Creating Massive Pelvic Pain Awareness Campaign

[ezer]

Violet,
I like the document and I agree with our desire to keep it short but I think it should contain some references to studies published. We certainly do want to give the impression to the medical community that what we say is backed by reputable medical studies and is not just an opinion.

Charlie,
I also deplore the situation. Wikipedia is the prime source of information for most people nowadays that is assumed to be balanced and reading the PNE page as a new sufferer, I would just skip it and look for a more probable pathology.

[Violet M]

Excellent suggestion Ezer. What do you think we could take out to allow for some references? What do you think would be the best articles to reference?

Pianogal, I think pelvic surgery is already on the list. I added the word "depression". I'm not sure prolapse has been established as a cause of PN -- many women have prolapses without pudendal neuralgia. Have you seen anything about it in the literature?

[A's Mommy]

Violet,
The document looks great.... thanks and good work!!!

[ezer]

Violet,
Ideally we should find references that are available online (even if it is available only through subscription). I was thinking for surgery we could reference the original paper from Prof.Robert. The new paper from Dr.Hibner gives a really good overview of the entire process. The Bautrant paper for the TIR surgery. On the conservative side, Dr.Weiss has some interesting material that he presented at several conferences.

For example:

Labat JJ, Robert R, Bensignor M, Buselin JM: Pudendal Canal Syndrome as a Cause of Vulvodynia and Its Treatment by Pudendal Nerve Decompression. Eur j Obstet Gynecol Reprod Biol. 80(2):215-20, October, 1998.

Bautrant E, de Bisschop E, et al: New Method for the Treatment of Pudendal Neuralgia. J Gynecol Obstet Biol Reprod (Paris), 32, 705-12, December, 2003.

Michael Hibner, MD, PhD, Nita Desai, MD, Loretta J. Robertson, PT, May Nour, MD, PhD, The Journal of Minimally invasive Gynecology Volume 17, Issue 2, Pages 148-153 (March 2010)

J.Weiss, MD, Pudendal Nerve Entrapment, presented at the International Pelvic Pain Society’s 10th Scientific Meeting on Chronic Pelvic Pain in Alberta, Canada, August 2003.

[mom]

THIS IS GREAT!!!!!!
I am so thankful that itching is listed as a symptom. Was vulvar burning or knife stabbing pain listed? There may be enough room on that last line in symptoms to add w/o adding another line.

[mom]

Also if you make the margins on the sides smaller ( instead of the 1 1/2 inches they are printing off as you might be able to fit a little more info on it ( Ezer's med documentation Idea) W/o having to remove anything.

Great Job though I love it . I have printed 4 off already to take to our many appt.s this week. I am also goign to send it to the PED GYN we have been seeing.

[Karyn]

The document is fabulous!

Was vulvar burning or knife stabbing pain listed? There may be enough room on that last line in symptoms to add w/o adding another line.

Yes, please add knife-like stabbing pain, pinching/pulling/twisting". I noticed in the first paragraph you list "numbness" and then a little further down,
"loss of sensation". Maybe the latter can be taken out and substituted with the stabbing/pinching/pulling/twisting?
Thanks so much for all of your hard work!
Warm regards,
Karyn

[A's Mommy]

I second that, please add pulling,twisting, stabbing, shocking

Thank you

[Violet M]

OK, guys. I'll make some revisions over the weekend. Do you think maybe we should go for a two-sided page? Or, maybe we could put the references on the back?

[AliPasha1]

Hi Violet and Ezer,
Isn't the publication by Dr. bautrant a little out of date now since Dr.De Bischopp no more works along with Dr. Bautrant.Do we have any latest publication by Dr. Eric Bautrant.

Regards,
Ali