Lichen sclerosis _{Page 5 of 5}

Thank you al2000, I really appreciate the tip. I would also really appreciate any detail you can give on the severity of your LS and the kind of symptoms that disappeared. (itching? lesions? fusion? clit sensitivity?)
If you're willing, I'd also love to hear more about the underlying causes/beliefs that you discovered- it might broaden my mind for what to look for for EFT. I've had a few sessions with an EFT Master and didn't achieve great results, but it was on a very charged issue some years ago.
How did you learn it?
For other readers I'll mention that it can be learnt for free at emofree dot com.
Thanks again,
Sarita

I was very sensitive and sore, with bad clit sensitivity. Sex was out of the question. I wouldn't say itchy, just really sore and there would never be a day that it wasn't at the forefront of my mind.

in terms of EFT, I don't believe the level of discomfort is reflective of how successful EFT is. Basically if they're is an underlying emotional cause then EFT will work - but the key is identifying SPECIFICALLY the problem.

I have read that LS is often connected to sexual issues or problems with boundaries. But telling you what my emotional reasons where won't help you because yours will be unique to you (and might muddy waters).

I focused on when I very first became uncomfortable with LS and what was going on in my life that might contribute to it developing (you might need to guess). I spent ages then tapping around one problem (and it doesn't need to be a barn burner) until I finally narrowed it down further and got specfic enough for EFT to work. I was using steroid cream every day, but I stopped immediately and haven't used since.

Be persistent with it, there were times I thought it would never work and I'd never identify the issue, but kept at it because I'd exhausted every other avenue and it felt like my last hope.

Frankly, it feels like a miracle. I expect emofree dot com will list courses run in your local area. Good luck!

Hi al2000,
thank you so much for sharing and I will have a go at EFT as I believe emotional growth is always a wonderful thing and if it helps me stay symptom free then that is all the better.I started having real problems with LS to the point that it effected my sex life when with my partner who I am leaving at the moment. He has cheated on me multiple times, has an honesty and lying problem and is emotionally abusive. I have been with him for 4 years. Why did I not leave earlier because people are never all bad and he is loving and generous as well and no one likes to break up a family. I am sure that my LS has been exacerbated by the stresses and betrayal of this relationship. Since cutting sugar out of my diet completely in June, however, I am symptom free and do not suffer at all ... I feel normal! My fusions have stopped and the skin has returned to normal and I did not realise how abnormal my skin was until it changed back to normal tissue! Amazing. Thanks to everyone for sharing so we can all feel better and fine the solutions we seek. Wish me luck on my new life! Its going to be great! :)

Thanks xHally, interesting stuff about sugar and contributing factors too. Good luck with your future !

Sarita, sorry didn't properly read your query - the EFT took away all symptoms. I can wear pants with seams down the middle, jeans without irritation, my skin no longer looks red and raw, instead it's pink and healthy, I can go walking without looking like a cowboy and I feel ready to enter a new relationship, which I dind't feel able to contemplate previously. Hope that helps. good luck :)

Thanks al2000, and please keep us posted as you enter the field of relationships!

Your list of symptoms cheered me up as I have none of those either these days (this is on an Emu Oil Well product with oregano and tea tree oil, applied once or twice daily, plus, I suppose, ongoing inner peace work not targeted at LS specifically), AND recently I've been experimenting with self-pleasuring and my clitoral hyper-sensitivity seems to have gone. It has definitely shrunk though into its (pretty fused) hood, and I'm not sure what can be done about that.
Again, I really appreciate your detailed reply about EFT, it's inspiring.

I was diagnosed with genital and extagenital L.S. in 2008.I inittially developed a large circle on the site of a bite, this circle started to spread outwards and become white in the centre. My G.P. thought that this was limes disease. I then started to get lots of strange bruise like patches all down one side and on one leg. After unsuccessful treatment with antibiotics was refered to a skin speciallist who diagnosed L.S. and said that he was sure that I would have signs of this around the vulva. I was totally shocked at the damage. Cant seem to tolerate steroid cream, any suggestions of alternative creams to help?

I was diagnosed with LS less than a year ago. I just turned 23 and found out about my LS right before I was getting a biopsy to see if I had HPV. I've only been with one partner and still feel a great deal of guilt around this entire situation, although I'm feeling more and more happy about who I am which seems to lessen my feelings of guilt and shame. Everyday I love myself more and find that caring for my body is something of a natural desire when I love myself more. Nevertheless, I could do more. I need to go to the Gyno, but can barely afford it. I need to get some help from someone but can't afford that either.

