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newly diagnosed. confused with questions

Posted , 10 users are following.

sara61637
sara61637

Hi All.

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!

Sara

 

2 likes, 10 replies

10 Replies

  • kathleen65757
    kathleen65757 sara61637

    Posted

    My specialists have told me not to wet the area too much and I follow that. I do not use soap at all. I use Advantan fatty ointment and that could be a good one for you to ask for. It is well absorbed and not as potent as the one you were using but it controls mine. I also use Dermeze sensitive but only sometimes. I think whichever of those two doctors you mentioned is most familiar with this condition would be your best choice as you do not have a clinic specially devoted to this.

    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.

     

    • daisycliper
      daisycliper kathleen65757

      Posted

      Does the clinic you go to ever recommend using any bioidentical estrogen topically?  I have had LS since 2007. 
  • april.wild
    april.wild sara61637

    Posted

    Good Luck Sara.

    You sound about as confused as I am! Happy to hold hands!

    Best

    April

  • Guppy007
    Guppy007 sara61637

    Posted

    Hi Sara,  If you look at the top of the page there is a "New to LS thread" which is worth looking at, especially the Webinar by Andrew Goldstein.

    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.  

  • renee77108
    renee77108 sara61637

    Posted

    Hi Sara,  I don't  have white patches either...never have, but I do get the itching and the fissures.  I wash with Cetaphil down there...it is totally non-irritating and is not soap...but cleanses gently. The aloe vera gel is moisturizing as is the coconut oil.  Many also use Emu oil.  However, for fissures I have found that 15% or higher Manuka honey heals me quickly.  It is medically proven to have amazing healing properties.  It is expensive...you can sometimes find it for a bargain at a Marshall's or TJ Maxx store.  However  a small jar lasts you a long, long time.  Just take a small amount out with a cotton swab and apply it before bedtime and slip on some cotton panties.  Usually I am much, much better in a couple of days. I don't use steroids...but that is a personal choice and is because I have managed well without them.  I've read up on the side effects and just don't need any other problems so have gone with natural solutions. However, I encourage all to go with what they are most comfortable with and what works best for them.
    • sara61637
      sara61637 renee77108

      Posted

      Renee,

      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?

      Thank you.

      Sara

       

    • renee77108
      renee77108 sara61637

      Posted

      That is what I primarily use it for.  However, I used it recently as I was just irritated like a sunburn and it also helped with that.
  • athena93317
    athena93317 sara61637

    Posted

    I also live in the U.S.I I find it dificult to find a good doctor I am 29 I was diagnosed about a year ago I have had to do a lot of my own research it sounds like you are on the right track health wise I have gone gluten free witch really made a difference I also take wheat grass,biotin,tumerik,coconut oil,and pro biotic everyday I had to switch from the clobeta cream it did mire harm then good I also have minimal itching and white every time I use the restroom I spray 100percent witch hazel then adab dry and apply 99percent aloe Vera almost forgot I also take shatavarie I hope I spelt it right but its a herb to regulate hormones I hope this helps
  • thea26871
    thea26871 sara61637

    Posted

    Hi Sara I have recently had problems in the same direction. After trying to overcome this condition and using the steroid creams without complete success I came to the conclusion it was my urine affecting the skin tissue around the internal areas after urinating. I use cotton makeup pads and just clean water to wipe using one stroke and dispose of it.Always wipe away around the anus too. Generally I use about 4 each time. This proceedure must be kept up never forget and you will find things do improve greatly after a week or so . Use coconut oil that helps too and if you anyone has gone through the menopause your doctor will suggest other creams to improve the tissue.If you try eating Jaffa oranges they take the acid out of urine not bottled orange juice thats full of sugar.I hope it helps it has for me. Now I just keep up this regime and apply the cream.
  • sara61637
    sara61637

    Posted

    Ohhh, I just want to say Thank You to each of you lovely and beautiful ladies for responding to my questions.  I have tears in my eyes.  It's amazing that we can help each other by sharing this important information.

    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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