It's not just Drs.

[Guest guest]

In Novemeber and January, I had to have two colonoscopies ! All is well

but during those two pre-ops and phone interviews and follow ups etc. I

had several NURSES look like dunces.....I had to list my medications and

when they asked me what the Neuronitn was for.....I replied , "

Vulvodynia " ....and I got a couple of " What did you say ? " and a "

VulvoWHAT? from nurses.....female nurses. It is discouraging.

[Guest guest]

Here, here, couldn't have said it any better. Thanks Lindsey.

The assistant dermatologist at one of my apts the other day had

not even heard of vulvodynia!! Isn't it supposed to be their

job to educate us, not the other way around. I get sick and

tired of it. You bad (GOOD) girl for speaking up.

Janet

--- Lindsey wrote:

> I hope you told those nurses to look it up. The other day at

> my

> allergist's office the snotty receptionist yelled at me for

> not

> signing in. I said, " There was no sign-in sheet when I

> checked in. "

> She laughed and said, " Gee, sorry. Next time yell at me and

> I'll put

> the sign-in sheet out. " I said, " I get paid to do my job, not

>

> yours. If you can't keep track of it I won't do it for you. "

> She

> almost died.

[Guest guest]

When I first got my pain I researched it on the internet because I had no idea

what it was. I finally found (after days of searching) an article describing it

as vulvodynia. Then I went to my Gyn and didn't really expect him to know what

it was so I told him that I had burning pain in my vulva. He said,

" Oh, that's vulvodynia " .

I doubt most nurses have a clue what it is unless they have had patients with

it. I would never expect a nurse to know what it is.

Ora

[Guest guest]

I'm not paying my $ to go to a doctor's office to educate them. Nor am

I going to a doctor's office to be treated like a second class citizen

because the doctor doesn't know what my problem is so instead of

looking it up (very easy to do in this day and age of Blackberrys) they

insinuate it's in my head without doing a proper psychiatric exam. I

would NEVER agree to see a client if I didn't know how to help them or

at least feel like I could consult with other clinicians or research on

helping them. Some doctors ARE educated by their clients or educate

themselves based on the problems that come into their door along with

their patients-but because of the male dominated western ways of

medicine (very ego-centric and somewhat misogynistic) these doctors are

few and far between. Health magazine had a recent article on the " Top

5 Surgeries to Avoid " because they were overdone and unnecessary and

often caused more problems than they were worth. Number one was

hysterectomy and number two was episiotomy. The other three surgeries

affected men and women equally. I don't think it's any big mystery why

the top two were gyn surgeries-gyn has long been a specialty of

men " practicing " on women things that they would never have to

experience. Any woman of childbearing age should watch " The Business

of Being Born. " It really shows the history of ob-gyns and it's not

exactly woman-friendly. I love my gyn and my ob, but they are very

woman centered and it took about ten to find the ones I see today.

I am all about kindly explaining what vulvodynia is to a nurse or a

doctor if I am in the office for something else (ie-GI specialist), but

the second I have to do that in a PCP office or ob-gyns office, or if

the nurse or doctor makes some smarmy remark ( " is that in your

head? " " I can't believe women pay me to look at their bottoms " ) you can

bet that I'm out of that office and a complaint is being filed post

haste to the licensing board. And I'm getting my co-pay back. I'm a

human being, as we all are. Many of us on this board are in pain 24/7

and have not been helped by a misogynistic western medical system-we

have been hurt more by them. Your doctors aren't gods, they are human

beings and the second they start treating you like less than one I

highly suggest you take your power back...leave the office, file a

complaint, and most of all DO NOT PAY for a huge waste of your time.

Lindsey

[Guest guest]

I couldn't of said it any better myself . I agree with you 200% and I'm so fed up with having to explain what VVS is and PFD to nurses....not to mention if I call a doctor's office to see if the doctor treats VVS, the receptionist is hesitant and not to helpful. My OBGYN Dr. told me last year I had the symptoms of VVS but wasn't 100% sure and told me a 2nd opinion wasn't necessary. I wanted to burst out and scream at him. Tell me what kind of doctor advises their patient NOT to get a 2nd or 3rd opinion, thats flat out BIZARRE to me!!!! I demanded to him that I wanted to see a specialist, so I received authorization from my insurance to go to Stanford. I've seen her twice now, she is nice and a great listener, but not as knowledgeable as I hoped for being that she's a "specialist." Now, I'm off to check out two OBGYN's in Stockton, CA. and praying I get some definite answers to my questions.

