Lichen Sclerosus questions.

Posted , 10 users are following.

Hi, I was diagnosed with LS 5 years ago but have possibly had it for 6 years. I kept thinking I had a touch of thrush as it was only apparent when I dried myself after a shower. Since then I have treated on and half with the steroid cream and also with aloe vera gelly and recently with emuaid cream. I have always been especially tender and sore aound one side of the vaginal opening but all my exams - 6 monthly - have been ok. Again, the tenderness and soreness is mostly only on drying myself. My last appointment was over a year ago - my doc had said once a year is ok on my last year appointment. Tbh I have been negligent in looking after myself for some time and only began topping myself up regularly with creams these past few weeks before my due appointment. I had my check this morning and doc says all looks well apart from a red sore area on one side of my vaginal entrance. I had not seen this when I have kept a check myself - and have been checking this past several weeks. So I am wondering if I have caught myself putting the cream on this morning. Anyway I had another look on getting home after the doc said exactly where it is, and I can see it looks like a sore very red area around the size of half a small finger nail. It looks a little like a broken blood blister but lighter in colour. The doc told me to use the steroid cream for 6 weeks every day and go back to see her. If it hasn't cleared up I will need to have a biopsy. I am an anxious person at the best of times. I have an allergy to gas based anaesthetics so am very worried about having it done (I am more worried it is cancer!) Doc said it is not anything horrible but it is a change in the skin she did not see before so needs to be checked. She specialised in skin condtions. So hoping it has not turned yet!! My heart is racing as I type this. So much going on in my life and so many people depend on me. I have had a very tough 7 years and thought it was all just starting to calm down - now this. Has anyone else had an angry looking red spot or area which calmed down with the steroid cream use? I have had overall deep pink areas which sort of blended with the rest but not this obvious red area. Now I know it's there I am very aware of it and it does feel sore and tender - so hoping I did catch with a bit of nail. Thanks in advance for any replies.

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  • Posted

    I think this type of thing is common with Ls just use the steroid cream like the doc said and Im sure it will get better. I do think stress and sugar makes things alot worse so try not to stress to much xx

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  • Posted

    HI Ann

    Try not to rub yourself when drying. I tend to dry with a towel around the area but just dap excess with toilet roll, then i know it sounds funny but took advise from someone on here. I SWITCH on the hairdyer to finish off. Then its ready for moisturising! I have the soreness on one side but dr couldnt see anything. I occasioally get a red patch too but it does go so try not to worry! ITS a pain this condition. You just have to be relgious with your care to keep it at bay

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  • Posted

    Hi Justine and Su - thank you so much for taking the time to reply and for your advice. I have had a craving on chocolate buttons for some months now and know it's not doing me any favours, so this is a good reason to stop and see if it helps also. I feel easier knowing you have had the patch if red and it's cleared up, Su. Hoping mine does the same. It certainly can be a tricky condition and I will make sure to keep on top of it in future instead of letting things slip. Thanks again x

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  • Posted

    Ann, I am glad the Dr said to return in 6 wks, -hope you are better by then but don't worry because all they do is take a tiny piece the size of a pencil eraser and it is super quick! I had it done and it is peace of mind to hear the neg results. I had the same symptom and it went away. STAY POSITIVE ! (We all know stressing worsens it!) Best of luck on your next exam, and know we all share your pain! 😃

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  • Posted

    Thank you and bless you for your reply Sandra. I am trying to keep positive about it and have been wondering just how much they take for a biopsy, so you have explained really well. Of course hoping I don't need to but it has helped to know what to expect.

    Thanks again x

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    • Posted

      Hi, I've been dealing with LS for a few years. Because I'm already a cancer patient, my Oncologist referred me to a Gynecologist Oncologist. My first biopsy was unexpected, so the fear factor hit me, it actually was not that bad. Took little time, and healed quickly. Am preparing for biopsy number 2 in 8 weeks, they saw a new spot today. It's not always cancer, mine did have cancer cells, but that's not always the case. I wish you luck...and stay positive!!!

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    • Posted

      Thanks Ruth - wishing you luck too!

      Thought my sore patch was going but it feels a bit tender again today. Will be three weeks tomorrow since I started the dermovate and I had stopped worrying about it. Now am feeling a bit worried again. Got three more weeks to go. Will use the cream morning as well as night and see how that goes. Using olive oil between those times. Fingers crossed.

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    • Posted

      That seems to be the problem with LS, it's stubborn to treatment. The cream works for a time, then the irritation comes back. Hopefully, they will find something that truly works!! Unfortunately, I have a new spot, and going for another biopsy in 8 weeks. I too, am crossing my fingers for you! LS is brutal.

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    • Posted

      Thanks Ruth - fingers crossed for us both. My problem is a new sore area too - not white, which the doc had not seen before. But I have always felt most sore or tender in that area. It's hard to describe the feeling but I am wondering if it is more of a faint burning feeling, as others have described on here tbh.

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  • Posted

    Hi Ann,

    I was diagnosed last September. Paid to see Gyne doc as my GP said referral time to Vulval clinic was around 3 months. I am in th UK by the way.

    GP had diagnosed L S, itching and white patches and fusing. When I saw Gyne she mentioned red spot, as you describe, and said she would like to see it cleared up or would possibly need biopsy. Dermovate and moisturiser prescribed.

    Used creams as directed and back to G P couple of months later. she said thought the red spot looked better. Back to GP couple of months ago as could still see it and asked for referral to Vulval clinic as need reasurance from the experts. Female doctors at my GP keep changing and I think continuity is needed with this thing!

    Saw consultant at Vulval clinic last week. He said vulva looked fine, 3 tiny tears between vagina and back passage. I had thought that as sometimes sore in that area. Said red spots not a problem???

    Left with a programme of how often to use dermovate and moisturise.

    See again in 6 months.

    Glad I perservered to get the appointment and was reassured. However after reading your post not so sure! Sorry for long reply, and all about me, I was about to post all this as a new topic!

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    • Posted

      Hi Frankie, thank you for replying to me with this information, very kid of you. I think the more we share our symptoms and what we have been told by the GPs/Consultants the better. It's weird your consultant said your red 'spot' is not a problem . I wonder if it's a red area or if it is actually literally a red spot? Mine's flat, not raised and is probably better described as a sore or red area than an actual spot. It can be tricky describing sometimes. I am back at the doctors for a check on it in the morning. Feeling quite nervous and honestly I don't know what to expect. The area is not red but I can see exactly where it is although it is now more pink. Still flat. It does not look inflamed but is a deepish pink which looks pretty much like the same pink on my other inner libia. The area around it on one side is rather white so I am wondering if that is why the pink colour still stands out. So, as I said I am not sure what to expect. I don't know if this helps but there is a facebook Lichen sclerosis page. You need to apply to become a member - as obviously it is a closed group. But there is some good info in there and people share their symptoms and concerns. I am in UK too. I think with your consultant being from a vulvul clinic I would trust what he said about your particular red spot. They will know more than a GP. Thanks again for your reply and I might see you in the FB group xx

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