Guest guest Posted December 8, 1998 Report Share Posted December 8, 1998 Way to go Heidi!!! Thanks for saying what we have all expressed so articulately in your email. At 11:13 PM 12/7/98 -0600, you wrote: >I found the main web site for PastorNet. It's located at >http://www.pastornet.net.au/ and they DO have a guestbook. They also >have an email address for their 'webmaster' located at the bottom of the >homepage. > >Attached is a copy of the email I sent to the 'webmaster' and also >posted in their guestbook. I hope you ladies will consider doing >similarly. >Date: Mon, 07 Dec 1998 22:59:42 -0600 > >To: webmaster@... >Reply-to: dwalsh@... >Message-id: >MIME-version: 1.0 >X-Mailer: Mozilla 3.01Gold (Win95; U) >Content-type: text/plain; charset=us-ascii >Content-transfer-encoding: 7bit > >To Whom It May Concern: > >I am writing in regards to comments made by Dr. A.S. Reece on one of >your webpages. The comments about Vulvar Vestibulitis are located under >the header of " Other Sexually Transmitted Diseases " . The quote is word >for word as follows: > >----begin quote--------------- >VULVAR VESTIBULITIS > > " Burning Vulvar Syndrome, " " Vulvodynia " and a variety of other titles >have been coined for this most unpleasant condition which can make not >only sexual activity extremely uncomfortable, but in its most severe >forms make it difficult to urinate or even sit down. Whilst it is not a >common disorder it is well described and most Gynaecologists have at >least one in their care. It is very difficult to treat and whilst its >aetiology is not completely understood it is often thought to be related >to HPV in part because of similar cytohistological features. There is an >equivalent although rarer condition in the male. >--------end quote------------------------------------ > >I am very upset with the misleading and inaccurate information that this >doctor has posted about a condition that is very difficult for women to >deal with, both physically and emotionally. Although Dr. Reece states >that vulvar vestibulitis is " well described " , the fact of the matter is >that there is precious little information about this extremely painful >disease. Most physicians and medical professionals are unfamiliar with >the condition and do not know how to diagnose it or treat it >appropriately. Because there is such a lack of information, women turn >to the internet in the hopes of finding answers. It is my fear that >they are stumbling upon Dr. Reece's description and receiving VERY >inaccurate information that could potentially be very harmful to them >emotionally. It is difficult to deal with a condition such as this if >one is in an ideal state of mind, but when someone tries to imply that >it is a STD and that a woman gets this disease because of inappropriate >sexual activity, imagine what that could do to a hurting woman's >self-esteem. > >I am a 26 year old woman who has been diagnosed as having vulvar >vestibulitis. I developed vulvar vestibulitis at the age of 14, shortly >after my menstrual cycle began. I was a virgin until the age of 22, and >lost my virginity to my husband. I was never sexually active prior to >my interactions with him. This is a personal reflection which shows >that vulvar vestibulitis (vv) is NOT sexually transmitted in any way. >In fact, the theory that vv is a STD or caused by an STD has been >squelched by many recent medical studies. I suggest that you refer Dr. >Reece to the following medical journal articles: > >ls of Medicine 27:175-181, 1995 >Jorma Paavonen,MD - author > " Diagnosis and Treatment of Vulvodynia " >Excerpt from page 176: > " Risk-taking sexual behavior is rare. Few patients with vulvodynia > have history of sexually transmitted diseases. Similarly, many > have a limited number of lifetime sexual partners. " > >Excerpt from page 177: > " Although some early studies suggested that vulvar vestibulitis > syndrome (vvs) was often associated with HPV, the link between > HPV and VVS is far from proven. In fact, emerging evidence > suggests that HPV is not associated with VVS. Recent case-control > studies provide little support for the hypothesis of infection > causing vvs. " > >The Clinical Journal of Pain, Vol. 13, No 1. 1997 >Sophie Bergeron, B.Sc, Yitzchak M. Binik, Ph.D, Samir Khalife, MD > & Pagidas, MD - authors >Excerpt from page 32: > " With regards to sexuality, they found that women suffering >from vulvar vestibulitis syndrome (vvs) were significantly more > erotophobic than controls, having more conservative attitudes > towards sexuality. " > >Excerpt from page 30: > " Findings from two case-control studies conducted...show that HPV > was present in only 5.3-9.7% of the women with VVS, frequencies > no different than those of controls. " > >Vulvodynia: Unraveling the Mysteries >http://www.arizonadoctors.com/drgordondavis/section2.html >Gordon D. , MD - author >Excerpt from page 10: > " Several studies have failed to link common sexually transmitted > diseases with vestibulitis. " > >The American Journal of Surgical Pathology 19(2): 154-160, 1995 > A. Prayson, MD, Mark H. Stoler, MD, R. Hart, MD - >authors > " Vulvar Vestibulitis: A Histopathologic Study of 36 Cases, Including >Human Papillomavirus In Situ Hybridization Analysis " >Excerpt from page 160: > " Our findings are in agreement with those of Wilkinson et al., >who interpreted the results of their study as failing to support >HPV > as a possible causative agent in most cases of >vulvar vestibulitis. " > > " The absence of koilocytotic atypia or squamous dysplasia in >our study and in the vast majority of cases reported in other >series > is one of the strongest arguments against an etiologic role for > HPV in the pathogenesis of vulvar vestibulitis. " > >I also suggest that you have Dr. Reece and other associates of yours do >better research, in general, before posting incorrect and potentially >harmful information on the internet. > >I maintain a website at http://www.angelfire.com/hi/HeidiHomePage which >contains numerous informative links to webpages that list *CORRECT* >information on the topics of vulvodynia and vulvar vestibulitis. I >encourage Dr. Reece to read through this information. > >I assume that you will remove this misleading information and edit it >for accuracy before posting any further comments on the topic of vulvar >vestibulitis. > >Sincerely, > >Heidi Walsh > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1998 Report Share Posted December 8, 1998 BRAVO HEIDI! You go girl...You definitely told it like it is! Hopefully, in the future..we all can help to enlighten the medical profession..so this stigma becomes obsolete! Hugs, Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1998 Report Share Posted December 8, 1998 Heidi, I read, and really liked your e-mail. When I find the time I plan on doing the same. ---------- > > To: VulvarDisordersonelist > Subject: PastorNet, Dr. Reece > Date: Tuesday, December 08, 1998 12:13 AM > > I found the main web site for PastorNet. It's located at > http://www.pastornet.net.au/ and they DO have a guestbook. They also > have an email address for their 'webmaster' located at the bottom of the > homepage. > > Attached is a copy of the email I sent to the 'webmaster' and also > posted in their guestbook. I hope you ladies will consider doing > similarly. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1998 Report Share Posted December 8, 1998 Heidi, Wonderful job you did on the E-mail. Thanks for doing so much to help us all!! Janis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1998 Report Share Posted December 8, 1998 Heidi, You go, girl! Robin ______________________________ Reply Separator _________________________________ Subject: PastorNet, Dr. Reece Author: " Dave and Heidi " [sMTP:dwalsh@...] at MSXGATE Date: 12/7/98 9:13 PM I found the main web site for PastorNet. It's located at http://www.pastornet.net.au/ and they DO have a guestbook. They also have an email address for their 'webmaster' located at the bottom of the homepage. Attached is a copy of the email I sent to the 'webmaster' and also posted in their guestbook. I hope you ladies will consider doing similarly. Quote Link to comment Share on other sites More sharing options...
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