Just diagnosed, want some help

Posted , 7 users are following.

I'm 18 and I was recently diagnosed with LS and would like some help/advise

I have one small white patch, is this the only skin affected or is all my vulvar skin more fragile, and is it normal to have itchiness in other areas nearby but not on the patch? 

What do I need to change in my life to help with this? (other than the use of creams)

I've always had problems tearing during sex, the white patch is not at my opening but is this likely related to LS and if so how can I help stop it ?

Just any advice would be good as well smile It's only been a few days and I dont really know what to do about all this

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8 Replies

  • Posted

    Also, do any of you know what kind of things might be happen in my future? Will scarring probably happen? Is skin fusing common? I'm a bit worried about how my LS will be years from now
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  • Posted


    the best thing you can do is not to worry.  Try and learn some relaxation techniques.  Stress is our worst enemy.  

    I read somewhere that folk your age, provided they get the correct treatment, can see complete remission.  I'm 60, so the best I can do is manage the condition.  Make sure that you are happy with your consultant/GP (don't know where you are sorry) and that they communicate with you properly.  Ask them loads of questions and ask us loads of questions if you need to.  There is a wealth of experience on this forum - some really encouraging and some which you might find alarming.  Don't be alarmed, take the encouragement and try and relax, whilst dealing with everyday self care.  You can beat it.

    Good luck and I hope you see this thing off for good - it sounds like it has been recognised early on.

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    • Posted

      Sorry - me again.  Before you settle into a treatment regime, it is worth keeping a sponge in a plastic box and making sure you wash every time you go to the loo after using toilet tissue.  Adding a little bicarbonate of soda (just a teaspoonfull) to a basin of water, will possibly stop the itching and improve things.  DON'T put the powder on the sponge, this will irritate even more.  Keep the sponge scrupulously clean - this will probably be contentious, but after use, I pour a capful of listerine mouthwash on it now and then and squeeze it out before packing it away in its box.  But remember to rinse it well before the next time you wash - that's important.

      Don't use anything other than water, or water and bicarb to wash with.  Perfumed products and soap are really bad for this.

      Hope this is helpful - I'm sure you'll control it and get it conquered.


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  • Posted

    Hi Danan I am sad you have this tiresome condition as well, but as Margaret said it isn't or needn't be The Most Dreadful Thing. Do watch the webinar by Dr Goldstein it takes an hour, so have paper and pen for notes and a cup / glass of your fav drink too. Also go thro the various topics starting with new to LS. There is a tiny risk of the condition getting nasty but is A VERY tiny risk so while you look and take note regularly do not worry about the future. Everyone has the condition differently and we can only give you our personal experiences and what did and didn't work for us. 

    The one major issue I h

    think we all agree on is stress and the way we manage it. So do look at your life style and your personality type. If you are a stress uptight person your stress levels will be difficult to manage. It is believed that another big contributor to LS is dramatic hormone changes - that is normally out of our control but again the symptoms can be managed. Many believe diet plays a large part in their condition. High sugar intake is known to be a contributory factor in inflammatory conditions so it would be wise to really reduce the sugar intake. Both overt and hidden as in alcohol and ready meals...and tis better for the skin too. Genetics is THE main factor in autoimmune conditions we can change our genes but we can change how they affect us. Check with your relatives whether any one has an auto immune condition asthma arthritis lupus and many many others are identified we just happen to have one that affects the under carriage In some ways a blessing as only we...and our partners KNOW other skin conditions are much more evident.

    keep body fluids off the vulva, barrier creams ointments, scrupulously clean at all times with water and or weak bicarbonate if you think the area is too acid. Some have found their labia fuses when too avid and the area looks 'sticky', it may be useful to gently part them keep the skin surfaces from fusing together. In the bath is a good place to do this. During sex LOTS of lubrication and don't indulge in too much over activity as friction is a cause of splitting for some Do keep the vulva moisturised at all time after emptying the bladder. Men's trail fluid will burn so do try and keep it off the area as much as possible. If using condoms go for non allergenic not highly scented / flavoured! Bland is good!

    good luck and keep your pecker up and read but don't look at pictures we are all very different and they don't help much

    Have a good time laughter is the best stress manager out so have a wonderful Christmas



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  • Posted

    Whoops I didn't read as I wrote Stress is a major factor. And we can not change our genes! And 'men's trail fluid was altered from menstral fluid!!!
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    • Posted

      That was quite a typo! ;-)

      I agree with everything you've said.  I really must look at the Goldstein video myself.  People have dicussed it so much over the last couple of years that I feel as though I've seen it when I haven't.


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  • Posted

    Hi Danan,

    I'll ad my two cents worth.

    First - be happy you were diagnosed so early in life.  (I was diagnosed while in the 60's and too late though I managed to reverse most of the fusing)

    Second - because you will be treating your condition early on, you will be able to prevent it from worse.  

    Third - become as knowledgeable as you can, to understand what will work against you and what will be beneficial.

    What works for me:

    Next to the smallest amount of Globetasol, still twice a week, I do baking soda baths (1/3 cup)  and baking soda rinses (three pinches in a Perin rinse bottle)  then deb dry and cover with coconut oil. 

    I follow a strict diet - no sugar, no alcohol, no gluten, no dairy, no caffeine. 

    All meals are started from scratch.  (If I stick to this I'm fine)

    Left to tell you: I have gentle intercourse with sufficient lubrication with the help again from coconut oil.  (coconut oil has some extra's build in - anti bacterial, anti fungal) 

    Hope this helps you on your way. 

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  • Posted

    Hi , yes don't panic ! You have to move forward !. Try to not get stressed! As that really does make it worse !. It is a complicated disease !. And needs to be addressed on lots of levels !. I just had bad itching and kept being told I had thrush ! I had , had thrush before and knew it wasn't !. I just had  white patches on my vulva and my bottom really itched !. I used to get the itch at night and after a good scratch it calmed down and I could sleep. But after the diagnosis and me having a good look with a mirror ! I could see the skin damage on the opening of the vagina , although no narrowing occurred .  The skin down there went really white !. But just had my 6 week check up and the Dr was really pleased ! She said all the infection had calmed down and the skin damage was healing and the skin has gone back pink and fleshy looking again !. So really pleased !. I see a nutritionist  and she says , no perfumed things just water to wash in , relaxation , no processed food , no flammantary foods . She told me to start with the healing of the gut so I take rose hip and probiotics , vit b and drink loads of water to flush toxins . This thing seems to be deep in my skin carnt really see anything on the skin . Have you been prescribed a steroid cream ?. Even though I don't advocate it ! If you can tolerate it I think it is a good start to help get Ls into remission !. Because some people go 4 years with no symptoms . At mo Ian using Perrins cream and manuka honey . Only done this for 2 days but have slight burning ! But apparently this is normal . Feel sorry you are so young ! I am 47 . But you will be ok . The secret is reading up and finding what is good for you . Good luck , love Jackie x
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