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Lichen Schloris

Posted , 6 users are following.

theresa85496
theresa85496

I'm in the USA I've been with Lichen for 10 years 3 surgerys and so many medications i can't count injections every kind of Doctor there is I can't use steroids because of my Heart problems and they don't any way every advertized cream on the market I am out of my head with pain taking to using skirts and no underware some one or something has to help me PLEASE I can't take it any more

1 like, 12 replies

12 Replies

  • patricia86334
    patricia86334 theresa85496

    Posted

    I am in the US also.  I just read your letter.  I am so sorry you are suffering so much.  I also only wear skirts, and go commando...if you read all the letters on this post, you will get lots of great and useful advice and lots of helpful ideas.  You will find things that will ease the pain and make you comfortable and even help the LS.  I was not happy with the ob/gyn who was treating my LS, and when she mentioned the possibility of surgery, I immediately started trying to find a vulvar specialist instead of just an ob/gyn.  (why didn't I do that sooner?)  anyway, I found a dr. who is an LS specialist.  She stopped clobetasol use, as it had caused irreversable damage to some areas, and put me on a milder steroid.  Now, the damage had been caused because the original dr. told me to use the clob. any time I felt an itch or pain, and I was using it way too much.  I had been on clob. for about 2 years, and was down to the every other day use.  Now I use the milder steroid twice a week and I am fine.  I use either coconut oil or emu oil all day, every day as well...which is very helpful...to keep the area from feeling dry and sticky.  Anyway, you will find lots of good advice and support here, on this forum.  Please know you are not alone and there are things you can do.  It would probably be a good idea to stop eating sugar....that helped me right away!
    • Wil816
      Wil816 patricia86334

      Posted

      I'm just curious what kind of damage did the regular use of clob cause?
    • patricia86334
      patricia86334 Wil816

      Posted

      Hi....it was not really the regular use...it was I was using it way too much.  I had been fine with it for almost 2 yrs, but at a checkup I told my dr. there were times when the area was a bit itchy, and sometimes stinging...and she said it was fine to use the clob. then as well as the every other day, and she said it is actually OK to use it every day if I wanted to.  That is what caused the damage....the damage is that the area between the vaginal opening and the anus has become papery thin and could tear...I don't know how it could be repaired if that happens, because the skin would have nothing to stitch back together...you know?  anyway, since that appt. I have been very careful to not get even the mild steroid on that  area.  She took a photo (!) of my bottom, and then used the photo to show me the only two small areas that I should be using the steroid at all.  She said I could use vaseline as a lubricant just to feel more comfortable, and I told her I used coconut oil and/or emu oil and she said that was fine.  (I don't want to use vaseline because it is made from petroleum)  One other suggestion I just thought of:  on a post on this site months ago, someone wrote extolling the wonders of emuaid and emuaid soap substitute.  I was leary of trying something new, but I bought both.  I won't buy the soap substitute again as it is very expensive for me...but I just ordered my second jar of emuaid yesterday on ebay.  It is amazing and wonderful.  I save it and only use it if I feel a bit of irritation....but if y ou are willing to try something to see if it helps you, you may want to seriously consider emuaid.  If you have been reading this site you will also see that lots of us  use a small spray bottle with a mix of a few pinches of baking soda and warm water and spray that on the bottom after every bathroom visit.  It really, really helps to not only clean but also seems to help with healing the tissues and makes the whole area feel much better.  I really hope you get help and ideas from reading all our suggestions and tips.  I hope I was able to answer your question...biggrin
    • patricia86334
      patricia86334

      Posted

      hello again...I just re-read my letter to you and I even confused myself a bit.  The first dr. I referred to, the one who said I could use the clob every single day if I wanted to, was the dr. I left.   When she started saying I might need sugery, I found the second dr., the specialist in LS.  SHE is the one who told me to stop using the clob immediately, and she put me on a milder steroid.  She said the milder one is just as effective, but I was to use it only twice a week and only where she showed me to use it, and not all over the whole area the way I had been using the clob.

      Everything else in my letter seems to be OK....but if I have raised another question or am unclear, please write and I will try to clarify.

