Lichen sclerosis _{Page 2 of 5}

I have found that pure Emu Oil helps to stop the itching and also moisturize and make the skin more supple... proportedly there have been no cases of adverse side effects. Thought I'd share this with you as I have tried some prescription creams with no effect. I will check out the Beta Glucan... sounds interesting.

Researching for a friend without computer. She has purchased Beta Glucan and begun using Tea Tree Oil as a result of some of the info found here. The Tea Tree Oil is giving some relief, but she is not sure if she should use it full strength. She would also like to know about the application of Renova, as it seems to discourge use in that area, according to it's description. She has been diagnosed with Lichen Sclerosis by gynocologist. It has affected her vaginal and rectal areas. Any suggestions for help would be appreciated.

I use tea tree oil full strength on vulva-but some recommend to use it diluted. If it makes your skin sting then dilute it.

Im 31 and have suffered from LS for as long as I can remember. The first time it was suggested I had LS was when I was 18 after having seen several gynacologists with symptoms of itchiness, skin discoloration and thinness in the vaginal area etc, I was refered to a specialist who used me as a guinea pig for a group of student doctors who had never seen LS before. The whole experience was humiliating and I've never seen a doctor since regarding this problem. After having read others experiences on this website I consider myself one of the lucky ones as it has not spread past the vaginal area - yet! I do however get sores/scabs on my scalp which I thought was due to servere dandruff until I read a piece by 'mahunt' who has the same symptoms. for this I use a tonic called scalp remedy made by Aveda - its an antidandruff tonic but unlike other antidandruff tonic/shampoos its made purely from flower and plant extracts so less likely to have any side effects, it really works for me and I hope this info helps others. As for my genital area its a bit more complicated. More times than not when I have sex with my husband the skin will split making it very painful not to mention destroy my sex drive which in turn has a big effect on our relationship. Although my husband is very supportive and does not hassel me for sex, I feel frustrated that I cannot fulfill his sexual needs. any suggestions will be appreciated. We have three children together.

Desparatehousewife
I was diagnosed with ls 2 years ago after i pestered every doctor that i had. I had a terrible experience with one and some students also and I know what it is like to feel humiliated. Please please go and see someone about your condition if only to educate your GP, it is really important that you get it checked every year by someone who knows whatthey are looking at. My symptoms are controled with steroids but on occasion i have flare ups that leave the skin bleeding and sore to walk. no matter what you do it wont go away. Sex is uncomfortable too as i think there has been some narrowing of the vagina which is also a symptom. I am married and have 2 babies both born 3 years appart by section as I decided the skin would not heal from a vaginal delivery. PLEASE GO AND SEE SOMEONE. does anyone know of an active support group orhow to start one?? Chin up

i had followed another thread that dealt with lichen schlerosis, and strangely, it had more helpful info than this one, but was under the header "herpes" (just type LS into google and it pops right up).

i'll tell ya, through that thread and a lot of googling, i was able to piece a lot together. i agree with roxy about the long-term antibiotics. i was on doxycycline for about 6 months to treat acne/boils on my inner thighs and butt, when the first outbreak of LS came. my doctor of course tested me for a yest infection, and when that came up negative, just advised hydrocortizone. this helped the first few outbreaks, but the last one was a month long with full on itching, and white spots.

through my own research and not stupid doctors i finally found out what i had, but no treatments. thank you ladies for posting and comparing notes, it has helped immensely. i immediately stopped taking the antibiotic, and i purchased some beta glucan, and after about a week or two on it, it cleared and i've been in remission for about a month. also the acne has remained clear as if i was still on the doxycycline.

