Lichen Sclerosus – There IS Hope

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I have struggled for awhile whether or not to write a post about my experience with an auto immune skin disease, Lichen Sclerosus. The disease is very personal, and not something people really want to talk about with friends, let alone strangers. But given that I have found some ways that helped me deal with the disease outside of the treatment that my doctor prescribed, I felt led to share my story in hopes that it might help someone else who has the same condition. So putting embarrassment and selfishness aside, I am putting this vulnerable part of me out there. If even just one person finds hope and help for the same disease, then it will be all worth it. I discovered after posting about my testimony regarding the disease in an online support group, that several people wanted to know more information on just exactly what I did to help my condition. It made me realize that I have an opportunity to reach out to people who have had no hope from an embarrassing and painful disease.

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First of all, I am not a doctor (and I don’t play one on TV either). I have no medical training whatsoever. I am just a person seeking more natural options, and an avid user of essential oils who has researched a lot of the properties that various oils have. These statements should not take the place of diagnosis, treatment, and advice from a licensed medical practitioner. I do not advocate that you not listen to your doctor.I do however advocate that you listen to your body. Only YOU know when something isn’t right.

That being said, I didn’t initially listen to my body. I discounted the symptoms I was having until it got to the point that I knew something wasn’t right, and I was in severe pain and discomfort.

About 6 months ago I was diagnosed by my doctor with Lichen Sclerosus (LS). Haven’t heard of it? No surprise. It is not a very common condition, and if someone you know has it, they likely don’t talk about it. LS is thought to be an auto-immune disease, it can affect the skin on any part of the body, however, the most common location is, well, “down there”. Say what?! Yes, you know, the location on our body that people don’t often talk openly about. Especially if there is a problem! The National Institute of Arthritis and Musculoskeletal and Skin Diseases has some basic information regarding the disease on their website. There is no known cause for the disease, and no known cure. The disease is not contagious. It has been thought to be irreversible. As LS progresses it causes severe itching, the affected skin to have white patches which continue to get larger as the disease progresses, the skin begins to either thin or become thickened, and at more progressive stages parts of the skin can begin to close in on itself and fuse together as well as become atrophied. Sounds great doesn’t it? Especially when “down there” is the affected area. The pictures you see online of the progressed disease are terrifying, especially when you are 39-years old. By the time I realized something was really wrong, I already had some fairly severe symptoms. By the way, did I mention that once the symptoms appear, the damage it causes is thought to be irreversible? Yes. Irreversible. So when skin “down there” begins to fuse together, doctors do not believe it will ever unfuse. A great outlook for a 39-year old! You can only imagine all of the ways that this disease can affect a fairly young individual, especially when “down there” is rapidly becoming different, and painful, and fusing together.

Treatment for the condition generally consists of topical steroid creams, hormone creams, and other creams depending on the severity and symptoms of the condition. As normal protocol, my doctor began a treatment of topical steroid and hormone creams. I was hesitant because of the side effects of prolonged use of both, however, I didn’t know what else to do. I tried looking it up on the internet and found information about the disease, but no other treatments that seemed to really be effective. I found some information that noted that some people find relief for some symptoms, such as the itching, by using emu oil and some essential oils. I continued to use the prescription topical creams prescribed by my doctor. After months of use, the condition and symptoms did nothing but worsen. I was very uncomfortable all the time. Aside from not helping, the months of use of the steroid cream was causing the side effects that I was concerned about. The skin was beginning to thin to the point that it would tear, split, and bleed easily.

I was at my wits end. No known cure, irreversible very uncomfortable symptoms, and no treatment my doctor could recommend that seemed to work. What should I do?! I decided to turn to essential oils and see if they would help. I mean, I had nothing to lose right?! Nothing else was working. So I wrapped my head around the knowledge I have gained about essential oils, and set out to do further research on essential and natural oils that might help the symptoms. I have to admit, although I have been using essential oils for many things on myself, my children, and my pets for nearly two years, using them “down there” still seemed a little out there.

