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When I was diagnosed by a gynaecologist in 2020 I had very advanced whitening and some erosion. I was on Dermovate for 6 months to clear the whiteness and also prescribed Betnovate and 1% hydrocortisone, the latter to be used every day unless I had a flare.
I had to stop this as it was making me very sore, so I am using the Dermovate twice a week.
However, I now have no labia minora or clitoral hood. My perineum has all but disappeared and my anus feels very tight.
I have no follow ups and my surgery doesn’t see patients if they can get away with it.
I’m not sure what the future holds and I’m quite scared about this.

I'm sorry to hear that you've been having difficulty accessing correct follow up. Please speak to your GP practice again and ask for a face to face appointment to discuss your concerns. It is your right to ask for this. using dermovate twice a week is likely to be the best form of maintenance therapy for you once any acute flares are under control. I personally don't find hydrocortisone or betnovate as effective for acute flares.