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Lichen Sclerosus

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Would like to link up with anyone in Ireland who has or thinks they have the symptoms of lichen sclerosus. It is proving next to impossible to find a treatment for lichen sclerosis in Ireland although judging from the postings on this forum many people have been diagnosed with this condition in UK and US.

4 likes, 46 replies

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  • sarah33278
    sarah33278 Guest

    Posted

    Hi,

    LS sufferer from Australia.  We have quite a few LS experts here, there are also many other online LS forums.  I use Diprosone OV Ointment and Vagifem which keeps the condition under control.  Many other women use Clob and other compounded medicines.  First line approach by medical world is with steriods.  Failure to get this disease under control can result in spreading of the disease and high risk for squamous cell carcinoma cancers.  If you can't get enough help in your own country, try other online support - Lichen Sclerosus Yahoo is a great site, there are many.  Also find a specialist who is familiar with LS, DO NOT rely on Gynaecologists, this is a SKIN DISEASE.  Vulva and Vulvodynia Clinics do specialise in this disease, good luck.

  • shazmill
    shazmill Guest

    Posted

    Hi quest. I am from Uk with lichen sclerosis. I was diagnosed two & half years ago. I have various treatments eg. steroid creams, a type of clear tape, antiseptic cream and now I am on six injections every 3 months. 

    take care

    shazmill

    • Morrell1951
      Morrell1951 shazmill

      Posted

      Hi Shazmill,

      These treatments sound really interesting and unfamiliar. Happy you're here. Why not start a new discussion on this? I think you must have clicked on one of the old dormant discussions the site flashes across the top of the page. Below it is our 'pinned' intro info for newbies and then current discussions are below that starting with the most recently active. There are lots of us here any time someone posts.

    • Chrisy
      Chrisy shazmill

      Posted

      What is the clear tape.  I have never heard of that one.
  • shazmill
    shazmill Guest

    Posted

    hi there. I will find out the name for it
    • Chrisy
      Chrisy shazmill

      Posted

      Hi Shazmill, what is it used for? I am imagining all sorts x
    • shazmill
      shazmill Chrisy

      Posted

      hi .it is used to put on infected areas. It contains a steriod
    • Chrisy
      Chrisy shazmill

      Posted

      That is interesting I will talk to my dermatologist on Monday about this.  If you could remember the name I would be interested.
  • margaret7457
    margaret7457 Guest

    Posted

    I was diagnosed 2 years ago in the Coombe Hospital Dublin and was prescribed dermovate cream for the itching and soreness which did help. It flares up every few weeks or so, but my problem is that I need surgery now because sex is impossible due to scarring. Does anyone else have this problem?
    • suedm
      suedm margaret7457

      Posted

      Hi Margaret there are several threads here relating to scarring and the need for a surgical procedure - do have a look at the various discussion threads on the topic Hanny had to have a stretching as her urethra was sealed and now she is back on top - do check out her posts Good luck and don't worry

      sue

  • michelle63057
    michelle63057 Guest

    Posted

    I would just like to make those suffering from Lichen Sclerosus and associated Lichen Planus, to be aware of the high risk associated with it to cancer, in particular vulva cancer.  Please get checked out, my mum had LS/LP for 40 years and has just undergone invasion cancer surgery.  They don't inform you of the risks associated with the above. I am not trying to scare, I just want to highlight to all of you to be checked!
    • Morrell1951
      Morrell1951 michelle63057

      Posted

      Sorry to hear about your mother, Michelle. 60% of women who get vulvar squamous cell cancer had LS first. But that doesn't mean we all have a high risk. It means if LS goes untreated for many years and/or it's a particularly aggressive form of LS (there are several) and you don't catch it at the VIN stage via annual checkups at a colposcopy clinic, then you can get cancer. We all have plenty of control over this. In addition to the drugs, there are lots of things we can do to avoid making flare-ups worse, including avoiding friction-intensive sex until it's cleared up.
  • mimi52218
    mimi52218 Guest

    Posted

    I am in Ireland and recently diagnosed, was obbed off by by GP for months until he sent me to a gyne, at this point I had some fusion.Would love to be able to find our more.
  • Wigster5
    Wigster5 Guest

    Posted

    Hi I have not yet had a diagnosis of LS but Iv been to a gynachogist and he suspects it's early onset as I have much of the symptoms , sore , itchy , inflamed , Irritated , painful sex , but no white patches as of yet , he prescribed dermovate cream which iv been using for almost 4 weeks now , the cream has helped ease but not got rid of the itch and soreness fully , I don't want to stop using it as I'm afraid the full sensations of soreness will come bk , how long can I use the cream without worrying about skin thinning ? I won't get to see a dermatologist for 15 Mths or more as long waiting list so won't have a proper diagnosis for a while so need some advice as its really getting me down , is it normal for the cream to just ease the symptoms or is it supposed to clear an episode until the next one , thanks in advance
    • suedm
      suedm Wigster5

      Posted

      Hi Wigster5

      Do look at the Dr Goldsteins webinar that you will find on the first / home page of this site, it will answer many of your questions. Basically IF you DO have LS then Clobetasol (Dermovate) is fine to use for the rest of your life. It is potent but that is what is needed as the tissue in LS is too thick and needs thinning so that the anti inflammatory agent can do its job. Read thro  some of the threads and you will get a lot of very helpful and kind information for the contributors all of whom have been in your situation in one way or another.

      Do look at your life style, your stress levels in particular and your hormone balance- on the pill / pregnant/ just had a baby /peri menopause/ hysterectomy etc - it can be related to a sudden change in the female hormone levels. It is an auto immune condition and often  one has more than one of these tiresome conditions. Some have found their thyroid levels are low as well. We all seem to agree that stress is THE main cause for a flare up and many have food intolerences that appear to cause a flare up as well. this condition has its high and lows. it DOES improve - often very few symptoms - at other times the discomfort is almost unbearable. We all have very different bodies and each one of us experiences symptoms very individually. sometimes a flare up is the same as another person other times not.

      Try and get your prescription to be changed to ointment - it does not clog so much and is better absorbed. Keep all body fluids off the skin- so moisturise the vulval region with a good not perfumed moisturiser of your choice, many will use coconut oil others honey or aloe vera - check out the threads on here. then put on a barrier to stop urine  and other body fluids for touching the area. loose clothing or go commando in hot weather DO NOT SCRATCH!!! it will get worse - you bruise the tissue and increase the inflammation- a cool flannel may help to calm the itch. But i do urge you to watch the webinar - it will take an hour - have a note pad to hand and above all find ways NOT to STRESS out about Stuff- it never helps and often makes things much worse

      Good luck and Welcome to our LS group, none want to be here but we are glad this forum exists- ask as many questions as you like there is always someone who will respond

      Sue

    • Wigster5
      Wigster5 suedm

      Posted

      Oh thank you so much for your in depth reply , it is such a scary skin disease and I really hope it's not what I have but all symptoms point to this , I was just afraid that if I keep usin the cream twice/day for an indefinite length of time id be doin harm , are you not suppose to give it a break after a few weeks ? I'll look at the webinar asap and get to grips with it more , , my biggest fear is that it will affect my relationship with my husband although he is very understanding and keeps reassuring me it will be ok , I'm just a bit down and scared at the moment , so glad I found this forum , ye will be of great help to me in dealing with this , thank you
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