Re: Vulvodynia

hi! i am a long term sufferer of vuvlvular vestibulitis a form of vuvlvodynia (dynia="pain" or "painful"). it seems that symptoms tend to vary from woman to woman as far as intensity and frequency etc. i am only just finding out about the resources out there myself.i have been in and out of pain for 15 years but was only very recently diagnosed with vulvular vestibulitis. basically it was explained to me as a condition in which the nerve endings of the vulva and vestibule become over sensitized (sometime because of chronic yeast infections, chronic urinary infections, surgery, HPV, herpes, food allergies or sometimes for no apparent reason at all). the test i was given to determine whether i had the condition was basically one in which various degrees of pressure, via a q-tip in a spring loaded tube, were applied to distinct parts of my labia and vulva. the results were that when i STARTED to notice a painless touch sensation most women wouldn't have noticed anything at all and with increased pressure, when i began to notice PAIN most women would have noticed only a normal pain-free touch sensation.this means that in the course of "normal" types of contact (from underwear, walking, sex etc)i often experience touch as pain.

there are some common triggers ie all soy products (tofu, soya sauce etc.), beans, beer, coffee, chocolate, sugar, berries. there is a whole long list of high oxylate foods that are thought to trigger symptoms (not cause them) but the ones i have mentioned rank high. it would be very difficult to follow a zero oxylate diet, and possibly unhealthy. oxylates are a metabolic product and are like microscopic crystals. it is thought that as they pass through the urine the cause micro cuts and irritate women who have heightened vulvular sensitivity.

over the years of not knowing what to do i have discovered that besides avoiding the above mentioned foods i avoid all alcohol, swimming pools (chlorine is a big trigger for me)tight pants and i use only the mildest and most natural soap for bathing and laundry. also i never use any kind of soap directly on my labia, just rinse with warm water. I have also discovered that ignatia iamara at a 150ch dose (this is a homeopathic treatment) works well in reducing and some times eliminating the pain.

next summer i plan to do a treatment program in montreal, canada that is specifically designed for people suffering from vulvular pain conditions. i'll be glad to share whatever i learn there. they have told me that most woman who do the program (physiotherapy for the pelvic floor muscles, bio-feedback and psychological counselling) have a dramatic reduction in symptoms.

there are a lot of websites out there and am told that some of them are dangerously misinformed. the ones recommended to me by my montreal contact are:

_ 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.



ps it is normal to worry when experiencing this kind of discomfort. it is important to be tested for infections in order to rule them out as the cause. you may have some kind of treatable infection that can easily be solved. all that to say that worry, as normal as it is, probably makes anything feel worse! good luck