One month prior to a scheduled follow up appointment with my doctor I quit using the prescribed topical creams, and began my own regimen of natural and essential oils. Yeah I know, crazy. But again, what did I have to lose? I blended a small amount of the formulation that I thought would MAYBE help. If nothing else, MAYBE give me just a little relief. I selected oils based on the main symptoms I was having, my knowledge of what the medications that had been prescribed do, and information available on what oils would provide benefits for the symptoms. I applied the mixture several times a day the first two weeks when the affected area was itching badly, then began applying it less frequently.

LifeWorks Skin Essentials Restore Natural Oil Blend
LifeWorks Skin Essentials Restore Natural Oil Blend

 

It seemed to me that the affected area “down there” was looking better, and it certainly was feeling better. But the real test would be what my doctor would have to say. During my appointment I informed my doctor that I had stopped the use of the prescribed medications and began an essential oil regimen. I just knew she would think I was crazy. Much to my surprise she didn’t . She personally uses them herself for occasional headaches and respiratory issues for her family. But now for the real test. The examination of the affected area. My doctor was literally shocked. She told me that the area that had turned white was now almost no longer white and had begun to turn back to a normal pink color. The skin that had become very thick was beginning to thin back out. And most importantly, the skin that had begun to close in and fuse, yes “down there”, well it was beginning to reverse and “unfuse” itself. While that is what it had appeared to me, it was a completely different thing altogether to hear my doctor say it! She was amazed at the outcome in just one month of usage.

LS Visit Note

So where did this leave us? My doctor stated that she is actually going to begin recommending this treatment to her severe patients with the same condition. And, on my visit note she actually noted to “continue with current essential oil regimen”. Yes. Seriously. She actually put that in my medical file. If you know much about doctors, you know that typically they stick to medical based treatments and recommendations.

To me, this was huge! Not only had I found a natural way to help myself deal with a very uncomfortable disease, but it was actually reversing symptoms that are thought to be irreversible! And, by finding natural means of treating the disease, I am now able to avoid all of the dreaded side effects of the typically recommended protocol. I have to admit, I left the doctors office elated for many reasons. Most of all, I now had hope. Hope that a disease that I was told would only continue to worsen, was now getting better. Hope that there is validity (in my experience) to using essential oils. Hope that I might be able to give someone else in the same shoes hope. And if you have been in these shoes, you know that hope is not something most people with this disease have about it.

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After such success personally with the formulation, I set out to share it through this blog post and online support groups, only to find that the support groups would not allow anything that was not a proven medical treatment to be discussed. I have had many people contact me wanting to know what I used. I soon began to realize that there was a great need for the formulation that I had created to help ease the symptoms of this condition. So I set out to go through the process of starting a business through which I could produce the formulation. And LifeWorks Skin Essentials was born. Now you can purchase the formulation that I personally used with such success, our Restore Natural Oil Blend. No need to research and try different oils or products that might work for you. This blend was specially formulated with pure and natural ingredients and 100% pure therapeutic grade essential oils for the symptoms associated with LS. Visit our website for more information on the company and the product. We hope to hear from you soon!

 

 

 

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These statements have not been evaluated by the FDA and are not intended to diagnose, treat, prevent, or cure disease. Please seek advice from a licensed medical practitioner for diagnosis and treatment of medical conditions and inform your medical practitioner of any supplements or natural products that you are using.

About lauraleclair

The author of www.peaceloveandreallife.com, Laura, is an essential oil lover, entrepreneur, and mom of three living with the auto immune disease Lichen Sclerosus. She writes about the ups and downs of every day life... real life!

45 comments on “Lichen Sclerosus – There IS Hope

    1. Hi there! Thank you for reading my post about Lichen Sclerosus. Yes, at this time the essential oils have helped and are still helping tremendously. While this is a disease I will live with for the remainder of my life, the symptoms are so much better after continuing to use essential oils. I continue to see healing and have hardly any itching anymore. I have not used any prescription meds for LS since beginning my essential oil regimen.

