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.
We are in the UK and my daughter was given steroid cream and it was to be daily for a month, then every two days for a month and then every three days for. Month. We have just finished this treatment and so waiting to see what happens now. We weren't given any hormone cream. I hope this helps a little, not sure what strength your cream is, ours is called dermovate ointment. I hope you get it under control, Jo
Hi Mary
How much steroid cream do you have left?Perhaps if you use what you have and ask for another appointment....? a pea size amount is normally the maximum recommended. There is a link between loss - or change in female hormone levels- stress and low thyroid function. Others on the site also believe that diet has an affect too.
Are you able to request a repeat prescription from your doctor? - here in the UK the consultant prescribes and informs the gp who will carry on withthe repeat prescriptions.Is that the same in Spain?
IT is aslo VERY important to keep the area moisturised- in the UK a cariety of moisturisers are used - i use Diprobase- but a cheap option that is very good is aqueous cream - again available here very cheaply...A couple of pounds for a large tub. Use it to wash with. Others on the site use coconut oil.
I know how you feel about disppearing parts of you....I look in horror...but then think at least only I see what is happening to the undercarriage! So try and keep the stress levels down When I have The Itch I go commando and wear long skirts...again only I know this! Others on the site also will say how urine makes matters worse - so using a barrier cream makes sense. I am a blonde and when i think I am given advice I want to ignore I do so and say ...Oh whoops must be the colouring! Are you sure the advice to you was to use the hormone and not the steroid on a regular basis, and not the other way around???
The advice from medics here is if you are worried come back for a check up, but maybe you can phone the clinic for advice. Which day of the week did you attend?the clinics are normally held at the same time and location each week. Can you talk to one of the clinic nurses? or the consltants secretary?
If all else fails are you coming to the UK soon? because you can always see a doctor here as a temporary resident for a nominal fee. Dont be afraid to challenge the doctors telling them you have been researching the subject and telling them you beilieve the "received wisdom is....."
Do keep examing yourself to spot any changes and let the meidcs know. Health is so important Do try and get the matter sorted so that you feel comfortable
Take heart The Itch can be reduced - for short periods anyway
Best wsihes
Sue
Hi Mary,
Sorry to hear you have LS, I have had it about 6 years.
I use Dermovate cream when I'm sore. I wash with aqueous cream in the bath every night,which keeps everything soft and I think forms a barrier, I buy a tub at the chemist about £3 . It takes some adjusting to mentally, sex is not comfortable, although my husband is really good about it. I've also given up riding as I get very sore. The forum is very good, it's made me appreciate that I maybe don't suffer as badly as a lot of ladies out there. Good luck with your treatment.
Sorry Mary failed to post a longer reply, but the crux of it was this. You really should use th Dermovate. Apply it very sparingly on the sore areas or whiteness only (a pea sized ammount o the end of your figer will be enough for the whole area). I've had this for about 7 years and it truly is the only thing which does work. As others have said, keep the area moist and clean yourself only with water, especially after bowel movements. I tried a squeezy bottle when I was away from the shower, but this left me a bit damp, which seemed to make things worse. After you are clean apply barrier cream (or the Dermovate) - do not be tempted when out and about to use the barrier cream after peeing, becaus this can trap irritants next to the skin an make things worse. I am extremely choosy about wearing comfortable cotton knickers, which don't have a lacy edge (feels like a hacksaw blade if I have a flareup) and I have had to forgo tight trousers, especially if they are synthetic. I am managing by using emolients most of the week, but dermovate (alone) about three times per week. Keep your spirits up, but don't take chances with wierd creams. I too am looking into diet, stress reduction and excercise, but I will not be stopping Dermovate any time soon and I do not say this lightly, because I hate taking something as strong as this, especially in that area.
all the best and keep your spirits up
Margaret X
My experience is that one should have the steroid cream for a month and then reduce to twice weekly and then once a week and go on emollient. This should take 3 months at which point you will be seen again. This has worked for me and was much better but now it has spread to the anal area and i have begun again. Follow this pattern and you will feel better
Hi Mary, I was diagnosed this time last year. I found the steroid cream made the pain and itching worse and stopped after only 3 days. I went back to my GP who thought that HRT might work. She gave me pessaries initially and 2 weeks later everything had started to calm right down. She gave me another steroid cream that I never used and put me on HRT patches. I have cut sugar and bread and alcohol from my diet and a year on I do get the occasional flare up that I treat with sudocrem ( zinc nappy rash cream) that really helps but you can now hardly tell I have it at all. Colour has returned fusing is still evident but it is certainly not any worse and in the grand scheme of things I have only been on HRT since October so still early days.
