Vulvar Vestibulitis

[Guest guest]

Hi :

First of all, I want to commend you for your attention to the important

topic of vulvar pain and vulvar vestibulitis. This is a problem that

many women suffer with in silence and when they do finally turn to the

medical profession for help, too many times they come up with no answers

and are turned away feeling like they may somehow be to blame for these

sexual problems.

I am a 26 year old married woman and a sufferer of vulvar vestibulitis.

The Internet has been my only resource for information, and even the

information I've found here is fairly sparce. Because of the lack of

knowledge, I created a website for women who suffer with VVS. I would

love it if you would take a moment to check it out at

http://www.angelfire.com/md/vulvardisorders. I believe it is a fairly

informative and comprehensive site and would be a great place to point

inquiring women who respond to your comments on MSNBC.

While your article is wonderfully written and fairly accurate, I hope

you don't mind me pointing out a couple of discrepancies I noticed in

the column as opposed to the numerous medical journal articles I have

searched through. It is my hope that the information that is presented

about VVS is as thorough and accurate as possible.

My comments will follow your quotations:

" It typically strikes between the ages of 20 and 40, and though it

afflicts less than 1 percent of women in this country... "

Actually, while VVS may appear to be a " rare " condition, a study was

published in 1991 by the American Journal of Obstetrics and Gynecology

entitled " Vulvar Vestibulitis: Prevalence and Historic Features in a

General Gynecologic Practice " . The author, Martha F. Goetsch, MD found

that during a six month period 210 patients in a general gyn practice,

78 (37%) had some degree of positive testing for vulvar vestibulitis.

She further found that 31 of these patients (15%) were found to fulfill

the diagnostic criteria for vulvar vestibulitis.

I created an email listserve to serve as an on-line support group for

women suffering with vulvar vestibulitis in October of 1998. Today, I

have over 130 women on my list. I think that is striking evidence that

there is a larger than 1% population with VVS considering that it is

relatively difficult to find out about this listserve.

" Statistics show that patients who undergo surgical procedures have an

80 percent success rate immediately fter treatment, but only 50 to 60

percent remain pain-free after five years. "

Actually, the studies show a varied success rate which is *up to* 80%,

with some studies showing a success rate as low as 60% (Bornstein &

Kaufman 1989; Marinoff & 1991; Westrom 1991).

Regarding the length of time that patients who have surgery remain

pain-free, that varies significantly as well from study to study. In a

study published in the European Jouran of Obstetrics and Gynecology and

Reproductive Biology in 1996, the author indicates that the mean

postoperative follow up was 10-70 months and that this follow up showed

an overall improvement over this amount in time of 93.8% (15/16

patients).

" Willems notes that women with vestibulitis have an abnormally high rate

of calcium xalate crystals — a metabolic byproduct — in their urine. "

I realize you are paraphrasing Dr. Willems here, but this statement is

actually not factual. According to a study published in the American

Journal of Obstetrics and Gynecology in 1997 entitled " Primary Oxalate

Excretion and it's Role in Vulvar Pain Syndrome " , the authors report

that the level of oxalate excreted in a 24-hour period was almost

identical in the control group and in the vulvodynia (vulvar pain)

patients. The results of this study led the authors to conclude that

urinary oxalates are probably *not* instigators in vulvodynia, although

they may further aggravate it.

In addition to the treatments that Dr. Willems has suggested, there are

many non-medicinal and practical self-help methods that vulvar pain

suffers can try. Some of these include:

1) Wear only white, 100% cotton panties

2) Do not use soap on the vulvar area

3) Try warm baths with Aveeno

4) Do not douche unless directed by your physician

5) Do not use feminine hygiene sprays, powders or perfumes

6) Rinse vulvar area after urination

7) Avoid wearing pantyhose and tight fitting pants

8) Avoid chlorinated pools and hot tubs

9) Drink plenty of water

10) Apply ice (indirectly) to sooth pain and reduce inflammation

I hope that you will consider publishing some or all of my message as it

is truly my hope to get accurate information out out about this painful

and emotionally charged condition.

Thank you so much for your time,

Heidi Walsh

http://www.angelfire.com/md/vulvardisorders (Web Site)

http://www.onelist.com/subscribe.cgi/VulvarDisorders (Mailing List)

mailto:dwalsh@... (Personal Email)