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 normal 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 worth it. It made me realize that I have an opportunity to reach out to so many people who have had no hope from this embarrassing and painful disease.
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 and natural options, who has researched Lichen Sclerosus and 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, and when something is not working for your body.
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, with visible signs of the disease. Looking back on it now, I think I likely had the condition for a number of years, but I chalked the symptoms I was having up to other things, not realizing that they were all related. For years I suffered with chronic infections, severe itching, change in color of the skin, and bruising in the area. Finally one day the symptoms were so severe that I couldn’t take it anymore, and I knew that something wasn’t right. I made an emergency appointment with my gynecologist praying that she could tell me what was going on, and give me something that would to relieve the miserable symptoms that I was having.
At 39 I was diagnosed by my gynecologist with Lichen Sclerosus (LS). Haven’t heard of it? No surprise. It is not a commonly diagnosed condition, the medical community doesn’t know a whole lot about it, and if someone you know has it, they likely don’t talk about it. Lichen Sclerosus is thought to be an auto-immune disease (in my opinion because they can’t seem to figure out exactly WHAT causes it), 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. At this time 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 Lichen Sclerosus 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 young. 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 prescription 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 online and found information about the disease, but at the time 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 natural options and 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, thinking about what the prescribed treatments were supposed to do. I have to admit, although I had 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 altogether, 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 and healthy skin. 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.
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. (I know the nurse did when I could hear her conversation outside the closed exam room door!) Much to my surprise my doctor didn’t . She personally uses essential oils 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.
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 proven 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 and other natural and alternative options. 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.
After such success personally with the formulation, I set out to share the recipe 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 was removed from several groups just for trying to share my experience, and what had worked for me. Many people began to contact me wanting to know what I had 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. Initially I shared the recipe right here on this blog post. At the time I was a distributor for an Essential Oil company, and the company soon sent me a letter requesting that I remove the information from this post because I was making a recommendation that treated a medical condition, and I was not a medical practitioner. So I set out to go through the process of starting a business through which I could produce the formulation, and be able to get it in the hands of others that suffered from the same condition. And with that LifeWorks Skin Essentials was born. Now you can purchase the formulation that I personally developed and used with such success, our Restore Natural Oil Blend. This blend was specially formulated with pure and natural ingredients and 100% pure therapeutic grade essential oils that have been proven to help heal, restore, and regenerate the skin and support healthy skin and the symptoms associated with Lichen Sclerosus. Visit our website LifeWorks Skin Essentials for more information on the company and the product. We hope to hear from you soon!
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.