Lichen Sclerosus

Hi Blackcurrent,
Thanks for your question. I'm afraid I can't answer any of your questions, but I have heard of the National Lichen Sclerosus Support Group which may be worth a visit on the web.
Good luck, wholewomanuk

Hi Blackcurrent: I am new to this blog and just read this one part of the thread. I have always thought I might have something similar but have never been dx. Although it has been a confusing two years since I finally was able to dx my prolapse on my own and yet these other symptoms like LS have been with me this whole time too. Actually it all came on at the same time so I have been trying to tease it out. I would love any suggestions of relief you have gotten and how your symptoms appear. Mine are infrequent but annoyingly present when it comes on. I have different diet modifications such as less caffeine, etc... and only wearing cotton underwear. At first I think it is working and then comes back.

I too was given a steroid but never used it. Now I am pregnant and would like some other suggestions for sure. I will definitely try the tea if it won't harm my baby.... etc....

Thanks.... I am glad i am on the blog at last!

Welcome Blackcurrent and Yogimae,

Please see my blog post here: http://wholewoman.com/blog/?p=1041 to read more about vaginal-vulva health. I have taken my LS paper down for revision, mostly to add this information about glycogen.

Red clover is not the entire answer to LS, but one more neutralizing element in the balancing of these hormones. I no longer mess with probiotics, as those were not nearly as effective as a tiny bit of honey applied vaginally once or twice a day (twice is better if your symptoms are severe).

****Yogimae*** I believe red clover is contraindicated during pregnancy as it can effect embryonic sexual differentiation. Try a bit of good honey...sounds crazy but it is highly effective.

Christine

Hi dearie,

Deep breath. I am happy using red clover tea and a tiny bit of honey comb once or twice a day. The honey makes the vagina/vulva so much more comfortable - mainly taking away the dryness, burning and most of the itching - the only time I itch is occasionally in the middle of the night when LH levels are high. I think my case is pretty classic too and the whiteness is still there. From everything I've been able to determine, I believe the direct cause of classic LS is low testosterone. This in turn is probably caused by stressed adrenals that are not able to contribute their share of androgens. I also believe that caffeine worsens the situation by increasing levels of SHBG - binding testosterone so it is unavailable to tissues. I keep threatening to give up my beloved tea - but haven't yet (we all have our poisons!) High LH levels in the post-menopausal woman also worsen the disease. Being very regular about food and sleep (melatonin naturally opposes LH) is essential. All I can offer is to try all these things! Learn to "listen" very closely to your body and you will learn what aggravates and what helps. Protopic turns down the immune system! This is like cutting down the forest for a few logs for the fireplace. It is a downstream treatment that does not take into consideration the etiology of LS!

If you are scratching yourself silly at night and causing long-lasting sores on your vulva, you might be courting a more serious problem. If not, as far as I can see this condition can be managed through diet, lifestyle and a few extremely natural remedies.

Good luck and let us know how you do. Oh, and I think the dermatologist needs to spend some time in the medical library.

Christine

P.S. If using honeycomb you do have to remove the little, pure pieces of wax every couple of days in the bath or shower. :)

I used 100% raw organic Manuka honey 2 nights last week. I felt immediate relief then and much better the next day, too. (I'm having chronic yeast/bacterial infections + the whole area is generally irritated from all the medication.) But - am wondering if the honey is considered sugar. My doctor and pharmacist both said to treat yeast long-term to limit sugar as yeast feeds on it. Have cut it out of diet, but is putting it in the vaginal area going to encourage yeast growth? Any thoughts?

Hi Blackcurrent

Life has handed you one of those curved balls. Keep swimming. Keep breathing. The alternative is not very nice.

I go through periods of time when I wake around 3am and cannot get back to sleep. My mind cranks up, and won't let go. I am sure that if I had LS I would be itchy too. It is probably my high LH levels as well. I have found that taking two Remiferin tablets before bedtime. This is standardised black cohosh. I also cut my wine consumption in the evening right back to maybe an egg cup full, I don't wake as much, and if I do, I can get back to sleep sooner.

