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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.
[i:715368a4eb]This message was automatically imported from the original Patient Experience[/i:715368a4eb]
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