Early symptoms ?

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Hi ladies I havnt been diagnosed with LS but am waiting to see a dermatologist , the gyne suspects early onset ls , what are the early signs ? I don't have any white patches that I can see or fusing or anything like that , my symptoms are soreness of the vulva and some times a burny quality and slight itchiness , and also my clitorous area feels irritating when my clothes touch off it . when I first had these symptoms it felt more like I needed to pee which I thought I did and so ended up wit an irritable bladder because I was going to the toilet all the time to get rid of the sensation but now I know it's more the soreness of the vulva area that gives me the sensation to pee , I'm scared of it getting worse , I'm using the dermovate cream and this definately eases the soreness but it hasn't fully gone so I'm using twice a week to keep at bay , how did ye get so bad with the fusing and closing up , had ye early symptoms before all of the White patches and fusing , iv had all the usual bacteria and fungus tests and all is clear so this is why it's pointing to ls , please hope I don't have it as it really scares me to think it will get worse , at the minute it's managable and I can live with the soreness once it doesn't get worse , will it ger worse over many yrs despite using the dermovate ?

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  • Posted

    My early signs were very similar to those of thrush but without the discharge - itching turning to pain, just like a paper cut.  Ended up scratching a lot but after a couple of weeks of this I checked myself out with a mirror and was horrified to see that my inner labia had changed shape and the whole area was discoloured.   The white patches came later.  Also, like you, I felt an urgency to pee.  It will get worse if left untreated.  It took me about 2 months before a locum GP recognised the symptoms and referred me to a gynaecologist.  By then I had developed additional patches on my back (which is quite rare so don't worry).  If it is LS it needs dealing with asap.
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    • Posted

      Thanks Kathryn , I never knew about LS until I got this , it feels quiet lonely as its hard to talk to anyone about it , why do we get such awful things , I feel so sorry that so many women have this very bad , at the minute I think iv caught it early , I hope it doesn't progress x
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  • Posted

    I had itching for many years. Eventually the itching became severe... so itchy I could have cried and probably did! Just about 2 months ago I got a white patch of skin which has turned pink since I am on steroid cream (but still have damaged skin there).

    Since treatment I have an irritated clitoris at times. Last appointment Gyn told me not to put steroid directly on it just on the hood. (I think that possibly my clitoris didn't have LS on it, just the hood and that may be why it got irritated from steroid).

    Occasionally I have burning...Stinging.

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    • Posted

      Thanks sandra I wondered was it ok to put steroid on clitorous , my gp said it was !! Oh I may be more careful where I apply the cream , thanks for all advice , it's great to be able to ask advice on here , it helps with dealing with the worry x
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  • Posted

    Oh yes, during the time I had much clitoral irritation I needed to pee frequently. Was very annoying. In the past I have had a period of my life I also had to urinate very frequently. I eventually decided that time it was a response to my anxiety in a high stress period of my life.
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  • Posted

    Can I ask your age..this all can be a symptom of vaginal vulva atrophy
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    • Posted

      Hi lee I'm only 39 so I don't know if I'd have atrophy at this age , I never even heard atrophy until all this started and I read up about LS , still waiting to see a specialist
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    • Posted

      I dont know whats going on with me yet either..atrophy,LS or both.Very unnerveing.I have so much anxiety from this.I hope you feel better soon and get some answers.
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    • Posted

      Anxiety is not the word I recently went on anxiety tabs as I was in an awful state over this and had myself convinced I would not be able to live with the whole thing and the steroid cream seemed to make it all worse , Iv recently stopped the steroid as of my doctors orders and my skin has calmed so much , iv had more itching since I stopped d steroid though ( did not suffer with itching much before I started d steroid ) but the last few days I almost feel like normal again so I dont know if the steroid reacted with my skin causing it all to get worse , so I'm totally at a loss now as to what il do if it gets worse again and if it is ls and the steroid makes it worse what will I do then ? Anxiety central here 😂
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  • Posted

    I would also like to know if it will get worse... Or what causes it to or prevents it from getting worse, and what is considered remission... So confused. And how fast does it progress...
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    • Posted

      Tons of info on net.Ive read treatment is sucessful in 70 percent of cases..i believe thats useing the steroid cream,there are some other options for treatment...im still learning.I am obsessed with thinking about it and i dont even know I have it yet for sure..some people have mild symptoms and sometimes only a small area of skin is involved.I think the main thing is to stay on top of things so a person gets the right treatment before it has progressed too far.
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    • Posted

      Me too maeflower , it seems like such a confusing condition , flares , no flares , food intolerances , outside factors , sex , coconut oil , washing between toilets breaks , sea salt baths , baking soda baths , !!!! I don't know what to do iv tried them all and don't Know wat helps and doesn't help , I seem to be calm at the min but iv stopped the steroid totally as I feel it may have made things worse so as for now I'm gonna try wait to see a specialist and go from there ! When using the steroid my skin was sore one day , kind of ok the next , itchy the next then red blotchy patches like a skin irritation , I am nearly gone mad with this trying to figure it out so for now I'm using instillagel for itch or burning if I have it and hoping for the best
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    • Posted

      Me too lee , my husband keeps saying stop reading about this and obsessing as you may not have it but I don't know what else it can be ESP when the gyne said he thinks it's early onset ls , why would he put the word ls into my mind if it could be some thing else ? Anyway I'm living in hope it's something else but trying to prepare myself for the worst also !! My husband is in denial and keeps saying I don't have it , hope he's right !! Good luck I hope you don't have it either x
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    • Posted

      Have you been to a dermatologist yet?They also treat this area of the body.My dermatologist said it didnt fit the pattern and not LS yet ,then i go to gynocoligist and she thinks I might have it,but if so mild,she didnt even sudgest a biopsy That is the only way to confirm it.So you can see why Im confused.My husbabd listens but doesnt think much of it.I worry constantly I did find a wonderful article the other day that was very hopeful on the successful treatment.Lots of people live very normal lives with it and some even go into remission.
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    • Posted

      No there is a 15 mth waiting list for dermatholagist and 7 mth with a private vulvar dermatholagist so my gp is trying to refer me some where else , although in the last week iv totally turned a corner and don't feel so burny or itchy or sore and if they look at me now they'll think I'm making the whole thing up as I look normal down below , I'm off steroid and feel a lot better , oh I wonder if you catch it early can it be kept like that , I'm worried it may progress , I can just about deal with it if it doesn't get any worse
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    • Posted

      Hi,wow you have to wait that long?Im in the US aso had a 2 month wait,being a new patient for dermatologist..that was long enough.Regular dermatologist know about the condition also,it doesnt have to be a vulvar dermatologist.My doc said sometimes lichen also is only limited to a small area and doesnt spread..I dont know..the vaginal atrophy causes alot of the same skin symptons.And then theres the bladder issues from the atrophy. Glad you are feeling so much better.Were you using the strong hydrocortisone cream?
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    • Posted

      Yes it's called dermovate here in Ireland , it seemed to help at the start but then the whole thing flared worse and I could not get it to a stage where it was calm until I stopped the ointment , my skin isn't as sore now but I get an I tense itch onn and off so I don't know what's goin onn , it would drive you crazy trying to figure it out
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    • Posted

      Imsorry i asked your age again.i looked back and asked before..if you are useing a strong cortisone cream without a diagnosis,then have a biopsy,if you have lechins it could show a false negative.I think youd have to go off the cortisone awhile to have it confirmed for sure.I hope neither of us has it.
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