Lichens

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Can anyone tell me please if the coconut oil helps with the itch & can you use it during a break out,I was diagNosed several years ago & use dermovate each day when it is bad,& canestan in between when I went for my last check up I saw the registra who thought I needed to see a dermatologist due to the fact dermovate wasn't controlling it as it should I then received a letter from my consultant booking me in to her next available vulectomy clinic on the 18 th June,it looks like she wants to do another biopsy but I am worried she will do this in clinc,the last 1 had was withy an epidural & was very sore afterwards so I am not keen on having it done in outpatients in March I had to have a distension of the bladder because I was having trouble passing water my urologist said this was down to the Lichens,but my Gyni consultant had never picked up on this even though I had this problem for several years,I am really fed up at the moment & all this is stressing me which dosent help 

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  • Posted

    Hi edwina is it lichen planus only I have that and the itching is a nightmare, I use the coconut oil on my scalp and skin it us very moisturising and does help a bit. I understand your distress and many others on here are also suffering, how old are you and when wad it you started with lichens 

    hugs karen 

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    • Posted

      Hi Karen I was diagnosed at 53-15years ago after having problems for a least 10 years,my doctor used to fob me off with Canston cream telling me I had thrush.also about 15 years ago I stared having trouble with my scalp but never connected them I saw a dermatologist about 8 years ago with my scalp I they tried lots of shampoos & lotions they would be fine the first couple of times I used them,then they would drive me mad,today I went into the body shop & bought some coconut shampoo to try,when I see my consultant on the 18 th I will ask her if there is any connection 

      thank you for your input I really am very grateful   Edwina x x

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    • Posted

      Hi Edwina

      I started with lichens about 13 years ago I am 57 now but I noticed it came around the same time I had colposcopy for an abnormal smear, I also went on the menopause then and I do think it's connected, have you had any problems there ?

      Take care. Karen

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  • Posted

    Hi edwina, coconut oil is used primarily to keep things lubricated, as is Emu oil or Vaseline.  After using the bathroom, I spray a little water onto my Vjay, pat dry and apply one of the above mentioned oils.  It is important with LS to always have some kind of lubrication on your undercarriage. With regards to itching, some women have found Witch-hazel helps, but quite honestly it is all trial and error, you have to discover what works for you, as we are all different.

    Speaking bluntly, I personally would not have another biopsy, as I don't really see the point. You have already had one previously, and you have received your diagnosis.  It is important  to remember that many doctors/specialists aren't that knowledgeable about L.S. which is why you have to carry out your own research into the condition, and it's potential symptoms and possible treatments, so that you become as well informed as possible, with regard to your condition.  By doing this, you are then in a position to challenge suggested courses of treatment recommended by your Doctor, because you have knowledge, information, and therefore a voice, and can say no!  Having another biopsy will only serve to make you more sore and uncomfortable, after which your Doctor will probably just tell you what you already know! .....that you have LS!!!  If your consultant is concerned, maybe she should be looking at other creams or treatments to try out, rather than suggesting that you undertake yet more invasive procedures, that you have already previously undertaken, without seeing any improvement in your condition, and only causing yet more soreness and discomfort. 

    The best advice I can give you, is to review your diet, which is not something most women want to hear, but for some, it can play an active role in alleviating LS symptoms. I adhere to a diet that is strictly Gluten and Dairy free, and if I stick to it rigidly, then my Vjay is fine, no sores, no redness, no itching, no whiteness, no cuts, nothing!  However, if I have an accident, by somehow ingesting either of the two, boy do I suffer! Many other women will tell you the same thing, and so it all depends on how much you are suffering, where you are at physically and emotionally will depend on whether you want to go down that route. Sugar is also a very well know trigger for LS, I have had some terrible problems from thinking I could get away with a slice of cake, chocolate etc, and so you might want to look at that initially, if you can cut back on all sweet stuff you might be fortunate enough to see a big difference, just by doing that!

    Also please bear in mind, that If you feel you are not getting the right help and support from your current Doctor/Consultant, you can always seek out an alternative Specialist, if for no other reason to obtain a second opinion, to put your mind at rest, and to double check that you are in fact receiving the most appropriate and effective treatment, for your specific condition.

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    • Posted

      thank you Guppyy for your help I will certainly tell my consultant I don't want another biopsy which is like you say so invasive,& will ask for another inion,I will try the coconut oil,I cannot use gasoline as it makes it worse & try the witch hazel as well,I have heard of people using witch hazel but thought that it may sting so wouldn't use it for that reason thank you so much Edwina x 
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    • Posted

      I agree very much with Guppy 007. I would personally not comply (unless there is overwhelming reason to) with another biopsy. Unless it looks malignant (which is usually very apparent, and of course, rare), LS can be diagnosed clinically by signs and symptoms. I also have improved with dietary changes and eat whole foods, no gluten/dairy. I see flares when I eat sugar, including too much fruit (like my beloved watermelon!). I use coconut oil at least at night and the steroid infrequently--maybe once per week. No recurrences. I think that the coconut oil may be more than just for moisture. Coconut oil can be anti-fungal, antibacterial, and antiviral, also. Since there may be a link with LS and our bodies firing on an intruder by a misdirected attack on self, I'd say that it's worth a try to use coconut oil as a natural treatment. --Suzanne
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  • Posted

    My heart goes out to you, Edwina.  So frustrating, the different opinions from the med people, the waits, etc.  When we do get to see them, we have so little time to have clarification on our questions.  One specialist blames LS and another thinks not.  I am getting the same confused answers re anal soreness and occasional bleeding there.  I will go for a colonoscopy in August and perhaps rule out anything different and, dare I hope (?) get a definitive answer as to what it the cause and how to treat it.  I am sure not looking forward to the procedure though, as it may cause further damage to the area. 
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    • Posted

      Hello Helen I really feel for you as I know just how you are feeling,we seem to get past around like a piece of meat & at the end of the day they just don't seem to want to know just how miserable we feel.good luck with your colonoscopy in August I hope it sorts thing out for you 

      Edwina x x

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  • Posted

    Please, please try spraying the area with witch hazel.  Put it in a small spray bottle, spray it on and dab it dry.  Apply 98% to 100% aloe vera gel to the area...helps with the itch, moisturizes and this both are VERY HEALING.  The aloe vera gel keeps the skin from thickening also...and if you have that will usually make it go away. Please give it a try.  You will be amazed at how much it will help you.  Also, Manuka honey...15% or higher has amazing healing properties (confirmed by the medical community).  It is expensive, but a small jar lasts a long time.  Dip about 1/4 teaspoon out with a cotton swab and apply at night and wear all cotton panties to bed...this will also help with healing.  Additionally if you can cut out sugar from your diet, you will see further improvement.
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  • Posted

    My biggest worry is the passing of urine. I use Advantan fatty ointment and dermeze sensitive. The latter is a moisturiser. The biopsy really hurts but you should only need one to diagnose LS  it. It is stressful and that is counter productive but it is not easy not to stress about it.
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  • Posted

    Hi, I do not understand your last biopsy, they can usually find out what they need with a punch biopsy. If there is a larger area, they will usually numb the area with shots. If something is found I guess they would  attempt to excise the area to see if they a have clean outer rim....

    i eventually had a radical vulvectomy, there was a tumor found. My 'good' gyno was clueless and let it continue. He thought that vulvar cancer was so rare stemming from LS, it could not be that. I begged, I should have done more. I trusted him and now trust no one. 

    Go to another doctor and have another biopsy...you can not trust when it comes to your health. Question!

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