I am with a man who I love, but the problems with LS coincide with problems we had and with emotional trauma I experienced. I am glad to have found a place where I can talk about this with others who understand. We are all doing the best we can. I love you all and wish the best for you!

The greatest tip I can give anyone is Yoga and meditation. I have found great emotional and physical relief from this practice.

So after being in remission for 3 years, the symptoms are back I am using the sterioid cream (just such a small smear amount) on the clit and surround tissue. For about 8 weeks now. I go back to see the nurse today for a check to see if it is time to cut back on the steroid. Also have some sort of IC and vulvadynia. That comes and goes, and sometimes I think it is relational to food and sometimes stress. Probably both. I am still in therapy and talking helps all sorts of issue. But obviously not always these problems. I will post more after my check up today.

Hi Christy52,
So sorry to hear that. good luck with your checkup...

Welcome kuanyin and good luck to you too with your research... there are more active forums than this for LS if you google around - but I kind of like this one as it's more manageable :-).

I am feeling down at the moment -but that's because I'm procrastinating on some things I need to do and that always does my head in!

The one thing I've discovered since I last posted that is AMAZING is a body-centred technique called Focusing which you can do by yourself, easily, or with a mostly-silent partner who just holds space for you. I highly recommend a book by Ann Weiser Cornell called The Art of Focusing.

Kuanyin if you're looking for a way of dialoging with your body and emotions without paying expensive professionals (who often don't know how to teach people to do this anyway!) then you might be interested in learning this, and then getting into a 'focusing partnership' with someone. I lived in a meditation retreat for several years and this is something different to meditation, although it harnesses one's natural capacity for awareness and love.


I love being able to access my inner world, symptoms, emotions, inner critic etc with such empathy, gentleness, and respect- rather than trying to change myself the whole time.

And of course, old habits die hard and there's a period of re-training :-)

Love and strength to us all,

sarita

Sarita,

Thank you for your comment, I really appreciate your support! I have developed a great deal of personal awareness and insight on my own and I would love to look into this. I think perhaps I might learn better on my own or with a partner who I really trust. I will check out that book.

As for procrastinating I am the same way and sometimes we just have to make ourselves do something. And how wonderful it will feel to be done with it!

I really enjoy this forum. When I first found out about my condition all I found online were horror stories of lives torn and shattered by LS. Here I feel people have taken their situation and learned and grown from it. After all, what more is life? I really admire everyone here who has worked so hard to find their way to deal with this disease (and who knows? maybe it is a blessing in disguise...Maybe it is teaching us how to love and respect one of the most sacred and beautiful parts of our bodies...)

Thanks for sharing and I will be sure to report back when I discover knew things.

By the way I find that when I am most balanced and happy I do not crave sugary foods nor am I stressed. During these times I have no symptoms! There is hope!

Hi Kuanyin
I so agree. Metaphysically I see the body as an outpicturing of the mind/emotions/spirit (you could call all that 'Mind' with a capital M. However I often habitually see it as standing alone and then get sucked into treating symptoms rather than going for what's underlying it all.
Treating symptoms is good - it's just not the whole picture.
I have so few symptoms (I'm single mind you - I'm sure I'd know about it if I tried to make love!) that it's easy for me to forget/ignore LS. I chug along with my evening emu oil / tea tree routine. Recently I've changed it so that when I apply it I do it as a real 'hello' to that area and an honouring of it. I also make sure to rub over my clit a little as I do so - as a hello and also to keep it supple.
I had a look at it the other day and was amazed - it did actually look a little LESS fused! i wasn't sure if I was hallucinating but it was my instant reaction - Wow! that looks better!

My next step is to remember to apply it twice a day, not just once; and to take myself off to my gynae. I'm sure there has been fusion and closure of my vaginal opening since we last met a few years ago and part of me just doesn't want to hear her reaction or verdict. And, it would be good to hear her point of view and treatment options.
Then I'm going to use focusing to go deeper into what's going on.

I'm learning it over the phone with a woman in Costa Rica who offers really cheap rates - Suzanne Noel. I found out about her at this site, which also has a good article about focusing (and EFT which I think can be helpful too). She can then put you in touch with someone to form a focusing partnership, is my understanding. I recommend her.

http://selfheal4me.blogspot.com/

I also really agree about this forum - my gynae told me nothing about LS when she diagnosed me, and when I read the horror stories on other forums I had a heart attack! the fear!!! my God.
And, I have lived some of that- I've had outbreaks that I wouldn't wish on my worst enemy. But the mental terror, anger and panic really does nothing for the poor old body.

