Hello Rose,
Yes, I have had vulvodynia. Please take heart from the fact that I use the term 'have had'. I may be being optimistic, but have not had the pain for some months now. You will recover!
Mine started age 50 (am 55 now). It was sudden and devastating. Then followed the worst 3 months of my life. The pain was excrutiating, as you will know. Also, felt unable to tell anyone, except OH.
After three months, the pain subsided considerably. Then another couple of years of regular 'flare-ups', each one not lasting as long. Almost pain free in between. Have not had a flare for 6 months now.
The main things I have learnt (the hard way!) are these:
Stress does make it so much worse, and can even cause a flare up. When my mother was diagnosed with cancer, and was terminally ill, my pain was off the scale. The best thing I found was to take a small dose of Lorazepam (a tranquilliser) at night for about three nights, and it would help enormously. Obviously, this is not advised very often, but in an emergency, to help you through, it does help.
Alcohol - the enemy! A big trigger of pain. Best to stop for a while, and I can now never drink red wine or sherry, only 'white' drinks.
Have you been prescribed Amytriptylline? It is an antidepressant, that taken in small doses, calms down the nerves. I did take this for a couple of years and it did help, but it does take some time.
Do you have a supportive partner? Sex was impossible for some time. My gynaecologist said do not even try while in an acute phase (as if!), but when things feel a bit better, go slow!
There is a book, available on Amazon, called the Vulvodynia survival guide. It is very good, and will answer all your questions. Bear in mind, some of the stuff is 'worst case scenario'. If this has started with your menopause, it is hormone related. The pain is caused by fluctuating hormones, and when they settle, the pain will settle. It just takes time?
Have you been referred to a gynaecologist? I do hope so, because you need specialist treatment for this.
Hope this has been of some help.
Remember, the good news is, it does improve, and hopefully go away in the end! Patience being a virtue....!
Good luck, please post and let me know how you are.
Echinacea