surgery

[Guest guest]

----------

>

> To: beannie@...

> Subject: RE: Re: Surgery

> Date: Wednesday, February 03, 1999 5:24 PM

>

> (and others who have had surgery):

>

> Please do NOT think that I am being unsupportive by questioning a theory

that I

> have heard passed around!! I am just trying to gain some more

understanding of

> this vicious condition and the possible treatments. I am supportive of

every

> person on this list and respect you all as intelligent women who make

informed

> decisions on what treatments to pursue. I really don't think that anyone

else

> who has voiced their opinion is being unsupportive either, but rather

just

> sharing their opinions as I requested that they do. We owe it to

ourselves and

> each other to explore ALL our options and the positives, negatives, and

> possibilities involved.

>

> With that being said, I must admit that Robin pretty much hit it right on

the

> head when she brought up her cut finger being numb theory. That is

exactly what

> brought this to mind - and then when Becky posted about having no pain

with

> dilation of her vagina but experiencing bleeding - it made me wonder. I

> recently cut my finger badly and deeply and it is still numb. This was

done

> over a week ago, so I can only imagine what it would be like to have

major

> surgery and the trauma that the nerve endings would experience.

>

> Regarding 's comment about it not being a nerve ending issue - with

all due

> respect, doesn't every kind of invasion/surgery/cutting/wounding process

affect

> the nerve endings?

>

> Again - please don't interpret my questions as negative or unsupportive.

I'm

> just trying to understand.

>

> Warmly,

> Heidi

>

> ___________________________________________________________________

> Sent via Fetchmail - free email service at http://www.fetchmail.com

>

[Guest guest]

, all,

I didn't mean to sound unsupportive of surgery in my earlier post. I lived

with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for

six years and as far as I'm concerned ladies, whatever works for you, do

it!!! Anything to get out of this vulvodynia nightmare!!

Before I saw Dr. I did some research on surgery in case he suggested

it at some point. Thankfully, I was a quick fix so I never had to deal with

the issue.

, I truly wish you continued success with your surgery results.

Robin

Surgery

>

>

>

>

> I have a question regarding the surgery issue which I'm not sure anyone

> will have an answer to, but I'm going to ask anyway.

>

> Is it possible that after surgery your nerve endings are not good

> indicators of pain because of the trauma they've endured and so will

> make it feel like you have no pain now, but as time goes on, you will

> end up in pain again? I've heard this theory before and I'm probably

> not using the right terminology - but I hope you get the point of the

> question.

>

> What do you think?

> Heidi

>

> ------------------------------------------------------------------------

>

[Guest guest]

, all,

I didn't mean to sound unsupportive of surgery in my earlier post. I lived

with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for

six years and as far as I'm concerned ladies, whatever works for you, do

it!!! Anything to get out of this vulvodynia nightmare!!

Before I saw Dr. I did some research on surgery in case he suggested

it at some point. Thankfully, I was a quick fix so I never had to deal with

the issue.

, I truly wish you continued success with your surgery results.

Robin

Surgery

>

>

>

>

> I have a question regarding the surgery issue which I'm not sure anyone

> will have an answer to, but I'm going to ask anyway.

>

> Is it possible that after surgery your nerve endings are not good

> indicators of pain because of the trauma they've endured and so will

> make it feel like you have no pain now, but as time goes on, you will

> end up in pain again? I've heard this theory before and I'm probably

> not using the right terminology - but I hope you get the point of the

> question.

>

> What do you think?

> Heidi

>

> ------------------------------------------------------------------------

>

[Guest guest]

Thanks Robin.

----------

>

> To: 'VulvarDisordersonelist'

> Subject: Re: Surgery

> Date: Wednesday, February 03, 1999 5:37 PM

>

>

>

> , all,

>

> I didn't mean to sound unsupportive of surgery in my earlier post. I

lived

> with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis)

for

> six years and as far as I'm concerned ladies, whatever works for you, do

> it!!! Anything to get out of this vulvodynia nightmare!!