      1. It was so good of you to share your story. I want to feel inspired…but as somebody who understands the emotional and physical trauma of suffering LS how can you possibly charge women who are also going through this for a little relief? I so badly came here hoping to find a recipe I could make myself but instead I find another money making scheme. If this is it, then at age 24, my future with LS seems bleak at best. I do hope that whoever invests in your eo’s find some peace.

        1. It is unfortunate that you feel that way. You are certainly entitled to your opinion. Originally that is how this post started out, but if you read some of the other replies to comments you will see why that had to change. At the request of the essential oil company that I was a distributor for, I had to remove the recipe from my blog. The only way I could get the blend out there was to create my own product. Seeing the amount of traffic to that particular post, I knew there was a huge need for it. Clearly the thousands of people that have viewed this particular post have not spent the time, effort, and money to research this topic the way I have to develop a blend that really works. You yourself could spend the time researching, but you haven’t. In this great country we live in, we all have the right to pursue passions and dreams, and become entrepreneurs. What I am doing is no different than any other business that sells a health and wellness product. (Not that I need to explain or justify this business to anyone.) I too live with this disease and know all of the sides of emotional and physical trauma that goes with it. That is exactly why I am trying to get this product out to the people who need it. I am currently working to do more research and make further financial investments to take this product to the next level of clinical trials to prove its effectiveness. This is not just a “money making scheme” as you describe it. This is a business built out of a passion to help others find the same relief that I was able to. I live with LS. I chose to embrace that, and take time to find ways to help live comfortably with the condition. You can choose to also embrace the condition, or continue to view your future “as bleak at best” as you commented. I do not choose to do that. I choose to continue living my life to the fullest.

          1. I find it interesting that there are people who have the nerve to comment about just wanting the recipe. I am just like any other business. Only I happen to have a solution for a condition that is very miserable, that I also suffer from and have spent a lot of time researching. Do you go to other larger companies that sell products and request their recipe, or feel bad about purchasing their products that you use in your every day life? Interesting that every other product that you purchase, you are helping someone, whether it be a large or a small company, to profit. For whatever it’s worth, I am not getting rich off of selling this product as many people seem to think. Being a small business is tough as you do not have the resources that large businesses have. I created a solution to a problem, just like every other business out there. I am guessing that you have purchased other products, prescription or otherwise, to help relieve the symptoms of your LS. I am quite certain that you didn’t write to the pharmaceutical company telling them what you are telling me. Just something to think about. I am doing this to help others that are in the same situation that I am. And I am certainly not getting rich doing it, contrary to the belief of some. I have helped many women who have contacted me thanking me for creating this product, thanking me for helping to change their life. That is why I continue doing what I am doing.

      2. Can you tell me how much you use on the affected area daily? I would like to purchase but I’m not sure how much to buy. Thank you!

        1. Hi Jamie! Initially I would use a full dropper full each application 3-4 times a day. After you begin to get symptoms under control you can back off to fewer applications and less per application. If you use a full dropper 3-4 times a day initially a bottle should last you close to a month. Let me know if you have any other questions!

          1. Thanks very much. I do have questions about shipping as I don’t live in the US. What is the best way to discuss shipping with you?

          2. Unfortunately at this time we can only ship to US addresses. There are very different regulations on these types of products in each country and at this time it is not feasible for us to meet all of those. We hope in the future to be able to expand shipping locations.

  1. Oh my goodness Laura… You are my hero! I can’t wait to see if this blend works for me! I have just turned 40 and have suffered with LS long enough!! I do not like using steroid creams and the other prescriptions of testosterone creams terrify me!!! I use essential oils for migraines and other ailments… And I fully believe in them! Thank you again for working on a blend to help ease specific symptoms!

    1. Hi Jennifer! I hope this works as well for you! Someone messaged me this week to tell me that she has had LS for 15 years, with severe symptoms. She said after using this product it is the first time in 15 years that she hasn’t been miserable! She is experiencing similar results to what I have with this formulation. Keep me posted with your results!

