MARCIA - PLEASE READ Help! I don't want unneccessary surgery!

[Guest guest]

Marcia – I have PN and Vestibulits. Nine months ago I had PN

decompression surgery and a Vestibulectomy. The vestibulectomy worked for four

months (the pain from that area was completely gone), but four months later it

returned with a roar. The pain that causes the Vestubulits is coming from the

pudendal nerve. So even if you have the vestibulectomy, the same thing could

happen to you if you have PN. The only time a vestibulectomy works (and I think

this is a marvelous surgery by itself) is if you DO NOT have PN involvement. So

if that is the case for you and you do have PN, the vestibulectomy will work

but only for a short time and they it will be back. The pudendal nerve effects

the nerves in the vulvar area and regenerates the nerves. I am really sorry to

hear that you got this diagnosis. If you have any other questions, I will be

glad to help. My decompression surgery was also a bust – I got that news

last week – my doctor told me it was a failure after waiting nine months.

Also visit the www.pudendal.info site.

The women on there are wonderful to answer your questions if you think you have

PN.

nne

From: VulvarDisorders

[mailto:VulvarDisorders ] On Behalf Of Marcia Gallas

Sent: Wednesday, June 11, 2008 7:00 PM

To: VulvarDisorders

Subject: V V or PN? Help! I don't want unneccessary surgery!

I had a pelvic exam today and got thrown a REAL

curve ball. I am

confused and don't know what to do. I DEFINITELY don't want

unnecessary surgery.

Here is what happened. I had an excrutiating pelvic exam. I went in

thinking that I was going to tell the doctor I wanted to schedule a

vestibulectomy. In late 2006 he had diagnosed me with vulvar

vestibulitis. Today he told me he believes I have pudendal

neuropathy!!OMG! I wasn't expecting that at all. I asked him why PN

and NOT VV. Well, I wasn't red where he thought I should be. I

didn't respond to pain with manipulation. And yet, it was a VERY

painful examination. It seems like my pain is very localized to the

vestibule/opening. If it were PN would that be the case?

He wanted me to come back andthen he would give me a steroid

injection in the pudendal nerve. He said I would have to come back

every 2 or 3 months and that it would be a long process. I guess I

have been so stuck on the vv diagnosis for so long that I said I

didn't want the injection, I wanted a vestibulectomy. So NOW they are

scheduling surgery for a vestibulectomy!!!!!

Some of you may remember that I was concerned because he typically

removes the Bartholin's glands when he does a vestibulectomy. He

said for me he would NOT remove them because that would make my

pudendal neuropathy worse. Could it be that I have BOTH conditions?

Does anyone here think I should have the injection? If it worked

would that mean that I DON'T have VV? Again, if a vestibulectomy

will not help me, I don't want to go through it. And why do you

think he would agree to the surgery? It's not like a patient

requesting aprescription for goodness sake! I went to the PN site

nne recommended. So much of it sounded like me that now I

really AM confused.

I need help and advice, PLEASE!!! A second opinion isn't feasible.

This doctor is a leader in the field and there isn't another doctor

for this within 100 miles.

Thanks in advance, Marcia Sorry, for some words running

together...can't seem to fix it!

[Guest guest]

Oh, nne! I'm so sorry to hear that your surgery is now being considered a failure.You had said not all that long ago that things were going well and that your PT was pressingon the pudendal nerve without your having pain -- a major improvement. So what lead to the conclusion just nine months out that the surgery wasn't a success after all? I thought you had told us that it could take up to 2 years for full healing. Did you have a new series of conductiontests that indicated entrapment???HollisMarcia – I have PN and Vestibulits. Nine months ago I had PN decompression surgery and a Vestibulectomy. The vestibulectomy worked for four months (the pain from that area was completely gone), but four months later it returned with a roar. The pain that causes the Vestubulits is coming from the pudendal nerve. So even if you have the vestibulectomy, the same thing could happen to you if you have PN. The only time a vestibulectomy works (and I think this is a marvelous surgery by itself) is if you DO NOT have PN involvement. So if that is the case for you and you do have PN, the vestibulectomy will work but only for a short time and they it will be back. The pudendal nerve effects the nerves in the vulvar area and regenerates the nerves. I am really sorry to hear that you got this diagnosis. If you have any other questions, I will be glad to help. My decompression surgery was also a bust – I got that news last week – my doctor told me it was a failure after waiting nine months. Also visit the www.pudendal. infosite. The women on there are wonderful to answer your questions if you think you have PN. nne From: VulvarDisorders@ yahoogroups. com [mailto:VulvarDisor ders@yahoogroups .com] On Behalf Of Marcia Gallas Sent: Wednesday, June 11, 2008 7:00 PM To: VulvarDisorders@ yahoogroups. com Subject: V V or PN? Help! I don't want unneccessary surgery! I had a pelvic exam today and got thrown a REAL curve ball. I am confused and don't know what to do. I DEFINITELY don't want unnecessary surgery. Here is what happened. I had an excrutiating pelvic exam. I went in thinking that I was going to tell the doctor I wanted to schedule a vestibulectomy. In late 2006 he had diagnosed me with vulvar vestibulitis. Today he told me he believes I have pudendal neuropathy!! OMG! I wasn't expecting that at all. I asked him why PN and NOT VV. Well, I wasn't red where he thought I should be. I didn't respond to pain with manipulation. And yet, it was a VERY painful examination. It seems like my pain is very localized to the vestibule/opening. If it were PN would that be the case? He wanted me to come back andthen he would give me a steroid injection in the pudendal nerve. He said I would have to come back every 2 or 3 months and that it would be a long process. I guess I have been so stuck on the vv diagnosis for so long that I said I didn't want the injection, I wanted a vestibulectomy. So NOW they are scheduling surgery for a vestibulectomy! !!!! Some of you may remember that I was concerned because he typically removes the Bartholin's glands when he does a vestibulectomy. He said for me he would NOT remove them because that would make my pudendal neuropathy worse. Could it be that I have BOTH conditions? Does anyone here think I should have the injection? If it worked would that mean that I DON'T have VV? Again, if a vestibulectomy will not help me, I don't want to go through it. And why do you think he would agree to the surgery? It's not like a patient requesting aprescription for goodness sake! I went to the PN site nne recommended. So much of it sounded like me that now I really AM confused. I need help and advice, PLEASE!!! A second opinion isn't feasible. This doctor is a leader in the field and there isn't another doctor for this within 100 miles. Thanks in advance, Marcia Sorry, for some words running together...can' t seem to fix it!

