Re: surgery success rates & other useful info

[Guest guest]

> " Overall, between 1982 and 1984 a success rate of 80% was achieved in 64

>patients undergoing this procedure (surgery). Others have reported

>success rates of 80% and 60%. Michelewitz et al and Marinoff have

>modified the procedure by extending the incision to the periurethral

>area and in so doing have increased the success rate of the procedure. "

>From: " Vulvar Vestibulitis Syndrome " Dermatologic Clinics Vol. 10, No 2,

>April 1992, page 443, Stanley C. Marinoff, MD and L. C. , MD

Just mostly my own thoughts and ramblings on this stuff (not directly

toward anyone in

particular), but... let's keep in mind that these statistics were based on

surgeries performed MANY

years ago, probably before there were any other recognizable treatments that

most women KNEW about

(i.e., biofeedback, antifungals, low oxalate diet, etc.). Also, " these

researchers [Marinoff and

] emphasize that the potentially high success rate associated with

perineoplasty is dependent

on good case selection. Therefore, in diagnosing VVS, clinicians must remember

to adhere to strict

criteria. " (Vulvar Vestibulitis Syndrome, R. Mimi e Secor, RNC, MEd, FNP,

and a Fertitta,

RNC, MS, OGNP; Nurse Practitioner Forum, Vol 3, No. 3, September, 1992: pp.

161-168) In other

words, it greatly depends upon which TYPE of vulvar pain a woman has as to how

effective surgery

will be for HER--it doesn't mean those are the statistics for ALL women with

vulvodynia.

(snip)

>So as you can see, surgery is still considered the most successful

>treatment for vulvar vestibulitis.

I've seen different statistics for surgery from different researchers,

so I don't think

there's complete agreement on that. Perhaps surgery is still considered the

" most successful "

treatment BY SURGEONS. However, there's little mention as to whether or not

surgery is still

successful five or ten years down the road for the women who undergo it! And

considering the lack

of follow-up on sexual functioning [ " Finally, the impact of vestibulectomy on

sexual functioning has

never been investigated. " ] -- which I find highly irresponsible considering it

is one of the main

complaints of this vulvar pain (!!), it only brings to light the shortcomings of

any studies of past

surgical management for VVS.

Also, statistics do change over time. This is an area of ongoing

research. We can't cling

to old numbers when new treatments become available that haven't been " studied "

as extensively as

surgery only because they haven't " been around " as long! I think it's important

to remember that

for the women whom surgery is INDICATED (meaning all other treatment modalities

have failed) and

seems the final, logical option to pursue, THEN maybe the claims of success

carry some weight, IF

they're followed up on and still found to be valid years later. Otherwise, I

have to take it with a

grain of salt. And keep it in PERSPECTIVE: there are many different possible

diagnoses for chronic

vulvar pain, and many different treatments, surgery being only ONE. It takes a

lot of patience and

strength to obtain a proper diagnosis (as we all know!) and to try treatments

that might work

although they usually take a lot longer than surgery to produce results.

My two cents.

Gail

[Guest guest]

Gail (and others):

You basically reiterated my points about surgery. I quoted some

statistics I had handy, but also emphasized that success depends on

choosing the right candidates (i.e., women with " classic " vestibulitis),

type of surgery, etc. I agree with you wholeheartedly that these

statistics are not fool-proof and shouldn't be relied on too heavily.

There are too many flaws in the research method to do that. My point

was simply that to date, most research articles (I could quote a ton of

these, but don't have the time or energy) state that surgery is the most

effective treatment.

I'm not advocating surgery and I'm not dismissing it either. I simply

want to present the whole picture.

Obviously there are other treatments one can pursue. I think I made

that clear in my posting about current treatments. I think each woman

owes it to herself to learn about ALL the treatment methods, considering

the risks and the complications, and then make an educated decision

about what's right for her. Don't let any doctor push you into a

treatment you're not confident in and don't let any of your peers

convince you that what worked for them will work for you. You have to

consider your body and your set of problems and make the decision for

yourself - hopefully with the help of a compassionate and knowledgeable

physician (but we all know there isn't an abundance of those!).

Incidentally, I will never have surgery because I spoke with Dr.

Bornstein (a well-known VVS surgeon) and he told me that I was not a

candidate for the procedure since I've had pain with intercourse since

the first try and pain with insertion of tampons since puberty. He was

very straight-forward with me and encouraged me to not have the surgery

because there was too great a risk of failure. Of all the " specialists "

of vulvar vestibulitis, he is the person I most respect and trust. He

could have convinced me to have surgery, but he didn't. I think that is

pretty cool.

The sad fact of the matter is that none of the treatments really carries

a reliable efficacy statistic. Pretty much all of the research studies

done on these treatments have flawed research methods, control subject

issues, etc. So it's hard to believe any statistic. I guess that's why

I feel it's so important to research on your own as much as you can and

make your own educated decisions. I think in our hearts, a lot of us

know what we're comfortable pursuing and what we're not. Just don't let

desperation push you to pursue a treatment you might come to regret.

Good luck to all of you and thanks, Gail, for your interest in this

discussion.

Warmly,

Heidi