>

> Before I saw Dr. I did some research on surgery in case he

suggested

> it at some point. Thankfully, I was a quick fix so I never had to deal

with

> the issue.

>

> , I truly wish you continued success with your surgery results.

>

> Robin

> Surgery

> >

> >

> >

> >

> > I have a question regarding the surgery issue which I'm not sure anyone

> > will have an answer to, but I'm going to ask anyway.

> >

> > Is it possible that after surgery your nerve endings are not good

> > indicators of pain because of the trauma they've endured and so will

> > make it feel like you have no pain now, but as time goes on, you will

> > end up in pain again? I've heard this theory before and I'm probably

> > not using the right terminology - but I hope you get the point of the

> > question.

> >

> > What do you think?

> > Heidi

> >

> >

------------------------------------------------------------------------

> >

[Guest guest]

Thanks Robin.

----------

>

> To: 'VulvarDisordersonelist'

> Subject: Re: Surgery

> Date: Wednesday, February 03, 1999 5:37 PM

>

>

>

> , all,

>

> I didn't mean to sound unsupportive of surgery in my earlier post. I

lived

> with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis)

for

> six years and as far as I'm concerned ladies, whatever works for you, do

> it!!! Anything to get out of this vulvodynia nightmare!!

>

> Before I saw Dr. I did some research on surgery in case he

suggested

> it at some point. Thankfully, I was a quick fix so I never had to deal

with

> the issue.

>

> , I truly wish you continued success with your surgery results.

>

> Robin

> Surgery

> >

> >

> >

> >

> > I have a question regarding the surgery issue which I'm not sure anyone

> > will have an answer to, but I'm going to ask anyway.

> >

> > Is it possible that after surgery your nerve endings are not good

> > indicators of pain because of the trauma they've endured and so will

> > make it feel like you have no pain now, but as time goes on, you will

> > end up in pain again? I've heard this theory before and I'm probably

> > not using the right terminology - but I hope you get the point of the

> > question.

> >

> > What do you think?

> > Heidi

> >

> >

------------------------------------------------------------------------

> >

[Guest guest]

Hi Heidi and All

->Is it possible that after surgery your nerve endings are not good

>indicators of pain because of the trauma they've endured and so will

>make it feel like you have no pain now, but as time goes on, you will

>end up in pain again? I've heard this theory before and I'm probably

>not using the right terminology - but I hope you get the point of the

>question.

I don't know the answer but when I was first diagnosed with vv I was told

about surgery. Basically, I was told that it had worked for some women (no

long term studies), but for most it hadn't - I was recommended not to have

it done.

Another consideration is, do the docs really know why they are doing the

surgery?

This is really interesting, and I would also like to know if anyone has the

answer.

Kind regards

- vvs, POC, burning

.@...

[Guest guest]

Whew! What a roller coaster of a day. This has truly been a hectic day

for me personally, at work and on the list.

Before I go to bed, I just wanted to post again about this whole surgery

debate that I sparked. First of all, I want to apologize again to

anyone who may have been offended by my questioning. Certainly that was

not my intention. Secondly, I want to say that I strongly encourage

intelligent conversation and debate about issues that surround VVS.

This is a very emotional issue for all of us, though, so we have to

remember two things: 1) be sensitive of all and consider how others may

perceive your posts before you send them and 2) don't necessarily assume

the worst - remember that we are all here to get and give support.

Obviously, there are many different feelings about surgery. All things

considered, I want to point out that it is the treatment method that has

the highest documented success rate (upwards of 80%). Of course surgery

is not for everyone - but it is the right answer for some, and obviously

has had very positive results thus far and there is no reason to

believe that her positive progress would not continue.

I truly believe that whatever treatments you pursue you should be

educated as completely as possible about them. Surgery is a complicated

issue with more potential risks than most treatments, so there is a lot

to consider. Women who have had negative experiences and women who have

had positive experiences should share their stories with all of us so

that we can all realize the possible outcomes.

No matter what, ladies, remember that I truly care deeply about all of

you, okay? I hope you all know that.

