where did it all go?

Hi there loopsy. I have just read your post, coincidentally I just registered for this site yesterday.

I am 53 and was diagnosed with LS at Christmas. I have had the biopsy to confirm this.

I believe I have had this disease for at least a couple of years maybe three. It has mainly caused problems around my anal area and the vulval problems were less severe. I have had a fissure (which has now almost healed) and have had pain and bleeding when I have bowel movements for all of this time. (sorry to be so graphic :roll: )

I am replying now because my consultant said at my last appointment (two months ago when I was prescribed Dermovate) that \"It will burn itself out in 10 years\". Over the last couple of months I have been reading everything I can find to help me understand what I have got. I have never seen anything about it burning itself out anywhere else. Fabia on the LS Helpline said it is incurable and progressive.

I am currently writing notes to jog my memory when I see the consultant this afternoon, this is one of my questions. I will update with his response when I get the chance.

My labia are also obliterated and discoloured, thank you for your post as I was worried it was the Dermovate which did this, it has only happened in the last couple of months. Your experience sounds more like mine than others I have read so thanks again for posting, and my very best wishes.

Hallo loopsy & sueg

I definitely believe because women are insisting on a diagnosis the medics are finally starting to recognize LS. Because LS often remains 'silent' or is misdiagnosed as thrush a lot of architectural damage takes place unnoticed ie labia obliteration vaginal stenosis. From what I have learned LS DOES NOT BURN ITSELF OUT. It is incurable and progressive and daily maintenance is a must. It is shocking that consultants are not truthful. You both say that your labia are obliterated and discoloured. What caused the obliteration. Was it fusion? By discoloured do you mean white? My experience was similar in that \"out of a clear blue sky\" I felt a tight sore feeling in vulva/vagina. That was Feb 2008. I have been to three consultant gyns and consultant dermatologist and it was an american professor who finally diagnosed LS. It is essential to have a biopsy to confirm diagnosis. I await result of biopsies to rule out any other more sinister condition or perhaps the existence of another overlapping condition. Regardless 'resistance is futile' so we have to accept what life throws our way. Would love to hear how you ladies get on with your daily management.

Yes it is incureable ladies, Never ever heard of it burning out. It can lie dormant but not go away... but it does not mean that your progression will lead to something nasty just means your bits will shrink. Your clit will still work though! ...Maintain with aqueaus soap free products and use your barrier ointments to stop the itch on the surface. As for your discolouring that is the Lichen underneath your surfaceskin. It carries on growing and its your steroid that keeps it in check.....Maintain everyday and you daily life will be comfortable...Its like cleaning up if you dont clear out your draws then polishing the surface will not be enough. Prevention is nine tenth of the law they say.. Take care marilynxx

Hi there mayocovie and marilyn49 thanks to you both for a prompt reply.

Have just seen my consultant and he has insisted again that it can burn itself out after I posed that specific question. Has also insisted it is chemical in origin and not (as I believe in my own case) hormonal. I have had a biopsy.

To answer your question on labia he has told me the lichen causes thickened skin which is the discolouration. Did not mention fusion or what has caused the obliteration (ie disappearing labia) - he just said it was the disease which caused it.

None of this happened until I started using Dermovate 2/3 months ago. Before it was red/whitish (but not totally white) and inflamed/itchy. I have had most problems with my anal area as the skin splits and bleeds whenever I open my bowels.

He has now referred me on to a dermatologist so I won't see him again. He agrees it is not yet under control but was not best pleased when I said I had used all the tube of Dermovate which was supposed to last 3 months. The dermovate does help with the irritation but I am bothered by what else it may be doing. However when I reduce the amount I am using it flares up again, my GP didn't seem concerned and just prescribed another tube of Dermovate.

Must go now have to pick up my little one from school. Will add to this later if anyone is interested. Thank you all for your time and best wishes.

