Re: So distraught Miranda

[Guest guest]

Sounds like you found yet another unhelpful health

professional. the one thing I might share, though, is

some things that appear to just mask the problem

actually also cure it - ending the pain cycle, for

example, reduces the overgrowth of receptors. For some

women, the overgrowth of receptors continues long

after the cause is gone - and is the only remaining

problem.

Lidocane has helped some women - there is a 7-week

program at night many have used - I had a hard time

deciding how to use it (my gyn said for sex) but found

that it did not numb my sexual response or that of my

partner, if used ahead of time - I can barely tell

that it works when I put it on, and then later I

think, hey, it worked. It doesn't always help as much

as I would like.

--- Snofyre wrote:

> What at totally uniformed, unprofessional dr.

> Our hearts and prayers are with you.

>

> wavemiranda wrote:

> Well I had my appointment today at St.

> 's with Dr. G____and

> once again my hopes were dashed. He was the worst of

> anyone I have

> yet seen. I am so depressed. The only useful thing

> about taking an

> entire day off my work to see him was that I get to

> see my friends

> in Toronto. I hope they can make me feel better.

>

> Just in case this helps others in my area I would

> like to write

> about my experience. Also I have no one else to talk

> to about this.

> This is the only way I can vent...

>

> My appointment started out with a great nurse who

> asked me lots of

> questions about my symptoms etc. I waited there half

> an hour with

> nothing on my cold bare bottom until Dr. finally

> emerged.

>

> He came in, asked me questions about my symptoms

> while I got my feet

> into the stirrups. We were having a decent

> conversation and I was

> optimistic, when all of a sudden I felt excruciating

> pain. I

> shrieked. He had decided to examine me, without even

> giving me a

> warning. It was so inconsiderate. I don't know if he

> thought that

> would help me relax but it didn't. It HURT REALLY

> BAD. I was crying

> and I just ended the conversation right there. Nurse

> was in the room

> too at the point. He said " oh, sorry I should have

> warned you "

> Normally if a doctor warns me, I can make a

> conscious effort to

> relax and it won't hurt as bad. I didn't even have

> time to do that.

> And I'm pretty sure that no lube was even used. I

> saw him put it on

> after the first instrument thingy went into me.

>

> After he poked at me for a while with different

> things - not even

> telling me what he was doing, he told me to sit up.

> Then he told me

> what every single other doctor told me.

>

> " Well it looks like you have vulvodynia and vulvar

> vestibulitis

> syndrome. "

>

> I felt like screaming, " No SHIT Sherlock, isn't that

> why I was

> referred here??? "

>

> Then he asked me, " have you ever heard of that? " All

> I can say is he

> must not have even read my records that they sent me

> from Women's

> College.

>

> Then he said, " your main symptoms seems to be pain

> with sex so we'll

> treat that with lidocaine. "

>

> I listened to him describe the procedures of using

> lidocaine -

> which, by the way I already know from my own

> research. In the middle

> of his speech I said " I'm not interested in using

> anything that is

> not a long-term solution to this problem. " I told

> him about my

> research, and said that based on my own research I

> would rather not

> have sex at all then just 'numb the area.' I told

> him this would

> neither please me, nor my boyfriend.

>

> Then he asked me what research I had done. I told

> him I'd read a lot

> on the internet, and I was on a support group with

> other women

> dealing with this who had seen several doctors in

> North America

> about their problem.

>

> He basically said that this was all unreliable

> information. He said

> that I should go to Glazer's website and the

> National

> Vulvodynia Association Website, and that those were

> the only

> reliable pieces of info out there (basically).

>

> I'm sorry, but this guy was full of it. When I asked

> him about

> ruling out underlying causes and getting tested for

> hormones, endo

> etc. He wouldn't hear it.

>

> He said " These problems have NOTHING to do with VV "

> and he was firm

> in that belief.

>

> Then he went on to say I probably had issues because

> of how many

> bladder infections I had and all the antibiotics I

> was on. I said to

> him, sorry buddy, I got the bladder infections after

> I got the

> VV...LONG after. He acted like I'd 'one-upped- him'

> and said well we

> don't really know what causes it.

>

> So then, I said " then how do you know that

> underlying causes like

> endo and hormonal issues have 'NOTHING TO DO WITH

> IT' "

>

> He had no answer to that one let me tell you. He

> just said I should

> go see my family doctor and get other tests if I

> wanted them done.

>

> He said on my next appointment (not now because I

> wouldn't accept

> the lidocaine, oh no) I could maybe try estrogen

> cream, and that the

> next step was biofeedback. (By the way it is

> expensive and I would

> have to pay for it myself...no thanks ass hole do

> you think I'm made

> of money) He said I could try dilators which are

> cheaper- which I

> dont really see the point of since thats not going

> to 'cure me'. He

> said if none of this worked, they would do a surgery

> to do " a small

> procedure down there' oh yes, small indeed. A

> vestibulectomy is

> exactly what I'd consider a 'small procedure.'

