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reassurance required

Posted , 6 users are following.

elizab62
elizab62

I am 53 and am going through the menopause.  I have been treated for the past year for thrust.  However recently I went to my doctor for a routine smear test and was told it wasnt thrush.  She said I had lichen sclerosus, she printed off an information sheet for me and told me that there is a chance I could get cancer and it is malignant.  She has referred me to a dermatologist.  I am very worried as I had never heard of this disease before.  I am very itchy but this only occurs at night.  I have had a few cuts but these don't bother me much.  At the minute I think I need reassurance more than anything else.  Is there anyone else who felt like this.

 

1 like, 22 replies

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  • Morrell1951
    Morrell1951 elizab62

    Posted

    Hi Elizabeth,

    First off, you can absolutely put your mind at reast about cancer. LS sufferers have a bit greater chance than average of getting squamous cell carcinoma of the vulva. And once you're under regular monitoring (I go twice a year) they'd catch it at the stage of VIN first. The women who get SCC have gove untreated for many years. If your GP didn't give you a prescription for a potent corticosteroid cream, the dermatologist certainly will. It's completely standard. You use a very small amount (starting with more, then decreasing to twice a week or so) so you're getting a very low but steady dose that keeps the inflammation at bay. It's the constant open wounds that probably dispose us to cancer. I used to have a deep tear the length of my perineum a lot of the time. The Clobetasol (also called Dermovate and a few other brand names) has really calmed my LS down in the year since my diagnosis. I'm one of the unusual women who've had it since babyhood – 62 years. And I haven't had any bad cells there.

    Hope that makes you feel better. Take care of it with oily moisturizer (even organic coconut oil), no soap, loose cotton panties and have a look at whether it gets worse if you eat a lot of sugar (mine does, immediately). Worrying and other stressors don't help it at all.

    Glad you came. It's a great bunch of women here. Loads of helpful hints on all the threads.

    • elizab62
      elizab62 Morrell1951

      Posted

      Thank you so much for your prompt reply.  This has very much eased my mind.

      I am sure my GP didn't intentionally set out to worry me but I think the words cancer and malignant would frighten most people.

      She has prescribed me hydrocortizone tablets which I think is for the itch and she said just to continue using canestan cream until I see the dermatologist.  Thank you for all the tips.  I had never heard of LS before and didn't know anything about it so the tips etc are great.

      Thanks again. 

    • Morrell1951
      Morrell1951 elizab62

      Posted

      It'll be good to have the yeast cleared up before the dermatologist looks. And to get the proper prescription. LS is all about scarring and atrophy. Itching is definitely awful, but treatment is about slowing (preferably stopping – even reversing in younger women) the progress of loss of 'architecture', which means topically applied cortisone. My inner labia fused together into the hood over my clitoris. I wish I'd known about LS during menopause. I would have watched like a hawk with a shaving mirror to see what was happening there. I looked once, probably when I had a boil in my groin, and noticed what seemed like my labia 'sticking' together, so what did I do? See a doctor? No, I started scrubbing and soaping much more vigourously. Worst thing I could have done. You're smart to have seen your doctor and lucky to have had one that recognised LS (many don't).
    • elizab62
      elizab62 Morrell1951

      Posted

      Its great to be able to correspond with someone who knows so much about it.  This is probably a silly question but I thought the hydrocortizone was for the itch as the GP didn't say anything and when I collected the tablets from the pharmacy there was no leaflet with them. I didn't even go to my Gp because of the symptoms it was at a routine smear appointment.  I was quite angry at first about her handling of the situation but in hindsight that was probably just me being anxious about it all.
    • Morrell1951
      Morrell1951 elizab62

      Posted

      I think I'd be angry, too. She was right to refer you to a derm, or a gynae would be good, too. (If you're not happy with the derm, you could still go to your gynae.) I really can't figure out what the pills are for. I used to take a generic antihistamine for psoriasis itching. Hydrocortisone pills seem like overkill to me (who doesn't know anything), depending entirely on the dosage, which you haven't mentioned. If I were you I'd hold off till I saw the derm, unless it's going to be months.

      You really should ask your pharmacist about this prescription. I'd tell her/him that you have LS and you understand the standard treatment is a locally applied cream, not a systemic steroid pill. You're going to have to taper off those and I wonder if you'll have to wait quite a while before starting the cream. I'm not advising you not to take them, but if you weren't even given a leaflet, I'd certainly go right to the pharmacist and have a detailed consultation.

    • anna80050
      anna80050 Morrell1951

      Posted

      Hi again!! so I'm still not clear...i had 2 thin white lines that cleared up after using Clobetasol daily for a month..so should i only use it now twice weekly on the same area where the lines used to be??
    • Morrell1951
      Morrell1951 anna80050

      Posted

      That's what I would do. And now we've learned from Dr. Goldstein, in case you missed the excitement, that a twenty minute warm bath (soak) first and 90 second rubbing-in time for the ointment improves efficacy hugely.
    • elizab62
      elizab62 Morrell1951

      Posted

      Hi Morrell

      Got an appointment with derm for 21 aug so really pleased I got one so soon.  Got mixed up in the name of the tablet the doctor prescribed its not hydorcortisone its actually hydroxzine.  Ever heard of them.  Also you mentioned before about moisturing.  Is there anything you would recommend.  Had an outbreak at the weekend but think this is probably because I was so stressed last week. Thankfully have calmed down a bit.