Hi sueg maycovie and marilyn,thank you so much for posting-it feels so supportive to share info and experiences. I don't know what fusion means? By discolouration I mean that the area is white.Does vaginal stenosis mean what I have been told, that I have \"some atrophy in the vagina, which is a different thing from the LS\" Why oh why is there so much confusing information?I don't understand why so many people say it does'nt burn out, but your consultant says it does, sueg.If mine has burnt out, why would I now be experiencing pain? Anyway thank goodness for this site and lets continue sharing info and experiences and treatments that help us tolerate this condition.all best to all.loopsy

Hi loopsy/all

A couple of thoughts:

Whether or not it can burn itself out, it doesn't sound like yours is burnt out yet!

(I don't at the moment believe what my consultant told me, I think he could tell that by my look of disbelief. He said to discuss with the dermatologist he is referring me to, which I will!)

If the dermovate works totally as I understand it the white skin should turn pink again but the lost tissue will not return. I haven't heard the term \"stenosis\" but I assume it means the same as atrophy and it is all part of the LS.

The dermovate has only partly worked for me I have been told to stop using it (or at least cut down) - at least I am being referred on and not ignored. No doubt this will all take time, I have to go back to my GP and then be referred and then be on a waiting list. But I will not give up and hopefully you won't either. Best wishes

I am doing as marilyn suggested and using Aqueous Cream and a barrier cream daily. Will cut down the steroid and see what happens. Also have been told not to use toilet paper (chemicals), not to have baths only showers, and wash clothes in non-bio products. :roll: Not sure how I can explain to my little girl why I am using nappy cream and nappy bags, never mind! :lol:

stenosis means 'narrowing of openings..... either vaginal or anal or urethra. pee tubes... Atrophy means wasting away of muscle density etc., so if you are losing say your inner labia or your clitoris then that is atrophy..It is the Lichen that grows and cause the burial of your bits.through thickening skin layers. The white you must try and contain. the lichen can also appear bright ruby red. In all..... Lichen sclerosus is like scar tissue - Atrophy that thickens the skin and makes your labias and clitoris disappear. Fusion is when the inner or outer labias adhese themselves to your urthera or vaginal opening. They stick and blend in and then disappear... Dermovate has been known to sting when overused. Never more than a pea sized blob of any steroid at one time otherwise your skin will become weak. Steoids Should not be used for more than twice in a day maximum. Good barriers to keep your steroid in and keep wettness out, no soap anywhere near your nether regions and [i:78173120fc]routine[/i:78173120fc]....A little of everything often is the way to go... It does not go away so dont ba nk on the words of that Doctor...Ask Ladies who are and have been there for the past 20 plus years.

As you go along you will learn all. Dont get bombarded by longwords.

If you search engine the words that you dont understand you will find the explanations are there.Hormones are not atributed to LS..It is a chemical imalance so it is written and it is Auto-immune so people who are surceptable to conditions like asthma,eczema,psoriasis,thyroid,arthritis, etc., are more likely to get this.

Read a lot of the older posts here and you will get an overall picture and then you will learn what is right for you... It is a fearful thing to deal with but it does become easier if you de stress and maintain daily.. Mal

Thank you Mal for the detailed advice. It is so helpful to have this explained. We really appreciate the time and care you give to us all. I now realize that my left inner labia is fusing into my left outer labia and this is happening in the last month. Unfortunately I cannot use my steroid as my stitches have not dissolved. Correct me if I am wrong but I only use water on my vulva since having the biopsies as I am afraid that the aqueous cream or Paladin might interfere with the healing process. I am quite anxious that my vagina might fuse. I do not know how long it takes for stitches to dissolve probably depends on condition of skin. Any advice is welcome. Do you think I could apply cream to any part of the vulva or would it enter the stitches and annoy.

Hi mayocovie.. I have answered on the other site to you too...Lynzi would probably tell you more but i would think that a little lubricant would help you. either aqueaus or barrier wouldnt harm but i would start on aqueaus mixed with a little warm water and gently smoothed on would be a blessing to you and you would be a bit more comfortable. Barriers wont hurt you but I would start with the aqueaus for a few days ,epaderm, or one like that. They are safe. They are used on open sores and exzema so would not hurt you. Healing sometimes needs a soften hand ..take care xxx

Hi all

Marilyn thank you so much for the detailed explanation of all the terms I will print it off to keep, there is so much to understand.