Warmly,

Heidi

[Guest guest]

Hi , Daina, and all others,

I was glad to hear that all of you are doing fine after your surgeries.

I have also been contemplating surgery, and I too have been surprised by

what I feel is a lack of support for this option. A few months ago when

I wrote that I was considering surgery I even got an anonymous " warning "

off-list not to go ahead with it. I do realize that most of those who

object to this treatment are genuinely concerned about our well-being

and just want to remind us of the risks and encourage us to exhaust all

other options first. However, this is a very emotional issue and it is

so very easy to mistake genuine concern for criticism.

I am still considering surgery, but there are still a few other options

that I would like to try before that (e.g. capsaicin). I am aware of the

risks associated with surgery, but I have also heard many success

stories. And , I think you made very good point when you wrote that

for all VVS treatments good results seem to be more the exception than

the rule. Unfortunately, that seems to be so true…

And Heidi, thank you for a wonderful web-site, it looks great and I hope

that many women looking for more information will find it. I also think

that you expressed yourself so well in your last post yesterday on

surgery, I think it summarized the discussion quite well. I am sure that

no one doubts your good intentions and by now we all know how deeply you

care for all of us. I can assure you that we are very grateful that

there is someone like you out there.

Warmly,

from Finland (POC)

[Guest guest]

Robin,

This is a. I was just wondering why the doctors misdiagnosed you with

vulvar vestibulitis? Did they do a q-tip test? If they did was there a lot

of pain like women with vestibulitis have when they did the test on you?

Also, how come they didn't diagnose you with cyclic vulvovaginitis due to

yeast in the first place? I'm just asking because I'm still not sure if my

vulvodynia is caused by chronic yeast or a yeast allergy or if yeast has

anything to do with my burning pain which is constant. I also want to ask who

how the doctors did diagnose you with the yeast problem? Did they do tests

for yeast through your blood? How did they find out that yeast was the cause?

I want to find the out the answer to that question too and I was just

wondering what tests should my doctor do to find out whether yeast is the

cause of my vulvodynia? I would really appreciate your feedback.

a

[Guest guest]

Beckie said:

>I asked him about the nerves and if they regenerate and will start to cause

>pain. He said that the nerves do regenerate but they are not the cause of

the

>pain. The pain in true vestibulitis comes from the vestibular glands

>themselves. Therefore, the pain will not come back.

>

Beckie,

I am just wondering, what are the " vestibular glands " exactly? The surgery

I had didn't deal with the v. glands I THINK. It was more the surface

tissues....actually, I really don't know what the heck I am talking about!!!

I am so confused. What are the reasons for different types of surgery for

vestibulitis (perinioplasty, vestibular revivsion, vulvoectomy -- sorry

about the spelling). Obviously, everyone's vulvar problem is different, but

then what is the common thing that holds together the diagnosis of

vestibulits -- just pain with a Q-tip!!??? Sorry, I am venting. Lots of

steam coming off from confusion. Were your v. glands removed totally? Does

your doctor think this is the only reason for vestibulitis? If the pain

comes from the glands, what is wrong with them? And why does the tissue

hurt so much on the surface? Is the pain just spreading around? sorry to

bombard you with questions. Anyone have some ideas?

I am so glad you are doing well. It is so impressive. Being out of pain

down there must be heaven. Can't wait!!!!!

Carolyn

[Guest guest]

Robin

This is Michele. I too would like to have the answers to the questions

that a asked you. Could you post back to the list ot email me

direct. I am interested in others who may have a yeast problem as I hae

not been diagnosed with anything at all yet. I have the burning at

itching most of the time.

m20d@...

Michele Duke

[Guest guest]

I have a question for everyone? How does one go about finding a doc who knows

about VV and all that you are talking about? My gyno knows zip. I'm in the LA

area in the San Valley. Can anyone guild me to a good doc? Thank you!

Lainey

[Guest guest]

Sure . . . I'll try and post to the list sometime today.

