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Have just been diagnosed with Lichen Sclerosus and think I am getting bad advice from Gynacologist

Posted , 17 users are following.

mary10218
mary10218

On initial diagnosis by gynacologist I was told I had had the condition for a long time (a year maybe) -to use a sitz bath, steroid cream and hormone cream for one week. The itch disappeared. I was then told to use only hormone cream twice daily and to return in 4 months. I felt fine although I feel half my vulva has disappeared and I am finding it very distressing. However, I feel the itch is returning after 1 day and I am concerned as everything I read says hormone cream has no effect on lichen and that the treatment regime should be steroid cream for 3 months daily then twice weekly. I am living in spain so not any choice for medical care and it is very expensive which I can't afford. I am 59. Desparately need some advice. Feeling very overwhelmed.

0 likes, 39 replies

39 Replies

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  • Holiday_girl
    Holiday_girl mary10218

    Posted

    Hi Mary sorry to hear you have been diagnosed with LS but when I was told I was relieved as I had suffered this terrible itching for 12 years thinking not knowing what it was just put it down to old age I am 70 now so was in my late 50s. I was given Dermovate and told to use pea size amount every night for 1 week, then every other night for 2nd week and twice in the 3rd week before going back to see consultant. I also use Hydromol  to wash down below then spread it on but make sure it's the ointment not the cream as it is a good barrier cream against urine . I have been itch free since January. Make sure you don't have any thyroid problems as was surprised to find I had an under active thyroid for which I now take tablets. It's just lovely to sit without feeling I am sitting on a patch of nettles. Good luck you find what's right for you.
  • nicola62304
    nicola62304 mary10218

    Posted

    Hi i have just been diagnosed as well, i have to wait till my biopsy heals before i start looking at creams but yes i am going to try coconut oil first.My doctor said use pawpaw cream.Some of the creams that have been suggested to use have side effects of thinning the skin.I wish there was a magic cure.Take care.Nicola
  • kathleen65757
    kathleen65757 mary10218

    Posted

    Mary, I do not believe diet has anything to do with LS. However, stress does! In Melbourne, Australia, we have a special clinic operated by a dermatologist and a a gynaecologist. Auto immune is probably correct but not proven. I have Crohns and diabetes so that supports the auto immune theory. I use Advantan fatty ointment and Dermeze for moisturising. I know your pain and also have atrophy which is very upsetting. I have a Crohns flare at the moment which seems to have affected my LS as well. I need more than a pea sized bit of ointment as it goes from the front to the back which is quite a large area. Hope you are able to deal with this condition and find good support.
    • marey
      marey kathleen65757

      Posted

      Dear Kathleen

      Have you tried bone broth and kefir...together with pre and probiotics...to address your chrohns....together with a gluten free diet. Am very concerned to hear of your condition. That's very serious. But you are so kind and caring I would like to reciprocate x

  • hanny32508
    hanny32508 mary10218

    Posted

    Hi all,

    The short answer is that a cure has yet to be found/discovered.  So who can say: You are right or you are wrong?  We're trying to find a solution that may or may not work for all.  What is soothing for one, may not be soothing for another.  I have had times that I had to try all tried methods, to find that 'this time' Emy oil would bring the flair-up down.  This far I have tried everything and anything.  Sometimes one thing works, another time another.  As I said before: 'My' LS likes variety.  Can I explain this?  Not in the least.  To start out with a steroid cream is not too bad a thing, since it will eventually make the itching go down, which then brings much relief. ( Again, this is only my experience. )  The funny thing with this LS is that it reacts differently all the time.  One day you think you have it downpad, the next you get 'rewarded' with a flair-up.  One thing is for sure: Never a dull moment.

    Good luck and keep trying, even if it doesn't seem to make sense.  However, make sure it is not doing any serious harm. 

    Hanny. 

  • mary10218
    mary10218

    Posted

    I cannot express my thanks enough to everyone who has answered my post. The advice from you all has helped me to see that this disease is more complicated than I first thought and that there is a lot for me to consider. I really appreciate that virtually everyone has offered balanced advice and it is very clear that finding my own solution may be a matter of trial and error. But most importantly I don't feel so overwhelmed and alone anymore. More than anything I appreciate the good wishes and support from you all.

    I have suffered from allergies and eczema and thyroid issues and diabetes run in the family.

    I think I will try the steroid cream for another week and then reduce it rather than stop dead. I will continue to use the hrt. I will also need to find a moisturiser to try, maybe coconut oil. My steroid cream is Menaderm Simple, not sure how strong this is. I will try to look at diet and lifestyle but I do struggle with sugar cravings, any advice on how to control this would be very welcome lol. My gynocologist told me it is not possible to improve the colour of the skin. Do you think this is true? Also can anyone refer me to any other sources of information explaining about this condition in more detail and is this worth pursuing.