I have obviously been using too much of the steroid ( ) more like twice a pea size blob twice a day. The doctors didn't actually explain properly, am learning now to question everything carefully. Because it has only partly worked also I didnt reduce the frequency. Anyway I don't think I have done any long term harm (well I hope not anyway). Have reduced to one pea size blob once a day for the last three days, and using the barrier creams, and it's not flared up too bad will follow all your wonderful advice from now on! Will reduce it some more in a few days but had read it isn't a good idea to suddenly stop so will do it gradually.

Totally agree not to believe everything Doctors tell me! I am still finding it hard to believe there is not some relationship with hormones. I have no previous history or family history of any auto-immune problems in fact apart from this I am lucky enough to be very healthy. However I know I have had extremely unbalanced hormone levels over the past few years. I was lucky enough to have my daughter very late in life and then breastfed for a long time. As soon as I stopped I crashed into the menopause which has been a nightmare. This is when I believe the LS originated, although it has only been recently diagnosed.

Thank you all so much for your time and goodwill reading and replying to all this, it is helping so much to be able to discuss it.

Best wishes Sue.

hi sueg...Its never a good idea to stop using your steroid at all as at the present time its the only actual treatment...The rest of the products treat your surfaces but not underneath your skin....I have page on on comfyskins message board which comes from a medic site and explains in laymans terms so that we all understand about LS its causes -symptoms-treatments and overall findings and off course prognosis. if you read that topic listed on the left of the message board halfway down you will learn a lot and it is practical reasonings not probables...I know that trauma plays a part in LS so having your child etc., and being menopausal is both a shock to the system and the actual birth site is tramatised so LS is known to start there. Lack of estrogen can cause dryness and therefore cracking and splitting is a problem cos your elasticity is not as supple as it used to be. The medics can give you a ostregeon type cream which you inject, like i do , into the vagina a couple of nights a week after a daily injecting of a couple of weeks . It helps the dryness and makes your opening more supple.

I have ladies on my site who have started after tears in childbirth so trauma is a reason.... take care Sue...Mal

Hi Mal many thanks again for your reply.

Have looked at ****, am assuming the page you refer to is the one from niams under Vulval health links? There is lots of useful info on that site I am trying to take it all in.

Have not stopped the Dermovate just cut it down to one pea-sized amount daily. This was Thursday after seeing the consultant. Unfortunately since then I am very worried about what's happening, the white areas are much increased, and all around my urethra as well as my back passage and atrophy appears to be affecting a larger area. Am going back to see my GP this morning for advice and to attempt to speed up the referral to the dermatologist. Can cope with broken bleeding and inflamed skin but the shrinking white areas are frightening me. :cry:

btw I can't attribute getting this to trauma (unless the menopause itself is classed as trauma, which to my mind is hormonal..) - I had a caesarian as my wonderful beautiful little one refused to come out the normal way! At the end of the day it doesn't really matter why, what matters is I get to grips with managing this disease. I am currently on HRT so presumably can't get more oestrogen but I will keep this in mind if I have to come off at some stage.

Love to you Mal and everyone else out there who is reading and answering questions let's all try and help each other.

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Hi there Sue...I hope your gp can speed up your referral if only to stop your fears.. The steroid will help to fight the white but these flareups do happen. **** is a whole web site not a page on vulval health although you can go to all the vulval health sites from there too.

Oh, I see you are on hrt, well, no the docs cant give you more hormonal stuff but bear in mind that they can help when you come off hrt. Its important to treat the white around the urethra as best you can as that is the hardest part to apply stuff to but the easiest part to fuse to the labias. I have a fused clitoris too and cant see it but still can feel its there and I have cystitis which sometimes occurs when my cream finds its way inside or the flare up is in that area... I do hope you get seen promptly and can get different medication if needs be. Sometimes a change of steroid can help if you feel yours is not working as it should. Take care Love Mal x

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