Close

You must be logged in to love this post! Please sign in:

Close

You must be logged in to follow this post! Please sign in:

Jill (Dallas, Tx) on 12/27/2010
4 out of 5 stars

Lichen Sclerosus is a condition that I self-diagnosed myself with a few years ago, after much internet research and no help from my doctor. This is still such a mysterious condition, with little concrete medical data out there to refer to, but here are some of my observations and some things that have helped me quite a bit.

First, I believe that it is caused by hormone imbalance and/or auto-immune issues. Most people notice their symptoms begin with hormone shifts. For me, it was at the beginning of peri-menopause, and came along with other, more common symptoms of that. Along those same lines, the symptoms are always worse at the end of my cycle (pre-menstrually) and better towards the beginning of the cycle. Also, I notice my symptoms flare up (and have heard others report the same) when my immune system is run down or strained, especially if I'm fighting a virus (cold, etc... ). Interestingly, as several others here have mentioned, I also have a history of adrenal fatigue/chronic fatigue. So seeking natural hormone balance and a healthy, balanced immune system are, in my opinion, key to going into permanent remission.

Topically, I have found the most success with a cream called Perrin's Cream Complete, found on the Perrin's website (you'll find it if you google it). It immediately relieves discomfort and seems to help quite a bit overall with other symptoms. It is a soothing antioxidant cream that is very healing as well. It was originally developed to help prevent and reverse skin cancer, so for a condition with an increased cancer risk associated with it, this cream is a good one to have on hand. Also evening primrose oil has been helpful topically.

I have tried to adopt an anti-inflammatory diet to help with the auto-immune aspect: no sugar (very inflammatory and noticeably worsens LS), fried foods, junk foods, processed foods/fast foods, margarine or shortening. About a month ago I also eliminated gluten (mostly found in wheat) and either it's a coincidence, or that was truly helpful because it's better now than it's been in years. A whole foods diet that is loaded with vegetables and healthy fats and protein (which includes SATURATED fats: coconut oil, eggs, butter and meat from healthy, pastured cows, etc... ), fish, krill, or cod-liver oil, and low on grains (especially wheat). Try to eat more like your great-grandparents ate and you'll be doing much better than if you follow the USDA food pyramid! The Weston A. Price Foundation has great info on healthy traditional diets and how our modern, western diet and food preparation has damaged our health (westonaprice.org). Learning about food sensitivities/allergies would also be essential for reducing systematic inflammation. If you can't afford allergy testing, try checking your pulse before and after eating suspected foods. If you notice a marked rise in your pulse after eating a particular food, you are probably sensitive if not allergic to it.

Also avoiding chemicals as much as possible in your environment (cleaning products, unfiltered city water), and food (genetically modified and/or pesticide laden foods) is also important. I know there are lots of supplements that help with inflammation: turmeric, fish oil (or krill or cod liver), vitamin D3 (current recommendations are extremely low, so probably around 5, 000 mg. daily, or better yet, get your levels tested and aim for therapeutic levels--check out http://mercola.com for more info on vit. D), and many more.

There are also supplements designed specifically for reducing inflammation. Chinese mushrooms and herbs have been used with incredible success for a variety of inflammatory conditions, so that would sure be worth checking out. Fungi Perfecti has a product line called Host Defense and a product in that line called My Community that looks very intriguing. It's a very reputable company and scores of people with serious immune and/or cancer issues swear by their products. http://iherb.com seems to have the best prices. Searching out anti-inflammatory diet and supplements should provide lots of good ideas. Hopefully there's something of use in all that!

If I discover a magic pill, I will certainly share my discovery, but my guess is that it's really about getting your hormonal and immune systems balanced out, which involves a more holistic approach to diet and lifestyle than what one pill can provide.

