Strength of steroid cream, plus finding a vulval specialist (in the UK)

I can’t really comment on the steroid cream question as I’m fairly new to this LS myself..I’m having a biopsy tomorrow to confirm.

I decided to go and see a dermatologist privately who specialises in vulva care.  I had been referred to a gynaecologist by my GP for the biopsy but when I spoke to the hospital they said I need to see a dermatologist so I have decided to go back to the private one I saw as she was very knowledgeable on the condition. 

If you call your local private hospital or google dermatologists in your area  it will tell you if they specialise in vulval dermatology. 

Hope this helps. Where are you in the UK? I’ve read online that the Royal Free hospital in London have a good one too..maybe your GP can refer you there? 

Good luck keep me posted! 

Debbie 

I'm on the lowest possible strength of prescription steroid cream -- Desonide -- and it works for me.  I never started on anything stronger so I don't know what it would be like to step down, but it seems like you'd want the lowest dose that still keeps things under control.  I've been told to get it down to a couple of days a week if possible, but that daily use is okay if I'm having symptoms. 

I'm in the U.S. so I don't know how to answer your other question.

Hi Joan, I live in Cornwall and asked my GP to refer me to a dermatologist rather than a gynae. The one I'm under is a Consultant Dermatologist at the Vulval Clinic at my local hospital. You shouldn't have to pay privately to get treated. Neither of the 2 GP'S I saw thought I had LS, but was diagnosed by looking at it by lady specialist at the clinic. Your GP should know which dermatologist deals with vulval conditions. Regarding the steroid, I'm on Dermovate, but just told to reduce from every day for a month, every other day, now on twice a week maintenance dose. My second appointment isn't until March, so don't know what she'll recommend then for long-term, but if you're doing okay for now, just ask when you have a dermatologist sorted. Good luck x

Btw, forgot to say, apparently it's important to massage any ointment/cream in well for it to penetrate properly.

You could look for a Vulval Dermatology clinic, there's one at St Michel's in Bristol and apparently there are a few others dotted about the UK. I have found a fantastic GP who is a dermatology specialist as well. There are experts hiding in all sorts of places, what part of the country are you in? Maybe people could suggest clinics they know about.

Good Luck

Hi Joan. I too am using the same steroid as you. If it works keeps using it. I was supposed to taper down but found I couldn't just yet. I can't find a vulgar dermatologist in the south of Ireland so I plan to travel to Belfast. It's terrible that there isn't anyone here. Wishing you the best of luck in your journey with this horrible disease x

HI Joan, I do not live in the UK but I can advise you on what I do.  Maybe you could start by asking your consultant to refer you to a vulva specialist. Sometimes dermatologists have had experience in LS. Maybe do a search in your area online to see if anything pops up.  Check vulva specialists first... sometimes some gynecologists are familiar with LS and are good at it. If you are not sure... ask.  Ask them which cream is best... Clobetasol... Betamethasone or what they see is best.  It's good you are symptom free for now.. but i can understand wanting to know what to do if symptoms start appearing.  

Clobetasol in my knowledge (limited) is one strength. I've had mine for 4 years. You have to be very careful to apply a pea sized amount of it as it's very potent.  I was told to soak in a very warm bath for 20 minutes before applying it, then rub it in for 90 seconds so it penetrates the thick skin of LS.  I use my Clobatesol twice a week to prevent flare ups. So far it's working fine. When I did have active symptoms I soaked in 1 cup of baking soda for 20 minutes. It's very soothing and it won't hurt,.  Please keep in touch!  DEbi