**

Re: It's not just Drs.

I'm not paying my $ to go to a doctor's office to educate them. Nor am

I going to a doctor's office to be treated like a second class citizen

because the doctor doesn't know what my problem is so instead of

looking it up (very easy to do in this day and age of Blackberrys) they

insinuate it's in my head without doing a proper psychiatric exam. I

would NEVER agree to see a client if I didn't know how to help them or

at least feel like I could consult with other clinicians or research on

helping them. Some doctors ARE educated by their clients or educate

themselves based on the problems that come into their door along with

their patients-but because of the male dominated western ways of

medicine (very ego-centric and somewhat misogynistic) these doctors are

few and far between. Health magazine had a recent article on the "Top

5 Surgeries to Avoid" because they were overdone and unnecessary and

often caused more problems than they were worth. Number one was

hysterectomy and number two was episiotomy. The other three surgeries

affected men and women equally. I don't think it's any big mystery why

the top two were gyn surgeries-gyn has long been a specialty of

men "practicing" on women things that they would never have to

experience. Any woman of childbearing age should watch "The Business

of Being Born." It really shows the history of ob-gyns and it's not

exactly woman-friendly. I love my gyn and my ob, but they are very

woman centered and it took about ten to find the ones I see today.

I am all about kindly explaining what vulvodynia is to a nurse or a

doctor if I am in the office for something else (ie-GI specialist), but

the second I have to do that in a PCP office or ob-gyns office, or if

the nurse or doctor makes some smarmy remark ("is that in your

head?" "I can't believe women pay me to look at their bottoms") you can

bet that I'm out of that office and a complaint is being filed post

haste to the licensing board. And I'm getting my co-pay back. I'm a

human being, as we all are. Many of us on this board are in pain 24/7

and have not been helped by a misogynistic western medical system-we

have been hurt more by them. Your doctors aren't gods, they are human

beings and the second they start treating you like less than one I

highly suggest you take your power back...leave the office, file a

complaint, and most of all DO NOT PAY for a huge waste of your time.

Lindsey

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

I would never call a doctor's office and ask the receptionist if the doctor

treats VVS. I don't expect receptionists to know about various diseases. I

would give her some of my predominant symptoms, for example I would tell her

that I have pain in a particular area of my body.

I don't even expect doctors to know how to treat vulvodynia because there are so

many variations. You need to give the doctor specifics about the type of pain

involved that you want relief from. Doctors don't necessarily agree with how to

treat such pain. I try to put myself in the doctor's position so that I can

get relief and hopefully a cure.

Ora

On Tue, 25 Mar 2008 12:28:18 -0400, caliprincess2369@... wrote:

>

>I couldn't of said it any better myself . I agree with you 200% and I'm

so fed up with having to explain what VVS is and PFD to nurses....not to mention

if I call a doctor's office to see if the doctor treats VVS, the receptionist is

hesitant and not to helpful. My OBGYN Dr. told me last year I had the

symptoms of VVS but wasn't 100% sure and told me a 2nd opinion?wasn't necessary.

I wanted to burst out and scream at him. Tell me what kind of doctor advises

their patient NOT to get a 2nd or 3rd opinion, thats flat out BIZARRE to me!!!!

I demanded to him that I wanted to see a specialist, so I received authorization

from my insurance to go to Stanford. I've seen her twice?now,?she is nice and

a?great listener, but not as knowledgeable as I hoped for being that she's a

" specialist. " Now, I'm off to check out two OBGYN's in Stockton, CA. and praying

I get some definite answers to my questions.

>

>

>**

[Guest guest]

No, I think Lindsey made the point quite clearly. Believe me I

spend plenty of time educating myself about my various health

conditions. Unfortunately some doctors are not interested in

educating themselves or in learning from their patients.For them

education itself is not a priority--sad but true. And remember

vulvodynia is NOT a rare condition, so physicians whose

specialties should cover this condition, for sure should know

the lay of the land, and I say shame on those who don't.

