looking for any new advise or info

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Hi,

I was diagnosed with LS in 2004, a year after having my second child at the age of 31.  I noticed itching and sores and immediately started looking up info.  thought it may be LS so went to a free clinic to a dermatologist who diagnosed me. Ive been using Clobetasol treatment ever since.  Using it twice a week.   I live in the US and have only found disscussion forums for LS for UK.   I have tried to find Aqueous cream but not found it and have tried other creams and just gave up.   Symptoms have not been too unbearable but do get worse near and on my period.  Drs are not the most helpful.  Sex was not too much of an issue as my husband had ED issues.  For the past year he has been taking testoerone and his ED issues are getting better so now we are having more intercourse.   For a while it seemed the more sex we had the less symptoms of my LS I would have.  But that was short lived.  I experience dryness so use lubricant but still experience irritation after ward.  I just recently heard about using coconut oil as lubricant.  Any one else try it or have other recommendations. 

Thank you

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  • Posted

    Desitin!!!
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    • Posted

      I never thought of using that.  I have seen Palidin (sp) recommended is that similar?  I will have to try the Desitin. How often do you apply, as a preventative or after flare up starts?
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  • Posted

    Hi there! I live in Philadelphia..I was diagnosed about 3 months ago..my gynae did a biopsy after noticing some white patches on my vulva..i used Clobetasol twice daily for a month then daily for a month and now I use it a few times a week....I also seem to find all the info on the UK sites..I'm not sure why this is. My symptoms seem to be like yours..at the moment tho, I am having alot of burning probably due to swimming, something I dont want to give up. My husband has ED...so our sex life is also a bit problamatic...but I do find that my symptoms are easier after sex..I also heard about using coconut oil for lubrication..bt i havent tried it. Makes sit easier for me to know that at least one other woman in America has LS!!!
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    • Posted

      yes!  it is nice to know.  I believe my LS started after my second childbirth due to possible hormonal changes and or too much trauma to the area since my first childbirth was very traumatic to that entire area.  I do find that my flare ups star premenstral and last a few days after.  I am 42 now and really would like to try some different stratagies  to calm the irritation.  I will try the desitine or butt paste, just been applying vasaline to ease the irritation.  interested in trying the oil for lubrication , will have to test on me and husband first to make sure it doesnt cause irritation.  I also have another skin disorder(dermagraphism) which I take benedryl to ease itching which can help with LS Ive heard. I am definately thinking it has a lot to do with hormone changes for me.
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    • Posted

      I found a sight called Living with Lichen Sclerosis , that mentioned a lot of relief remedies
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  • Posted

    I'm Canadian, not in UK. There are lots of North Americans on this forum.

     

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    • Posted

      Clobetasol is the same as Dermovate. Any cream anyone mentions, I just Google it and if it's Clobetasol Propionate .05% that's the potent cream we all get prescribed. There are half a dozen brands names at least. I haven't tried to find any of the washing lotions, I just use plain water. As far as moisturiser, anything oily is good as long as it doesn't have perfumes and alcohol, etc. You can just slather on coconut oil at night. 'Yes!' lubricant is available in health food stores in Canada, not sure about the US. I'm sure any department that has a lot of supplements and fancy eco soaps will have a hormone lubricant like Yes!. It's expensive, about $20 for a small tube.

       

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    • Posted

      yes I use the Clobetasol Propionate.   Ive tried to find equivilant creams for washing and didnt find any, I too just use water in that area and a hypo allogenic , frangrence free body wash such as Dove or Equate brand.  I just want to find something good to ease the irritation and rawness until it heals.  Have stopped looking for a US only forum. 
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    • Posted

      I tried to post a link to a list of things suggested but it needs to be approved by the moderator first.

      Vinegar was one thing mentioned or chamomile tea bags. but the list is long to post.  Vanicream from Wal-Mart was mentioned as well. 

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    • Posted

      This forum never allows links except sometimes to another thread here. You can name the product or suggest how to google, but any post with a link in it gets it cut out.

      It's good, really. People would be advertising stuff all the time. There's no incentive for any non-sincere person to be on here.

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    • Posted

      I live  in NYC and  I have been able to find certain creams and ointments that help. Usually the better health food stores and  herb shops  carry some good items. I've even purchased some good stuff on Amazon.  I find that calendula creme works  well when I have perineum tears or irritation. I find that calendula ointment with other herbs can be too harsh for that area and will cause irritation but I can use the calendula ointment on my vulva and it will not cause irritation and it does not feel as thick and greasy. I've had mix success with emu and olive oil. I find it's hit and miss with these oils but at times they have really helped. I've  had some good results with organic Virgin coconut oil. It's very soothing and does not feel so oily. I find that if I use lots of oils it will build up and I'll get a rash on my inner thighs. I just saw my dermalogist 7/23 and she said just keep the area from getting dry. She feels the skin needs the oils. In terms of washing she said using Dove fragrance free soap or Cetaphil wash on the outside and my inner thighs s okay. I asked her if there is anything I could use to wash the vulva and anal area she said just use warm water do not use soaps. I happen to have a bidet and use it after I urinate. I've purchased a portable wash bottle which I discretely use at work. I also will apply some coconut so the skin won't get irritated.
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    • Posted

      I know I tried the calendula years ago, I think it was the cream. I didnt care for it. It definately helps to keep it moist. The dryness seems to cause tearing and irritation. I have seen some expensive products online. I too get sensitive to things. I would like a few products to alternate. So far have heard good things about the virgin coconut oil.
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