  2. So happy to find your post. I have been struggling and just recently marred (at 58). A Gyn specialist said today that I have LS… I will order the blend when I figure out how…

  3. I’ve never used essential oils at all – I guess you could call me an “essential oil virgin” but I did a specific search for LS essential oils because I have a friend that uses them for various health benefit. My question is does your formula specify on the label all ingredients because I would be reluctant to use somethibg without knowing what it was in the event of an allergic reaction. As a long time sufferer of LS I am keen to try your product.

    1. Hi Dee! I’m glad that you found my post, and glad to hear that you are open to essential oils. They are an amazing tool to have.

      The label of my blend lists all ingredients with the exception of the specific oils in my proprietary blend.

      I hope that you give the product a try, and that it may provide you some relief!

  4. Is your blend safe for breastfeeding moms? I would be hesitant to use anything that I didn’t know the specific oils used. There are quite a few oils I avoid for various reasons.

    1. Hi Rebecca! I understand your hesitation to use certain essential oils while breastfeeding. The blend does contain one oil that is cautioned for use while breastfeeding as it can cause a decrease in milk supply in some people when used in large amounts. The Restore blend contains a small amount of this oil which is well diluted in the 1 oz bottle with carrier oils. Given the distance from the milk supply that the blend would be used and that it is well diluted, it would likely not cause an issue but I certainly would recommend to test it in small amounts and use cautiously until you know how it will affect you individually if you choose to try the product. If you have any further questions you can reach out to me via email as well. Best of luck!

  5. Hi Laura. I had such hope while reading your story, but when I realized rather than sharing your “recipe,” for those that are in need, you are instead, selling it. How disappointing.

    1. Kathy, originally I did share my recipe. But because of the issues with the FDA regulations of late with homeopathic products, Young Living, whom I was an essential oil distributor for, sent me a letter specifically requesting that I remove my recipe as it implied treating a medical condition. My initial goal in sharing my story was just to share my recipe so I could help others. And that is what I was doing. After being asked to remove that information, the only other way to share it was to create a product that I could sell through my own business. And that is where we are today. But in the end, what I am doing is no different than any other entrepreneur who finds a solution to a problem, and creates a product to solve it. I am sorry that you feel this is a disservice. But I have received contact from many people thanking me for what I am doing, that is has been very beneficial for them.

  6. My daughter is 5 yrs old and has been itching since June. She got diagnosed with LS in August. She has been on and off a steroid cream since then. She had relief for 3 wks after using it for a month. When the itching started back up I started using a natural ointment on her I ordered online because I was concerned of the side effects from the steroid. She had relief after the second day. It worked for three wks. She has been back on the steroid now for 2 wks . I have never used essential oils before. Would this be safe for her to try?

    1. Hi Nicole. I am sorry to hear that your daughter has been diagnosed with LS. It’s a miserable condition as an adult, I can’t imagine having it as a child. I am not a licensed medical practitioner and cannot give you medical advice, so I would encourage you to seek advice from a practitioner. All of the essential oils that are contained in this blend are generally recognized as safe for use on children by the age of five. It is generally recommended that essential oils be highly diluted with a carrier oil when used on children. This blend is fairly strong and was designed to be used on adults at its full strength. If you have specific questions to ask your practitioner you can contact me via email. Best of luck in finding a treatment that will help your daughter.

  7. Laura, your product page includes a Caution, saying it is for external use only. I wonder if that just means “dont take it by mouth”, or if the oil is not to enter the vagina. I have no idea whether the LS is on the inside as well as the outside, but the discomfort is inside. So it would be good to know if I can apply it to both the inside and outside of that area. Thanks.

    1. Thank you for your interest in the product and question. The caution is more for ingesting. That being said, with this being a sensitive area, I would certainly advise still using caution and using a small amount or diluting it with a carrier oil the first few times of use to see how your body will handle the ingredients. Customers have used it on the inner area with no problem, but every individual is different. If you have any further questions you can email me at lifeworksskinessentials@gmail.com.

