Just been diagnosed with Lichen Sclerosus.. Please help!!

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Hi! I'm new to this.

I am 36 years old. After years of being treated for thrush, I have been diagnosed with LS. I have seen 2 different gyneas, and 1 GP that specialises in gynea. However after many years of suffering the itchiness and soreness, I went for a fresh opinion on Friday, and was told by another gynea that I've got this skin condition named LS. Until now, I was given Canesten cream, pessaries and oral tablets for the thrush (after many swabs and blood tests). It was driving me insane. The urge to itch constantly. To add to the complication, I had my cervix removed in 2004, I had an episiotomy during the birth to my 1st child in 1998, stiches fell out and episiotomy tore open during the birth to my 2nd child in 2003. So, when my vulva gets itchy it also affects my episiotomy and sometimes around my anal area. I'm now with a new partner and the last thing I want is our sex life to suffer. My gynea has not yet mentioned the option of a vulva biopsy, so not sure whether to ask for one or not just to confirm, although he sounded pretty confident that it was LS. He has prescribed me with Dermovate ointment to use daily for 1 month, every other day for the 2nd month and weekly for the 3rd month. He has also given me Aqueous cream to wash with and to put on the toliet roll for wiping. He then wants me to see a specialist nurse after my 3 months treatment for a follow up. Any help or advice will be greatly appreciated. Thanks.

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  • Posted

    :o hi sorry to see it has taken a long time to get diagnosis but now at least you know what your dealing with the itch is really bad I found out in december by a brillant lady gp that she thought that was what I had I to was referred to a gynae consultant in january who confirmed that it was LS that I had have probably had for quite a while had put off going to see my gp as thought what can they do with an itch but the itch around my anus I kept treating for piles with no help so it was good to get told this was all conected to the LS I was told to use the dernovate but have not wanted to try after reading some of the other ladies reviews my gp gave me fucibet which is an antibiotic cream this has helped stop the itch but when you stop it's back so this seems to be our new life once you are diagnosed :cry:
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  • Posted

    Hi im sorry to here about your diagnosis, Im 27 and have had the condition for 6 years now, i have been using dermovate but unfortunately it no longer is effective and am currently seeing a specialist and gynae. It does effect your sex life but it is something you learn to live with. My partner is very supportive and as long as you explain the problem i have found most people understand. I would ask for it to be confirmed to make sure you are been treated correctly, the biopsy is painful and you will most def have a bad flare up after its been done but at least you know where you stand. I find the best way to deal with it is to try and keep the area as clean and dry as possible. Hope this helps x
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  • Posted

    :D Hi there, try paladin - it's a nappy rash cream but is also used for l.s. I bought lmine on ebay and it arrived a day later. it is fantastic, relieves the itch and the soreness, also once confirmed if sex is painful ask for some anisthetic gel to rub on just before -as long as only put on painful part doesnot interfere with any enjoyment - enhances it as you know it's not going to hurt -- until afterwards that is!!! But that's when the dermovate and paladin can help. hope you find this useful. It is a pain in the butt!!!!

    :D

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  • Posted

    Hi all. Thanks very much for your useful replies. Will give the dermovate a chance to work first, then after the 3 months is up when I'm supposed to be seen by a specialist nurse and its still not right, then I'll enquire about the biopsy. Maybe the gynea is very confident in the diagnosis that he wont send me for one. I've read on the other entries on here from other sufferers and most mention about the white spots and patches. As far as I can see, I dont see any of those down there, unless I'm missing them?? I'm still taking tablets for the odd thrush discharge called Candiclear (from health shops), as I'm sure that the thrush makes it more itchy and red. I will bear Paladin in mind, especially if Dermovate fails to work. Saying that, I have only taken Dermovate since last Friday, so thats only 6 nights so far. Watch this space.
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  • Posted

    Hi all, Just found this discussion group about LS, I am a 47 year old man and was diagnossed with LS about 2 years ago, I have been suffering for since I was 18 with passing urine and narrowing with the end of my penis. I have had countless dialations of my urethra and strictures removed with kwy hole surgery, my LS just came on 3 years ago with splitting around the underside of my penis, I was refured to a dermatologist who was very blarse he just said \"Oh thats LS get your doctor to treat it with topical creams\" well heres my point GP's havent got a clue how to treat LS, every person is different in the treatment of this condition, my GP tried every cream he could think of with nothing working for me, steroid creams just made the skin even thinnner and easier to split during sex or even just moving my position whist sitting ending up with infection aswell as splits and a huge amount of pain, well my wife works at a doctors surgery in admin and desided to have a look around the different mentor sites used by GP and alike, she downloaded stuff from every where she could incuding the british medical council. It seems that their recommendation to dermatologists in the UK is that good results for LS are creams or ointments containing a chemical called [b:cdc3db2ce5]Betamethasone[/b:cdc3db2ce5] It turned out that in 2006 my doctor had prescribed a cream called [b:cdc3db2ce5]Fucibet[/b:cdc3db2ce5] which contained this ingedient, at the time I was using [b:cdc3db2ce5]Protopic ointment[/b:cdc3db2ce5] a replacement for steroid creams as they were just thinng my skin. The Fucibet was out of date but as I were in a lot of pain I decided to try it for a week as I had an appointment to see my GP then. The results were remarkable, my skin was actually starting to repair and not itch, when I had my visit to the doctor I explained this and he said the protopic was stronger than Fucibet and should have worked better, but it didn't. Mt further point is this, when trying any treatment or couse give it a good chance to do its stuff on your skin, don't just because you don't see any results for a week, it may take longer to work, if you don't do this you will get the wrong impression of a cream which may be right for you.

    I hope this helps someone out there, good luck to all posters.

    Dean

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  • Posted

    Im a Paladin user after reading up on other peoples use of it thought I would try the cream too....It works absolutely great. I was reading about its use on another message board in the states and then here in this country I found it firstly on ebay but now have found a site called **** which is so very helpful too...It a little expensive but I dont care as it has breathed new life into my everyday life. I am glad to see a man on here and was very interested in the male side of this illness. Dean, I wish you well and I hope that more men come forward and talk on here. I read up on protopic treatment and was not convinced by the explanations regarding long term side effects...I already have a steroid and it keeps the real bad flareups at bay but the skin gets so very red and thin I wonder how long I can keep going ... We are all in the same boat and should be pulling together. The medics need to come out and talk to us on our boards and tell us outwardly how the research is going and whether there is any chance of a way out of this hell ..Sue

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