Very best wishes and I hope everything settles down for you.
The ladies on this sight offer the best advice out there and support as we are all in the same boat but unfortunately it would appear what works for 1 doesn't always work for another but don't loose heart keep trying until you hit on what works for you. But definitely cut out sugar!!
Hi Mary you will see that there are many differing thoughts about the condition.Take care not to go down a quirky clinically untested route, unless it is non invasive. I looked at LS several years ago and found an American website where the participants were self referal to a research group. There were LOTS of untried and untested theories- many were frankly dangerous. Stick with the sensible advice offered - but extremes are not a Good Idea especially when you are desparate and vulnerable. The practical advice about clothing moisturising cleanilness and stress levels all have a base in sound advice. Some people find changes in diet works FOR THEM but it could be a placebo affect - or just that the condition is in remission for some reason- or perhaps their diet was so bad that changes have made a difference to their health. As with all things take what you want from this site but dont be beguiled into stopping the steroids- they work Yes there are side effects but the received wisdom is that their use isnt as problematic as previously thought - re skin thinning- and it is better NOT to have constant inflamation- which can cause much worse outcomes that steroid usage. Take care and you will see there are many people out here with LS and, as with all conditions, there are those who have a mild level and others whose health is badly affected. It is the same with most illnesses diseases or conditions - I hope that yours is a mild form. But Do Not Worry- tis the worst thing you can do
Good luck and Best wishes Sue
PS I am sure you have been told by your doctor LS is an auto immune condition. Where the immune system is "attacking" the body. It is NOT infectious, it is NOT a fungal infection, any more than asthma, excema etc. are. Do look up auto immune conditions on the web - it may help you get to grips with LS a bit better- and check out what stress does to the body
SXX
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.
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
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.
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.
Hello Nikkibabie, thank you for your reply to me. As has been said many times on this site each person has an individual experience of the condition, and the treatment that helps them. You are lucky to have found what works for you. However it may not work for other people, and disregarding conventional medical practice often can delay the relief current ointments can bring to the sufferer
I hope the following helps.
Lichen sclerosus et atrophicus was first described in 1887 by Dr. Hallopeau.
As with many medical conditions the naming was made when first identified by describing the appearence, and it was thought that the skin had a lichen like appearence.
Lichen sclerosus (LS) is also known as lichen sclerosus et atrophicus (LSA), balanitis xerotica obliterans (BXO), Csillag's disease, Lichen albus, Hypoplastic dystrophy, White Spot Disease and kraurosis vulvae. Typically it's called LSA or BXO when it affects men, LS when it affects women or in referring to the disease in general, and pediatric lichen sclerosus when it affects children. LS is usually found in the groin area, but sometimes on the upper leg or thigh.
Since not all cases of lichen sclerosus exhibit atrophic tissue, et atrophicus was dropped in 1976 by the International Society for the Study of Vulvovaginal Disease (ISSVD), officially proclaiming the name lichen sclerosus.
Autoimmunity is a process in which the body fails to recognize itself and therefore attacks its own cells and tissue. Specific antibodies have been found in LS. Furthermore, there seems to be a higher prevalence of other autoimmune diseases such as diabetes mellitus type 1, vitiligo and thyroid disease.
One day we will find out WHY this condition occurs- as with other inexplicable changes to our bodies, and perhaps you could write an article so that the medical journals could publish your findings- or get a university research department to undertake a trial , the outcomes verified and the results disseminated responsibly throughout the world.
I wish you continued good luck with the "reversal" of your condition
Sue
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
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
Thanks, Dermovate seems to be the ointment that they use
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
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
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