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Super thankful to have found this group. Thought I'd take a moment to introduce myself and ask a few questions.
I was diagnosed about a month ago with LS. I am 45 with no autoimmune disorders or other diagnoses of any sort to speak of.
I have always been healthy. Eat a mostly veggie diet with meat maybe once a week or so and that is always organic and hormone free. I drink lots of water and have been a dedicated yoga practioner for 15 years.
My personal hygeine routine had always consisted of water only. I never used harsh soaps etc. Until recently. 4 months ago I started using Dr. Bronners tea tree soap. The bottle says to dilute; 4 drops per lots of water. I know that I was not using this soap correctly. After only a short period of time I had some burning in the vaginal area on one side. I kept using the soap...I just didnt put it all together. Then after several months I developed a small white patch of skin on one side. I kept using the soap on a wash cloth and wiping the patch away. It got worse and I went to my OBGYN and was diagnosed.
That was about 3-4 weeks ago. I have since stopped using the soap. I used the prescribed Cobestal for only 1 week 2x a day and developed a lot of irritation due to that. I dont think I was using it correctly because I did in fact apply it to healthy skin (I only had one small patch of thin white).
So I stopped using the Clob due to irritation. Then I used over the counter cortisone 1% Aveeno with Aloe for about a week or so.
The thing that confuses me is that I dont have any white patches. I do not itch or burn. At this point I dont know where I would even put the Clob because I dont have any patches.
I do appear fisured on both sides now and have some swelling and redness. I dont know if this is now an irritation to all of the steroids, some vitamin E oil that I used and some vaseline.
I had read "keep the area dry". Now, I read on here to keep the area moist to prevent the sticky fusing.
My questions are: should I go back on the sterioid cream and where would I put it since I dont have any white patches and I dont have any itching? Did the sterioid cream cause the fusing or the LS?
I'm running out now to the health food store to buy coconut oil and aloe vera oil. Will try both of those in lieu of the vaseline.
I'll also buy a spray bottle for the baking soda mixture.
I have been looking for weeks for a Chicago Illinois doctor and cannot find one. Should I find a dermatologist or an OBGYN? I have looked for a Vulvar Clinic and cannot find one in Chicago. (I was diagnosed in north carolina while on vacation so that is not my regular doctor).
Thanks in advance for "listening" and for any advice!
2 likes, 10 replies
I do no fad diets or use any of the other creams mentioned on here.
I am very fortunate as I attend a clinic especially devoted to this.
I believe mine is auto immune related but that may or may not be the case.
You may take a while to find the best person to help you manage this.
All the best.
You sound about as confused as I am! Happy to hold hands!
No one knows what causes LS, it is thought to be an autoimmune disorder, and so it is highly unlikely that you have caused this by using your soap.
If you use a small magnified mirror to apply the Clobestol that will ensure you are applying the cream exactly on the white patches, remember you only need to use a tiny amount of cream (pearl sized) and your skin absorbs it better if you can have a bath before applying the cream... all this information Dr Goldstein talks about in his Webinar.
Personally, when I had the LS white patches last year, I applied the cream morning and night and I used it for just over a week, and I was fortunate that the white patches disappeared quickly, and afterwards I think I used it twice a week for maintenance for about a month.
I do not use Clobestol now unless I have a flare up, my Vagina is free of any sores, white patches, cuts etc, it looks normal. My routine is spraying with water after using the bathroom, patting dry, and then applying either coconut oil, Emu oil or vaseline, this in my opinion stops the "Lichen Schlerous sticky fusing problem" as since rigidly adhering to this routine I have had no more problems with fusion. I also follow quite a rigid diet, as I am one of those women that have found diet plays a huge role in managing Lichen Schlerous, and as everyone is differentit it is going to take a while to figure out what works for you to manage this condition.
I'm curious, do you apply the Manuka Honey to the place where the labia has sort of fisured together? This is where I am applying the coconut oil, in an attemp to keep the area soft and lubricated.
I don't have any little cuts along this area.
Would you apply the Manuka Honey to the little cuts/sores that can develop here? Is that what the Manuka is for? To heal the cuts?
For the last 2 days I have stayed away from even the 1% OTC Aveeno steroid cream (it didnt make sense to use it if I don't have white patches or itching). Right now I want to restore my vaginal health and appearance.
I have been spraying with the baking soda/water mixture and applying the cocounut oil every time I urinate. It's only been 2 days but I already feel better, less irritated, I have redness. I'm still swollen and have no idea what this is about (maybe the irritation from the Clob but I've been off it for almost 3 weeks).
I have the aloe and may use this periodically too. I am also taking a probiotic daily supplement and drinking/eating tons of yogurt.
Right now I am just monitoring the condition and examining myself daily. At least I have more information now on how to use the Clob when I need to. My understanding is that these white patches can creep up quickly.
I will also look for the Manuka Honey.
Strange, I would not want to discourage anyone from using the steroid ointments/creams. I know they have their time and place. But for me, right now, these more natural approaches seem to be keeping symtoms at bay, meaning no itching and no white patches.
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