[Guest guest]

OK – this is the story. My doctor told me at the beginning that

I was the worst case he had ever seen. I was doing good four months post

surgery, no pain when touched on the pudendal nerve, and then after Christmas I

started getting more and more pain until last week when I went to my doctor who

did the physical exam and I was back where I started, I could not be touched on

the nerve again. He told me that it takes 2-3 years for before the surgery is

deemed it is a cure, but that is with teeny teeny improvements over the months,

not the terrible back slide I had. I sent out a letter to everyone who was

interested, but I didn’t send it to this list. I will find it again and send it

and you can read more details. And no he won’t do any more conduction tests –

he doesn’t even want to see me again – like I am someone he does not care to

remember. I’ll send the letter and you can read what my options are now. Thanks

for caring Hollis.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of hgz

Sent: Saturday, June 14, 2008 12:15 AM

To: VulvarDisorders

Subject: RE: MARCIA - PLEASE READ Help! I don't want unneccessary

surgery!

Oh, nne! I'm so sorry to hear that your surgery is now

being considered a failure.

You had said not all that long ago that things were going well and

that your PT was pressing

on the pudendal nerve without your having pain -- a major

improvement. So what lead to the conclusion just nine months out that the

surgery wasn't a success after all? I thought you had told us that it could

take up to 2 years for full healing. Did you have a new series of

conduction

tests that indicated entrapment???

Hollis

Marcia

– I have PN and Vestibulits. Nine months ago I had PN decompression surgery and

a Vestibulectomy. The vestibulectomy worked for four months (the pain from that

area was completely gone), but four months later it returned with a roar. The

pain that causes the Vestubulits is coming from the pudendal nerve. So even if

you have the vestibulectomy, the same thing could happen to you if you have PN.

The only time a vestibulectomy works (and I think this is a marvelous surgery

by itself) is if you DO NOT have PN involvement. So if that is the case for you

and you do have PN, the vestibulectomy will work but only for a short time and

they it will be back. The pudendal nerve effects the nerves in the vulvar area

and regenerates the nerves. I am really sorry to hear that you got this diagnosis.

If you have any other questions, I will be glad to help. My decompression

surgery was also a bust – I got that news last week – my doctor told me it was

a failure after waiting nine months. Also visit the www.pudendal. infosite. The women on there

are wonderful to answer your questions if you think you have PN.

nne

From: VulvarDisorders@ yahoogroups. com [mailto:VulvarDisor

ders@yahoogroups .com] On Behalf Of Marcia Gallas

Sent: Wednesday, June 11, 2008 7:00 PM

To: VulvarDisorders@ yahoogroups. com

Subject: V V or PN? Help! I don't want unneccessary surgery!

I

had a pelvic exam today and got thrown a REAL curve ball. I am

confused

and don't know what to do. I DEFINITELY don't want

unnecessary

surgery.

Here

is what happened. I had an excrutiating pelvic exam. I went in

thinking

that I was going to tell the doctor I wanted to schedule a

vestibulectomy.

In late 2006 he had diagnosed me with vulvar

vestibulitis.

Today he told me he believes I have pudendal

neuropathy!!

OMG! I wasn't expecting that at all. I asked him why PN

and

NOT VV. Well, I wasn't red where he thought I should be. I

didn't

respond to pain with manipulation. And yet, it was a VERY

painful

examination. It seems like my pain is very localized to the

vestibule/opening.

If it were PN would that be the case?

He

wanted me to come back andthen he would give me a steroid

injection

in the pudendal nerve. He said I would have to come back

every

2 or 3 months and that it would be a long process. I guess I

have

been so stuck on the vv diagnosis for so long that I said I

didn't

want the injection, I wanted a vestibulectomy. So NOW they are

scheduling

surgery for a vestibulectomy! !!!!

Some

of you may remember that I was concerned because he typically

removes

the Bartholin's glands when he does a vestibulectomy. He

said

for me he would NOT remove them because that would make my

pudendal

neuropathy worse. Could it be that I have BOTH conditions?

Does

anyone here think I should have the injection? If it worked

would

that mean that I DON'T have VV? Again, if a vestibulectomy

will

not help me, I don't want to go through it. And why do you

think

he would agree to the surgery? It's not like a patient

requesting

aprescription for goodness sake! I went to the PN site

nne

recommended. So much of it sounded like me that now I

really

AM confused.

I

need help and advice, PLEASE!!! A second opinion isn't feasible.

This

doctor is a leader in the field and there isn't another doctor

for

this within 100 miles.

Thanks

in advance, Marcia Sorry, for some words running

together...can'

t seem to fix it!