Does anyone have any experience with this? I am early 30's and have recently been diagnosed. It requires regular biopsies to determine whether treatment is working, and to identify whether the condition has regressed. Mine seems to be persisting and now I've been called in to see a different consultant next week, a short notice appointment, and without warning after my last biopsy. My heart sunk when I got the notification, I have no idea what it could be, and I don't know what I'm looking for maybe a hand hold, positive stories, ANY stories. I know it's quite unusual in pre menopausal women and seems to be a bit of an overlooked condition in terms of studies etc. I just can't seem to find anything real online and I'm going sick with worry. I'd never even heard of it until recently and I'm sure many people are the same, if you have heard of it though do you have any stories to share?