Recently diagnosed and confused

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I was diagnosed with LS about 2 months ago, or at least the hospital doctor said it was either LS or Lichen Simplex. She clearly was not keen to give me a definitive diagnosis. She diagnosed on examination without a biopsy, and prescribed eumovate cream and aqueous cream. I was told to use the eumovate just at night and the aqueous cream in the morning. The steroid for 2 weeks every night, then every other night, aiming to get it to just when required. My GP (who had recognised the condition as soon as she saw it and referred me immediately) gave me further details of just where to put the cream, because I really am not very good at identifying the pale patches!

I followed the plan - except that the aqueous cream stung when I applied it, so my doctor prescribed diprobase instead. I have just been smearing this on and rubbing in a little - I see from posts on here that you can use it to wash with. How do you do that - do you use it like soap with water? I just use water at the moment.

The inflammation did get dramatically better after just a few days of using the steroid cream, but when I tried to reduce it to less than every other day the itching returned so I decided to start again and do a full fortnight using it every night. I've just come to the end of that and now seem to be inflamed and itchy again. I don't think the white patches have reduced, but the only one I can see fairly clearly is my clitoris, which is affected as well as the perineum. I was going to now try to reduce it again - but honestly don't know if I should. I am going back to the hospital in 4 weeks' time, and feel I should at least try to follow the regime she set me before I start blaming the steroid cream for making things worse again.

Just wondered what anyone else thinks. I don't think I have the disease too badly, with just 2 small patches of pale skin. Though I have had a bit of itching for between 1 and 2 years, it was only when I tried to use E45 cream to ease it that I had a dramatic reaction which caused me to crack and bleed, which is when I went to my doctor. I had never heard of this disease till I looked up my symptoms on the internet - and finding this site is a revelation!

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  • Posted

    Hi Chrissie, your initial experience sound similar to mine.I was diagnosed with LS clinically by gyn consultant. Told to use steroid cream for 3 months then review. When I went back it has not settled and I had a couple of small ulcers present, so she referred me to a dermatologist with an interest in LS. She told me I had LS clinically but said I would need a biopsy as this was good practice. I had a flare-up just before my biopsy so they got a good smple of active disease and confirmed the diagnosis. Now I could work on getting it better. I was prescribed aqeous cream but found it reacted with my skin, so I now use Diprobase in a pump bottle which is easier to use in the shower!! I put some on my hand and put it all over the vaginal area, clitoral and anus, beteen the buttocks. Then I shower and rinse the diprobase off by directing the shower head to the relevant parts!!! There is a great difference in how my skin feels. I use the steroid cream twice a week currently as the LS is active on the perineum only now. I use a barrier cream only if I can feel a bit of soreness starting. I use steroid cream if the LS is itchy, as that usually means it is active. I feel as if I am cominig out on the other side now, but it has been a long haul . Once you become used to managing the condition its just part of your daily routine, like taking a medicine!!!

    Chrissie, is your doctor a gyn or dermatologist. My dermatologist drew a picture for me of the white areas so I would know where to apply the cream, she also pressed on the relevant areaas as well so I would know which ones needing treating, It sounds a bit odd I know, but it worked!!

    Although you only have 2 small areas of sorenes/cracking, these are the areas which are active and definitely need treating with steroid cream. Hope this helps.

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  • Posted

    Hi cym, thanks for your reply. I saw someone at the Women's hospital, in the vulva clinic, so I presume she is a gynaecologist. It says 'clinical assistant' under her name on the letter which I was sent after the appointment. I have now made an appointment with my GP next week, although the one I saw before is now on holiday so I have to see someone else. I am beginning to think the problem is actually with the diprobase cream, because last night was my first night off from the steroids after the latest 2 weeks of using it every night, but when I used the diprobase cream this morning I became itchy and sore and the whole area looks red. No broken skin though, but the white areas still look the same.

    So I guess I will use the steroid alternate nights and give the diprobase a miss altogether until I have seen my GP. What a hopeless nuisance it all is! We go on holiday 2 weeks after I go back to the hospital, so hopefully if I'm referred for a biopsy that won't happen until after my holiday. I would hate to be abroad with the pain and soreness people on here have described after biopsies!

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  • Posted

    Hi Chrissie76,

    You poor thing you. Sounds as though the diprobase affects you as well as the aqueous. I don't know what i'd do without my aqueous cream. Have you tried paladin (barrier cream) it sorts loads of us out with the itching etc. I wouldn't think you would have a biopsy that quick after hosp visit, although don't want to worry you but they did my first one at one of my clinic visits - didn't know i was having it. The positive note is that if they did this, you should be fine after 2 weeks for you holiday. After my first one it was, it was only after i had one done in theatre last time that there was more soreness. So i guess it depends on where it is and how many they need to do whether you have it done in theatre or not?? cym's described washing routine down to a T . Try not to just use water to wash as it will dry the skin and make it wors e. Hope you find an emolient that works for you soon.

    We're all in this together so keep posting


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  • Posted

    Hi ive got vaginal astrophy and soreness everywhere underneath,gp said use Eurovate for month but not in vagina, used for two weeks and apart from agony of astrophy the eurovate hurts and no help,, Also steroid thins skin so scared of using much, 

    Any help be very appreciated

    Thanx elizabeth

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