VIN 3

hi im just wondering if there's anyone else who suffers with VIN 3. I m 28 and got twin girls and was diagnosed over 12 months ago.  Within this time ive had 2 lots of laser surgery both in and out and removal of some of my labia,  its just not getting any better and no one actually gets what i've got and find it hard talking to family as they make mw feel im making an issue over nothing  . Im in again for 3rd lot of surgery on both sides and wonder if ot ever gets better???  X