FYI, LS only effects vaginal skin and is not contagious. if left untreated, worst case scenario, the labia and clitoris will begin shrinking and the white spots will grow. there is no cure, and no known cause. it is not sexually transmitted. the steroid ointments are better than nothing. i strongly feel my condition was related to antibiotic use, so approach those with caution. i believe that this condition cannot be bacterial, as many people have gotten this or gotten worse while on antibiotics. i could be wrong. i've read that LS is perhaps an auto-immune disorder. makes sense to me. if you have issues on other bodily areas such as breast or stomach i don't think that's LS. it effects the vagina only (also effects the penis).

thank you all for your posts, and get you some beta-glucan. i experienced some shrinkage, and i don't think that's reversible. i'm just glad it's stopped in its tracks for now.

Sometimes I wonder if LS is related to a systemic fungal infection. I also have scabs on my head (dandruff) and terrible eye infections. Apple cider got rid of the dandruff but it just keeps coming back and the eye infections are non responsive to antibiotics. I have discovered recently that I have severe pancreatic deficiency which might explain the weak immune system. I believe gluten did some of the damage. I have the dq7 gene type, prone to virulent intolerances to both infections and foods. Others might benefit from pancreatic function testing. I also have low globulin. Thanks for the advice on beta glucan, I'm looking for a yeast and gluten free source in case any one knows of a goodie and cheapie?

Hi I am new here. I will say a little about myself and then say what I have to say. I was diagnosed with LS about a year ago. The GYN that I saw says it appears I have had it for a long time but it only recently started itching before I saw him. Now this is a weird thing. I am on a cream that seems to help most of the time, but last year and this year while on vacation in Mexico it never bothered me at all and I didn't need to use the cream at all for the whole two weeks. Now I am wondering if it could be one of two things. 1 swimming in the ocean. Could the salt water be helpful to this condition. I know it sounds weird but just asking. 2 I take acidopholis all the time while I am in Mexico to help with not getting tummy troubles while there. I am wondering if this could be what is helping. Anyways just thought I would throw that out there and get an opinion. Many thanks in advance and I really find this website the most helpful I have found since being diagnosed.

kiminpenny

Read "Roxy90's" reply on the 2005-05-24 for help.
http://www.abchomeopathy.com/forum2.php/12294/

God Bless,
Tim

I have been diagnosed with LS for a little over a year (although I have porbably had it for years). The itching was driving me crazy. I noticed that it was especially bad along the hairline. So I shaved. I left a little hair an the nos pubis but shaved the labias, anus, perineum, everywhere else. What a difference it has made!!!!!
The catch--Keep up with the shaving or the hair growing back may make you itch.

go sit in a bath, shave, stay in the bath for a little while, dry off. sometimes I will use vaseline to help small flare ups. But the shaving has really helped!

I have had some luck having sex with LS if shower and wash my perineal area with olive oil before sex and then use the oil as a lubricant as well. This remedy doesn't eliminate the problem, it just seems to make sex with it a bit easier. I don't usually have itching with my LS, only skin cracking or scraping with intercourse or sometimes for no discernable reason.

I have had LS for several years and use a topical steroid twice a day. When I am away from home and the itching gets bothersome, I use my own saliva to calm it. I know it sounds gross, but I go to the restroom, spit on my fingers and rub it on. I works like a charm. Good luck, I hope this helps.

Hi..
Although I was diagnosed by a GYN about 2 yrs ago with LS there remains some contraversy amongst her, my Family Dr and a Dermatologist I saw. There is so little known about this darn thing they seem to bounce you around about it. I really liked the GYN and tend to agree with her diagnosis and she prescribeb 1% hydrocortisone cream which I take when I have a 'flare-up' and it does seem to help. I use it sparingly and only during flare-ups. The Dermatologist declined doing a biopsy when I saw her as I was not having a flare-up and told me to return if/when I did????Right...as if I'd get in when that occurred!!So that's why it's still questionable I guess. However...I wondered when these bouts occur besides the redness which completely circles the outside of my anus and around the vagina area and is somewhat itchy and VERY hot (no white spots part of the confusion with the Docs I think) I feel as tho I am 'swollen' and seem to have more of an urge to go to the bathroom...in fact sometimes it's almost like a UTI coming on...do any of you experience this at all?
Any input you can give me would be greatly appreciated...we all need to stick together on this
Thanks
Bev

