Lichen sclerosus

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hi everyone I have just been diagnosed with Ls ! . Took a while but took myself to the local sexual clinic as my dr and nurse kept treating me for thrush !!! Knew it wasn't  !!. I had diagnosed myself from reading the Internet !. Was happy to know finally what was wrong ! But nhs paints a unrealistic picture of it ! From when you start reading the other , real info about it ! About how horrible , painful , disfiguring it can be ! Not to mention ruining your sex life . And the risk of skin cancer !. At first it really freaked me out !. Then I thought right you bug ( as that is how it feels ! Like a bug burying under your skin and making me itch like my hubby does at night before he goes to sleep ! Lol. It found its way in to my body and I am going to make sure I find away to get it out !!. It is all new to me so at the moment I am reading like mad !. I understand that it comes from an unbalanced system ! They say that your gut is your second brain so I am going to start with healing my gut  !. I am taking probiotics , also you need to clean out heavy metals ! That cause your body to be toxic ! So you need rose hip and then L-glutamine to heal leaky gut .  They say skin conditions are a body screaming out , I am toxic !. So heal with diet of unprocessed foods , relaxation ! Cause a big problem to flare up your Ls is stress !!. Also coconut  good for itching and moisturising  !. Please help me with any of your findings ! Till I find out more , love Jackie x

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  • Posted

    Hi Jackie sorry you have LS but you have come to the right sight for knowledge.  The ladies on here are terrific!! I joined a year ago when first diagnosed, also a self diagnosis.  Doctors were very frustrating and I was told so many different things as to what I had.  I got lots of useful information and help from this site.  One thing is clear that everyone has a different level of LS and symtpoms and that there are no answers except to try everything.  My best advice is to try one thing at a time for at least 1 week to 10 days - if not helpful break for 2 weeks then try again.  I got myself into quite a mess trying all sorts of products and solutions desperate to make it go away -  which in the end I didn't know what was or was not helping.  I am now comfortable with just using Ovestin Cream to help vagina and wash with warm water only.  I don't use Clob any more as that made me worse but for others it's a godsend so don't go by individual cases. I agree stress and lifestyle facts can contribute but are not the cause it's an autoimmune disorder.  Mine did come to light after a very stressful period in my life but I think it was there anyway just not exposed.   I have difficult days but then I have good as well so those are they days I get lots done and go out and enjoy myself more.  Good luck! 
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    • Posted

      hi Jess , I know it is trial and error !. Wish I didn't have it ! But I do so just trying honey at the moment , but it takes a while before you know whether it is good or not !. How old are you ?. Do you suffer with any narrowing ?. That's what worries me !. I am sorting out my diet and doing relaxation which helps . Just keep on trying stuff ! Love Jackie x
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    • Posted

      Hi Jackie I am 55.  I do have some narrowing.  I hope this isn't TMI but I did notice about a year before all this started that sex was getting difficult - I just thought because we were not as often as we had been that this was the problem - now I know differently.  My narrowing is only slight and Gyno has suggested using a dialator but that seems to break and split skin at the opening again - just doesn't end.  It's a horrible condition! Stress plays a major for me.  For example I have been quite comfortable of a few weeks then last week lots of work stress and I am not in a happy place again.  Like many of us I have to work but may have to consider a less stressful position.  I manage 50'staff!!  
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    • Posted

      aww poor you , know wonder you are stressed ! Managing  50 people !. That would do my head in !!. Did you not have any itching prior to your diagnosis then ?. Stress definitely  flares mine up big style !. How long have you had it ? Love Jackie x
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    • Posted

      Im still not sure if i have it.one doc says i have a mild case.Have not had a biopsy to confirm.3 doctors have said 1 percent over the counter hydrocortisone ointment not cream is ok.I rarely itch now.
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  • Posted

    Hi,i have 3 doctors and none of them agree if i have it or not.I have also read it can be caused by past skin issues.potent steroid to treat it is the treatment of choice.You will find much info about this online.Hugs!By the way,I am presently just useing hydrocortisone 1 percent over the counter,also a and d ointment.Sitz baths in warm waater 15 to 20 minutes when theres a flare with symptons.you can buy a basin that fits on your toilet at medical stores for this.I then air dry laying on a bed.only white cotton underwear.when possible at home go comando..no underwear under your nightgown,helps air to circulate.Dont itch the scratch,just creates a itch,scratch cycle,lots of water.Wipe front to back with toilet paper with water on it.No soap when washing.Cut down on acidic foods.I also believe vit d,e and calcium citrate have been found to help.The low dose cortisone has been approved for use daily as needed by my doctor,you should check with yours first though.Also ask about the stronger steroid. X
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    • Posted

      hi lee , thank you for all your advise !. I can use the loo fine it doesn't hurt me to pee or the other !. I just itch like mad ! It is just like some thing under my skin !!. Although it has calmed down after 6 weeks on dermavate ( but that made me sore after 4 weeks ) so I used less . Love Jackie x
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  • Posted

    How things have changed! wHen a gunk consultant confirmed my L.S.   ten years ago he told me wear NO underwear, tights or trousers and NOT to bath or wash my undercarriage with water but prescribed cream to wipe it with. I duly obeyed for a year or two during which my skirts got longer and longer as I endeavoured to keep out the cold draughts and stop the wind blowing my skirt up to reveal all LOL

    What was he ON?

    Eventually I began wearing my husband's loose cotton  pants inside out. to avoid chafing by seams and succumbed very thankfully to the Oliatum baths prescribed by my skin consultant for my excema and Lichen Planus. (Anyone else have that?)

    Then the LS , LP and excema all cleared up. So I stopped the oily baths and started to enjoy bubble baths again. BAD CHOICE! As LS reappeared and included round the back passage. Creepy! 