All doctors should read the book you recommend because it is a

scathing condemnation of the short sightedness and diagnostic

blindness of the medical profession. So far from lifting

responsibilities off the doctors shoulders to educate patients,

it shows that many doctors need to change the way they do

diagnostic business and invest substantial time and effort in

improving their ability to help patients, and this would include

help in educating patients. For what its worth, docs who are

really interested in educating patients are those who welcome

patient input, rather than shutting it down. I think the cause

of shutting down patient input is insecurity.

Janet

--- Kristy Sokoloski wrote:

> Janet said " Isn't it supposed to be their job to educate us,

> not

> the other way around "

>

> Because patients are becoming more educated about their bodies

> and their problems the above statement is not always true. A

> book came out on the subject of what doctors think and showing

> the differences between doctors as to what they think about

> patients and was very interesting. It's called " How Doctors

> Think " by Jerome Groopman, M.D. It's very enlightening and a

> book I highly recommend to everyone on the list.

>

> Also, there are doctors that are out there willing to learn

> from

> their patients, especially if the case is a unique one in the

> hopes that it might help someone else.

>

> I don't know how many of you ever watched 7th Heaven (one of

> my

> favorite shows of all times) but one of the episodes in the

> series was when the character Matt was going to go for his

> psychiatric evaluation as part of the process to enter Medical

> School. This episode was so funny but there was a lesson in

> there. When he found out who the one guy he was talking to

> was

> he laughed but he learned a lot from that gentleman (yep a

> hospital patient) and when he actually met with the

> psychiatrist

> the doctor told him that the patient that Matt met with was

> his

> teacher. What that meant was that the doctor learned

> something

> new from that patient in order to better help others that he

> treated.

>

> I think it's wonderful when we can have the chance to educate

> doctors new to our health care team if we can do it.

>

> We shouldn't be afraid to do this.

>

> Kristy

[Guest guest]

BlueeberriCreate a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Ora I didn't explain myself completely, yes I tell the receptionist what its called and then she'll ask the doctor, some doctors don't know and some do. How else am I going to find out who treats VVS? I'm for sure NOT going to waste my time and money to go to any random OB or GYN.

**

Re: It's not just Drs.

I would never call a doctor's office and ask the receptionist if the doctor

treats VVS. I don't expect receptionists to know about various diseases. I

would give her some of my predominant symptoms, for example I would tell her

that I have pain in a particular area of my body.

I don't even expect doctors to know how to treat vulvodynia because there are so

many variations. You need to give the doctor specifics about the type of pain

involved that you want relief from. Doctors don't necessarily agree with how to

treat such pain. I try to put myself in the doctor's position so that I can

get relief and hopefully a cure.

Ora

On Tue, 25 Mar 2008 12:28:18 -0400, caliprincess2369 (AT) aol (DOT) com wrote:

>

>I couldn't of said it any better myself . I agree with you 200% and I'm so fed up with having to explain what VVS is and PFD to nurses....not to mention if I call a doctor's office to see if the doctor treats VVS, the receptionist is hesitant and not to helpful. My OBGYN Dr. told me last year I had the symptoms of VVS but wasn't 100% sure and told me a 2nd opinion?wasn't necessary. I wanted to burst out and scream at him. Tell me what kind of doctor advises their patient NOT to get a 2nd or 3rd opinion, thats flat out BIZARRE to me!!!! I demanded to him that I wanted to see a specialist, so I received authorization from my insurance to go to Stanford. I've seen her twice?now,?she is nice and a?great listener, but not as knowledgeable as I hoped for being that she's a "specialist." Now, I'm off to check out two OBGYN's in Stockton, CA. and praying I get some definite answers to my questions.

>

>

>**

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

Ora said, " I don't even expect doctors to know how to treat

vulvodynia because there are so many variations "

Right, which is why it's important that we try to educate the

doctors out there in the hopes that by them learning from our

particular case (if they don't know yet) they may be able to

help someone else that comes to them with a similar situation.

Kristy

________________________________________________________________________________\

____

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[Guest guest]

Janet said, " Unfortunately some doctors are not interested in

educating themselves or in learning from their patients. "

And about how old would you say these doctors are? The reason I

ask this is because this is often the case with a number of

doctors who have been in practice for 20 + years.