Robin

Re: Surgery

Robin

This is Michele. I too would like to have the answers to the questions

that a asked you. Could you post back to the list ot email me

direct. I am interested in others who may have a yeast problem as I hae

not been diagnosed with anything at all yet. I have the burning at

itching most of the time.

m20d@...

Michele Duke

[Guest guest]

Hi all,

Here's my assessment of how I got misdiagnosed by three doctors as having

vulvar vestibulitis.

Yes, the three doctors performed the q-tip test and did a visual exam. As a

matter of fact in June 1998, three months before I saw Dr. and he

diagnosed me with cyclic vulvovaginitis, the doctor that I had been seeing

for three years (who diagnosed me with vv in September 1995)examined me on a

day when I was having a flare up and told me " You have a textbook case of

vulvar vestibulitis " , her words exactly. That's a really long sentence--you

may want to break it up so it makes more sense . . . I'm taking a quick

break at work and just don't have time to do the English grammar thing.

I've always been suspicious of the q-tip test. To me it has always felt so

unscientific. It's not a sophisticated diagnostic tool in my opinion. If

you push a q-tip on any woman who is having pain in her vulva area there's

going to be more pain. It's not like they are doing an analysis of a bodily

fluid or anything like that.

Dr. diagnosed my cyclic vulvovaginitis by performing a visual exam,

performing a very thorough swabbing of the entire inside of my vagina and

then examining it under a microscope. He found a non-albicans yeast called

T. glabrata, prescribed Nizoral, and I was began improving overnight and

have been pain free ever since.

Feel free to ask any more questions.

Robin

Re: Surgery

From: a1127@...

Robin,

This is a. I was just wondering why the doctors misdiagnosed you with

vulvar vestibulitis? Did they do a q-tip test? If they did was there a lot

of pain like women with vestibulitis have when they did the test on you?

Also, how come they didn't diagnose you with cyclic vulvovaginitis due to

yeast in the first place? I'm just asking because I'm still not sure if my

vulvodynia is caused by chronic yeast or a yeast allergy or if yeast has

anything to do with my burning pain which is constant. I also want to ask

who

how the doctors did diagnose you with the yeast problem? Did they do tests

for yeast through your blood? How did they find out that yeast was the

cause?

I want to find the out the answer to that question too and I was just

wondering what tests should my doctor do to find out whether yeast is the

cause of my vulvodynia? I would really appreciate your feedback.

a

------------------------------------------------------------------------

[Guest guest]

Hi all,

After reading Beckie's post the surgery thing is starting to make a little

more sense to me. It sounds like the bottom line here is an accurate

diagnosis of your vulvodynia. Like I've said before, this q-tip diagnosis

thing is just not scientific enough to satisfy me!

If the vestibular glands are the cause of pain in vestibulitis then removing

them would solve the pain problem. Kind of like when people have gall

bladder surgery. (Of course, I would love to see more focus put on what's

causing the pain in the vestibular glands and gall bladders but I guess that

is what research is for and from what I hear some research is being done).

What concerns me is doctors misdiagnosing other forms of vulvodynia as

vulvar vestibulitis. As you all know, I was diagnosed by three doctors as

having vulvar vestibulitis when I had cyclic vulvovaginitis. Maybe that's

the root cause of the problem. Doctors misdiagnosing vulvar vestibulitis

and treating what they think is vulvar vestibulitis with surgery after

exhausting conservative measures. Maybe that's what's behind the pain

returning for some women. If you've misdiagnosed something and treat it

incorrectly we all know it's not going to solve the problem.

Hopefully I'm making sense here. What do you all think?

Have a good weekend!

Robin

surgery

From: RAL341@...

Hi Everyone,

I just got back from my doctor and I asked him alot of questions that I

wanted

to share with the list. First as most of you know, I had a vestibulectomy in

December.

I also wanted to share that my doctor is nationally known for his work with

vulvar disorders and chronic pelvic pain. He is considered a true expert in

the field and I trust completely what he says.

I asked him about the nerves and if they regenerate and will start to cause

pain. He said that the nerves do regenerate but they are not the cause of

the

pain. The pain in true vestibulitis comes from the vestibular glands

themselves. Therefore, the pain will not come back.