    • mborr
      mborr patricia86334

      Posted

      Patricia..can you send me as private message the name of your new doctor? Thx
    • cynthia40883
      cynthia40883 patricia86334

      Posted

      Where is your vulvar specialist. Can you tell me what is the lesser strength steroid? I have had this for less than a year, but already feel hopeless. This week it is so bad when I urinate, that I cannot deal with the burning. There is a fissure, also. Is there a barrier ointment that can protect from urine?clobetasol is the only medication offered tome so far. I see a derm doc. who specializes in this, but not impressed.Please help!
  • hanny32508
    hanny32508 theresa85496

    Posted

    I was wondering about your surgeries.  Perhaps you could explain a bit more about what was done. 

    My turn around came when I started to rinse with bicarbonate/baking soda water after every bathroom visit.  (three pinches of baking soda in a squirt bottle, the kind women receive in the hospital after delivering a baby)  Dab dry and then apply coconut oil.  So far so good.  

    With that I started a strict diet, cutting out sugar, gluten, dairy,  alcohol, caffeine.  I think it helped with controlling LS.  

    At present I use very little of the steroid. About one thin layer per week.  Still do baking soda baths.  (1/3 cup)

    • cynthia40883
      cynthia40883 hanny32508

      Posted

      what does the baking soda do? Does it help the inflammation?Is this the kind you buy at the grocery store?I have a sitz basin,can I use this with small amount of baking soda?
    • hanny32508
      hanny32508 cynthia40883

      Posted

      Hi Cynthea,

      Baking soda has been used to fight infection in the past, and that was my original thought and reason why I started using it.  Then I realized that the Lichen Planus in my mouth was helped by brushing my teeth with baking soda ( just the baking soda you buy in the store) People have been using this for eons.  

      Then I went to my two doctors and asked for some possible explanation - because the fusing seemed to melt and LS seemed to calm down.  Both said - baking soda changes the PH level.  Now we were talking accidity versus alkalinity.  Hence my strict diet as well.  

      You see, at one point my doctors said - LS behaves like cancer but it isn't cancer.  It has been known for a very long time that many cancers could be prevented by living by an alkaline diet.  (Many people here already were living with this - no sugar, no gluten, no dairy, no alcohol - and found that it helped to control LS)  

      Thus my baking soda usage.  Don't overdo it.  A little bit will go far.

      Hope this will help. 

    • theresa85496
      theresa85496 hanny32508

      Posted

      The first surgery theDr really didn't have any idea what he was doing he Butchered me a LONG time to recover found what was to be the best OB in Albany NY we tried every thing first steroids Clob bad reaction went to Emuaid, Terrasil  then found out i was not able to use white petroleum made it worse so first surgery they took part of Labia on both sides clitoral area had split sewed that up 3 months recup and 6 months later it was back went to punch biopsys injections HELL a year later another surgery just one side this time and clitoris here I am 10 years of it been to 9 OB's uroligists Sorry NO more we can do. If you don't have this autoamuin which thats what they say its from my body is attacking it self NO pill or meds can fix it it is a life long illness till we pass on I get SO mad that there has to be some one or something to ease the pain besides a pain pill and that just masks it. What a terrible cross to have to bare
    • hanny32508
      hanny32508 theresa85496

      Posted

      Of what I read I think you went through hell and back.  It indeed sounds like the doctors that treated you did not know what they were doing.  Very, very sad.  Many people here know that very few doctors do truly understand LS.  Some are honest about the fact that they don't know, or tell you that there is no cure and that the only thing they have available is Globetasol.  

      But now it is up to you to find a way to make it liveable.  No simple task from this point on.  I hope you will find some tools on this forum that help make you somehow comfortable.  LS never goes away, we all know that.  But through a lot of trial and sometimes error, it is possible to learn to live with this debilitating illness.  

      Most of what people use here, to make LS liveable, is fairly harmless -  Globetasol in thin layers (overuse is harmful), baking soda rinses, coconut oil or other. Diet.  It'll just take some time to adjust to a different way of living.  

      Wishing you WELL. 

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