    Again thanks everone and my best wishes to you all. xx

    • suedm
      suedm mary10218

      Posted

      Look at wikipedia - when was LS first identified you may find more information there. Also  google academic - may give more clinical information - I havent tried this site for a couple of years and it does use very technical language. As to sugar cravings....why not reduce the amount you have every day by a small amount - so that you hardly notice the smaller amount - that way you may find our body doesnt realise you are depriving it of the stuff. Personally I would not go down the route of sweetners - I hope that helps

      Good lucK and dont worry you will find the right way for you in time.

      Sex is possible with lots of lubricants and a gentle understanding partner, unless the constriction of the vulva is a problem. There is a Lichen support group - again look up on the net for your local group

      All the best

      Sue

    • marey
      marey mary10218

      Posted

      please would you explain what you mean by the skin clour issue you have?
    • carol70005
      carol70005 mary10218

      Posted

      Hi i had skin tone issues where in places it looked bruised in fact that was what prompted me to go to the doctors because i had no itching but since using the steroid the colour is looking fine but oh boy did it itch it has now settled and my doctor has advised i use the cream once a fortnight t maintain it in colour and to keep any more changes at bay x
    • mary10218
      mary10218 marey

      Posted

      Hi Marey, yes the skin of my vulva is whitish. It looks like it is bloodless. I have read people saying that using the steroids has caused the colour to return but my gyno was adamant nothing would help to improve the changes that had already occured. I am finding it very difficult to find information about this condition and the Support group appears to be gone although the website is still there. Mary
    • marey
      marey mary10218

      Posted

      Honestly Mary this can be reversed. No one has the right to say it can't be....your gynae will be trying her best but this, happily is beyond her experience. You can work with her in your recovery and she will be as delighted as you.

      My friend in Canada, named Ginny, and various others whom she advised have all been cured. There is no confusion or mix up. She had even had a biopsy initially to confirm the original diagnosis...which I don't recommend as it is no help.

      It is a multi-layered process and takes huge effort. It also depends on your starting point as to the best strategy. Her book is coming out soon in which she reveals the botanicals she used....but a de-toxing process was needed first as well as diet and supplementation.

      Its not merely diet alone nor any one single focus.  

      Don't worry about trying to give up sugar in the first instance. That's just too stressful. Why not start with quitting grains? The purpose of this is to heal your gut which has become permeable and is allowing large proteins amd toxins through which are causing this inflammation in your body.

      The breakdown of grains causes a far higher rush of sugars into the blood than pure sugar does. This is surprising I know! Will you try giving up bread, pasta, pizza ....all that junk with flour in...including sauces where gluten is often hidden and see how much better you feel? Will you let me know in a few days how you are? Your own research will also be what is going to motivate you...but then linking back with us is where you can find support and solace...cos we care!   

      Love marey xxxxxxxxxxxxxxx

  • janette25
    janette25 mary10218

    Posted

    I use a hormone cream twice weekly inserting it on an applicator and I also take some omega 7 capsules with buckthorn oil in them 

    I use  Double base Gel for washing vagina and final wipes after  urinating 

    the dermovate I use the same as all the other ladies 

    I never wear underwear or tights 

    all this information was given to me by my gyneocologist attending me for a collapsed bladder 

    I have found all her suggestions work I have been ver lucky and not had any recurrence 

    I am 76 years of age 

    don't have sex as I am widow 

    but have been asked to share someone's life with them 

    but I think about LS and wonder  because everyone say sex is painful 

    but I,think it part of a relationship!

    i never have a bath either as the gyne lady says too much water not good 

    but I think if I did have a flare up I would use sudocream 

    hope some of this is helpful to you 

    • suedm
      suedm janette25

      Posted

      Hi Janette. Go ahead and share someones life, if that is in your heart to do so- explain the situation to them and no, sex need not be painful, lots of lubricant, a gentle touch  understanding and relax and enjoy it - you use an applicator without difficulty........However if you have a flare up any friction will be horrid - internally the LS ls is not evident

      Good luck

      Sue

    • janette25
      janette25 suedm

      Posted

      Unfortunately I have to also wear a pessary for a collapsed bladder

      so sex is probably out of the question 

      and by the way an applicator is thinner and smaller !

      but thank you for your very kind words 

      JanetteJanette

    • mary10218
      mary10218 janette25

      Posted

      Hi Janette,

      Thought I would let you know of my experience as it might help. Prior to being diagnosed intercourse was painful even with lots of lubricant. I was told by gyno that this was because I had a patch of thinned skin due to LS just at the entrnace to my vagina. Now 2 weeks after being diagnosed I had intercourse and it was absolutely fine.I have been using the hormone cream and steroid cream. I was very worried that sex would be impossible or horrendous so am delighted that for the moment all is well. I am not sure what the impact of your bladder condition is but as far as the LS is concerned you may well be able to have enjoyable intercourse in your new relationship. Best wishes mary

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