Not officially diagnosed.......

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Hi, first time I've posted on here, but everyone looks so friendly thought I'd give it a go smile I went to the doctors about 3weeks ago with two pretty small 'white' areas on my labia minora or is it the majora! I always forget. I had also got a tiny fissure or lesion i think they call it in this area that had reoccured about 3 times over the last few months. I'd no idea what it could be and was shocked when the doctor said she thought it could be LS. I am now awaiting two consultant appointments one for Gynae next week and one for Urology for this Friday. The Urology was made because of frequent UTI infections, which from reading on here may well be related to the suspected LS. The Doctor told me to use hydrocortisone steroid cream 1% to ease with the fissure. The pharmacy was a problem because i told them what i was using this cream for (big mistake) as they said it wasnt licensed for 'that area'! Anyway, to cut a long story short, I was given the cream and have used it every day (just a pea sized) amount. The Doctor was a bit sketchy on how long and often to used the cream, first it was implied just for a day or two until the fissure healed, then it was suggested once a day (at nigh time) for 4 weeks then review this at my consultant appointment. I have done the latter upto now, although the lesion did heal in a matter of a day. Do you think I shoud be using it everyday? I have no itching and have never had any more than this one lesion which is tiny. From the info on here, I decided to start washing with Aqueous cream which seemed a good move. I dont think I require the barrier cream, as have no itching or soreness at all. I didnt know whether to post on here at first as not been fully diagnosed, but the doctor did seem pretty sure. Also, I suppose you are sort of admitting that you have LS by posting on here. Its a funny problem to deal with mentally I feel, do others find that? I have not even explained it to my husband yet, even though I have known for almost 4 weeks. We havnt been hitting it off lately and just couldnt bring myself to start talking about it, so its lovely to be able to post on here about it. Sorry if this post is a bit long, im not good at condensing smile. This site was a life saver when I came back from the doctors, so much information with such kind and honest experiences, thank you :wink:

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  • Posted

    Hi Saffy

    Welcome to our world..........hahaha

    I have been diagnosed about 9 months and have found everyone on here really helpful. I was distraught at the begining but now, being in contact with other sufferers, don't feel so isolated. I would have been a wreck without this contact. So don't worry..........ask anything......I have.......and have always got a very friendly reply.

    Good luck

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  • Posted

    Hi Saffy....The only thing you can do untill your appointment is to keep a beady eye on things and if the leasion starts to be sore again then use a little cream but i dont know about hydrocortisone,it seems a bit strong for your genital area...The usual one is dermovate ,or betnovate which is a little milder.. Definately leave off soap there and wash with aqueaus instead.. Read all the infor you can on here and on **** then you will have info that you can relate to when you go for appointments..Ask as much as you can. That lets them know you have at least read up on things... Keep us posted...Mal x

    [color=green:1b123a6ddf][size=9:1b123a6ddf][b:1b123a6ddf][i:1b123a6ddf](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:1b123a6ddf][/b:1b123a6ddf][/size:1b123a6ddf][/color:1b123a6ddf]

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  • Posted

    Thanks very much ladygaga and Mal,much appreciated:-) regardingo the hydrocortisone steroid cream it is only 1 % ,my doctor said they will probably give me stronger at the hospital 2% so not to be worried bout using it. Are the makes you mentioned Mal not 1% in strength? I don't think I'll use it as often,as got no probs at the mo. I thought if I kept up with using it that it would diminish the small white areas that I have,is this not the case? Once they ate white they are always white? It's such a hard complaint to discuss with people openly.My doctor said she had had lots of ladies in with LS sad thanks again x
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  • Posted

    Hi Saffy...It was just that hydrocortisone is not a normal steroid for genitals, being such a sensitive area........some steroid applications are 0.025%, upwards ... (I have (Synalar0.025%) ...and as I said the norm for LS is Dermovate(clobetasol) you can look up about it on the search engine, just type in the names....( Betnovate I believe is the milder) The white patches, which is active Lichen, can disappear with your steroid but can so easily rear again ,even someplace else, you just have to be vigilant....The white is thickening the skin so always needs attention...The steroid is your only treatment so little and often whilst you are flaring and when in doubt whilst you have white, a little once a day till your appointment should be ok, but a very little amount directed to the spots you have the white only....There are more ladies and men out there than we realise...I have a message board and the amount of hits that actually dont reply or talk on there are in amazing numbers. Mal x
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  • Posted

    Thank you marilyn, will make a note of those cream makes and will be armed with the info for next weeks visit! Got my urology appt tommorrow and Gynae next Wednesday, I've only had to wait for about 4wks so not too bad.I've read comments where people say its a 'cleft stick' situation really, you take the steroid to help LS, but then steroid thins the skin which is the problem with LS in the first place :cry: I guess its just finding a balance for your personal circumstances. Its a difficult place to be precise when actually applying the cream, other than standing with a mirror everytime! Is there any evidence of LS getting worse at the time of a period?

    I've heard that the papilloma virus can be a trigger for LS, i had a papilloma in the vulva region about 15 years ago, it was a small lump with the doctor just removed with a some kind of surgical string! Dont remember alot about it, but do recall him referring to it as a papilloma and that is was not a problem. I wonder if that has come back to haunt me :roll: Sorry I do seem to be going on........ first time I've talked about it since I visited the Doctor 4weeks ago. Thanks for listening :wink:

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  • Posted

    Hi Saffy....Trauma sites is one of the causes LS to start so I am taken to understand, So maybe after your papilloma it could have started so not the papilloma its self....Changes in hormones can disrupt things as can stress and the more stressed you get the worse you can be with LS. Majorly its an auto-immune condition where your body attacks itself when it thinks something is wrong when in actual fact there isnt anything wrong......Check the list of auto-immune conditions and see if any are in you or your family.. I have a list on **** message board and some links to other sites too that may be might help you to be forwarned before you go. Take care Mal xx

    [color=red:7570882fa8][size=9:7570882fa8][b:7570882fa8][i:7570882fa8](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:7570882fa8][/b:7570882fa8][/size:7570882fa8][/color:7570882fa8]

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  • Posted

    Thanks Mal, I have been onto your comfy.skin site and registered there as such alot of useful information there. But cannot see any mention of the auto immune reference you advised me to look for, apologies if it is glaringly obvious! :lol:
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  • Posted

    I wll bring the info forward saffy.its probably on the second page of threads..... xMal
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