Dermovate use and doubting I have LS

[yorkshire70]

Hi
I’ve read some of your responses and I don’t seem to fit a typical LS presentation.
I was diagnosed by the gp in September, referred to gynaecology and prescribed dermovate and epaderm. I had a white patch but not smooth, more like a white scab, and lots of redness and inflammation and burning - but no itching. (I’d been on topical oestrogen for 2 years with no probs so go didn’t think it was atrophy-related)
I used dermovate twice a day for 3 months before feeling any real improvement, though the white patch disappeared quickly and fusing of inner labia stopped too.
I am now on amitriptyline and it really helps me not to feel that constant feedback and burning sensation from the vulva. Areas of inflammation are between the vagina and perineum, and either side of the urethra. They respond really well to dermovate but only temporarily. 8 months on, I am still using dermovate on these 2 areas every other night and any time I’ve tried to go 3 days, the inflammation and discomfort has increased quickly and I’ve had to go back to nightly for a 3-4 days to settle it down. I sit on a donut cushion to prevent inflammation/redness/soreness and limit how far I walk.
Visually, the red bits are small and a doctor would say insignificant but it still feels sore and is reliant on me limiting normal activity to keep it like this. I’m scared someone will tell me to stop using dermovate but I would be in a right state without it! Can LS be like this? I have been referred to vulval dermatology but have been told it will be ‘years’.

[Dr Rosalind Simpson]

Not everyone with LS experiences itching. Some experience pain/discomfort/irritation instead. Only LS and lichen planus cause changes to the anatomy and treating these should reduce progression of fusing, which has happened in your case. You also describe that the white patch has gone.

The pain you are experiencing could be vulvodynia which ahs occurred as a result of the skin condition.

Inflammation between the vagina and perineum could be lichen planus. Alternatively, a condition called plasma cell vulvitis can cause orangey-red, sore areas on the inner labia minora, the moist surface of the vagina and entrance to vagina.

From the information provided, the diagnosis isn't completely clear. It is advisable to be referred to someone with expertise in vulval conditions, as has already been done. Whilst you are awaiting the appointment, your GP could always ask for Advice and Guidance from the specialist team if you continue to struggle with your symptoms.