I was diagnosed with LP in Sept 05 after experiencing di...

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I was diagnosed with LP in Sept 05 after experiencing discomfort and soreness for some months in the genital area. I saw 4 or 5 doctors at my GP surgery and although prescribed corticosteroids, which did reduce inflammation somewhat, the soreness persisted, making even shopping at the supermarket very uncomfortable.

Then I noticed sores in my mouth and my GP referred me to a consultant dermatologist. I was advised that there would very probably be a 9 month wait so went privately even though I have no private insurance.

First symptoms were a very prickly feeling in my pubic hair. The skin was red and sore - a bit like chapped hands in a cold wind. I was told to use lots of moisturiser which made matters worse. I then developed a purple rash on my inner thighs which made walking sore. This cleared up with the use of betnovate and fuciden used alternately twice a day but kept coming back. It was very worrying not having a diagnosis and with two small grandchildren to look after I was concerned it might be catching. This went on for about 3 months

The next stage was that the soreness spread to my vagina. Betnovate again helped reduce inflammation but the soreness persisted, particularly after walking. The problems seemed to fade slightly after about a week but just when I was daring to hope they were going, back they came. It was all very distressing.

I was so relieved to get a diagnosis in September this year and had high hopes for an improvement. At that time, although I had mouth ulcers they were not particularly painful. I was prescribed Dermovate for the skin condition, a small dose (10mg) of Amytriptolene which is normally prescribed for depression, I understand, but my consultant felt might help with any anxiety. I was also prescribed Proctosed which is usually used to treat the pain and irritation caused by piles! This last has been brilliant at relieving pain in the vulva and I only need to use it once during the day. It works almost immediately.

The mouth ulcers are mostly along the edge of one side of the tongue and slightly underneath and also on the inside of my lips both top and bottom. Before anything became visible, the tip of my tongue felt as though I had been chewing a hedgehog - it was so prickly. A mouthwash made by the hospital did help clear the ulcers but they came back with a vengeance as soon as I stopped. At the moment I am persevering with lots of Bongela which seems to help, and I do have periods when the ulcers seem to have cleared almost entirely.

The worst thing about LP is that even after diagnosis no-one seems to know what's going to happen next. I feel very anxious about it being both in my vagina and in my mouth. I also suffer from IBS and when all three come together life seems pretty miserable. I suspect my GP thinks I'm a bit of a hypochondriac. Thank goodness for my consultant.

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5 Replies

  • Posted

    hi read your article on lp, i have lp of the vulva and find it very distressing, sore and painful. has proctosed worked for you? i have had lp for 5 years and seen my doctor and consultants with no prevail. it makes you feel very anxious and depressed. would like to hear more about your experience with lp if you would like to reply would be great to talk to someone else who has experienced the same........sad

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  • Posted

    Hello Michelle

    Golly, I hope mine doesn't last 5 years! Proctosedl certainly does help when I have a flare up. It only stops the pain and I still have to use dermovate for the inflammation. I only use Proctosedl on an 'as and when' basis and then it lasts all day. It's reassuring to know I can get some relief even though it doesn't cure anything. I have spells when the lp calms down and then I don't use any medication at all but I find that vaseline helps a lot. I use it every time I use the loo as a barrier against urine which I am sure irritates it. I can go for a week or two before I have to use dermovate again.

    Before lp I used to be a dedicated trouser wearer but I get too sore these days. I now not only don't wear trousers but no knickers either for the same reason! I find skirts and slips much more comfortable.


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  • Posted

    I have been suffering with erosive LP for over 10 years. I was treated for a yeast infection for 1 yr. Then I lost hair on the top of my head, a spot about 2". I had the area biopsied and was told I have lichen planus. They told me it was rare for hair loss. That explained my so called yeast infection. I went to a gynocologist for chronic disease. He put me on temovate ointment which I used outside and inside the vaginal area. It helped with itching and soreness. But it is erosive which causes the vagina to close. I had surgery twice to open the area and was put on protopic ointment to help keep it open. I use it every other day but my dermotologist told me is has been found to cause leukemia so I'm trying to be cautious. The outside of the vagina is free from LP but the inside is still trying to close. I have had oral LP for many years. I recently went to an oral pathologist and she gave me a prescription for temovate which is the same ointment my gyno gave me 10 yrs ago for the vaginal area. I use it orally and it doesn't cure it but seems to keep inflamation down a little. She also put me on prednizone which cleared me up but I don't know if it was worse being on that drug or having LP. I have it on my cheeks, gums and the side of my tongue. Anyone suffering with this horrible disease know the pain is is to eat. My kids told me I wasn't doing enough to find out more about LP. My 10 yr old recently showed me how to use the computer so today I found this website which is an answer to a prayer. Its comforting to know that your not alone with this disease. Hope you're feeling better. Vina

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  • Posted

    Hallo to you all.

    Ypor postings are simply amazing and so informative. I suffer the same symptoms as you women continuous sore vagina/vulva which actually prevents me from walking. Also find the whole disease very emotional and depressing and would really appreciate if you would answer my plea for help and information on what creams etc to use.

    daily life is a chore with the constant soreness. Please reply or leave a message where i could make contact with you women. i feel very isolated and need the help of like minded/affected women like you. also have oral lp. 100% aloe vera gel great for controlling the symptoms.

  • Posted

    Hi Mayocovie, I too feel isolated like yourself and have just added my experience of LP to the forum. I am afraid it is too soon to know whether the treatment I have been given will work, steroid creams seems to be the only treatment so far. Please read my experience under my name Joybells. We should keep in touch and maybe one of us will find some miracle cure? Yours Joybells.

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