>

> So I basically went there, took the whole day off

> work, lost money,

> for NOTHING. I feel discouraged and upset that

> someone can be so

> close minded about everything. I am so depressed. I

> can't go and

> waste time seeing these specialists when they all

> tell me this same

> BS. I made another appointment anyway, because where

> else do I have

> to turn? If this is 'the top of the ladder' in

> treatments, I don't

> want to hear it. I think I'll end up cancelling that

> appointment,

> but I want to keep an open mind- I have to. When I'm

> living in the

> city at least I won't have to take days off. I just

> feel like such

> shit right now. So useless and so broken down. After

> the doctor

> left, the nurse asked me if I was ok. She was the

> only one who

> actually cared. And then I took his 'What is

> vulvodynia' checklist

> (the same one I had been given by Women's College

> Hospital in

> JANUARY), crumpled it up, and threw it in the trash

> because that's

> exactly where he and his ignorance belong.

>

> Miranda

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi everyone. Well I've had the whole day to think about it, and talk

to some very good friends. I spent way too much at the mall thanks

to my awful experience (thank you H & M for making me happy again).

I don't think I'm going to go back to this doctor. Even the thought

of someone examining me in that way makes me cringe. I was sitting

on the bus on the way home tonight and I had tears in my eyes

because I just kept thinking about the insensitivity. I'm going to

go back to my family doctor, and back to Women's College for a

different referral in the far future. (that is after my internship

in BC) I feel a bit traumatized by the whole thing, and I think I

will write a letter. I don't usually do that sort of thing because

I'm the kind of person who wants to believe the best of everyone,

but I think I can do it in a diplomatic way.

McTwirly- Before I made my final decision, I asked this doctor

specifically if this cream had any effects to work against my pain

in the long term ie- if it would help me to use it for a while and

there may be any positive outcome. He said no, that it was just used

for sex and that since my 'only real symptom' was pain with

intercourse, that I could be able to have sex with the lidocaine but

it would not make me feel better in long term. He kept saying " there

is just no cure for this. There just is no cure " I'm sorry but there

are several women who have got better from this, and I refuse to

believe that. There is a cure, even though it might not be the same

one for every girl He never mentioned that there was a 7week plan or

that the cream could have any effect on pain recepters. I think he

was just clueless if this is the case. But so far, I have never met

a woman who was 'cured' by lidocaine and most seem to have burning

and red raw skin after longterm or frequent use... If there are any

out there who have been cured or greatly improved long after they

have used lidocaine and stopped using it, let me know, because it

might change my mind about trying it in the future.

pa- Kristi- I'm in borough, it's about two hours from Toronto.

I live in Toronto during the school year. Thanks for your kind

words. I never knew Glazer wasn't an MD. Very interesting maybe I

will add that in my letter. And thank you everyone for making me

feel validated in my response.

Miranda

> > Well I had my appointment today at St.

> > 's with Dr. G____and

> > once again my hopes were dashed. He was the worst of

> > anyone I have

> > yet seen. I am so depressed. The only useful thing

> > about taking an

> > entire day off my work to see him was that I get to

> > see my friends

> > in Toronto. I hope they can make me feel better.

> >

> > Just in case this helps others in my area I would

> > like to write

> > about my experience. Also I have no one else to talk

> > to about this.

> > This is the only way I can vent...

> >

> > My appointment started out with a great nurse who

> > asked me lots of

> > questions about my symptoms etc. I waited there half

> > an hour with

> > nothing on my cold bare bottom until Dr. finally

> > emerged.

> >

> > He came in, asked me questions about my symptoms

> > while I got my feet

> > into the stirrups. We were having a decent

> > conversation and I was

> > optimistic, when all of a sudden I felt excruciating

> > pain. I

> > shrieked. He had decided to examine me, without even

> > giving me a

> > warning. It was so inconsiderate. I don't know if he

> > thought that

> > would help me relax but it didn't. It HURT REALLY

> > BAD. I was crying

> > and I just ended the conversation right there. Nurse

> > was in the room

> > too at the point. He said " oh, sorry I should have

> > warned you "

> > Normally if a doctor warns me, I can make a

> > conscious effort to

> > relax and it won't hurt as bad. I didn't even have

> > time to do that.

> > And I'm pretty sure that no lube was even used. I

> > saw him put it on

> > after the first instrument thingy went into me.

> >

> > After he poked at me for a while with different

> > things - not even

> > telling me what he was doing, he told me to sit up.

