Re:question on V words and my visit to Dr.

[Guest guest]

Becky, it doesn’t

matter (the “V” words – they are all the same). I went

to my pre-surgical visit to Dr.

’s office yesterday (because

I have LS) and tied her ( –

her associate) down with some very hard questions for her to answer. I asked

her what was the difference between all those “V” words, and what EXACTLY

the treatments were for all of them. I don’t think she was too happy to

answer my questions, but she did say they were virtually all the same (the “V”

words) with all basically the same treatments. The list of treatments and

suggestions - they are ALL here, from all of you, and from Dee. She prescribes all

the medications (Amitriptalyne, Neurontin, Lyrica, etc. etc. – there are

dozens) and the numbing creams/gels (Lidocaine or compounded with other medications,

etc.), plus the other topicals that Dee

has on her lists, plus the suggestions for diets, etc., plus the IC issues and

even IBS. EVERYTHING that we discuss here - is what she recommends. But

she won’t prescribe “T”, as Dee likes to call it, unless it is for

hormonal issues. And she admitted that there is no one thing (method) that

works for everyone, and a lot of time nothing works for anybody. And that is

why she is so busy with appointments, because women keep coming back, and back,

and back, looking for another solution, and so she tries something else on them.

So please, don’t think you are missing out on information because you do

not have the opportunity to see Dr. .

Buy her book, which I think is excellent for putting al the information together

in one spot, and keep reading the posts on this list. But obviously, you do

need a doctor familiar enough with vulvar issues to prescribe medication.

I asked her what else I could do, and she

said nothing – I have done it all, there was nothing more she could

suggest. (That was encouraging LOL.) I told her I was having a vestibulectomy,

which she immediately and adamantly discouraged, because she didn’t think

the results were very good, plus it would irritate my LS. She also said Liz (as she calls Doctor ) no longer does them, but reading

between the lines, I had the feeling that she just doesn’t want to do

them anymore. And she was horrified that I was having pudendal nerve

compression surgery done. But on continuing the conversation with her, not only

did she not know who my doctor was, but she had no idea what the surgery entailed

that I was having. But (even though she didn’t know what it was) she still

didn’t want me to have it. (LOL) So upon leaving she said she was sorry

that she couldn’t help me with any of my vulvar (that includes all those

that start with a V) problems, and she hoped I would reconsider having the

surgery done, but she would be very interested in hearing how I did following

surgery (if I still decided to have it). So, in retrospect my husband and I

have had a good laugh all the way home about it. She couldn’t help me,

but she didn’t want anyone else to help me either.

My conclusion – that is the end of Dr. .

I am going to go to my pudendal specialist for all my GYN issues. When I last

talked to him he said (besides the fact that he is very confident that he will

fix my pudendal nerve), that he has had great success with the vestibulectomies

(95% success rate), and that his LS patients actually got better after having a

vestibulectomy. Plus he feels the nerve compression surgery will take care of

any vestibulitis/vulvadynia problems, as my vulvar problems are being caused by

the pudendal nerve over firing and sending the pain to the vulvar surface. I

just can’t believe that Dr.

can be so right and my doctor

so wrong (or vice versus) LOL.

The best part of the whole visit was that

the nurse who came into the exam room first, and who could see I could barely

walk - wished me good luck and gave me a big hug. I could tell she was sincerely

concerned, and hoped I would feel better.

nne

[Guest guest]

