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lichen Sclerosus

Posted , 15 users are following.

powerwoman
powerwoman

Hello

I am feeling desparate now.  I am on the steroid cream which doesn't seem to work.  Every time I have food with any sugar in it, being added or even fruit, it flares it up ridiculously.  I have huge white patches on my vagina and am losing weight every day.

I don't know what to eat and what not to!  I had a biopsy and the hospital are slow in giving results but they think its LS.  Quite frankly this is making me so ill.  I am stress from my son who is going through a GF breakup and I can't seem to help him.  I can't help myself.  My appetite has gone and I am now worried that I might get too skinny.  More than that, my LS is painful, and nothing seems to work.  What can I eat that won't flare it up worse?

I can't seem to get any help.  Does anyone have any suggessions?

Any help would be appreciated.

Jan

0 likes, 33 replies

33 Replies

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  • jeri24294
    jeri24294 powerwoman

    Posted

    Hi Jan, my sympathies to you.  Try to not stress it seems to be a problem with LS.  Try the soda baths or spray and many use coconut oil.  If sugar is making it worse for you keep to proteins and vegies.  I have the opposite affect with weight gain...no loss for me!  There is lots of good info and help on this site...try not to worry, it will get better and most of us learn to cope and live with this condition pretty easily.
    • caroline16811
      caroline16811 powerwoman

      Posted

      Hi there,

      Most of us use a little travel bottle spray bottle with 1-3 pinches of bicarb in it. Each time you have a wee, your undercarriage with it, them dab dry. This neutralises the acid in the urine which protects the delicate/inflamed skin. Other tips. When you use the steroid thumb in for at least 90 seconds. Always use a barrier cream which will also protect the skin and keep it moisturiserised. Leave at least half hour after using the steroid cream before using barrier cream. The barrier cream I use is Hydromol Ointment NOT cream. Keep off sugary things, keep to this routine and this will be in sure to improve. Let us know how you get on. Good luck and chin up. It does take time, don't despair

    • powerwoman
      powerwoman caroline16811

      Posted

      Hello

      Thank you.  I wondered what to do with the bicarbonate of soda!  

      Now I know.  I will have to try and find a small spray bottle now.

      Anyone know where I can find one?  I have only large ones.

      Thanks.

    • hanny32508
      hanny32508 powerwoman

      Posted

      Perin bottles are used in the hospital.  Try a medical supply store.  The bottle has an ideal spray nozzle.  
    • lee12629
      lee12629 hanny32508

      Posted

      Sitz baths are pretty cheap. They can be bought at medical supply also. Basin that fits on toilet. Also can dab a wet piece of white toilet paper after urinateing.
    • caroline16811
      caroline16811

      Posted

      Sorry I meant RUB IN the steroid cream not thumb in. Re bottles I got mine from internet couple of bottle for next to nothing on Amazon. But have seen them in lots of chemists where you have travel section, toilet bags, toothbrush cases etc. Just cheaper on line
  • jeri24294
    jeri24294 powerwoman

    Posted

    Sitz baths are not convenient all the time.  So after using the bathroom, mix a combo of baking soda with water in a spray bottle...pat dry...even a hair dryer is good (wet is bad).  This will neutralize the pee and stop burning etc.  Hope this helps.
  • Guppy007
    Guppy007 powerwoman

    Posted

    Powerwoman, stress can cause significant problems for LS, and so it is important for you to try not to become too upset about your son's breakup with his girlfriend, as I am sure that won't be helping you.  I know it is difficult, I remember crying when my daughter came home one day from school (she was seven at the time) and told me that no one liked her in her class...it never goes away even when they are grown up. 

    With regard your diet I'm of the view that when you are suffering from itching, white plaques etc it is going to take some time to get your system back on track, balanced, and with less sugar in it, and so try to see this as a long-term goal.  I believe that after a month of  low sugar meals you should start to see some results, and then you must continue as after that it should only get better.  I am sure you already know this, but that means being strict for a while, no sweets, chocolate, alcohol, cakes etc, once you are on top of this you can let yourself have the odd treat, but, for now you need to be super strict.  

    Foodwise you will need to do some research.  To give you some idea, for breakfast you could eat something like Quinoa, low in sugar, and excellent for you, it is tasty hot, with a little milk, and you can sprinkle cinnamon, blueberries, pecan nuts,  crushed strawberries, anything really on top, but do take a look online, you will find some tasty lunch and dinner recipes that will help you.

