometimes,

answers allow our souls to see beyond the shade of darkness and let the

sunshine in.

[Guest guest]

farylpaul wrote:

> Don't be afraid to rock the boat in a loving and direct way. I hope

> this is

> helpful.

Faryl,

I'm not so certain I would completely agree with this recommendation.

Cheryl and her daughter may well find themselves politely escorted to

the door. Or, maybe even not so politely escorted. This statement of

Cheryl's is a curious one to me and somewhat of a red flag:

" My daughter is the only one of this girls friends that has been invited

and included within their family. "

This appears to be a close knit family who allows others inside quite

selectively. It's my experience this generally accompanies deep desires

over privacy with personal family matters. For Cheryl to interject

herself into any of this could be quite offensive to the mother and do

more harm than good. The school of hard knocks and a whole lot of

experience with an equally closed off family that would be absolutely

mortified and insulted at the interjection of another into the family's

business.....tells me that caution and moving slow on this one is

necessary. And, the best and most direct influence may well be simply

Cheryl's daughter talking to this friend of hers.

Over the last 20 years I have led youth groups of many, many young girls

who had all sorts of family situations. I've also been responsible for

training new adult volunteers and had my ears bent over many a *family

situation* where leaders have found themselves tangled up into quite a

mess. That docile mother of this child can probably turn into a

barracuda on a dime if she thinks she's protecting her family/their

privacy.

It's not that I think one shouldn't get involved....it's more that I

think the *how* has to be carefully thought out if you wish to succeed

in helping this child. Gently offering that Cheryl's daughter has

shared some info on her daughter's health and maybe gauging the reaction

of this news before going further may be called for here. Generic words

of motherly concern and offering on a *high* level to be there for the

daughter/mother in any way at all....while also gauging response may be

a next step. Baby steps. Slow. Sure. Backing off at any point, if

need be. Mostly because one of the worst things that can happen here is

complete dismissal and no more invitations to Cheryl's daughter to be

with her friend and support her through this.

Maybe I'm projecting my own experiences into this too deeply without

enough information.....but I would hate to see this explode and the kid

end up with a completely asinine hysterectomy. Oh, and that's a

reverse action that can occur too. Someone trying to interfere? That

can actually make some folks dig in their heels and go full speed ahead,

damn the consequences.

As for the possibility of abuse......my father was always okay with just

10 green switch licks on my bottom with my dress pulled up...but god

forbid anyone make a comment about it to him....it would be 20 the next

time out. oh, and god also forbid anyone try to stop him in the

process....it would be 20 and then a toss upside the wall too.....and

children do learn, very early, how to hide the marks. Just as abusive

parents learn how selectively place them.

BTW, none of my friends all through school knew how much I was

physically abused. That was *family* business. Even my best friend of

35 years who was in my home nearly every other weekend....only

discovered the truth a few years ago...

Here's why I think this *imagery* of safety was perpetuated.....Cheryl

wrote:

" Her mother is a very pleasant but passive woman possibly in her early

to mid 50's. She doesn't drink, smoke, or cuss. It's my impression

that her mother may be one that thinks doctors know best or doesn't

question doctors. "

Describes my own mother, to a tee. I'd add to this list....seemingly

somewhat intelligent and soft spoken. It's amazing what people/families

can hide from outsiders, don't you think?

It might be better to take this slow until knowledge over the entire

situation is more accurate and, perhaps, an invitation to share more

information on docs/reproductive issues/the daughter's situation

actually comes from the mom. More than one way to rock a boat and

create change.....

Footnote: My mother's very first comments about my book: " You couldn't

wait until I was dead before you published this? " And boy would she

deny this and be absolutely mortified if she knew I shared that with

anyone. Sigh.

--

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

1 (877) 553-NUFF

mailto:carla@...

http://www.NUFF.org

http://groups.yahoo.com/group/uterinefibroids

Author, " Sex, Lies, and the Truth About Uterine Fibroids "

Questions are the window of opportunity. Sometimes, just sometimes,

answers allow our souls to see beyond the shade of darkness and let the

sunshine in.

[Guest guest]

Carla--yeah, all your points are good ones and valid. Cheryl will have to

use her intuition. I agree with you that this family is a " closed system "

but the fact that they like and respect Cheryl and Dominique could mean that

they would accept her help. There are so many reasons a family can be

isolated, not all of them hostile or anti-social. Could be shame, could be

the father's cancer. A very hard call for you and me to make--Cheryl's

call.

I'm NOT suggesting that she confront abuse if there is any very well-hidden

abuse, as in your family, MY family, so MANY families. However, just as a

general note, if anyone suspects child abuse, call Child Protective Services

and discuss it with them.

Good luck, Cheryl and Dominque. Do what you can.

Faryl

[Guest guest]

Carla,

Good point! The fact that they are so overprotective in their family

matters sends up a big red flag to me too. just the simple fact that

she shared her problems with her friend and her friend shared with all

of us, may just send her dad over the edge if he knew. This is a

tragic situation and must be handled carefully.