REPLY   9      

Replied By Sherry (Roanoke, Va) on 01/23/2011

I have had LS for 7 years. I was diagnosed during the 7th month of my first pregnancy. I have tried so much of what is listed here. I also began using the Perrin's Cream about six months ago. It is by far the most helpful thing that I have tried. I am having a flare up now (that is driving me MAD), and I have had to use the steriod cream, BUT what I find is that the Perrin's Cream seems to help restore health to the damaged skin (by the disease and the steroid creams). Healthy diet is crucial. I am a health nut... When I have a flare up, it is usually linked to STRESS! Stress reduction and dealing with it well is crucial. I struggle with this! I will say that since using the Perrin's Cream, I have only had one flare up. Use the CREAM, not the ointment! The ointment is TOO strong and will burn! You are not alone. I am sorry that all of you are dealing with this also.
REPLY   2      

Replied By Kim (Effingham, Il Usa) on 07/01/2011

Jill from TX:

Your advise is EXCELLENT!! I have done my research and agree with all. I am a LS suffering soul. Perrins cream and your diet recommendations do help.

That being said, I would like to add to this forum some things that have helped me considerably with my LS.

I am certain that mine is associated with the endocrine/immune system. I have enlarged lymph nodes under arm when I have a flare up. I also have hypothyroid too.

In the last year I found a product called I-26 or hyperimmune egg. Started taking this and have had GREAT results, symptoms are greatly reduced. I am planning on continuing this until I find something else. I also came up with a remedy for the pain/itching. Take Lysine in powder form and add to Aloe Vera. Within seconds the pain itching will be gone. I apply this usually 1x a day and it lasts until the evening.

I have had this terrible disease for 8 years and found the lysine trick in a herpes tx. I just tried mixing it in aloe vera and it works like a charm.

I am not sure what caused mine, but it started after I had a hyster and dx hypothyroid.

Again, the hyperimmune egg is worth trying. Just mix it in with OJ, drink down.

God bless, hope this helps some other women.

REPLY   5      

Replied By Diane (Nashville, Tn) on 08/10/2011

Thank you for sharing your remedies. Do you apply the lysine and aloe Vera topically or take it orally?
REPLY         

Replied By Kim (Effingham, Usa) on 08/17/2011

For the LS to stop the intense itching... Take the lysine powder and mix it in the Aloe Vera and apply topically. You may need to start doing it 3x/day until it puts the fire out, then you will only have to do it daily. It worked for me. Best and stay blessed. This is an awful disease.
REPLY         

Replied By Gem (Melbourne, Australia) on 08/20/2011

Finally.. A website that gives me some hope. I have written down EVERYone's suggestions and may have to give up work just to manage this LS!! (I wish). But, thanks all for sharing the tips.. I about to embark on a gluten & dairy (&sugar) free diet, see a naturapath AND try many of the 'remedies' on this page. My wish is to stop the steroid creams.. that stop itching but not the progression.. And keep enjoying sex!!
REPLY         

Replied By Louise (Newcastle Upon Tyne, U.k.) on 07/27/2012

I was diagnosed with LS two years ago. Pure essential lavender oil in the bath has helped me, and also Perrin's cream. Attention to diet, and cutting right back on sugar and yeast products has also helped. I agree that this is a horrible disease, and sometimes I can't believe I have it, but does anyone know how much research is going on to find a cure? What have we all got in common that would trigger this in us?
REPLY   1      

Replied By Aine (Monaghan Ireland) on 04/15/2016

What is hyperimmune egg?
REPLY   1      

Replied By Frances (Cabarlah, Qld.) on 04/17/2016

Aine, If a person has an autoimmune illness, this would overstimulate the system to attack the body even more.

“Hyperimmune egg is an egg from a hen that has been vaccinated against certain infectious diseases. The hen develops specific antibodies that rev up the immune system to fight the specific diseases included in the vaccination. These antibodies pass into the hen's eggs. People harvest the eggs and remove the antibodies. These antibodies are then used to treat diseases in people.”

“How does it work? – Antibodies contained in hyperimmune egg are thought to stimulate the immune system and help the body fight disease.” – www.webmd.com

REPLY         

Replied By Sara (Monterey, Ca) on 07/12/2016

I have never used the creams or vagisil and I have lichens sclerosis. I do eat primarily organic foods sourced from local farmers markets along with ranch raised eggs dairy and meat.

I find recent stress has aggravated my lichens, that had been in remission. I will go back to the obgyn for evaluation today.

I will seek more prp treatments and one of the topical treatments on this site. I can't tolerate the steroids. The platelette rich plasma treatment has kept the symptoms at bay for over a year. I will keep my hope and faith that it will push it back into remission. I am afraid I will have to change my work out routine as well. It's a life style thing, I'm afraid.

REPLY