surgery

March 5, 1999

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

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

>

March 5, 1999

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.

March 5, 1999

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.

March 5, 1999

" I don't understand what you mean by the

urethral tissue.. "

Oh, I am referring to my " lumpy-bumpy " area....the painful mass that is " hooked

onto " the roof of my vagina, but close to the entrance. It feels like it is in

the way, and it is tender, and hurts worse after I touch it. It is the urethral

tissue, and it hurts very much on me. I have no urinary problems. I do have

classic vestibular pain, too - especially on contact, ie q-tip test or

intercourse.

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

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

>

March 5, 1999

" I don't understand what you mean by the

urethral tissue.. "

Oh, I am referring to my " lumpy-bumpy " area....the painful mass that is " hooked

onto " the roof of my vagina, but close to the entrance. It feels like it is in

the way, and it is tender, and hurts worse after I touch it. It is the urethral

tissue, and it hurts very much on me. I have no urinary problems. I do have

classic vestibular pain, too - especially on contact, ie q-tip test or

intercourse.

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

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

>

March 5, 1999

Dear Carolyn I don't understand what you mean by the

urethral tissue..I am having alot of pain in my urethera.. I have a

constant burning I don't know for sure if its IC.. But could

you please explain it to me.. and I have no idear why the type

on my puter has changed mid way strange!!!!!!!!!!!!!

Carolyn Gutman-Dey wrote:

>

> 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

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

> >

March 5, 1999

Dear Carolyn I don't understand what you mean by the

urethral tissue..I am having alot of pain in my urethera.. I have a

constant burning I don't know for sure if its IC.. But could

you please explain it to me.. and I have no idear why the type

on my puter has changed mid way strange!!!!!!!!!!!!!

Carolyn Gutman-Dey wrote:

>

> 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

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

> >

March 5, 1999

Dear Carolyn I don't understand what you mean by the

urethral tissue..I am having alot of pain in my urethera.. I have a

constant burning I don't know for sure if its IC.. But could

you please explain it to me.. and I have no idear why the type

on my puter has changed mid way strange!!!!!!!!!!!!!

Carolyn Gutman-Dey wrote:

>

> 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

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

> >

May 13, 1999

Heidi,

I would like to emphasize the importance of limiting surgery to the proper

candidates. I had a vestibulectomy in 1992 because it was recommended by the

head of the GYN department of a prestigious teaching

hospital. I have found that doctors are very misinformed on the subject. I

suffer from vulvodynia and never had " only vulvar vestibulitis. " After I

learned from my reading that I never should have had this

surgery I went back to this doctor just to inform him of my experience. I am

sure that he is still recommending this procedure to everyone with any kind of

vulvar disorder. I would just hate to see anyone undergo

this excruciating experience unnecessarily as I did.

Heidi Walsh wrote:

>

> Beckie is one of the lucky ladies who has found the right solution to

> her vestibulitis. There are a couple of others who are currently on the

> list (Sally) or who have recently left the list ( K) who also found

> their answer with surgery. I'm soo happy for them and I hope that they

> will chime in with their stories and continue to keep us posted on their

> successes!

>

> Beckie commented:

> > I did alot of research and found women with vestibulitis only have a

> > 90% cure rate from a vestibulectomy.

>

> I just wanted to comment that the reported success rates from

> vestibulectomy have significantly varied from 43%-100%. The way they

> define success is varied too. It can mean that they had some amount of

> relief from symptoms, considerable relief or complete relief. Anything

> that is construed as relief is lumped (generally) into the " successes "

> pile. Another factor is the issue of followup of these patients. Most

> of the studies which have been published recently are commenting that

> there is a serious need for follow up after surgery to be lengthier to

> be sure that women don't have a recurrence of their symptoms or other

> complications.

>

> That is not to say that surgery is not effective. It has the highest

> success rate of any treatment available for vulvar vestibulitis and is

> probably the most closely scrutinized treatment. Any good doctor, even

> one who is renowned for surgery, would know that a patient should try

> conservative methods before jumping into something like surgery.

>

> Marinoff and (experts in the world of vulvar pain) say that

> surgery should be " reserved for use in patients with pain of at least

> six months' duration, pain that partly or completely prevents sexual

> intercouse and patients who have undergone failed treatments for a

> specific subset of vulvodynia or in whom no cause can be established. "

>

> Beckie is 100% correct when she says that you should educate yourself

> prior to making the decision. One of the things that I have found is

> almost never mentioned when discussing surgery is the possible

> complications. In any surgery there are risks (up to and including

> death). Some of the complications include wound hematoma, partial or

> complete wound opening, uneven healing requiring more surgery, and

> narrowing or constriction of the Bartholin's duct with cyst formation.

>

> There are also several different types of surgery that are done for VVS.

> They are vestibulectomy, modified vestibulectomy, perineoplasty, CO2

> Laser, Bartholin's gland excision, and even something called

> Flashlamp-excited dye laser. The type of surgery that is right for you,

> and whether you're even a good candidate for surgery is something that

> may be difficult for someone to assess unless they are very experienced

> with this condition and the available options for treatment.

>

> I have, myself, considered surgery. However there are a couple of major

> factors which keep me from it. One is the fact that I would really not

> have any idea who to trust with the surgery. The only vulvar specialist

> in my area is the person who wouldn't allow me to try conservative

> treatments and I don't trust her. The other factor is that according to

> a journal article by Bornstein (a well-known expert in this area), women

> who have vulvodynia *and* vulvar vestibulitis like I do have a higher

> failure rate. He also found that women who have experienced pain since

> their first sexual intercourse have a " significantly higher " chance of

> failure. Maybe I will eventually resort to surgery anyway, but I will

> be absolutely convinced that it's my last resort before I do it.

>

> This post was not meant to offend anyone who has found success with

> surgery. I know that surgery is the right answer for some of us. I

> just want to encourage everyone to be sure it is right for them before

> they jump into it.

>

> Warmly,

>

> Heidi

> mailto:dwalsh@...

> http://www.angelfire.com/md/vulvardisorders

>

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May 13, 1999