I'm replying to a post that is a few days old, but I had to add my 2

cents. Dr. was the first doctor I saw for my pain. I saw her

for several months and did not have a good experience. A bunch of

things in this post echoed my experience UNCANNILY, most notably that

and told you " lots of women don't get better " , sometimes

nothing works, that's why we're so busy. I heard all of this from

them and my psychiatrist at the time found their approach just

BIZARRE. She said she'd seen terminal cancer patients whose doctors

weren't this negative!!! (And keep in mind: I was newly diagnosed &

just starting treatment.) I think Dr. 's book is really great,

but I think we need to question why she and her staff feel the need to

bang women over the head with the idea that lots of women don't get

better! Even if there are lots of women who don't get better, many

do. So why push the negative so hard? At the time I saw , she

had a nurse named Debbie who would tell me EVERY TIME I called that

there are lots of women nothing works for and--this was my

favorite--we see " some women whose lives are living hells. " I'm doing

really well now and I truly believe that 's negativity

contributed to a vicious cycle of depression and pain for me. A

doctor I saw subsequently told me that studies have been done with

cancer patients that illustrate the ones who believe they have no hope

experience more pain than comparably ill ones who believe they will

improve. So what's up to? If I were a total cynic, I would

say that she has a bit of celebrity as a V-specialist and depicting

vulvar problems as an epidemic, incurable, life-destroying plague

makes her work seem more... important? I don't know why else she

would do it. I apologize if I've offended anyone. I take no glee in

bad-mouthing doctors, but this post reminded me of some very dark,

scary days when I was seeing Dr. and truly believing I was

doomed. That's 6 years ago and I am doing well, so... HANG IN, GIRLS!

Lia

>

> Becky, it doesn't matter (the " V " words - they are all the same). I

went to

> my pre-surgical visit to Dr. 's office yesterday (because I

have LS)

> and tied her ( - her associate) down with some very hard

questions for

> her to answer. I asked her what was the difference between all those " V "

> words, and what EXACTLY the treatments were for all of them. I don't

think

> she was too happy to answer my questions, but she did say they were

> virtually all the same (the " V " words) with all basically the same

> treatments. The list of treatments and suggestions - they are ALL

here, from

> all of you, and from Dee. She prescribes all the medications

(Amitriptalyne,

> Neurontin, Lyrica, etc. etc. - there are dozens) and the numbing

creams/gels

> (Lidocaine or compounded with other medications, etc.), plus the other

> topicals that Dee has on her lists, plus the suggestions for diets,

etc.,

> plus the IC issues and even IBS. EVERYTHING that we discuss here -

is what

> she recommends. But she won't prescribe " T " , as Dee likes to call

it, unless

> it is for hormonal issues. And she admitted that there is no one thing

> (method) that works for everyone, and a lot of time nothing works for

> anybody. And that is why she is so busy with appointments, because women

> keep coming back, and back, and back, looking for another solution,

and so

> she tries something else on them. So please, don't think you are

missing out

> on information because you do not have the opportunity to see Dr.

.

> Buy her book, which I think is excellent for putting al the information

> together in one spot, and keep reading the posts on this list. But

> obviously, you do need a doctor familiar enough with vulvar issues to

> prescribe medication.

>

> I asked her what else I could do, and she said nothing - I have done

it all,

> there was nothing more she could suggest. (That was encouraging

LOL.) I told

> her I was having a vestibulectomy, which she immediately and adamantly

> discouraged, because she didn't think the results were very good,

plus it

> would irritate my LS. She also said Liz (as she calls Doctor ) no

> longer does them, but reading between the lines, I had the feeling

that she

> just doesn't want to do them anymore. And she was horrified that I was

> having pudendal nerve compression surgery done. But on continuing the

> conversation with her, not only did she not know who my doctor was,

but she

> had no idea what the surgery entailed that I was having. But (even

though

> she didn't know what it was) she still didn't want me to have it.

(LOL) So

> upon leaving she said she was sorry that she couldn't help me with

any of my

> vulvar (that includes all those that start with a V) problems, and

she hoped

> I would reconsider having the surgery done, but she would be very

interested

> in hearing how I did following surgery (if I still decided to have

it). So,

> in retrospect my husband and I have had a good laugh all the way

home about

> it. She couldn't help me, but she didn't want anyone else to help me

either.

>

> My conclusion - that is the end of Dr. . I am going to go to my

> pudendal specialist for all my GYN issues. When I last talked to him

he said

> (besides the fact that he is very confident that he will fix my pudendal

> nerve), that he has had great success with the vestibulectomies (95%

success

> rate), and that his LS patients actually got better after having a

> vestibulectomy. Plus he feels the nerve compression surgery will

take care

> of any vestibulitis/vulvadynia problems, as my vulvar problems are being

> caused by the pudendal nerve over firing and sending the pain to the

vulvar

> surface. I just can't believe that Dr. can be so right and

my doctor

> so wrong (or vice versus) LOL.

>

> The best part of the whole visit was that the nurse who came into

the exam

> room first, and who could see I could barely walk - wished me good

luck and

> gave me a big hug. I could tell she was sincerely concerned, and hoped I

> would feel better.

>

> nne

>