    • Morrell1951
      Morrell1951 elizab62

      Posted

      Hi Elizabeth, Oh, my God he gave you Atarax! I'm still angry nearly twenty years later at an on-call GP on the weekend. I talked to him on the phone, in tears with a terrible flare of psoriasis and he gave me a prescription for Atarax. My ex-husband's senile mother was given the same thing when she had huge itchy patches of psoriasis – because she couldn't be stopped scratching. That drug knocked me flat on my back – and knocked my mother-oin-law out for weeks, mostly.

      Wikipedia says: "Today it is used primarily for the symptomatic relief of anxiety and tension associated with psychoneurosis and as an adjunct in organic disease states in which anxiety is manifested. Because of its antihistamine effects it can also be used for the treatment of severe cases of itching".

      I can see why doctors prescribe it when our primary complaint is itching. I used to take generic pseudophedrine (Benadryl), very cheap at the pharmacy counter without a prescription. I only took it at bedtime, because it made me a bit drowsy, as many allergy meds do. Hydroxine/Atarax does this in spades.

      It sounds like it has actually worked OK for you. But it's not the long-term solution to LS.

      I have two local women who make herbal creams, so I use those. If I lost access to them I'd get a tub of organic coconut oil from the health food store. It has the consistency of shortening and a lot of women on this forum have sung its praises. I believe that using oily creams takes the place of using estrogen cream, which disagreed with me terribly.

      Do watch this hour-long presentation by apparently the world's most knowledgeable gynegologist on LS, whose wife is a dermatologist, so he's the closest thing to being both. Everything we need to know.

      The link to the lecture is right at the top of this thread:

      https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    • elizab62
      elizab62 Morrell1951

      Posted

      Thanks for the info Morrell.  I have only taken 2 of the tablets.  The prescription said to take 1 or 2 at night and there was no leaflet with tablets when I collected the prescription.  When I got home I telephoned the pharmacist and she said they were ok to take.  There is a health store near where I work so I will get the cream there as I have been using canestan but it hasn't eased this recent outbreak. 
    • Morrell1951
      Morrell1951 elizab62

      Posted

      That's good. If the doctor said you don't have thrush you shouldn't keep using Canestan cream – it's an antifungal. Save it for when you actually have a yeast infection.
  • Holiday_girl
    Holiday_girl elizab62

    Posted

    Hi Elizab62 

    I had bad irritation down below for about 12 years I a now 70 mostly at night after last wee before bed. Went for a smear test last year had 3 kept coming back abnormal so was sent to the hospital for a further test but as soon as lady looked she told me what I had I had never heard of it before like many people I have since spoken to. I was put on Dermovate and Hydromol straight away and felt instantly better. I have never had a tear and mostly itch free except when I get forgetful with the Dermovate which I use approx every 10 days. Only problem I find the Hydromol makes my trousers oily between my legs so have been using less. Not something nice to have but many people have much worse. By the way I was diagnosed with under active thyroid about the same time and many on here have the same problem perhaps worth checking out 

    Good Luck Carol

    • elizab62
      elizab62 Holiday_girl

      Posted

      Thank you for your reply.  I read somewhere about thyroid disease being linked with LS.  I am waiting for a dermatology appointment and I think they will check this out.  I feel kind of bad complaining because my symptoms seem relatively mild compared to others.

      Thanks again.

    • Morrell1951
      Morrell1951 elizab62

      Posted

      It's great to start treatment when it's mild. It's not too late to avoid most of the bad stuff!
  • rebecca71878
    rebecca71878 elizab62

    Posted

    Yes in the beginning of my treatment I was very itchy and red.  But that will go away when the dermatololgist begins your treatment.  My dermatologist tells me that do not know the cause but she believes our immune systems can become overactive and began attacking the skin, other people believe it only happens after menopause.  My question is if women got if after menopause why do little children get it too.  So I beleve the immune system can play a part in LS.  You have nothing to worry about.  LS is treatable most often with temovate a potent steroid ointment.  It's so important to remember to only use a very very tiny amount of the ointment when you begin it because so many women's symptoms get a little worse after starting the ointment but most times its because they apply to much of the ointment to the vuvlar area.  My dermatologist does not recommend I use clobetasol the generic ointment to temovate because clobetasol can be more irritating than temovate.  It was for me because I kept getting red and irritated around the vuvlar when i was using clobetasol but when I started using temovate the irritation left.  I had one spot and it was where they had to cut me when I gave birth to my 3 daughters that was sensitive to the ointment more so the dermatiologist told me to rub a small amount of destine baby ointment there on days I don't use the temovate.  It helped so much.

    My LS is all gone on my vuvlar are thanks to my dermatologist.  She recommends that I use a tiny amount of temovate 3 days a week to keep the LS from returning.  I use it monday, wednesday and friday nights a very tiny amount.

    Best wishes to you and things will get better for you.

    • elizab62
      elizab62 rebecca71878

      Posted

      Thanks Rebecca. I never knew this support network existed and its been so reassuring.
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