> > Then he told me

> > what every single other doctor told me.

> >

> > " Well it looks like you have vulvodynia and vulvar

> > vestibulitis

> > syndrome. "

> >

> > I felt like screaming, " No SHIT Sherlock, isn't that

> > why I was

> > referred here??? "

> >

> > Then he asked me, " have you ever heard of that? " All

> > I can say is he

> > must not have even read my records that they sent me

> > from Women's

> > College.

> >

> > Then he said, " your main symptoms seems to be pain

> > with sex so we'll

> > treat that with lidocaine. "

> >

> > I listened to him describe the procedures of using

> > lidocaine -

> > which, by the way I already know from my own

> > research. In the middle

> > of his speech I said " I'm not interested in using

> > anything that is

> > not a long-term solution to this problem. " I told

> > him about my

> > research, and said that based on my own research I

> > would rather not

> > have sex at all then just 'numb the area.' I told

> > him this would

> > neither please me, nor my boyfriend.

> >

> > Then he asked me what research I had done. I told

> > him I'd read a lot

> > on the internet, and I was on a support group with

> > other women

> > dealing with this who had seen several doctors in

> > North America

> > about their problem.

> >

> > He basically said that this was all unreliable

> > information. He said

> > that I should go to Glazer's website and the

> > National

> > Vulvodynia Association Website, and that those were

> > the only

> > reliable pieces of info out there (basically).

> >

> > I'm sorry, but this guy was full of it. When I asked

> > him about

> > ruling out underlying causes and getting tested for

> > hormones, endo

> > etc. He wouldn't hear it.

> >

> > He said " These problems have NOTHING to do with VV "

> > and he was firm

> > in that belief.

> >

> > Then he went on to say I probably had issues because

> > of how many

> > bladder infections I had and all the antibiotics I

> > was on. I said to

> > him, sorry buddy, I got the bladder infections after

> > I got the

> > VV...LONG after. He acted like I'd 'one-upped- him'

> > and said well we

> > don't really know what causes it.

> >

> > So then, I said " then how do you know that

> > underlying causes like

> > endo and hormonal issues have 'NOTHING TO DO WITH

> > IT' "

> >

> > He had no answer to that one let me tell you. He

> > just said I should

> > go see my family doctor and get other tests if I

> > wanted them done.

> >

> > He said on my next appointment (not now because I

> > wouldn't accept

> > the lidocaine, oh no) I could maybe try estrogen

> > cream, and that the

> > next step was biofeedback. (By the way it is

> > expensive and I would

> > have to pay for it myself...no thanks ass hole do

> > you think I'm made

> > of money) He said I could try dilators which are

> > cheaper- which I

> > dont really see the point of since thats not going

> > to 'cure me'. He

> > said if none of this worked, they would do a surgery

> > to do " a small

> > procedure down there' oh yes, small indeed. A

> > vestibulectomy is

> > exactly what I'd consider a 'small procedure.'

> >

> > So I basically went there, took the whole day off

> > work, lost money,

> > for NOTHING. I feel discouraged and upset that

> > someone can be so

> > close minded about everything. I am so depressed. I

> > can't go and

> > waste time seeing these specialists when they all

> > tell me this same

> > BS. I made another appointment anyway, because where

> > else do I have

> > to turn? If this is 'the top of the ladder' in

> > treatments, I don't

> > want to hear it. I think I'll end up cancelling that

> > appointment,

> > but I want to keep an open mind- I have to. When I'm

> > living in the

> > city at least I won't have to take days off. I just

> > feel like such

> > shit right now. So useless and so broken down. After

> > the doctor

> > left, the nurse asked me if I was ok. She was the

> > only one who

> > actually cared. And then I took his 'What is

> > vulvodynia' checklist

> > (the same one I had been given by Women's College

> > Hospital in

> > JANUARY), crumpled it up, and threw it in the trash

> > because that's

> > exactly where he and his ignorance belong.

> >

> > Miranda

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Miranda,

I don't blame you for wanting to write a letter to the office of

this dr to let them know how you feel. I did that to a dr I had

once. I don't know if he ever read it but I sure felt better

writing it and getting my feelings out.

As for Dr. Glazer he is a psychologist. And his main thing is

to push biofeedback on patients.

I know that on his personal site the people were using the

guestbooks like a message board or e-mail list even though he

tried to tell them at one time to move to one of the two lists

thru Yahoo he was involved with. One of them that used to be

very much in to discussing only about the biofeedback (had been

on that list for a short time when it was like that), and then

now it's gone in to other discussions about vulvodynia. I left

that list about a year ago so I don't know what's the latest as

far as some of the treatments being suggested and such.

Pls feel free to e-mail me privately any time.

Kristy

__________________________________________________