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I have had Lichen Sclerosus for many years not so severe...it was basically itching, not on my genitals but to the side...after 15 years of itching/scratching a doc finally diagnosed LS about 4 years ago...so I control the itching with Clobostel pointanate (SP). Now in the past few months I have realized my Labia Minora has all but disappeared! It's just not there, but I have no symptoms like you would think if it is caused from the LS, I don't tear easily I don't have bloody spots or raw places and as far as I can tell I don't have the white patches associated with LS (at least as far as I can see) I am somewhat concerned about Vular Cancer as I had an Aunt on my mothers side that died from it and my father died from prostate cancer. I am 60 years old and sexually active (maybe 2.5 times a week on average) and do not have any real pain from intercourse. Due to pititutary problems, I am taking Growth Hormone Shots every night I am currently on Nutropin AQ taking a dosage of .7 .......not sure if GH shots could have anything to do with it. I do have a GYN appointment on 10-19-09.......Thanks for any information.

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Hi there, I read over this a couple times, but I can't tell what your question is. Can you tell me a little bit more about what your concern is? I am really sorry if I can't figure out what your question is. Let me know koay?
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Thanks for responding.....Sorry, I did ramble....my concern is my labia minora is all but gone. Is it due to the LS, which is not that severe, or is something else causing it to go away? Can anyone explain a shrinking (almost totally gone) labia minora or has anyone else experienced this problem?
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Yes the missing labia minora is due to Lichen Sclerosus. Over about a week or so I saw some changes that seemed strange but today... what was DEFINITELY all there this morning, is almost completely gone. The tissue shrunk and was apparently 'absorbed'? -not sure how else to describe it exactly but yes, it's scary and freaky to know what it should look like yet suddenly it's morphed into a strange, unrecognizable domain. I've yet to be diagnosed but I've scheduled my appointment and have already discussed the symptoms with my doc. This is undoubtedly due to the disorder. Unfortunately, I have no answers except to say that there really are others out there like you and we understand your pain and frustration...  

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What I meant to say at the very bottom was: I ask myself, if all this happened in a number of hours over the course of the day today, WHAT ON EARTH WILL I FIND or not

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I am sorry to hear that you feel that way but I'm glad that you're at least doing well. Let me know how you're doing and keep me posted, okay?
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Well, here we are almost a year and a half later. I was diagnosed with LS shortly after posting on this thread. It's my own little nightmare but I'm dealing. I have yet to find a knowledgeable doctor in Atlanta so that's what seems to be the worst part, not being able to trust that your getting the best treatment. My condition is far worse than it was at diagnosis and I'm terrified to think of what's to come. Almost equally as bad, my husband apparently thinks I'll break or something and intercourse has almost completely stopped. Way to "support" me there, right? lol He means well but it leaves me upset quite a bit. I was diagnosed with this 5 or 6 months into our marriage so I suppose he got the raw end of the deal, lol.
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disappearing minora labia
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Please share the name of your Atlanta dr. I am suffering the same problem and my GYN doesn't seem very knowledgable about the condition. I am at my wits end dealing with this!
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I have LS. Want info. Phyllis
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I was diagnosed 12 years ago with Lichen Shlerosus Atrophocus of the Vulva  (sorry for spelling errors) after a hole appeared in my left labia minora.  It itched so badly that I thought I caused it by pinching it nightly! I knew not to scratch at least.  It was removed and sewn together but had a hematoma and it ruptured through the stitches.  Nothing worked to stop the drastic aging of my labia.  I have had swelling on the right side as well, every few years.  The left side has been absorbed, for lack of a better word, and my clitoris is disappearing as well.  I read that if you don't use it, you loose it, and it's a type of vaginosis.  I'm a healty 59 year old; I eat organic, no sugar and would want to use a natural treatment if possible.  Actually, even the creams the Drs have prescribed haven't helped.  Are there any ideas out there?

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I have lichen sclerosis and have it under control. Unfortunately it was a bit late for my diagnosis after years and years of itching. I always thought I had thrush until I eventaually found a Doc to diagnose LS. I went into early menopause and everything stopped at 36. Now at 56 my labia minora has shrunk quite a bit. My labia minora was agony during interourse with my husband and altough I am right into him - we had to stop because I could not stand the pain. I found dermovate was the steroid cream that helped me. The others aggravated it severely. Now my labia minora has shrunk I don't have any trouble there at all. Now this is very important for all older ladies out there like me with LS. Your labia minora may not have shrunk because of the LS. We are not told that as you become post menopausal your genitalia shrinks - so it may be perfectly normal for you to be that way now - if you are older, because you are not producing estrogen like you used to.

 

I was very upset until I discoverd this. The clitoris shrinks too and that's a bit of a bummer, although no loss of sensatin. I've found that due to the changes I became multi orgasmic and I had a ball of a time (excuse the pun!) Sensation does not last as long at moment and I have devlpoed a rather peculiar pudendal nerve problem - which basically means my clitoris has a mind of it's own and can be nice and responsive one minute and then deflate at the drop of a hat. I'm due to see a neurologist for this. The ligaments in my groin are very sore at times and this is when my clitoris decided to be a bit unresponsive. I've gone from being very reponsive to not actually knowing what is going to happen each time. As my husband now has ED we are a right pair. Overall I am getting slightly better and respond well to masterbation. I don't know if anyone else has these problems or if it is just me.