And yes, vulvodynia in a way is still a rare condition of sorts

which is why the American College of Obstetricians and

Gynecologists put out a brochure on the subject to try and

change this. This is also why we are wanting to get the word

out about vulvodynia on shows like Oprah so that it gets more

notice than it has in the past.

Expecting specialists that deal with female problems such as

this to " know the lay of the land " is a statement that reflects

that you expect them to know " everything " about every female

illness out there and that is just not possible.

And as for the book yes, there are more doctors that are reading

this but not all as of yet because of what they'll see in it.

This is exactly one of the reasons why it was written but in

this case I'm talking about the public (which is another main

factor for why the book is written so that patients can better

understand what really goes on) and I think everyone on this

list needs to read the book.

As for the shutting out patient input is insecurity, that is not

necessarily true which is why I asked the question above about

the age of the doctors that don't think they need more education

or want to learn from patients.

Kristy

________________________________________________________________________________\

____

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[Guest guest]

--- Kristy Sokoloski wrote:

> Janet said, " Unfortunately some doctors are not interested in

> educating themselves or in learning from their patients. "

THAT HAS BEEN MY EXPERIENCE AND I AM 55 YEARS 0LD AND SUFFER

FROM MYRIAD HEALTH CONDITIONS AND AM NOT A NEWBIE TO HEALTH

BOARDS

> And about how old would you say these doctors are? The reason

> I

> ask this is because this is often the case with a number of

> doctors who have been in practice for 20 + years.

EASY ANSWER. THEY COME IN ALL SHAPES SIZES,PERSONALITIES, AND

AGES. A COUPLE OF THE WORST OFFENDERS CERTAINLY HAD NOT BEEN

PRACTISING 20 YEARS I CAN TELL YOU THAT FOR SURE. YOU WOULD

THINK ESPECIALLY THE YOUNG DOCS WOULD BE EAGER TO LEARN, BUT

OFTEN THEY AREN'T, BUT THANK GOODNESS SOME ARE. SINCE MANAGED

HEALTHCARE ARRIVED ON THE SCENE, DOCTORS SPEND LESS AND LESS

TIME WITH PATIENTS AND MORE AND MORE TIME GETTING RID OF US SO

THEY CAN JUST GET THROUGH THEIR CASELOAD. THAT DOESN'T LEAVE

MUCH TIME FOR LEARNING AND EDUCATION NOW DOES IT.

> Expecting specialists that deal with female problems such as

> this to " know the lay of the land " is a statement that

> reflects

> that you expect them to know " everything " about every female

> illness out there and that is just not possible.

I DON'T BELIEVE THAT, DID NOT SAY THAT, AND PLEASE DON'T PUT

WORDS IN MY MOUTH. OF COURSE IT'S NOT POSSIBLE FOR ANYONE TO

KNOW " EVERYTHING. " BUT THEN IT'S NOT AN EITHER OR MATTER WE'RE

DISCUSSING.

> And as for the book yes, there are more doctors that are

> reading

> this but not all as of yet because of what they'll see in it.

HOPE THEY ARE ABLE TO READ IT WITH AN OPEN MIND BECAUSE IT IS

NOT FLATTERING TO THE MEDICAL PROFESSION.

> As for the shutting out patient input is insecurity, that is

> not

> necessarily true

I HAD SOMEONE WITH ME AT THE APPOINTMENTS IN QUESTION, AND OUR

MUTUAL TAKE WAS THAT THE DOCTORS WERE INSECURE AND MORE

INTERESTED IN REVERTING TO COMFY FORMULAIC INTERACTIONS THAN IN

LEARNING.WE TRIED TO ENGAGE THEM AND EVEN TOOK RESEARCH ARTICLES

IN, BUT THEY WEREN'T INTERESTED.

which is why I asked the question above about

> the age of the doctors that don't think they need more

> education

> or want to learn from patients.

WELL, I GAVE YOU THAT ANSWER ALREADY.

Janet

[Guest guest]

Janet,

When it comes to many of the Medical Schools and managed care

they don't accept HMOs. So the issue of Managed care having an

impact on how young doctors learn is not quite true. Because

there are faults with the system they are working to change

that.

And as for the young doctors that don't want to learn they get

that from their professors instead of taking the basic

information and forming their own opinions and not taking just

the opinion of their professors as if they are always right.