    All is fine agai now that I have reverted to Oliatum

    I mentioned this about two months ago. Did any of you try it? What about Aveena have any of you tried that. It is rather expensive but very helpful for other skin complaints I gather. 

     i mentioned 

     

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    • Posted

      hi daphne , know I haven't tried any of above , I am washing in plain water which is working well . No I haven't had lichen planus ! Is that similar ?. I still wear my leggings ! But changed to cotton knickers . How old are you ?. I get most of my itching in the vulva and back passage ! Not nice !. Keep in touch love Jackie x
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    • Posted

      Hi Jackie, Lichen planus is itchy lumps on my legs....only in winter when not exposed to sunlight. I am 81 years young. So the back passage itching IS the lichen sclerosis! That ole consultant told me not to come back  so especially after his daft advice regarding washing etc I coped on my own. i haven't bothered my present doctor with it because he is already treating me for six other problems not related to either of my lichens and don't want to bore him lol. The dermatologist prescribed steroid for the lichen planus so I use a little of that during a LS flare up which I only get in winter but I don't often expose my vulva to sunlight wink 

          All things being equal I am expecting to undergo a total knee replacement with only local anaesthetic on Thursday so my  LS doesn't seem so important just now. Not too bothered about Christmas either. 

           Do try Oilatum in your bath if you can get it and let us all know if it seems to help. x

       

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    • Posted

      hi , thank you for your advice I will try that !. Dr's aren't God ! They are useless ! You have to find your own way !. Sorry to hear you have so much going on !. Good luck for Thursday ! Hope it goes well for you . Don't worry about bothering the Dr ! That's what they are paid for !. But I know what you mean ! They do make you feel like that ! Take care , speak later xx
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  • Posted

    You have the right attitude , I admire you and your determination to combat this .Diet has a lot to do with it, I have found cutting out sugar and bread has helped me. It's good to try detox your system, simply cutting out sugar has stopped the itching for me, it's all trial and error i'm afraid, you may have a lot of setbacks but don't give up, Steroid ointment is often the last resort in many cases, it does work and the skin does improve but only use it sparingly , the least amount you can possibly use. I just use it twice a week , just a tiny amount , I wash my lady parts with dermal lotion mixed with aqueous cream, my condition is stable most of the time, I am in my late 60's so sex is out of the question (too painful),I don't know your age but I hope you find a way to have some sort of sex life. Hope you find a regime that works for you, don't loose heart, if it takes longer than you thought , good luck.
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    • Posted

      hi judy , I am doing quite well , just come of the steroid cream after 6 weeks and not itching too much . Like you say , i itch when I eat sugar and bread and stress really does make me flare up really bad !. It is so nice to talk to someone who knows how you feel !. I am 47 and my sex life is really good and I am really lucky as I don't have any narrowing or sores just itching and bit warm down there at times !. I have started using honey ( manuka 24 ) used it last night and apart from being a bit sticky was ok . I found juicing really helps me as all my white skin has tuned back pink and moist ! Don't know if it is the juicing , but I will try anything ! I know I have a lot more energy as I was always so tired before ! Do you find that ? I feel sorry you carnt have sex ! Have you got an understanding partner ?. That's what worries me most as me and my husband have always had very good sex .i am determined to get there ! We have to be positive ! More is being done about the condition . Love Jackie x
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    • Posted

      Hi again Jackie, I am 47 like yourself and my husband and I have always had a good sex life.. that was a big issue for me when I was diagnosed with this.. things are still fine, I don't have narrowing and I don't find it painful but can be no longer spontaneous like before.. it now has to be planned ie shower before and straight after and then use something such as coconut oil/perrins to calm things down. I also found that I was at my best when I did the juicing and getting plenty of fruits and green veg. I haven't heard of using the honey but will have to give it a go. I have been taking some omega 7 oil tablets but not sure they make much difference although I often mix the oil capsules with the perrins for extra moisturising benefits - Jo x
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    • Posted

      hi Jo , I don't have any narrowing (thank god) but that does bother me !. But from what I have read , it is the scratching that causes skin damage ! Which causes the narrowing !. You sound like me , I don't feel like I can just do it naturally like before ! Although I do need to relax as I had it 6 months before diagnosis ! And I just carried on as normal . I think it is what we have that gets in your head ! And puts you off ! Although some times I do feel sore afterwards . It's because I know what it is !. Don't talk to my husband about it as he thinks everything is normal to him ( so I let him think that ) I mainly itch at night ! Wish I could get that to go !. I have been looking at propolis gel ! I am going to try it as apparently it heals cracked skin  and you can put it on your genitals safely . So you can mix it with aloe Vera as that is good for itching ! It is calming . Where a outs in uk do you live ?. Love Jackie x
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    • Posted

      Hi Jackie, I find that mine is mainly sore, occasionally itchy but I have resisted the urge to itch up to now, just using something cooling does the job. I also go commando wherever i can, especially around the house and that certainly helps. You do remind me of myself as I researched this condition to death and have tried so many different things until i found something that worked, but really because i was frightened, almost paranoid about it. I dont feel like that now mainly because of forums such as this one and realising i'm not the only one. I live just outside Grimsby, North east Lincolnshire. Where abouts are you from Jackie?
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    • Posted

      hi , Jo , hope you are ok . I am quite good at mo ! I am taking your advice and going commando in bed tonight !. Yes I find this forum helps me too !. I some times feel like it is a horrible dream ! And I will wake up ! But no such luck ! My itching seems to have calmed down ! Thank god ! Wish I could get it in to remission like people talk about . Some people are symptom free for 4 years ! That's what I am aiming for .  I live in Derby , and my son goes to Lincoln university  . You arn't that far away ! From me !. Love Jackie x
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