Yes, being balanced and happy and off sugar as a result is the way to go! I'll tell you when I stabilise there!!!!! :-)

Sarita

Hi . Hope this is the right place to post as the last post seems to have been in 2009.
I need information please as I am getting to the point where soon I won't be able to pass water.
I'm 72 and started with lichen planus about 7 years ago. First the left leg,which looked like giant ulcers but were neither painful nor itchy - then the ankles and wrists,small hard reddish lumps. Then itchy scalp and sore inside the mouth.A few red lumps on body and back, not many though.
As these gradually went, got really itchy patches above both elbows. To this day I don't lean my arms on any armrests, as though the itchy patches were above the elbows, it was leaning my lower arms on things that triggered it.So I know the pressure places are not necessarily where the resulting sore/itchy places are!
Then, using steroid cream for these, one morning I discovered to my horror that one of my inner labia had all but vanished, shrunk to a tiny flap of skin. Okay, you all know the horror. Sclerosis. I know I am not alone with this any longer. I'm glad at last I have found people who know what it's like.
Since then it has gotten much worse, sore, raw, adhesions, distortions. sometimes I've been able to forget about it for most of the day, other times bad flare-ups, when passing urine feels like pouring boiling acid over raw flesh, and can't sit down properly etc..
Torture.
I can no longer feel for possible cancer lumps. The opening is too small and painful now, and in desperation I tried to pull the two sides of skin apart to widen the gap again so I could continue to pass water. I tore it a bit but gave up as it was too painful and started bleeding. It is such a horrible affliction.
I can't do this myself.
If I get it cut open with an anaesthetic, surely it will just seal back up again? Does anybody know where I go from here?
In the meantime, thanks to your comments and research, I have sent off for some pure emu oil, thank you.
One thing I have found I can do, the mind over matter thing.
First thing in the morning it is usually excruciatingly itchy in the vulval area and I just have to rub, then it's sore, but...
when I awake in the morning, before I even move, there is usually no pain or itch...so I tell myself that getting out of bed and walking around will make no difference, why should it...no pain now, no pain then...and it does work!! If only I could will it gone altogether!
Thanks for listening. x

Hi Annpann,

I have just been back to my gyno as I have annual checks. He also said that more often or not LS is exacerbated and hand in hand with severe candida infections which is consistant with your symptoms of ichyness and causes the inflammation which is a primary cause of fusing. Since I have controlled the inflammation and candida my fusions have competely stopped. This is why stress makes it so bad. The best thing you can do is go and buy or get prescribed multiple oral capsules for candida. I take about 4 a month to keep the levels low (i developed an allergic reaction to candida as well and so I have kept sugar out of my diet and if I slip up take powderful antihistimines). Take several (not at once). like 1 every 3 days for a couple of weeks. Use the Emu oil. Take out the sugar from your diet and also refined flour. Try anti histimines to see if there is an allergic reaction but don't change several things at once. Becasue candida is often the culprit ... that is why the steriod creams make it worse. They grow candida! The anti histimines I use are fenaflexadine (something like that anyway) loradadine or any of the others don't work at all. Anway good luck. A few things to try :)

Thanks for your kind reply xhally. I shall get hold of these candida capsules a.s.a.p..
I've had periods of not much fusion at all, several months at a time, only the hurting and itching...then all at once the fusion takes off in leaps and bounds.I even wonder if there is some anti-stick agent we could use at these times to thwart it. Not WD-40 though! Ha ha.
But who's laughing? It's not funny this wretched thing.
Okay, onwards and upwards. I think I will need to be cut though. It has gone too far.
Thanks again. good luck with yours.

Thank you for sharing all your information. I am new at this. I was given a steroidal cream for LS back in 2008. Recently new Dr. suggests doing a biopsy to make sure that it is LS. Does anyone know if a biopsy is completely necessary or if this is protocol before all LS dianosis.
Thanks

Hi Clueless.I wonder what else your new doctor thinks it could be?
If he/she can come up with a viable alternative with treatment to boot, then go for it by all means.
Not me. I diagnosed myself from reading stuff on the internet and the first doc I saw admitted ignorance and had to look it up on her computer ( which I respect).
I don't need a biopsy to convince me. If I had any strange lumps though, on top of the usual stuff,that would be different!

Thank you annpann... that was some helpful advice. There is nothing unusual in addition to what seems to be LS. I am pretty convinced that is is LS and apparently the first dr. thought so as she prescribes a steroidal topical for it.
Thanks again.. I will think about this.