And I quoted what I did to comment on it not because I think you

did or didn't have a certain experience. Like you I've had bad

doctor experiences too but when I find a good doctor that

listens to me and is willing to learn then I know that there are

good doctors out there although they are sometimes hard to find.

And yes, most young doctors are eager to learn but the problem

is the professors when it comes to the young doctors that don't

want to learn which is why they are trying to make changes in

the Medical School. I'm just sorry that the changes are so late

in coming but at least it's starting to happen.

Also, another thing with Managed care, I had an HMO in the past

and each of my doctors that I had at the time spent plenty of

time with me to make sure that I got all the information I need.

I'm sorry that not everyone has had the chance to have this

happen. And even though I no longer am under the care of an HMO

my doctors still give me the time to make sure that I get all

the information I need in regards to my health problems. I hope

one day soon that others will get this opportunity. This needs

to change and some are working to change this although it

doesn't seem like it. We have a long way to go there's no doubt

about that.

As for the book there will be some that will be upset by what is

said in there and the author even acknowledged this and others

will be open to it and learn and make the changes.

Kristy

________________________________________________________________________________\

____

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[Guest guest]

,

I love your posts today! Amen!

I loved the movie, " The Business of Being Born " . If you have netflix,

you can watch it for free on your computer. Fabulous.

Also, I gotta say I love telling medical people about my problem when

they don't know what it is and making them feel like they should have

known (ie you have a medical degree and yet little old me knows WAY

more about this stuff than you). Not very nice of me, I suppose...but

they should know. Or at least not act like we're making it up when we

try to explain it to them. =)

Melinda

[Guest guest]

Interesting and lively discussion today! I have a few responses:

<I have one question for you ladies. If you all are so tired of

trying to tell these people in the Medical community what

vulvodynia and its subcategories are as to what they can do then

why the push to get this mentioned on Oprah's show and other

shows so that more money can be put out to try and find the

answer to what causes vulvodynia so that there become better

treatments and diagnostic methods for future generations?>

I disagree. Doctors and nurses go to school to be educated to be

experts in their given specialty field. They are required to take

continuing education classes. It is their JOB to educate themselves

about a problem that is so prevalent that as many as one in six women

(I believe that's an NVA statistic) will suffer from it. Getting the

word out via Oprah and such mediums is different as it educates the

general public. It gets the word out to Mrs. Middle America whose

crotch is on fire and whose doctor hasn't done his or her job to

educate themselves.

<And about how old would you say these doctors are>

Unfortunately, ignorance and ego know no age. I have met good and

bad people of all races, creeds, ages, and colors.

<Expecting specialists that deal with female problems such as

this to " know the lay of the land " is a statement that reflects

that you expect them to know " everything " about every female

illness out there and that is just not possible.>

I disagree. A specialist's job is to be up-to-date on the most

current research and issues in the field, and if something comes into

their office that they don't know what it is or how to treat, it is

their job to consult with colleagues or turn to medical journals and

find out what it is, not just send the woman away with a $250 bill

and still in pain with zero answers.

<When it comes to many of the Medical Schools and managed care

they don't accept HMOs. So the issue of Managed care having an

impact on how young doctors learn is not quite true>

I would be interested to see where this fact comes from, or perhaps

it is an opinion? I know that the teaching hospital medical school

in my area (UC ) sees predominately HMO patients and county

Medicaid (welfare), as most patients with PPOs won't put up with the

long waits, shoddy service, and being taught on. A person I know was

naked from the waist down, legs spread on a table with her feet in

stirrups in a room full of strangers when the attending doctor

said, " Now you don't mind if the resident tries this procedure on

you, do you? " That's not exactly informed consent.

<I had an HMO in the past

and each of my doctors that I had at the time spent plenty of

time with me to make sure that I got all the information I need.>

You are very fortunate. Most people with HMOs do not have this

experience.

<And because of these ones that can help let's cut the Medical

profession as a whole some slack because they are still learning

just like you and I.>

Of course, it is their job to continue learning about new treatments,

diseases, and diagnosis. Not all of them do that. I will cut them

slack and give them respect in the cases that individual doctors earn

it. I don't automatically swoon over every doofus in a white coat.

