Help for my Lichen Sclerosis

[wendy1066]

I was diagnosed with Lichen Sclerosis last year,I had visited my GP several times beore the diagnosis with constant vulval itching. I was given various creams but only Dermovate stopped the itch, unfortunately this was replaced by quite extreme pain and found it difficult to sit comfortably. [I would rather have stuck with the itching!!]

I have tried not using anything but the pain continues.

It is also much worse if I wear tights or trousers.

In the last few months I have developed Raynauds in my fingers which go yellow and are also very painful. I'm also very worried that the sclerosis may develop into cancer.

[Anteater]

hi Wendy

I also have lichen sclerosis of the vulva - I manage mine with Dermovate ointment (not the cream as it has preservatives in it and will irritate the LS). I also have problems having intercourse due to damage the sclerosis causes. I have also had an operation innthat area and biopsy for a bit of lichen which was not responding to treatment. I am managed by a super team at the royal free hospital in London who specialise in vulval problems. I also have systemic scleroderma, Raynauds and other auto immune conditions all secondary to scleroderma all dealt with at Royal Free.

I certainly would advise you to ask your gp to refer you to a vulva specialist so you can be checked on a regular basis.

Hope this helps

[Jax1]

Dear Wendy,

Poor you, I fully understand. I have the same problems and I can't use Dermovate. I only wear cotton underwear, leggings, cotton or linen trousers because of the same problem as you have. I cant use any soaps, so I wash with diprobase in that area. I agree with anteater, I attend the Royal Free Hospital and see a very good dermatologist. They have put me on a cream called Diflucortolone Valerate. I also joined a very good website, maybe you are a member? I have learned from this group and has helped me to feel not so much of a freak. Lichen Sclerosus is not something you can easily share with people.

[EOLHPC]

hello wendy

sorry i didn't see your post earlier. i hope you get this comment.

i have systemic lupus, secondary raynauds & erythromelalgia, hypermobility and a bunch of other conditions as well as lichen sclerosus, which was diagnosied nearly 10 years ago. i seem to have my version of LS relatively under control now, but until last year i felt very very alone with this condition, and frightened, although my nhs gp, gyn and dermy are very supportive. then i did meet several women on this forum here who have LS, which helped a bit. but what REALLY has helped me learn a lot more about ways to treat and manage LS is the special Yahoo lichen sclerosus forum. I hope you can find it with this home page link:

groups.yahoo.com/group/Lich...

this group is FULL of very experienced and knowledgeable and really really kind caring people. it has made all the diff to my understanding of LS. and now i know that whatever questions i have about LS can get good answers there, as well as the sort of informed sympathy and support that really help me cope. the archives associated with the forum are excellent too

maybe this is the website Jax1 is mentioning above?

anyway, perhaps this forum could help you too

take care and good luck