  8. Laura, bless you for sharing your story and your results. I’m a certified aromatherapist and have also struggled with this disease. I used thuja oil and lavender oil for a while, but the results weren’t as good as a steroid cream. I have no idea why it didn’t occur to me to research other oils and try them, and I’m SO glad that you DID. As the years go on, I no longer wish to be using steroids. Honestly, the medical establishment needs to get with the program of holistic therapies and work together, and I’m so glad that your doctor was so open and supportive. I’m also an entrepreneur and am thrilled that you’ve taken something you worked so hard to research and create, and are bringing it out to the thousands struggling with this disease. I know all too well how much effort, money, time, research, and so much more goes into bringing a product to the public. Well done, and keep going.
    On another note, I will add that diet has played a huge part in how my disease is managed. Nutrition and stress levels all play a big part in learning to manage it. When gluten and sugar are consumed, the disease worsens. When I take those two things out of my diet, symptoms reverse.
    So, for anyone reading this, I hope they address the autoimmune-boosting dietary side of this as well as utilizing essential oils and find some relief in these ways.
    Definitely going to check out your product, and so glad you’re sharing your healing blend.

    1. Thank you so much for your comments and encouraging words. Not everyone feels this way. You are correct, I have put a lot of time and money into this venture, as any entrepreneur does. And that has all come from my passion to help others with this condition.

      If you think about how the medical community treats this condition, they treat the symptoms, as there is no cure as yet. So that is the approach I have taken, just like you have. If you break it down and think about the individual parts, the symptoms, instead of the condition as a whole, it is easier to manage.

      I too watch my diet, do my best to consume little gluten and refined sugar. While I am not sure that I have seen a difference in my symptoms of LS because of this, I know through research that the healthier life and diet help to better support the immune system. I also take some natural supplements that help to support the immune system, but again, haven’t noticed a change in my LS symptoms. I agree with you that managing an auto-immune disease needs to be a system wide approach with a healthier lifestyle.

      Thank you for taking the time to share your thoughts! Best of luck!

  9. Most of us who would use essential oils for a serious illness are the type of people who would not use a product without knowing exactly what is in it. That does not mean that we would not buy it from you, just that we would never buy food or skin ingredients without knowing what is in them. Do not worry about losing your proprietary recipe — most people do not have time to make their own products, so you would actually be gaining clientele, not losing it (as a net result).

    1. I understand that viewpoint. However, at this time, I have been advised by legal counsel to maintain my essential oil blend as proprietary ingredients while we are working through the process of clinical testing to be able to further market the product for what it does when we can prove the efficacy of the ingredients. In the event that we decide to apply for a patent it is in our best interest to maintain the blend until that time.

  10. I just read your blog post. I think that it is great that you were able to create this natural product for an awful disease. I would rather pay a real human for a product than big pharma any day. Great job and I will place an order too.

  11. Hi I am looking for relief anywhere I can get it…even looking into leech therapies. Lol. Does this product contain avocado seed oil? I’m horribly allergic

  12. I am curious if this is safe to use while pregnant? I have been using a few oils to help relieve the symptoms for a few years now and they have helped better than the prescribed creams. I would like to see if I could reverse some of the white scared patches though.

    1. Hi Mandy! The blend does contain an oil that is recommended to use with caution and well diluted while pregnant or breastfeeding. That being said, there is a very small amount of the oil in the blend so it is very diluted. If you decide to try the product I would recommend starting out with smaller amounts per application to see how your body responds and work up to larger amounts and more frequent applications.