Fortunately I have the luxury of not having to get up early for work, so I can sleep in, or get up and do something and go back to bed later when I feel like sleeping. That only happens in summer when the first bird songs rouse me, then the sky gets light and that's that for sleeping.

If you can stay asleep you might not notice the itching as much, and might indeed sleep through it. All these things are easier to manage when you are not sleep deprived. No guarantees, but if you add every little factor together you might get somewhere.

Christine, have you managed to get your hands on the honey lozenges yet?

Louise

Hi Stella,

Glad to hear things are a bit better. I would avoid milk protein too, of which there is virtually none in butter (pure fat) and very little in a good yogurt in which lactobacilli have broken down milk proteins into essential amino acids. I don't believe LS has anything to do with candida. Rather, it is an autoimmune response to an hormonal imbalance. For me, cane sugar aggravates the imbalance, while honey seems to restore it. So much to consider - I'm still working it out as well.

Christine

Hi
I was diagnosed with Lichen sclerosus a few years ago ( I am 57).
The doctor told me to use the steroid cream "clobetasol" to make it better...but for me...that made the burning and itching much worse. So, after a short while, I stopped using the clobetasol.
After that, I tried all sorts of oils (olive oil, emu oil, almond oil, etc.) ...and that did not work either.
Then, I came across a LS support group online that recommended rubbing a very small (pea-sized) amount of estrace (estrogen) cream on the affected area, 3 times a week. Most of them said they had great sucess with that. So, I talked my Gyn into letting me try that for awhile. And to my surprise, the LS got better very quickly.
I was so happy to have found a solution that worked! I don't know if this approach will work for you or not. I Just thought I would let you know----It's nice to have options.

Christine,

What is the simplest method and most inexpensive type of honey to use for LS? I read that you use honeycomb. Could you please explain how you would use this? Do you get it from a local honey producer? The special honey mentioned in the forum is very expensive and is liquid. Is your LS still there and itching? Mine is getting worse. How often do you put on the honey? Is it O.K. to throw some water on the vagina area after going to the bathroom. Or is this a waste of time or bothering it? Does wearing organic cotton topped pads in my cotton underwear aggravate it? I have a lot of anal itching now. I am feeling very stressed and anxious. My vulva area/lips have fused. How serious is this and will it quickly continue to worsen. Will my urethra also close? Do you know of a good gynecologist or ? in Indiana who could help me to track my LS progress? I do not want to return to the doctor who previously kept me on the steoid cream for years and made it worse. He did not keep me informed about this disease. I live in West Lafayette, IN. I do not have health insurance and am very limited on money to spend for this disease. I am also trying to find a way to make more money to pay for this health treatment. Could you please advise me? I am 62 years old and single. How about silver shield gel or black walnut capsules (suggested by local health food store). Thank your for your time and help! God bless!

I was diagnosed with LS two years ago, and I have been using clobetasol, it did help the itch in the begining, but my LS area is still white, inflamed and very sore, by good luck I read Cristine's research and I was able to buy red clover in capsules, the brand is NOW and are 100 capsules of 425mg in a jar and the label recommends 3 capsules 3 times a day. I was trying to figure out how many capsules I should open and mix but I had no idea, so I opened 30 capsules and mixed them with a jar of 7 fl oz of 100% Pure Lanolin the brand is NOW. I carefully mixed the powder into the lanoline and it is a dark green cream that is thick and easy to spread and it does not stain permanently the cotton underwear, I could not prepare the balm and this mixing of the powder was what I have been using for this last week and a half and I am also taking the 9 pills of red clover every day and I am already feeling a lot better! I am a 70 year old grandmother and LS has made my life miserable with the pain, no more lovely walks and even my underwear was hurting, the atrophy and tearing of my labia and the anal skin kept me from normal life activities. I rinse only with water and I wash my hair in the hand basin to avoid creams, soaps and perfumes from shampoos and conditioners on my body skin, I was told it is a autoinmune condition and I am starting to follow the autoinmune protocol that is outlined and so clearly explained in the blog called The Paleo Mom and also I am drinking Kombucha tea, Kefir and yougurt but avoiding the rest of the dairy to help repairing my leaking gut that is the origin of the bad proteins that are activating my autoinmune sistem.
I am very thankful for the help the red clover is giving me and a big Thank you Cristine! for sharing this wonderful information, If you can possible give me a idea as to when I should stop taking the 9 capsules a day or stop applying the cream I will be very grateful, I have not been able to get the red clover tea yet . I use for many years premarin cream 1 unit twice a week. The final diagnosis was a relief because I had pain and itch most of my life, all kinds of antibiotics were prescribed and they will help and then it will start again .. at least now I know what is happening inside my body . Thank you again and I hope you can advise me Solita