Does this child have another family member, perhaps an aunt or someone,

that can act as an advocate to get her the medical help she needs?

Perhaps a counselor at school. she may be only 15, but SHE may have to

be her only advocate and stand up to this moron of a dr. and DEMAND a

2nd opinion.

oke

[Guest guest]

Hi LOL,

Carla & Faryl,

Yes I was going to proceed with caution when talking to her parents. I knew

when I started trying to get help that I would be walking in that grey shady

area of trying to help a girl that isn't my daughter. Before asking if this

girl could come over, I called my husband and told him that I thought it would

be a good idea to invite this girl over and do what I could to inform her

through research on the computer using the links that were provided by this

group, talking to Carla, etc... instead of information being streamlined through

my daughter to her. This girl is terrified out of her mind, she needs

information and someone to talk to. For me the more information I had, the

ability to talk to the LOL, empowered me with knowledge and confidence and my

fear subsided. My husband replied without hesitation was yes go ahead and do

it. I explained that we are walking a grey shady area in which her parents may

tell us to butt out but I can't ignore her cries for help that she is asking

for. My husband's attitude to this is that it is bs that a girl of 15 is being

told that an hys is the answer to remedy her condition. He said if it was me

(my husband) put in the same situation I would be taking someone hostage (from

the movie " Q " ) yelling out " I want my Penis and Testicles " . And if it

happened to our daughter, he would be po at the doctor and walk us out of the

room and get a second opinion. It was my husband and daughters view that her

parents would not get mad over us trying to help her, or asking them about their

daughter's cysts & endo. Just the same I am using caution. This girl wants to

have children badly, so she is desperate to save her female reproductive organs.

My daughter has told her that she needs to be seen by a gyno, and she has told

her what Carla has pointed out that endo is not diagnosable through u/s. This

girl does want a second opinion after my daughter has passed on information from

you ladies.

PS. Carla your not alone. I lived in the same environment as you. And yes

your mother sounds like mine. However, our family (my kids, husband and myself)

have had to deal with the reverse. My daughter's sister died at 11 days of age

(genetic disorder). Dominique was 4 going on 5 and in Kindergarten and

regressed. School grades went downhill and she was no longer potty trained at

night. I got help from an grief counseling group for her (took some fighting to

get her in) in which they did tell me that regression is a normal part of grief

for children her age. Later (she was about 6 or 7) I took her in to a doctor to

check and see if something physical could be wrong. All they did is an u/s, and

was normal. Dominique was learning to roller skate and ride a bike. So she had

bruises from learning these activities. Doctor questioned these bruises and

documented them in her chart. Dominique also had occasional constipation

(doctor questioned her on sexual abuse). By this time I was so wound up, I

stopped letting her ride her bike and roller skate. Until I came to my senses a

week later and realized she only has a short time to be a kid, let her play.

She asked me questions about why the doctor acted that way. I explained that

the doctor thinks that we may be abusing you. I explained physical, mental and

sexual abuse in her terms that she could understand. She replied it's not dad's

or your fault that I am bed wetting it's my fault. I quickly replied it's not

your fault. I then took her in to Chiropractor, after explaining all that we

have gone through, he rolled his eyes and couldn't believe it. One month later

of Chiropractic care Dominique was cured. My son has had several internal

physical problems. He has been seen and tested by doctors and specialists since

he was born. At toddler age he was banging his head (hard) on everything

causing bruises. I was always on alert trying to keep him from getting hurt.

was being seen by a doctor and out in the hallway he whacked his head on

the wall while the doctor was updating his chart. Doctor replied was that an

earthquake, I said no banged his head on the wall. Doctor put it in his

records what he did to himself. I breathed a sigh of relief that it was seen by

a doctor. By the time he started school he needed extra care because he was not

potty trained (could not feel his bowels or bladder and was being seen by

specialists). School was mad that he wasn't within the norm and required extra

care and was aware of all doctors involved. School called Child Protective

Services on me because he wasn't potty trained. I invited CPS agent in and

showed all medical documents and future appointments, also showed that by school

IQ testing he was in Special Ed. CPS agent was angry that she was called by the

school when they knew he was being seen by doctors and specialists, in special

ed, and didn't tell her that. She dismissed the accusation and close the file

as soon as she got back to the office. It was a clear cut case of harassment.

I then armed myself with information on the Disability Act and both my husband

and myself walked in to the school district office and at the same time yelled

" What the hell do you think you are doing. " We definitely got their attention.

I realize that I straying away from what is talked about through this group.

Just thought I would add some of my situations regarding the extreme situations

that I have been in. Thought that discussions on stress and fibroids were very

interesting. I have to admit " Stress " is my middle name. Now how do we cure

stress?

Cheryl

Re: OUTRAGED!

farylpaul wrote:

> Don't be afraid to rock the boat in a loving and direct way. I hope

> this is helpful.

Faryl,

I'm not so certain I would completely agree with this recommendation.

It's not that I think one shouldn't get involved....it's more that I

think the *how* has to be carefully thought out if you wish to succeed

in helping this child.