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Lichen sclerosus diagnosed 6 months ago

Posted , 19 users are following.

lorraine61491
lorraine61491

Still using dermovate steroid cream twice a day, soreness is getting worst, haven't been able to wear underwear for a week!. Feeling so depressed, feel so alone .

Can anyone give me advice?

0 likes, 80 replies

80 Replies

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  • joanne55511
    joanne55511 lorraine61491

    Posted

    Hi Lorraine, i really feel for you.. I felt exactly the same as you in the beginning.. It does take some time for the dermavate to work but it will do.. are you using anything between the steroid creams eg. Coconut oil?. I use Perrins complete cream also many times a day when im uncomfortable as it cools the area and moisturises. You are correct in going without underwear when possible. I always try to around the house, in bed and when wearing a skirt. Also i wash this area with epiderm twice a day, no harsh or harmful ingredients in it.I have been back to my specialist numerous times as I was convinced the dermovate wasn't working but she told me to persevere. I was also concerned that I was using it too much (twice a day) the same as yourself but she assured me I wasn't. I didn't feel as though I was getting any support from the professionals and the only advice and info I got was on these forums. I have only really settled into a routine that works for me in the last 6 months due to my own research and have actually stopped thinking about it every day. ( I've had this for 18 months. ). I have had a bit of a flare up over Christmas but I know that's down to a bad diet and far too much sugar.. Please don't feel alone as there are more people with this than we realise and people on here are always ready to listen or offer advice. I hope I have given you some helpful tips.. if i think of anything else that will help i will get back to you. Let me know how you get on - love Jo x
  • Guppy007
    Guppy007 lorraine61491

    Posted

    For some women, diet is the key, the answer.  The main culprit is sugar.  If you can cut out all sugars for a few weeks I am sure you will see a difference, because LS LOVES sugar, I cant state that strongly enough, too many women have reported the same for it to be ignored.  

    Once you reduce that dramatically I am almost certain you will see a difference. 

  • lee12629
    lee12629 lorraine61491

    Posted

    I have vaginal atrophy which can caus a burning sensation to the vulva..i also have an unconfirmed mild case of LS,can LS cause a burning sensation or only soreness and itching? ?. Thanks.
  • kathleen65757
    kathleen65757 lorraine61491

    Posted

    You are going to get used to managing this so hang in there! Keep up your ointment. That is what will bring it under control. Sometimes, a change in ointment helps. I use Advantan fatty ointment. I live in Australia and attend a special clinic at Mercy hospital in Melbourne. I hope you have good care with people who specialise in this.

    Use no soap on the area. Just once a day spray rinse as area needs to remain dry. It does not require any type of cleanser.

    Through the years mine has changed and yours will too and become milder especially if your ointment is effective.

    I do not adhere to any special diet or other applications apart from Dermeze sensitive as a moisturiser when I feel I need it but the ointment is what controls it.

    I find a good balanced diet is fine and there does not seem to be a connection for me. I am a diabetic so I avoid sugar anyway! 

    I have other conditions that cause me more concern so it will come into perspective soon. 

    You will get through this and I wish you all the best and peace of mind.

     

  • claire12259
    claire12259 lorraine61491

    Posted

    Hi Lorraine  

    try cutting sugar dairy and gluten from your diet. It worked for me. Good luck xxx

     

    • claire12259
      claire12259 lorraine61491

      Posted

      Seems daunting to start with but you get used to it!! I do cheat abit now and then and its fine. I also take MSM and celedrin. Mine has gone into remission thank god. Hope yours does too xx
    • claire12259
      claire12259

      Posted

      P.S you will probably get much more help from here than you will do from any doctor/specialist as a lot of them don't have a clue how to get rid/control LS. It's all about trial and error and finding what works for you xx
    • lee12629
      lee12629 claire12259

      Posted

      Sugar is giving me a flare of vulva burning and irritation. Too much sugar at Christmas.
  • hanny32508
    hanny32508 lorraine61491

    Posted

    The first while is the hardest. The messages via doctors often leave you out in the cold.  The steroid cream or ointment (there is a difference)  is not the only answer to the problem plus it takes a while before you notice a real difference. And it seems that it differs from person to person.

    Taking baking soda baths (1/3 a cup) every other day and baking soda rinses (three pinches in a Perin bottle)  after every bathroom visit, then applying coconut oil seem to do the trick for me.  But perhaps you will have to wait a while to do the coconut oil while you are applying the steroid twice a day.  At present I apply the smallest amount once sometimes twice a week.  

    Not to forget the diet - one of the items to be avoided is definately sugar. For me also: leaving out dairy (cheese for sure triggers my LS) (limited yoghurt)  (at present a tablespoon of Kefir in my breakfast works better)  Next to leaving out alcohol and caffeine.  And not to forget - gluten free.

    Home cooked meals are a must to know what's in the food.  And to be strict with this regime is also important.  (learned that the hard way)  

    No it is not easy to live with LS.  But gradually you will be able to put a handle on things.  

    Suggestion:  Ask your doctor about ointment instead of cream.  

     

  • kathleen65757
    kathleen65757 lorraine61491

    Posted

    Who is looking after you? Remember we are not doctors so do not do anything without talking to your specialist. 

    What works for one person may not work for you.

    Because I have experts looking after me I ignore what others say because I know I am well looked after.

    You need to get back to your specialist!