Help, I have had some frequent urination for over a month now. The cultures are always negative. I am not losing urine, just going all the time. A week and a half ago, I started have what I thought was yeast symtoms. No discharge. The clitoris is also slightly swollen and VERY tender. Now I have some burning at urination. Not so much that I am holding on, but definately burning. The OBGYN, says I have Lichen scleroisis. Gave me a cream for twice a day and then come back in a month for a biopsy. I do not have itching, just burning, and irriation around labia and clitoris. I have not white patches either. Now I have to tell you that I had not look down there since the 80's So I had nothing to compare. The Dr. seems to think that the labia is reduce in size. Does anyone have LS without itching. I am going to my Dermatogist tomorrow for a second opinion. Is there something topical I can put inside the labia for pain relief?

I also have been fighting the bladder problem. In fact I started with that first. I am not sure if I am imagening it all, but it appears to me that my labia is already disappearing. I was just diagnosed 2 weeks ago. I have had a punch biopsy a few days ago. Not fun. Should I start taking Beta Gluten now?

Could someone help me with my diagnosis. The biopsy came back Lichen Simplex chronicus and patchy lymphohistiocytic infiltrate! Yah, I didnt get it either. So the dermatologist put me on Pandel 0.01 instead of the .05 of the clobetasol I was using. Also, I am just this week taking Vesicare for frequent urination. The bladder actually came first. Then the Lichen problem. Can anyone shed some light on this? I appreciate any input at all. Thanks.

LICHEN SCLEROSIS & CANDIDA
I was diagnosed with Lichen Sclerosis several years ago, and I also had battled a systemic candida infection for many years.

I will share some interesting info that leads me to believe this needs to be treated holistically. I have noticed, as others shared, that there is a relationship with candida.

I believe the candida overgrowth can be the culprit. Candida causes excessive toxins in the body and can cause very small holes (intestinal permeability) in the digestive track. These immune system can begin to attack the escaped food particles and compromise the immune system further, therefore creating an overactive immune response.

If you have candida, then you will usually have bacteria & viral issues because candida compromises the health of the digestive system. I was intially treated for the bacterial aspect with anti-biotics, and the candida and fungal issues became much worse. Antibiotics are easier, but most MD's don't realize the backlash if your system is already compromised. It is best to find an integrative physician who will treat the whole system. Due to our high sugar diet and stress levels, candida overgrowth is very common in the US.

OLIVE LEAF EXTRACT, OIL OF OREGANO, and GRAPEFRUIT SEED EXTRACT act as anti-fungal, anti-bacterial, anti-viral agents, and can be very helpful, as well as BETA GLUCAN.
THREELAC is very helpful to restore a healthy gut and kill candida, as is APPLE CIDER VINEGAR.

You can research candida albicans to find out more. I hope this is helpful to some of you.

can any body help me please...its been nice knowing there are so many sufferers out there with this complaint...we all think we are the only ones...but please..can someone tell me where i can locate this 'beta glucan' in the uk???..i have been to boots and holland and barratt but to no avail...and is it in tablet form or a gel/liquid???

BETA GLUCAN is derived from the cell walls of baker's yeast (saccharomyces cerevisiae) and from the walls of specific japanese mushrooms. Beta glucan is known by immunologists for its amazing immune enhancing properties. I have only seen it in pill form.

Here is a resource for purchasing a high quality Beta Glucan: aboutbetaglucan + com

I'm not sure if they chip to the UK, but they may be able to provide some resources.

Best of luck,

~ kristin

thanx kristen...i will look into it..let you know how i get on..

tried to buy beta glucan kristin but afraid i cant get it in uk...anyone know of anything else i can try that i can buy..pref in liquid form.or gel.........i had quite a big patch of soreness a few years ago but had it cut of with surgery.......now i just need the occasional gel/cream when it gets itchy....