I also asked him about the removal of the bartholins glands and he said that

they are not usually a problem with vestibulitis. He has only had 2 cases

where they needed to be removed. He said he has some friends who are doctors

in different states that always removed the bartholins glands. He asked them

why they remove them and they did not have an answer for him. They have the

same success rate as my doctor with over a 90% cure rate. He also said that

removal of the bartholin glands is much more high risk of a surgery. There

is

a lot more blood loss and 10 to 15% of patients develop a hematoma. For

those

of you considering surgery, you may want to ask your doctor if they

routinely

remove them.

I feel those with pure vestibulitis can really benifit from surgery. I am

completely pain free and I would never discourage anyone from having this

surgery. I hope this information helps someone. Please feel free to email me

on or off the list.

Beckie

ral341@...

------------------------------------------------------------------------

[Guest guest]

I was reading what Heidi and you were saying about surgery and nerve endings.

I didn't have surgery, BUT I did have supposely HPV burnt off of some very

delicate areas. Clueless as I was, I felt better for 4 wks then I was in

horrible pain. When I spoke to my gyno she said that's about how long it takes

for new nerve endings to grow back and cause the pain and so I'm wondering if

that happens in the surgery too? Forgive me if I don't belong to this note. I

could just relate to nerve endings causing pain later. Lainey

[Guest guest]

Hi Lainey,

If your insurance covers UCLA, go to the Pelvic Pain Center, which is

run by Dr. Rabkin, a female, is the greatest.

Joanne

[Guest guest]

Hi Robyn,

I was diagnosed with vulvar vestibulitis, and my doctor recommended

inteferon shots (9) all around the vestibule. He said he never had a

patient complete all nine. Well, he also said the shots were

recommended for HPV, which I didn't have. Well, I went three days a

week, finished the nine shots, and got worse. I think the thing about

the q-tip test is that if you have VV, the q-tip should feel like glass

scraping against your skin. To me, it was like, yeah, maybe that feels

a little worse, but I'm not sure.

A new doctor and a new diagnosis blamed it on pelvic muscles in spasms

(fibro), thinned vulvar skin (40's), prescription for anti-depressant,

Estrace, calcium citrate, and no burning now for two weeks. I do have a

little itching. I always heard when you get a wound and it's healing,

it itches. Sometimes I wonder if our itching is our vulvar skin trying

to heal. ???

Joanne

[Guest guest]

Hi Robyn,

I was diagnosed with vulvar vestibulitis, and my doctor recommended

inteferon shots (9) all around the vestibule. He said he never had a

patient complete all nine. Well, he also said the shots were

recommended for HPV, which I didn't have. Well, I went three days a

week, finished the nine shots, and got worse. I think the thing about

the q-tip test is that if you have VV, the q-tip should feel like glass

scraping against your skin. To me, it was like, yeah, maybe that feels

a little worse, but I'm not sure.

A new doctor and a new diagnosis blamed it on pelvic muscles in spasms

(fibro), thinned vulvar skin (40's), prescription for anti-depressant,

Estrace, calcium citrate, and no burning now for two weeks. I do have a

little itching. I always heard when you get a wound and it's healing,

it itches. Sometimes I wonder if our itching is our vulvar skin trying

to heal. ???

Joanne

[Guest guest]

Hi Robyn,

I was diagnosed with vulvar vestibulitis, and my doctor recommended

inteferon shots (9) all around the vestibule. He said he never had a

patient complete all nine. Well, he also said the shots were

recommended for HPV, which I didn't have. Well, I went three days a

week, finished the nine shots, and got worse. I think the thing about

the q-tip test is that if you have VV, the q-tip should feel like glass

scraping against your skin. To me, it was like, yeah, maybe that feels

a little worse, but I'm not sure.