     

    • Guppy007
      Guppy007 kathleen65757

      Posted

       

      Kathleen, I think it is foolhardy to suggest that women should ignore what other women suggest on this site, women with LS. Otherwise, we are then just placing ourselves in the hands of doctors, often men, many of whom don't have a clue., and if  I remember rightly, your team of male doctors still dont  believe there is a dietary connection to LS,  so that in itself would cause me concern.  

    • kathleen65757
      kathleen65757 Guppy007

      Posted

      I have no male doctors, never have had!

      This hospital is a leading women's hospital!

      We are not doctors. We can say what we do but must not affect others treatments.

      I merely wished to state that we cannot replace expert and specialist advice and management.

      I was trying to urge Lorraine to seek best advice from experts as I thought we might be saying too much and confuse her!

      Choose to ignore me and what I do!

      I expressed a hope that she had best help with this!

       

    • Guppy007
      Guppy007 kathleen65757

      Posted

      I  remember your post Kathleen.  I have a memory like an elephant, and I specifically remember that you said "my doctors see no connection between LS and diet"  and I was shocked.    My point is that whether they are male or female how can that possibly be? Even Dr Goldstein mentions a Gluten connection, is he wrong?  

      We are all treading new ground here, and I feel like the doctors are often letting us down, with laziness and lack of care,  and so we sometimes have to make discoveries and decisions for ourselves. 

       

    • kathleen65757
      kathleen65757 Guppy007

      Posted

      None of my doctors are lazy or careless! They are amazing! I guess I am lucky. My women doctors especially said there were no reliable studies been undertaken in regard to all the extras lots are doing. I made a point of asking!

      Diet has no relevance to my management of LS. Others may feel it does and that is fine. Sugar is not usually an issue because I do not have it regularly but when I do it does not affect my LS. The only thing that affects it is if I miss my ointment one or two nights! I apply every night as a rule!

      People can do what they like I don't care but there have been no studies that  support any of it.

      Personally what I believe is that if something does not agree with you then do not have. I cannot have crabs and prawns so I don't but foods do not seem to connect to my LS so I leave that alone!

      It is up to individual people what they do not for me to tell them what to do or try!

      I wish for everyone to be able to find what I have and that is excellent care.

    • lynne1945
      lynne1945 kathleen65757

      Posted

      Kathleen, surely this is a support group, yes? I have to wonder why you are here if only to cry down every suggestion these amazing women are giving. That's not supportive.  I know many here have helped me and I have improved my LP since I cut out sugars and dairy and gluten along with a few other food groups. Not to mention the washes and lotions and baths.

      Of course we are all intelligent enough to follow a regime that works for us and I'm sure we all agree medicine does have a part to play. But there are many naturopathic  and soothing remedies for symptoms and many foods which exacerbates pain and burning and many suggestions are worth a go. They are only suggestions.

      You are very fortunate to have your condition under control. For all that, you seem quite angry and your many exclamation points in your posts are quite aggressive. 

      Coping with stress is one of the best pieces of advice I had on here. (And the hardest to manage I must say.)

      Happy and healthy New Year.

    • kathleen65757
      kathleen65757 lynne1945

      Posted

      Grammar is not aggressive! You are personally attacking me. You are crying me down. You do not know me or anything about me! 
    • Guppy007
      Guppy007 kathleen65757

      Posted

      Let's not fall out, we are all in the same boat, trying our best to maintain a level of comfort with a horrible condition that most people don't even know exists.

      Wishing everyone a Happy New Year ! 

       

    • petalangel
      petalangel Guppy007

      Posted

      Well said, I couldn't agree more.

      Happy New Year to you!biggrin

    • Okpeeps
      Okpeeps Guppy007

      Posted

      Hi Guppy007... Felt I had to reply to this thread. Firstly I have to say my female doctor was just marvellous two days ago. However she actually said that it was only a few years ago she was asked in to a fellow doctors office to examine an 82 year old woman. She ( another female doctor) wanted her opinion on what she thought this 82 year old lady was suffering from....... She hadn't seen anything like it before???? She was a young doctor. My doctor explained that in her opinion a lot of women were misdiagnosed .... Now that was only a few years ago. I agree by all means seek medical advice but with the limited time offered at your appointment this forum is an absolute lifeline...... Thank God I found it xx
    • Morrell1951
      Morrell1951 Okpeeps

      Posted

      I've clearly had LS since I was 22, if not earlier. I've had my legs in the stirrups over the years for pap smears, herpes, conizations, many yeast infections, boils, childbirths, etc., etc. I saw dermatologists for psoriasis for decades, but never mentioned my undercarriage problems. Changed doctors enough times. But my LS diagnosis came two years ago at age 62. I had to have an erupted abscess right over my clitoris to go to emerg and ask to have it looked at.

      My luck has turned, though. The gynaecologist the emerg doc sent me to has 1000 LS patients. Phew, better late than never.

    • lee12629
      lee12629 Morrell1951

      Posted

      Seems like there are so many with LS and to think I never heard of it til this year.
    • Morrell1951
      Morrell1951 lee12629

      Posted

      I take some responsibility. Some years before, maybe 2007, I looked up photos because I saw the white patch. I got a name, saw it was chronic, and just decided, well it's a thing we get after meopause. I ignored it other that telling lovers I might be tight and using lubricant. I'm afraid that's exactly what a lot of doctors think.
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