<I am sick of paying doctors that say SORRY CAN " T HELP YOU, then you

get a bill for 250 bucks.>

I hear you! I ask you to consider not paying that bill, and instead

sending the hospital or doctor's office a letter (cc'ing the state

medical board) letting them know that you were not helped and that

you felt the doctor misrepresented themselves as being able to help

you when you called about the appointment. If you had known they

couldn't help you, you wouldn't have wasted your time. They might

send you to collections, they might reduce or forgive your bill. A

friend of mine was told she had pneumonia by an MD when she had

cancer. The MD didn't do simple tests that would've caught the

cancer earlier buying her precious months to begin treatment. When

she got the bill she didn't pay it and told them why. They sent her

a letter saying they had removed the charge from their books.

<Not very nice of me, I suppose...but

they should know>

Amen, sister. And you don't have to be nice. This is your body and

your life. You don't have to be nice to people who cannot even

minimally do their job to help you.

[Guest guest]

That is so true. Also it is my opinion that the connection with oxalates comes

from the fact that oxalates go through the intestinal tract and if they are not

absorbed through the walls of the intestine via the oxalobactor factor (some

people do not produce the oxalobactor) they produce radiating pain to the vulva.

Ora

On Tue, 25 Mar 2008 00:36:13 -0700 (PDT), Kristy Sokoloski

wrote:

>It's normal that in some specialties like GI they are not going

>to know what vulvodynia is because their specialty is not the

>female reproductive system although also learning about

>vulvodynia will help such as in a GI practice to help their

>patients if a GI problem is causing pain to radiate to the

>vulvar area such as in IBS for example.

[Guest guest]

I've got to reply to this one, hopefully I won't get in trouble for saying this online.

I was quite suicidal and making plans. But, damn if I was going to go to hell without taking a few doctors and one nurse with me. But I just couldn't figure out the logistics. I'd have to take out the urologist in my hometown (the one who told me that if I was afraid of the water to stay away from the ocean ????? - $250.00 please), and then I'd have to get to Denver three hours away to deal with the doctor who performed the surgery that made my pain worse and then told me to go see a psychiatrist immediately and physically escorted me out of his office (HIS surgery was a success, therefore the pain must be in my mind), and his nurse who laughed at me.

So, while this is half in jest and half not, it did keep my mind occupied for a bit of time when I was at my worst. And of course it was during this time that I was told about Dr. Weiss and Prendergast in San Francisco, with whom I was able to get a timely appointment and they ultimately got me on the road to being well and therefore saved my life.

Unfortunately, the doctors and nurse that I speak of, although they were the worst, they were not the only bad ones. I was told I had various mental issues by the majority of the 23 medical professionals I ended up seeing. Not one ever did a proper pelvic pain exam on me. Not one ever moved his/her fingers to the side to check my muscles or nerves. Not one ever checked my connective tissue sensitivity or checked me for a diastisis recti or leg length or watched me walk. They all said to do a kegel and to tighten, but not one of them said to relax afterward. All things which are so obvious to any one of us who have now been educated about this horrible condition.

love, Molly

Re: It's not just Drs.

,I love your posts today! Amen!I loved the movie, "The Business of Being Born". If you have netflix, you can watch it for free on your computer. Fabulous.Also, I gotta say I love telling medical people about my problem when they don't know what it is and making them feel like they should have known (ie you have a medical degree and yet little old me knows WAY more about this stuff than you). Not very nice of me, I suppose...but they should know. Or at least not act like we're making it up when we try to explain it to them. =) Melinda

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[Guest guest]

HI all and esp.Molly.. *smile*

Hon I've sure been gone a while, and I was just trying to play catch

up a little bit when I saw your message and you scared me to death

*grin*..*whew... I thought O'M'Gosh did Molly slip off the deep end

or what?

That is, until I read further and realized you were half in jest, LOL

but I certainly understood where you were coming from hon. No doubt

many of us have been there ourselves. I sure did feel your anger and

know exactly why and it is justified. It's unbelieveable that you

never had a proper pelvic exam. I am so sorry hon.. I remember so

many of your earlier posts and know what you went thru.

Anyway I hope you're more calm and rational about it now *smile* and

no sense crying over spilled milk (much as we'd like to) the anger

and frustration only comes to bite us back, not them... and at least

TG you did find help and on the way to wellness hon. Much continued

success and just so happy for you!