 

What I feel is teribly unfair is the shrinkage which is normal for our age, but no one tells us this and we all put it down to LS. If you are older and finding your LM disappearing, especially if you have had that terrible pain during intercourse in the past - Take heart - the shrinkage stops all the pain and you can be as active as you were before. I'm living proof of it!

 

Now down to some facts - Steroids help, but don't over do it - only use them when you need to get control - do not apply them all the time, because they thin your skin. Natural estrogen helps the vagina and alternative to the steroid, thickens the skin and helps repair it. Natural estrogen is etriol - not estridiol which I learned after a lot of these harsh chemicals being given to me for years. Estriol is the natural estrogen and although the weakest, has the best results and does not harm your body - ie - causing cancers, etc. It's one of the ones you used to produce naturally in your own body.

Replens is excellent for cleaning the vagina and keeping the PH balance right. If the PH balance is even slightly off you will have  lot of itching etc. I used to be so bad in the past before I learned all this, so much so, that during intercourse, I felt as though my husband was drawing a knife across both my labia and even applyiny the dermovate afterwards had me ouching out loud - I could hardly touch myself without feeling I was poking a knife into a wound, The skin just came right of if I touched myself - like poring salt on a wound. Try the replens - it helps a lot.

 

Next - purple emu oil. Teriffic stuff - great for all kinds of inflamation - even in the joints and it lubricates your skim and provides a protective barrier.

 

During intercourse use Liquid Silk - you can collect lots of samples if you ask at the Gyn clininc.  And don't use K Y jelly and definitely not vaseline, although the docs might tell you to use this. Vaseline carries a lot of germs`

 

I don't need any lubrication now beacuse the ovestion - estriol is working so well for me.

 

Do not, on any occasion, use soap or perfume of any kind. Don't even let your husband wash himself with soap before intercourse or you will really regret it and suffer as a consequence. Aqueous cream helps with cleaning if you prefer something like this, but I just steep in the bath with a half cup of vinegar and that does the trick for me.

 

How do I wash without soap. I get cleaner now than I ever did with soap. Funnily enough, I was talking with my dad a long time ago - he went last year by the way, and he said he often just rubbed his skin in the bath and all the dead cells just rubbed off and it was much better than just using soap. I was more than surprised and thought this was a bit odd and really did not believe it. Well being unable to use soap I tried it and it gets you really, really clean. Do not rub your problem area though - just your body - let the water just soak on you down there. If you are a bit dry afterwards, which I no longer am - put on some emu oil or apply replens in the vagina and it will lubricate you outside as well, or yet again, some aqueous cream or a cream that works for you.

 

Right - next bit - which I have found very interseting. Lots of sites talk about sea water. Lots of ladies out here have noticed that during their sea side holidays their LS is a lot better and attribte this to the sea. As I am not much of a swimmer and also am a lot better on holiday, I discovered it was not the sea water that made me better, but the sun. When you sunbathe you usually open your legs and move them about while lying down and this position lets the sun to areas it never usually sees. When sunbathing open your legs - get he sun there.

 

How am I so sure of this? Well there have been studies done on blue light treatment for LS. I didn't have access to blue light, but I do have a medically approved sad lamp. And lo and behold - when I have a flare up I use that and I'm fixed in no time. Mind you it is not a pretty sight - legs a kimble in front of the lamp on the floor - but, hey ladies - we'd do anything for relief and more importantly - CONTROL.

 

Well there you have it. My experience of LS and all the things that have helped me. If it only helps one of you, I'll have done a good job. Hopefully it will help most of you and even better if all of you. You'll know about the cotton pants of course, but I can now wear super sexy nylon and lace ones as long as not all the time.

 

There is also an Italion Doc who is doing wonders for LS with blood plasma and stec cells. I've tried to get in touch with him via e-mail but have been unsuccessful. His treament can, in some case regenerate the lost labia minora, but he only treats untreatable cases. I hope one day to reach him and have the treatment - usually three trips at about £5, 000 overall total and can be a lot less if you respond really well.

 

Hope this is helpful.

Signed - Optimistic

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The only treatment my doctor has given is clobetasol a steroid ointment. It should hold back the progress and renew the skin. Unfortunately it hasn't brought back the missing minora. I'm wondering if taking estrogen would help with the minora. As this all seem to happen to me after menopause. the LS and all the changes.
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The labia doesn't shrink. The minora and majora -- outside and inside -- stick together. If you try, you can pull them apart. I don't recommend this at all, by the way!!!! I tried it just a little, and ouch! If you take a piece of tape, and fold it in half, but not exactly, make one side bigger than the other, then start to stick the two sides together starting at the bottom, you'll have an idea of what's happening. I understand there is a cream to help. I haven't yet seen a doctor yet but am going to very soon, and you should definitly go to a GYN or a Dermatologist. Either can help.
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dear optimistic,,,,ty,,,so glad to hear me and hubby are not alone,,,,oh the joys of getting old,,,xxxxx
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