Re: Vulvodynia

hello! i just read your message and wanted to let you know that i also suffer from vulvular vestibulitis. i was only diagnosed last summer after a very long 15 years of living with the mysterious and at times overwhelming pain. last summer i went to a clinic in montreal, canada that specializes in research and treatment of vuvlvular pain conditions. they tested me for my pain thresholds and diagnosed me with vestibulitis. there is a waiting list for treatment so i can't tell you about it yet. i plan to go back next summer and begin treatment.

over the course of my long search for answers i have looked into the face of many a dismissive gyno. i have also done a lot of trial and error experimentation on my own. two things that really trigger pain for me are: 1) chocolate, particularily my most favorite kind, the dark stuff 2) berries of any kind. i mention this because i noticed that blueberries and chocolate are amongst the things that you eat. however, your triggers and mine may not be the same.

there is one homeopathic product that has helped a lot in reducing my pain, ignatia iamara (150ch dose). these are little pearl shape pellets that come in a plastic tube and can be ordered at any pharmacy that offers homeopathic products. each tube costs me about 7 dollars canadian. anyway. i pop about three if i feel the pain coming on. sometimes i have to take three about every twenty mins for an hour, but usually one hit is enough. also, i take one just before going to sleep as general prevention.i do this for three weeks the take one week off. of course, if the pain comes on i pop what i need when i need it. if you decide to try this it is important that you don't drink any mint tea or use mint flavored toothpaste because mint interferes with homeopathic treatments.my pain isn't gone but i can walk around and sit down without any discomfort.i have even been able to go on short bike rides!

i think probably the most challenging thing for me as far finding triggers goes has been detecting what food does and doesn't set it off. when i have gone on a fast for a day or two i have no pain so i know, for me, there is a food connection.

lastly, it has profoundly changed my sex life. i can't tolerate any kind of vaginal penetration and very little contact in the area. this of course affects my libido enormously. i have a loving partner who is also depressed by the situation. once in a while when we rediscover our desire and get sexual and i have been able to use the ignatia immediately before and after to manage the pain. but these moments only occur when i am in an otherwise mostly pain-free stretch. no matter what intercourse is always painful, but every now and again not so much that my desire dissapears.

if you like i'll let you know what i discover in the treatment sessions in montreal when my turn comes up.


as far as internet goes there are some good web pages and some not so good ones. the clinic in montreal recommended the following pages:

_ A site that contains general information on vulvar health:
http://www.vulvarhealth.org


_ A site that contains general information on vulvar pain:
http://www.thewebpaige.com/vpf/links.htm


_ A website dedicated to vulvodynia:
http://www.vulvodynia.com


_ The International Society for the Study of Vulvovaginal Disease (ISSVD):
http://www.issvd.org


_ National Vulvodynia Association (NVA):
http://www.nva.org


_ A discussion group for general vulvar problems:
http://www.groups.yahoo.com/group/VulvarDisorders



BOOKS:
_ V book: A doctor’s guide to complete Vulvovaginal health (see http://www.thevbook.com/)
Authors: EG Stewart & P Spencer
Other information: Published in 2002 by Bantam Books.

_ The vulvodynia survival guide: How to overcome painful vaginal symptoms and enjoy an active lifestyle Authors: H Glazer & G Rodke
Other information: Published in 2002 by New Harbinger Publications, Inc.

i hope this has been useful.good luck and don't give up!