Just thought I'd put my thoughts on here in case they are of any help to anyone. I was diagnosed with LS about 8 months ago. The diagnosis was in the vulva area but I soon had other outbreaks, anally and in my cleavage. In desperation I've looked around like everyone else for relief from this crazy disease. I threw everything but the kitchen sink at it. Amongst the things I tried, vitamins therapy, diet, beta glucans, emu oil, neem oil, flax oil and then I decided to try MMS (Miracle Mineral Solution). After about three weeks the itching and rash in my cleavage virtually disappeared. I know it is still there, but it is not causing me any discomfort at all. It hasn't done anything much for the other areas at all, but I live in hope. Maybe they need longer. MMS is cheap as chips, 20 dollars worth gets you a supply for about three months or even longer. I will continue to take it and keep you updated of any further improvement, should there be any at all. The other thing I wanted to mention, I had manic itching in the lower regions, nothing worked, so I stripped off to let air get to the affected parts, and like magic, within two days the itching had virtually gone, and the sores and cuts had healed up. We have to let air get to this as much as is decently possible. I wander around the house with a loose t-shirt and it is amazing how much peace this has brought me regarding the itching and sores.

I’ve been able to reverse Lichen Sclerosis by going on a Low Oxalates diet. Steroid creams do not work. After being on a low oxalates diet within a month my LS has reversed by 50%.. and still healing everyday! I wrote up a page about the resources and my experiences with battling Lichen Sclerosis – you can check it out by going to lichensclerosis (dot) wordpress (dot) com. I hope this others – I never thought in a million years I could reverse LS but it’s possible. If you have LS then you probably have a leaky gut. Read the resources on the blog mentioned above.

Thanks you for that information Healthygirl110. I have not yet looked into Low Oxalates but have discovered in the last few months that I am histamine intolerant. And working on that basis, I have been on a low histamine diet and taking Histame capsules, available at iHerbs or Amazon. For me this has provided a huge improvement, and may be of help to others as well. I have gone from having bad days and bad nights to having all good days and just minor itching at night. I have noticed that the white patches in my mouth have disappeared, and itching all over my back has gone. All sores have gone - and I can completely erradicate the symptoms in the day time, but still have a bit of work to do for the night time itching. Whether it is possible to get a cure I doubt but it is possible to get an improvement. Thank you for the resources I will be looking into all you suggest. I will never stop looking for a solution to this horrible disease, and I feel every sufferer should be doing the same. Again many thanks for your input.

Just before I start I am new to this site and am not very computer savvy so forgive me :)

So I have had Lichen Sclerosis for over a year now and tried EVERYTHING!! Yes the steroid cream from the doctor helps the itch and ache but the thinning of the skin and the extremeness of it (never mind the hideous smell) is not not pleasant.

So my daughter had told me about this Aloe Vera based company who sell creams and drinks for skin disorders and have had amazing results and is apparently the worlds best kept secret. I thought it was a scam and had my doubts and refused to put any money into it, especially because I hadn't heard of it before and thought itwouldn't really have any good results. But she bought me two of the products and let me tell you...AMAZING results!! No cracked skin, no horrible smell, no thinning of the skin, no unnatural chemicals. Simply amazing!!
I thought I would share this with everyone as I know how awful this is to deal with day-in-day-out.

I drink the aloe based gel drink twice a day (which also gives me loads of energy) and apply the aloe gelly to the 'area'. I am telling you ladies it is sooooo gooooood! I feel like I can live again.

Apparently you can only buy it through a 'distributor' kind of like Avon. So, if you don't know a distributor my daughter gave me her ID to share with you all so you can access it.

She said to go on to the forever living website (the store) whereby you can shop online. She said to click the products you want and then before you check out there will be a little box saying distributor ID (which apparently you need to buy the products) and type in this number 353000082804.

She recomends (in the drinks section) the Aloe Vera Gel, and (in the skincare, body section) the aloe vera gelly. There are also other products (which I have not used so can't recommend) that would help like the shower gel and soaps etc which have a nice scent but will not irritate the skin.

Hope I helped :)

Chloe

I had quick result (well, in a matter of days relief, and in few weeks complete cure by using Perrin's products.(with a combination of 'creme complete' and 'Perin's blend' That was about a year ago. Unfortunately it came back, and much worse, and this time I can't even apply the 'creme complete', burns bad. However their 'Nutra Cream' seem to calm the itching and burning alike. The problem is that I have been applying it for weeks, and no change...and too painful to use 'creme complete'.
Thanks to all for the tip: I will try Beta Glucan, and Renova, both. You all know how desperate I feel...and I am looking forward to read more about products may get rid of this horrible condition.