lichen sclerosus GP/ Patient opinion

[Tynetime]

Posting in AIBU for traffic
I have had this condition for a number of years. I was sent for a biopsy a few years into symptoms and the results were not conclusive but it was suggested it might be.
Apart from that no specialist appointments.
GPS prescribed steroid as and when I requested it and I have had appointments over the years when in flare.
My latest flare was awful so I requested a referral to gynaecology. Very atrophic too.
My questions to both people with this condition and especially GPS to ask what steroid was or should be prescribed please?
Thank you

After several years without a definite diagnosis I was finally referred to the dermatology dept of my local hospital which holds a 'vulval' clinic once a week. I attend now only annually and mainly for monitoring purposes. I was prescribed Dermovate Ointment which has been extremely helpful in managing the condition. It looks like you may be in the North East of England? I am in the South East and very lucky to have such a facility nearby.

Thank you. I am now under a vulval dermatology clinic. The length it takes to get the proper treatment for this horrid condition is shocking.
I reckon I have now had it for about 10 years and feel that only now am I being taken seriously.

I have it too and have also been prescribed dermovate.
It's quite a potent steroid so I was told that it shouldn't be used for long periods of time but that short courses of a stronger cream are better than using weak steroids long term.
Also using an emoillient regularly helps me a lot. I find ointments more effective than creams, though they're messier unfortunately.

Thank you @MrsAvocet
I have now been prescribed dermovate cream and seem to get on ok with it. Also tried a plethora of different moisturisers.

was wondering where abouts in the SE you are I am East Sussex, ust been diagnosed, and treatments seem to be making things worse, I dont having itching, just incredible soreness.

I was also prescribed dermovate, and find washing with dermol 500 really helpful. Also, antihistamines (fexofenadine) for when I have a bad flare up.

I had this for years -was misdiagnosed by my GP as thrush and really suffered as did my sex life snd was instrumental in the breakdown of my marriage. Saw a loving GO one day who prescribed dermovate and it was literally life changing. The steroids originally prescribed by the GP fit the unbearable itching damaged snd thickened the skin.
Since dermovate have only had occasional itching that has cleared immediately.

locum GP not loving!!

Hi wondered if any ladies can offer me some guidance.
DD (10) been diagnosed with this condition and has been on steroids for 3.5 weeks. Once daily for 6 weeks and then twice weekly for 6 weeks.

Should I start to see an improvement in skin tone / colour by now? Itching, soreness and burning has gone but DD's entire vulva is still pale. It appears as though the bright whiteness has faded a bit but still quite pale (more of a very pale pink now) with some white areas remaining. The skin texture looks better though.

The derma did say the skin may not clear completely and should look pale rather than bright white. AIBU to think the steroids should be working better 1/3 of the way into the treatment? I suffer from anxiety and I'm so worried the steroids aren't working.

Thank you.

I think response to treatment is a very personal thing. With treatment my white disappeared but I don't think that is the same for everyone. If you are on Facebook there is a support group for parents of children with the condition. Good luck.

Thank you for responding. How soon after starting your steroid treatment did you notice an improvement?

A consideration- if you are peri or post menopausal please try vaginal oestrogen and see if it helps.

Its my daughter who's suffering. She's 10

@skyfullofstars1 about a month. I did two weeks once a day than 2 weeks every 2nd day. Then twice a week. Within 3 months the white was gone.

Brill. Thank you for responding. It's really helpful hearing real life experiences.
So based on your experience, my DD sounds like she's making progress as I've only just started noticing a slight improvement to skin tone 3.5 weeks after starting treatment despite it clearing the soreness / itchiness. I'm hoping by week 12 it will all be gone! Fingers crossed!

@Rocky2022 sorry another question if you don't mind - did it ever come back after your initial treatment?

Its a chronic skin condition. Its very unlikely to go away completely.

@skyfullofstars1 my understanding is that it is a lifelong condition which will need to be managed for life with steroids. However as your child was diagnosed at a young age she may go into remission.

Different in children and it can sometimes go away completely for them.

That's what I've read too.
Thanks for sharing. Really helpful.

I hope so. It's a nasty condition to have to cope with.

I had it as a child(over 50 years ago) and it did go away for a few years, or at any rate was less noticeable. It then came back with a vengeance and I've had several operations and it ruined my marriage.
I was untreated as a child and I think with proper treatment and proper care of the skin outcomes will be much better now.
Hopefully they will find a proper cure at some point.
I'm sorry for all of us that have to put up with this.

@Purplepurse that sounds awful. We live in hope that science can find a cure for it.

@skyfullofstars1 I was diagnosed with this as a child. It went away in my pre teen years and didn’t come back until my mid 20s. It’s not nearly as bad now as it was when I was younger.

Thanks for sharing @Dungabees. Glad it's better for you now.
Considering the handful of people who have responded to my message tonight I feel like it's more common than I thought?