Big

(((HUGS)))

Dee ~

[Guest guest]

I am replying to my own self here...I cant help it and get angry

with myself - but I am embarrassed sometimes to have to explain

Vulvodynia. Perhaps it is my age - 56 - and I am not as direct as I

should be. I admire how tenacious most of you are . I never heard of V

until I started resrearching it 3 years ago so I guess I wasnt very

informed either.

>

> In Novemeber and January, I had to have two colonoscopies ! All is

well

> but during those two pre-ops and phone interviews and follow ups etc.

I

> had several NURSES look like dunces.....I had to list my medications

and

> when they asked me what the Neuronitn was for.....I replied , "

> Vulvodynia " ....and I got a couple of " What did you say ? " and a "

> VulvoWHAT? from nurses.....female nurses. It is discouraging.

>

[Guest guest]

Oh Gosh, I don't think about it anymore, not like that anyway. I guess my point was (after a bit of wine at dinner) that in my case the doctors being jerks actually kept me from doing something horrible to myself. It bought me a bit of time.

love, Molly

Re: It's not just Drs.

HI all and esp.Molly.. *smile* Hon I've sure been gone a while, and I was just trying to play catch up a little bit when I saw your message and you scared me to death *grin*..*whew. .. I thought O'M'Gosh did Molly slip off the deep end or what? That is, until I read further and realized you were half in jest, LOL but I certainly understood where you were coming from hon. No doubt many of us have been there ourselves. I sure did feel your anger and know exactly why and it is justified. It's unbelieveable that you never had a proper pelvic exam. I am so sorry hon.. I remember so many of your earlier posts and know what you went thru.Anyway I hope you're more calm and rational about it now *smile* and no sense crying over spilled milk (much as we'd like to) the anger and frustration only comes to bite us back, not them... and at least TG you did find help and on the way to wellness

hon. Much continued success and just so happy for you!Big (((HUGS)))Dee ~

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[Guest guest]

I don't get too upset about having to explain pelvic pain. I feel it is myduty to spread the word. It is how they react and listen to me that I make my judgement on. I am sure that I have been laughed at behind my back and I'm sure that the articles I've brought have been thrown in the trash by many. However, there have been a few who have actually listened and been interested and for that I am grateful.

Re: It's not just Drs.

I am replying to my own self here...I cant help it and get angrywith myself - but I am embarrassed sometimes to have to explainVulvodynia. Perhaps it is my age - 56 - and I am not as direct as Ishould be. I admire how tenacious most of you are . I never heard of Vuntil I started resrearching it 3 years ago so I guess I wasnt veryinformed either.>> In Novemeber and January, I had to have two colonoscopies ! All iswell> but during those two pre-ops and phone interviews and follow ups etc.I> had several NURSES look like dunces.....I had to list my medicationsand> when they asked me what the Neuronitn was for.....I replied ,"> Vulvodynia" ....and I got a couple

of "What did you say ? " and a "> VulvoWHAT? from nurses.....female nurses. It is discouraging.>

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[Guest guest]

This is a prime example why us women get so FRUSTRATED with doctors, especially OBGYN doctors. I had an appt. on Tuesday with a new OBGYN and when I made the appt., I was told the doctor had knowledge regarding VVS, yay I thought! The doctor came in and I gave her a brief synopsis of what my issues are and she said, "sometimes I'll see one patient a year for this type of pain." I was baffled and right then I knew the chances of her helping were slim to none. Towards the end of my appt., I asked her if she'd take a look at a few pages of research from this group and she told me she would when she got the chance....balony I know damn well she's not going to because she's not interested in learning. I told her my opinion is that birth control pills and anti-fungals can have a lasting effect on our tissues and she disagreed. The ONLY thing she did for me and thats because I asked was wrote me a Rx for estrace cream. All I can say is I'm tired of paying $20 and up to doctors who claim to know about VVS and don't have a clue....shoot I'm more knowledgeable then they are and they have MD after there names. I saw a VVS specialist at Stanford, her personality is great but I expected her to be more informative. For heaven sakes, this is her speciality and I still didn't get my questions answered.

**

Re: It's not just Drs.