  13. Hello, I have a 6 years old daughter who suffers from LS. We noticed it when she was 3 but pediatrician misdiagnosed it and we missed treatment for three years. We have been going to dermatologist for 6 months now and applying topical steroid cream. I use essential oils for other health purpose but did not think to use it for her bottom. Is it safe for my daughter to use it??
    Thank you

    1. I am so sorry to hear that your 6 year old daughter is affected with this condition. It is miserable as an adult, I cannot imagine what it must be like for a child. My heart goes out to her. The Restore Natural Oil Blend product has not been tested on children, so I cannot give you a full recommendation to use it on a child of that age. The essential oil blend in the product is mixed fairly strong, and when applied can cause a tingling and cooling sensation which may feel strange to a child, especially given the area that it will be applied. This tingling and cooling sensation is what helps provide relief from some of the symptoms such as the itching. However, all of the essential oils in this blend are noted to be safe for use on children, and I have personally used all of the essential oils that are in this blend, for different reasons, on my three year old without any adverse reactions. If you choose to try the product on your daughter I would certainly recommend that the product be diluted probably at least by half with a natural carrier oil such as olive oil. I would use with caution and pay attention to how she reacts to it. Starting with a smaller and more diluted amount initially would probably be best until you would see how she responds, then you can lower the dilution rate as she becomes comfortable.

      If I can answer any further questions please let me know. Best of luck!

  14. I wish I could say the oil blend has worked for me but that doesn’t seem to be the case unfortunately! I purchased this product a couple weeks ago in desperation for a natural option in place of beginning the prescribed steroid cream treatment.. I have been applying it daily but have not found complete relief of itching nor have I seen any restoration of tissue damage. In fact the LS seems to have only progressed, sadly. Maybe I need to give it more time. Idk. Hard to be patient when I see scarring and fusion and erosion happening so quickly. I just came across Emuaid online, I’m ready to try that next…

    1. If you have only been using the product once or twice a day you may need to increase the amount of applications per day initially to be able to see more rapid results. I found in the beginning that frequent applications was what really helped to reduce the itching and inflammation, and speed the process. We have a lot of customers that have seen great success with this product and continue to purchase it. I truly hope that you will begin to find some relief. As with any condition, there is no one size fits all treatment, especially with LS. What works for one person may not work for another, or others may need more frequent applications. Keep me posted if you continue to use the product as to your results.

  15. I have suffered with LS for 11 years. It has been a while since I have had a really nasty bout but this last round really knocked me for a loop. The broken skin, bleeding and pain are only bearable because the itching is enough to drive a person insane. I am a firm believer in Young Living oils and have tried every blend I can think of, as well as detox baths, to deal with it, all to no avail. The lack of sleep almost did me in. It was during one of my sleepless nights that I found your product and, out of sheer desperation, ordered it. By the time I received the bottle two days ago, everything but the itching had cleared up, but then the itching never really goes away. I was so hoping that I had finally found the miracle cure, but, alas, it is not to be. I’ve been using your product religiously for 2 days with no change whatsoever. In fact, here it is at 4:00 am and not only am I trying to stay away from the kitchen knives but the burning has returned.

    1. I am so sorry to hear that you have suffered with LS for such a long time. There is no one perfect treatment for any condition, whether it be natural or prescription regimens. There is always a trial and error trying to find the right product, dosage, and amount of applications for any condition. LS is certainly no different. Different people respond differently to any treatment, and the severity of symptoms can affect how a product will work. For someone with severe symptoms for a prolonged period of time, the same treatments may not work, or may take a longer period of time to show any results. That being said, I don’t think that someone suffering from this condition for the length of time that you have been will find immediate relief and “cure” as you note. There is NO cure for LS. When I initially began using this blend, I used it 4 times a day for several weeks before my symptoms began to subside and I began to see any real change in the skin. I would urge you to continue using the product several times a day for a few weeks and see if it helps, I don’t think that two days is enough time to know if the product will help you or not. We have a lot of customers that have had great success using the product, and continue to order and use it. Please let me know if you continue to use the product without any relief.

      1. Hi Laura.. I have a US address but I am not based in the United States. Iwould like to purchase your product but I’ve tried 2 of my credit cards and it doesnt seem to work. What could be the possibe problem? Thanks!

        1. Email me at lifeworksskinedsentials.com and we will see what we can figure out! The only issues I have had with credit cards is if the three digit security code isn’t entered correctly.

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