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Joan, I am a 56 year old woman and have had vulvodynia since I was 45 yrs old. It took me 10 months to be diagnosed properly. My pain was exactly what you described and I had urinary frequency as well. What I tried - and it has worked for me is Elavil (an antidepressant taken in low doses). There is some type of blocker in it that cuts the pain message from getting to the brain. I started at 25 mg once a day (taken before bedtime) because it makes you sleepy. Within 2 weeks of beginning the drug the pain started to lessen and eventually dissipated. I am pain free today, However in the last 2 years my inner labia has disappeared and my clitoris has fused - this is a condition called lichen sclerosis. You may want to research this as well. I realize that many women don't wish to take drugs but for me it has been a godsend and has meant the difference between functioning normally or not at all. However,since I've been on Elavil for 10 years, I think that my body has gotten used to the dosage so I've had to up the dosage to 35 mg per day and now am at 45 mg per day. My dermatologist who treats this condition has told me that the highest dose she's encountered with one of her patients is 100 mg per day. I have thought of trying something else and some of the conversations on hormones are interesting but so far the Elavil is working. Re: finding a doctor to treat you - if you join the NVA they will provide you with a list of doctors in your area (or area closest to you) who treat vulvodynia and a support group. If unable to attend a group you can probably arrange to talk to someone by phone or by email. Each person is different and what works for one may not work for the other - just keep trying till you find a solution that works for you. Hope that helps!

November 20, 2008 - 7:04pm


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