Hello Faithe and Solita,

Everything I know about LS is included in the article "A Natural Remedy for Lichen Sclerosis", which is back in the Library. You can get to the Library by clicking on the Resources link at the top of this page.

The red clover helped immensely with anal itching, which was an early and dramatic symptom soon after I had my last period. Once my beta receptors were being flooded with phytoestrogen instead of metabolites of estrone some of the worst symptoms went away. Honey - a dab a day vaginally, and vinegar - a quick vulva rinse every couple of days, has kept me virtually symptom-free.

Menopausal vulva dystrophy is extremely uncomfortable - and demands attention, which I found most helpful from natural foods and herbs. If treated it is not the dire disease often portrayed by the medical system. Think about all the vulva "architecture" that was created over the course of puberty, suddenly without the primary hormone that made it so. It was my experience that the area changed radically. What is left is smaller, thinner and more fragile. I consider the condition one of aging, not disease.

Christine

I wonder what that is about?

Thank you very much Christine!
Your message is perfect! I will find your article in your library to be able to understand what is happening in my body, I am almost deaf and unfortunatelly I can not find text below your videos, I enjoyed watching how you prepared your bread and the english muffins, but I miss all your descriptions of ingredients and nutrients.
I was reading your message about LS being hormone related to testosterone, what type of food will help my body produce this hormone?
Thank you for all your help, every day I am feeling better thanks to your generosity !
Solita

Thank you, Solita, and I'm so happy you have joined us.

While we produce only about 15% of the testosterone that men do, that little bit is extremely important to female health and strength. Some of the things you can do to sustain healthy T levels are (1) avoid hysterectomy and ovarian removal, as half our androgens come from the ovaries. (2) Take good care of your adrenals, as the other half come from them. (3) Try not to carry too much fat, as testosterone is turned into estrogens peripherally - mostly in fat tissue. (4) One of the foods that is thought to increase testosterone is raw egg yolk (sounds horrible, but is actually delicious whisked into a bit of fresh-squeezed orange juice). There are other foods - allicin from garlic, for example. Your body probably makes plenty of testosterone, just make sure your hormones stay in balance by watching stress levels.

Thank you Christine !!!!
The raw egg yolk sounds great to me!
I used to prepare mayonaise with egg yolks and add olive oil, when it was ready added well mashed fresh garlic into it to have a great spread for sandwiches called allioli, now I have to prepare it again! Delicious!
I was able to read the file update inside gmail, the downloading of the file was impossible, I will read it again to learn more.
Thank you for sharing your knowledge with all of us, you gave me hope that I will have my health back!
Solita

Down load of article went OK. Have read it, really good stuff. Have it on my desk top so can absorb some of the details more slowly. Mostly straight forward, easy to follow. Well worth the read and we go back onto the red clover tea.

Many thanks.

I am very happy, my skin is better and the ripped places are healing! I will start having my walks again!
I was able to download the file and I can not say thank you enough times for all your help!
Solita

Blackcurrent,

I know your post is some time ago, but I feel just like you did when I got my diagnosis. I am soothed by reading your post and see that you are now doing better. I am anxious, don't know which way to turn and not sure best course of treatment. Of course the physician that diagnosed told me to use the steroid Clob for 2 weeks and use vaginal Estradiol. I want to stop the progression if possible ect. I am so thankful that I found this website and forum. The doctor told me I am disfugured and that will not reverse and when I am 70 the LS will just get worse. I am only 57 so that sounds so bleek. Thank goodness for Christine and the others on this website. Any information is helpful.

What is the best source of obtaining the phytoestrogens? I want to follow the proper course, but am confused on best path of obtaining the proper phytoestrogens. Christine I read your LS paper and thank you so much!!!!