For those of you in the UK I recommend Miss Wendy Reid of the Royal Free Hospital in London (who specialises in Lichen Sclerosus).

For anyone worried about the about the potential dangers of boosting the immune system with herbs, vitamins etc, she was VERY clear that it was FINE to boost the immune system. It would have no negative effect on the LS.

For those looking for an alternative to steroid creams: she had a student who had done research into tea tree oil (4/5 % - NEVER neat - and some people are allergic so patch test first - some burning sensation is normal) and it had proven that it helps skin elasticity, which is a real issue with LS.

I was using House of Mistry tea tree cream (no hidden nasties, parabens etc) and she was very enthusiastic about the change in my vulval skin.

Tea tree is of course also an anti-fungal, and candida can easiliy co-exist alongside LS.

I was also using steroid creams for a while, but when the course ended I just used the tea tree cream.

When I stopped using the tea tree cream she noticed the difference and berated me!

And, I would say that what has helped most with me is working on my mental-emotional state. I recommend the work of Byron Katie for calming your stressful thoughts - visit her site, listen to audio and video clips, and use her hotline volunteers (highly trained and, unbelievably, free!!).

An autoimmune condition 'down there' SURELY must indicate some kind of self-loathing...
So being loving to yourself, your mind, AND your body - realising it's not the enemy - is really helpful.

Stress definitely makes it flare up more. As does sugar in my case, by the way, and I'm not alone in this.

I would also say that although my LS is only very mild now - I came off steroids and tea tree cream at the request of my homeopath - I had a huge flare up when I first came off them. And, they WERE very effective in getting rid of my first bouts of LS.

So don't dismiss them.

You may come across scary cancer of the vulva stories.

Wendy Reid was also very emphatic that this didn't happen to people who were receiving treatment for LS, it was for longterm, undiagnosed, untreated LS where it was a risk.
Some people need to use steroid creams once a week, ongoingly, once the flare-up has resolved, and they manage perfectly well like this.

I would contact a support group and find a gynae and / or dermatologist who really cares and knows about this condition - that's what I did.

Good luck!

to christy, i also have lichen schlerosus and no itching, (except for very rarely) extreme burning and soreness, can't have sex or wear pants, etc. i don't have any white patches that i can see either. i just wanted you to know you are not alone.

Hi, I'm new to this site. I have LS and have severe pain, burning with mine, rarely if ever itching. I am worried though because the steroid cream seems to make it much worse, it hurts all the time. I started Threelac and a vaginal anti-fungal too because I also have a very persistent yeast infection. One of my doctor's has been very kind, but the one who diagnosed me doesn't seem to care that the cream hurts so bad. I really wonder if it will get better. I went undiagnosed for two years at the Urgent Care all the time telling them how much it hurt and no one even saw the LS. Which makes me so sad. I have been trying to think positively though and reading Louise Hays and such to help my mind. That has been truly helpful. Has anyone here tried Paladin cream? I read that it cures it - still waiting for it in the mail.
Has anyone gotten better on here? Does the scar tissue go away?

Hi prettykitty,
I am much better than I was.
I suggest you visit a uk site, the National Lichen Sclerosus Support Group, at lichensclerosus.org. There is lots of information on the site, and a message board which is a little more active than this one.
I like Louise Hay's work, and I also think it's important to work more deeply with your fearful thoughts than her work of affirmations goes; for this I love Byron Katie's work (you can google her and read her fantastic book, Loving What Is, which really helps with calming down stress and feeling peace). Stress doesn't help the body heal,quite the opposite; so anything that calms a frightened mind is a Godsend in my book, and Katie's work does just that.
Good luck, take heart that recovery DOES happen (there are success stories on the UK site - as well as the normal scary stories! - and the woman who runs it, Fabia, is a great example of someone who really has LS handled and under control.
Love and strength,
Sarita

Thank you so much Sarita.
Love and Strength back to you.
xo