I was first diagnosed with lichen planus 18 years ago fo...

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I was first diagnosed with lichen planus 18 years ago following the cot death of my daughter.Over the years it has been diagnosed in many areas of my body.Twelve years ago on the birth of my youngest daughter it was diagnosed on my vulva.However a recent referral to hospital has now diagnosed cancer of the vulva and the condition I have is now thought to be lichen sclerosus.Please check out these conditions apparently I have a very good prognosis,but regular screening would have been helpful.

[i:ec8580f76d]This message was automatically imported from the original Patient Experience[/i:ec8580f76d]

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  • Posted

    I have been diagnosed with Lichen Sclerosus and Lichen Planus and told that there is no known cure, I am at screaming pitch, I feel that I have tried everything going, creams pils and potions all to no avail. I cant even find any help at all and am not totally at a loss as to what to do. I have been bleeding on and off for nearly a month now and dont even know if its worth going back to my Gp, Even my Gynocologist did not have a clue, I have been suffering with these symptoms not for about 5yrs.

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  • Posted

    Hi I have vulval and oral lichen planus, for the vulval I see a dermatologist every 6 months have had this complaint for about 7yrs, have tried most of the steroid creams which seem to work for a little while but the dreaded itch soon returns, I would advise you to go back to your drs and ask to be referred again, you have to keep pushing good luck
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  • Posted

    hi Codge

    I have had irrosive lichen planus for 4 yrs and got it under cotrol only just now. I was told by my dermatolagist i was really a mess (due 2 another dermatolagist giving me way 2 much steroids that my skin split ) i also had llisions +had to wait 4mts with only the help of oilatum plus in bath 3times weekly+emulisfing ointment , then he could treat me, then to crown it off , i found out that i had it in 2001 and no-one bothered to tell me +that s why i got it so hard to get it healed, i really hope you get reilif as it near drove me crazy, i went private to the Beacon dermatolagist and he was absolutly great to me , so i would recomend him to anyone, i am currently on gabapentin for nerve pain as i had it for so so long (couldent sit down +also had it in my mouth)can anyone explain side effects of gabapentin to me please as i feel very spaced out and starving all the time, and not got ant releif as of yet. I sincerly hope this onfo has helped you codge, if you need name of dermatolagist, post back. Best wishes you will get there smile

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  • Posted

    Hello Ladies and especially Lillymilly,

    Well thank you for your input, I really did feel alone, but now thanks to a new Dr and being

    prescribed Soluble Prenisolone 5mg tablets to take up to 7 at a time if required but usually 4 a day then less as required, plus Betnovate, I am pleased to tell you all that I am now better than I have been for years, my outer skin has healed completely, and inside I only sting now and again, my mouth is also a lot better, and I generally take the Prenisolone tablets for about 1-2 wks of the month. I really did not think that I would ever feel any better, and had completely lost my sex drive, but now even that is starting to return, much to the delight of both myself and my long suffering husband. So the good news is that it maybe does get better, and there is light at the end of the tunnel. Lets hope so. Now I just have to make use that if it does turn cancerous that I just catch it in time to be helpful. I also feel that this is one area where a lot more research needs to be done, generally for women suffering with menopausal problems, and the more that we tell about it the better it will be for our children and their children. Best wishes to you all. lots of love from me x

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