Hello,

My daughter has just been diagnosed with LS at the age of 17. Unlike many others she has the raised white spots mainly on her chest and is completely symptom free of the genitalia. These spots do not cause her any discomfort or itching and she has just been prescribed Clobetasol cream to start using on the newer active spots as told probably too late to use on the old spots. I was wondering if all the natural treatments mentioned are just purely to relieve irritations or do they also work to help reduce the LS itself?
Most concerning of her symptoms is that she has a large lesion on her cleavage line in which the dermatologists are confused about. I know it is not uncommon for women to develop sores in the vulva area, but they claim to have never seen anything like it before. The biopsy results show that it has all the characteristics of LS but they don't understand why it has manifested itself in the way in which it has and where it is. She has been asked to attend their bi-monthly meeting of consultants within the area as, basically their guinea pig for educational purposes. I am hoping one of them will have seen this sort of lesion before and will be able to present a solution. Does anyone have any thoughts or any similar symptoms? I have yet to still do a lot of reading and research on LS so still a bit in the dark about it all.
Thankyou!

Hi Leeky - I can't offer you any more help besides what is already on this website and forum, but, have you downloaded Christine's newly revised LS article? Go to the Home page and look for LS on the left-hand side of the screen. Also, she is preparing a new video on the subject which should be out in a couple of weeks. Apart from that - maybe you will get some other responses here. You might also go to the Store tab and schedule a personal consult with Christine. I know what a complicated topic this is. Good luck to you and your daughter. - Surviving

I have kept my Lichen sclerosis under control with a "pea-sized" amount rubbed into the outside area, three times a week

...and I wouldn't be surprised if that pea-sized amount has contributed to your bladder symptoms. The bladder is very sensitive to estrogen, which is an anabolic steroid - meaning it builds tissue up and, regarding supplemental estrogen, not necessarily in ways nature would have.

For years, I have had no problem with rubbing a small amount of Estrace on the outside (3 times a week).
In addition to the Estrace, the Lichen Sclerosus group had also suggested a small amount of testosterone (2 times a week) in the same area---but I was never able to convince the gynecologist to write a prescription for testosterone. I was very happy that the Estrace worked on its own.
On the other hand, when a Urogynecologist recently told me to use the estrogen on the inside to help with atrophy and bladder symptoms, that did not work out at all. The estrogen on the inside immediately caused major bladder spasms and pain. So I stopped using it that way as quickly as I started.
A very small amount worked nicely to clear up the lichen sclerosus on the outside. But I will not use it on the inside again.

So you have clear data that Estrace causes severe bladder symptoms, but you don't think when applied to the vulva it continues to affect cells in the bladder? I'm not picking on you...many women believe it stays right where it's put, but very good science challenges the claim made by many doctors that vaginal/vulva estrogen has only a local effect.

Pranachi, if using a little Estrace internally can give Louise hot flashes, then you can bet that using a little on the outside is not going to be much different from using it on the inside. I too was a bit shocked to read that it gives you major bladder spasms, and yet you are still using it and aren't seeing any connection between that and the problems you have now?

I would recommend Christine's Vulva Vaginal Health DVD for you. Also, click over to the Blog page and put the word "glycogen" into the Search box. An excellent article will come up. - Surviving

Yes, Pranachi, my doctor insisted that I use Vagifem in the vagina for a month prior to a repeat PAP smear last year. I used it for four days and I started getting hot flashes during the day, which I had never had before. I couldn't wait to stop. They took a while to settle down again after I ceased using it. The PAP smear was satisfactory and there weren't any abnormal cells.

Louise

I was diagnosed with LS in late May. The gynaecologist prescribed the steroid clobetasol which I don't want to use given what I have read about. So I consulted with a naturopath who recommended high doses of Vit A for 1-3 months (30,000 IUs twice per day). My LS is "silent", in vulva area - I wouldn't know I had it if my doctor had not discovered it whilst doing a pap smear.
Does anyone else out there have any experience with using Vit A? It is toxic to the liver in high doses, thus the limit to take it for a short duration.

Saludable, Christine has such vast experience in this area, I am surprised that you have not tried her protocol in your quest for natural solutions. - Surviving