I'm about to lose my best friend

Hey Flashlight,

Is your pain mainly burning? This is what I had for months...I was convinced it was a dermatitis...well 3 dermatologists later...a specialist told me it was neuropathy. I cant recall from your previous post but have you tried Lyrica? What about Amitriptyline? It took a good 3-4 months on Amitriptyline to see any results. Im not 100 percent but Im "better". Maybe in the past you have not stayed on any medication long enough to see results ?

Flashlight how have you been able to live with this condition for twenty years...I applaud you. Most of us on here have had it for a year to a couple of years at most....

My approach to this misery has been of healing....rather than curing. Its hard to describe but in order for me to live on and continue I have had to accept this and just try my best to self-manage. The doctors arent very sympathetic with us it seems. They dont understand all of the ramifications that this condition imposes on a woman`s life. Its not just "pain". Its burning, itching, stinging, rawness, swelling, redness....then on top of that emotionally and mentally being drained both from the physical pain and also the psychological suffering.

Im going to contact a local pelvic floor physio and try that. Im physically fit, slim, and although I have had health issues for my entire life...in one way shape or form.....I dont think I have a pelvic floor dysfunction. However, with pain like this I know that it could just snowball into a pelvic floor thing as well, go figure.

Flashlight, I hope that your relationship will survive. You seem to be a very strong and caring woman...I only wish you the best.... Have you been with your partner for the entirety of your Vulvodynia ? Or did you two meet before this misery came into your life ?
Im sure you have mentioned it before but im sorry I cant remember....

Anyways...this forum is a godsend. Its reassuring to know that there are women out there who can understand and relate to what im going through.

Take care everyone!

Hi All

I just wanted to add that I tried Lyrica without success however I was then put on Sodium Valproate which reduced my pain by about 40%. Still not enough to be able to have intercourse unfortunately but it's a start anyway. If anyone has not found a medication that works for them I would recommend trying this.

I did have very good results w/ Lyrica added to Gabepentin. When i was up to 300 mgs added to 3600 gab. i had my best results. then i went down to 150 mgs of lyrica because of weight gain. i am considering going back up again though. i would rather be a tiny bit chubby w/ less pain then be thin w/ bad pain.

Flashlight, i don't know if you are still on this forum anymore. but, i am going to be having surgery to have wires implanted in my spine (neurostimulator) to interrupt the pain signals to the brain. i would be mad as hell if i had this thing for 20 years. there are new ways of treating this disorder that continue to come up. hope you're doing alright!