Interesting and lively discussion today! I have a few responses:

<I have one question for you ladies. If you all are so tired of

trying to tell these people in the Medical community what

vulvodynia and its subcategories are as to what they can do then

why the push to get this mentioned on Oprah's show and other

shows so that more money can be put out to try and find the

answer to what causes vulvodynia so that there become better

treatments and diagnostic methods for future generations?>

I disagree. Doctors and nurses go to school to be educated to be

experts in their given specialty field. They are required to take

continuing education classes. It is their JOB to educate themselves

about a problem that is so prevalent that as many as one in six women

(I believe that's an NVA statistic) will suffer from it. Getting the

word out via Oprah and such mediums is different as it educates the

general public. It gets the word out to Mrs. Middle America whose

crotch is on fire and whose doctor hasn't done his or her job to

educate themselves.

<And about how old would you say these doctors are>

Unfortunately, ignorance and ego know no age. I have met good and

bad people of all races, creeds, ages, and colors.

<Expecting specialists that deal with female problems such as

this to "know the lay of the land" is a statement that reflects

that you expect them to know "everything" about every female

illness out there and that is just not possible.>

I disagree. A specialist's job is to be up-to-date on the most

current research and issues in the field, and if something comes into

their office that they don't know what it is or how to treat, it is

their job to consult with colleagues or turn to medical journals and

find out what it is, not just send the woman away with a $250 bill

and still in pain with zero answers.

<When it comes to many of the Medical Schools and managed care

they don't accept HMOs. So the issue of Managed care having an

impact on how young doctors learn is not quite true>

I would be interested to see where this fact comes from, or perhaps

it is an opinion? I know that the teaching hospital medical school

in my area (UC ) sees predominately HMO patients and county

Medicaid (welfare), as most patients with PPOs won't put up with the

long waits, shoddy service, and being taught on. A person I know was

naked from the waist down, legs spread on a table with her feet in

stirrups in a room full of strangers when the attending doctor

said, "Now you don't mind if the resident tries this procedure on

you, do you?" That's not exactly informed consent.

<I had an HMO in the past

and each of my doctors that I had at the time spent plenty of

time with me to make sure that I got all the information I need.>

You are very fortunate. Most people with HMOs do not have this

experience.

<And because of these ones that can help let's cut the Medical

profession as a whole some slack because they are still learning

just like you and I.>

Of course, it is their job to continue learning about new treatments,

diseases, and diagnosis. Not all of them do that. I will cut them

slack and give them respect in the cases that individual doctors earn

it. I don't automatically swoon over every doofus in a white coat.

<I am sick of paying doctors that say SORRY CAN"T HELP YOU, then you

get a bill for 250 bucks.>

I hear you! I ask you to consider not paying that bill, and instead

sending the hospital or doctor's office a letter (cc'ing the state

medical board) letting them know that you were not helped and that

you felt the doctor misrepresented themselves as being able to help

you when you called about the appointment. If you had known they

couldn't help you, you wouldn't have wasted your time. They might

send you to collections, they might reduce or forgive your bill. A

friend of mine was told she had pneumonia by an MD when she had

cancer. The MD didn't do simple tests that would've caught the

cancer earlier buying her precious months to begin treatment. When

she got the bill she didn't pay it and told them why. They sent her

a letter saying they had removed the charge from their books.

<Not very nice of me, I suppose...but

they should know>

Amen, sister. And you don't have to be nice. This is your body and

your life. You don't have to be nice to people who cannot even

minimally do their job to help you.

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[Guest guest]

I agree. I am also 56 and I have had VV for 14 years. I hate when I

have to explain it to anyone, health care professional or not. My

brother still does not know. Many of my friends do not know and they

wonder why I am always popping pills of one kind or another. I am

afraid they will be grossed out if I explain it.

It is too embarrassing. I recently started " hypnotherapy " and I had to

explain it to the therapist. I assumed he would already know. Last

time I tried Hypnotherapy was 10 years ago and that therapist already

knew about VV.

> >

> > In Novemeber and January, I had to have two colonoscopies ! All is

> well

> > but during those two pre-ops and phone interviews and follow ups etc.

> I

> > had several NURSES look like dunces.....I had to list my medications

> and

> > when they asked me what the Neuronitn was for.....I replied , "

> > Vulvodynia " ....and I got a couple of " What did you say ? " and a "

> > VulvoWHAT? from nurses.....female nurses. It is discouraging.

> >

>