A new doctor and a new diagnosis blamed it on pelvic muscles in spasms

(fibro), thinned vulvar skin (40's), prescription for anti-depressant,

Estrace, calcium citrate, and no burning now for two weeks. I do have a

little itching. I always heard when you get a wound and it's healing,

it itches. Sometimes I wonder if our itching is our vulvar skin trying

to heal. ???

Joanne

[Guest guest]

JoAnne,

I think that you are right about the itching. Dr. Willems that started the

use of estrace for VV says that in time that you can start having itching and

not to treat it with anti fungals thinking that it's yeast. It usually means

that you are healing and should continue the estrace. I am glad that

everything is helping youl

Darlene

[Guest guest]

Thank you SO much. I'll call tom. and see if they take my insurance. Thanks!!

Lainey

[Guest guest]

Hi ,

I'd be more than happy to share my surgical experience with you. Busy

right now. Will e-mail you privately later. I'm sure Beckie and

would like to share their story too. Every bit of information helps. Talk

to you later

----------

> From: mkbryan@...

> To: vv listserv <VulvarDisordersonelist>; early onset support

<EOVPSGonelist>; vvlist#2

> Subject: surgery

> Date: Thursday, March 04, 1999 8:35 AM

>

> From: mkbryan@...

>

> If anybody has had a vestibulectomy (successful or not) or other surgery

> (laser, CO2) can you please email me and let me know your symptoms, when

> you had the surgery and the results. I am really considering this as an

> option and would to get an honest picture as possible before I decide.

> Thanks.

>

>

> mailto:mkbryan@...

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

Hi and everyone,

Your comments just made me think about how I felt after my surgery, which

unfortunately didn't work. While I was healing (stitches, etc) I still felt

the same exact pain!!!! No change. The q-tip test was slightly better

after the surgery, but my " constant pain " was precisely the same. That is

just one more reasone why I think so much of my pain comes from the

irritated urethral tissue. I am glad your surgery helped you!!!!

Carolyn

Re: surgery

>From: Hengelsber@...

>

>I had a vestibulectomy about a year and a half ago. Before it I had pain

when

>I sat for lengths of time, I had shooting pains from my clitoris and from

the

>vestibule and the Q-Tit test was pretty painful. My doctor removed a very

>small section and I felt almost instantly better (even with my stiches I

could

>already tell that it was better). Gradually I have felt better and better.

>The Q-Tip test is virtually pain free now. Now I just have a stretching

pain

>with intercourse, which I'm trying to get rid of. Good luck with your

>decision!

>

>P.S. My surgery was regular surgery done under local anesthesia in his

>office. It wasn't laser surgery. I've heard some horror stories about

laser

>surgery.

>

>

>

>------------------------------------------------------------------------

>Have you visited our new web site?

>http://www.onelist.com

>Onelist: Helping to create Internet communities

>------------------------------------------------------------------------

>

[Guest guest]

Hi and everyone,

Your comments just made me think about how I felt after my surgery, which

unfortunately didn't work. While I was healing (stitches, etc) I still felt

the same exact pain!!!! No change. The q-tip test was slightly better

after the surgery, but my " constant pain " was precisely the same. That is

just one more reasone why I think so much of my pain comes from the

irritated urethral tissue. I am glad your surgery helped you!!!!

Carolyn

Re: surgery

>From: Hengelsber@...

>

>I had a vestibulectomy about a year and a half ago. Before it I had pain

when

>I sat for lengths of time, I had shooting pains from my clitoris and from

the

>vestibule and the Q-Tit test was pretty painful. My doctor removed a very

>small section and I felt almost instantly better (even with my stiches I

could

>already tell that it was better). Gradually I have felt better and better.

>The Q-Tip test is virtually pain free now. Now I just have a stretching

pain

>with intercourse, which I'm trying to get rid of. Good luck with your

>decision!

>

>P.S. My surgery was regular surgery done under local anesthesia in his

>office. It wasn't laser surgery. I've heard some horror stories about

laser

>surgery.

>

>

>

>------------------------------------------------------------------------

>Have you visited our new web site?

>http://www.onelist.com

>Onelist: Helping to create Internet communities

>------------------------------------------------------------------------

>