rvi newcastle

I am hundreds of miles away from you. I am 69 and my GP diagnosed LS when I was 68. She has seen many patients with LS, thankfully.

I thought I would go into the details of my treatment because it may help you to think of questions to ask at your next appointment.

Her treatment for me was Daktacort (which is a combined fungal cream with mild hydrocortisone) for a week. Although the leaflet said use sparingly she told me to slather it on. She said we would deal with any skin thinning later, but the real steroid treatment for managing LS should not be done in the presence of any fungal infection.

The Daktakort calmed down all the itching and soreness within the week.

She then started me on the higher potency steroid called Dermovate (which is Clobetasol Proprionate). This is higher potency steroid than your Betnovate. I used that, in tiny amounts, under her supervision daily for a couple of weeks, then tailing off over several months to once per week.

Once I started to tail it off the Dermovate, she added in Oestrogen used topically. She intially prescribed Vagifem tablets to be inserted into my vagina but I had an issue with the side effects. So we switched to Gynest cream (also Oestrogen), which officially is to be used in the vagina, but with her agreement I use it on my vulva and groin.

It is pretty magical at counteracting the skin-thinning side effect of the Dermovate and at plumping up my flaccid labia majora to their previous state. It even repaired the skin cracking at the top of my natal cleft, which I have had for many, many years.

I've had one bad flare up since then where I got another fungal infection in my groin-leg creases. That was really painful, sore, itchy, bleeding. So back to the Daktacort for a week, then Dermovate a bit more frequently than just before the flare and now tailing off to once per week interspersed with the Gynest cream.

The only real worrying part of all this is my biopsies showed that I have Lichen Planus as well as Lichen Sclerosus, so that makes me qualify for management by the vulva clinic at the main hospital. This is because it is a trickier condition, which can travel up inside the vagina, unlike LS.

Good luck with your treatment. I hope it gets more effective.

Sorry to hear you are suffering so badly with this awful condition. I have been going to the RVI for a number of years now and have only ever seen female Doctors. I either see the Consultant Dermatologist who is female  Or one of her under studies who have all been female.

She prescribed me Dermovate Ointment and advised during a flare up to use every day on all effected areas, once things settle down to use it twice a week. She also prescribed me Hydromol to wash with. I get this on prescription 500 ml at a time so it lasts quite a while. 

You may also have read on this forum that urine is caustic so use some we toilet paper after you have pee'd to wipe off then dry yourself and apply something to moisturise, I either use a little of the Hydromol or Coconut oil which I buy from Sainsbury (Lucy Bee's) it is very soothing and can be used liberally as often as you want. I know others use pure aloe Vera or emu oil.

hope you get things sorted.

best wishes,

Hazel