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

@Tynetime im so sorry this is so bad for you and @skyfullofstars1 your poor daughter. I’d have found it so hard at that age. I have been ‘sort of’ diagnosed. I have had cuts and bleeding and areas where the skin has kind of fused. Like
another poster (apologies I can’t find the name) the itching isn’t normally severe and like others, dermovate helps
that. I’d say I have occasional discomfort however despite that I seem to get some painful areas that feel
grazed or like a paper
cut. An gynaecologist said he suspected the condition during an exam for something else and prescribed dermovate. I’ve not had a consultation relating specifically to this again nor consulted the GP as although the bleeding and poor healing sounds dramatic it is very irregular.

Fellow sufferer there are some good websites and fb groups out there I like www.facebook.com/groups/221930761513570 which is women only so everything gets discussed. Sometime people will also comment on their kids

@Tynetime would love to know how you got on with the treatment.

@Zestro thanks for sharing. How are you getting on now? Glad to hear it's not too itchy. I find Vaseline has been a real help as a barrier. Prior to daughter's private consultation (which was a month's wait) this was how we were controlling symptoms. Even the dermatologist commented on how good the Vaseline was at protecting DD's skin from further irritation.

@siestaingsnake thanks for the link. Always fantastic reading real stories.

How lucky you all are in getting treatment, I was diagnosed about three years ago and was prescribed trimovate which gave me immediate relief. When I had my next flare and went back to my doctor she said my medication was no longer available and gave me another cream which I can't remember the name of now but was totally useless. I have been back several times and just get fobbed off, so all I can do now is smother myself in sudocreme when it's really bad. Unfortunately I live in a village with only one surgery, although this was voted in the top three in our very large county!

@Goatling might be worth asking for a referral or failing that, visiting a private derma who specialises in vulval conditions? They can recommend a treatment plan and write to your GP with the treatment you need and to put it on repeat. No need to suffer like that.

Hi. I am @Tynetime. I name changed. So yes once I saw a specialist and I got the right treatment it was life changing. In terms of the stinging/ inflammation.
@Goatling you need dermovate. It is the gold standard treatment. Unlike rubbish eumovate which my idiot GP prescribed by accident.

If that doesn't work there are other options.
Insist on a referral to gynaecology. It is a vile disease. Whilst my skin is now better in terms of no white it is still dry and my anatomy is still altered. Intercourse is still difficult. Tried it once and left with UTI symptoms for days afterwards bar the stinging.
Good luck all

Thank you skyfullofstars and Rocky2022, I think it's time I went back to the GP and insisted on better treatment, wish me luck!

Good luck. 👍

All the best @Goatling. Let us know how you get on.