    Sometimes some women find that they have a problem with Gluten or even Dairy.  At this stage, I would just focus on sticking to a rigid diet low in sugar, and if after a few weeks you are not experiencing any relief at all then you may have to look at Gluten or Dairy.  Hopefully, you will be fine with just eliminating sugar. 

  • cynthia40883
    cynthia40883 powerwoman

    Posted

    I think all of us who have been diagnosed with LS, should have our blood sugar checked to make sure we are not diabetic..My A1C, which is a test for this, has been borderline for 2years. We might not be able to metabolize sugar properly.As my A1C has increased thru time, I have developed, LS. I can feel the itching almost immediately after eating sugar. Remember, carbohydrates, are complex sugars.It is not just desserts!Try to eat protein, and maybe a protein supplement drink.in between meals to keep weight on.
  • patricia86334
    patricia86334 powerwoman

    Posted

    I am sorry you are having such an awful time.  Believe me, I know just how you f eel.

    I am so glad I found this site.

    I now wear skirts exclusively, no undies, either.  (I wear pretty long skirts, so no worries)

    I always have coconut oil on my whole bottom area, not much, just a bit.  For the past few months or so, I have found that adding Frankinsense essential oil to some coconut oil, mixed together and kept in a small glass jar is even better than just plain coconut oil for me.  There are so many good helpful hints on this site, please keep reading and try some of them.  You are getting medical help, you are not ignoring this condition, so you are already ahead.  I can't help you with the appetite loss as I can't really remember that ever  happening to me! lol

     

    • powerwoman
      powerwoman patricia86334

      Posted

      Hello Patricia

      I went to the doctors yesterday and she examined me.  She took a swab and sent it off to the lab.  She gave me some steroid pills to try to help the soreness of it. Unfortunately, they have made me quite ill.  Now I have severe stomach ache and my whole body aches too!  So my doctor said to stop them.  The problem I have is I have LS and constant thrush.  The thrush is all the time.  None of the normal medicines work for me, ie Canesen or the Difulucan tablet.  So I am now on one called Itracastan or something like that. I had to stop it while having steroids.  I am in a bit of a state right now.  I am nearly at the point of going private!  I will start the tablets tomorrow for thrush and then I have a hospital appointment on the 15th Feb, 10 days to go.  If they cant help me, i'm going private.  To hell with the expense.  I cant work, and I need to.  I really need to work hard right now and these problems are stopping me.  Today I had to go to bed after lunch!  Oh well, tomorrow is another day, and I will work flatout, if I am able.

      Thank you everyone for all your help.  I really appreciate it.

      :0) 

    • patricia86334
      patricia86334 powerwoman

      Posted

      You have to be soooooo discouraged and frustrated.  Like you, I also hate to take any sort of pills...even vitamins make me sick stomachwise.  No wonder you are very stressed out.  I wish I had an exact, easy answer.  I wouldn't even charge for it!  I sort of thought that thrush-type things could maybe  be helped with a diet change...is that true at all?  My daughter just started a (another) diet last week, I think the book is called something awful like..the virgin diet....the idea is to totally eliminate certain foods that are the most likely to cause allergies....eggs, dairy, wheat, corn, sugar.....you forgo them for I think 3 weeks, then add one at a time back to see which is causing your particular inflammation, etc.  I wonder if something like that would help you.  If it is going to help, it would help right away it seems.  My dtr. says she feels great already....lots of energy. 

      I changed my dr., too.  I had first a GP (General Practicioner) then an Ob/gyn  (Obstetrics/gynocology) and finally found a dr. who specializes in LS.  She is about 2 1/2 hrs away, in another state, but it is totally worth the trip to feel as if I have finally gotten a dr. who knows what she is dealing with.  I have no insurance, so we pay the entire bill.  However, I hardly have ever needed to go to any drs., so after a life time of very little outlay, I don't mind paying for help with this LS!  To me, LS hits at the very heart of what it is to be female...and I don't want to not feel as if that part of me is gone or messed up!  I understand how  you feel about the LS stopping how you live your life.  You do need to do whatever you have to do to get it under control.  Maybe if you can try some of the suggestiions on this board, by the time the two weeks have passed, you will already be much, much better.  I hope so.

    • lynne1945
      lynne1945 powerwoman

      Posted

      Hello

      Predisone initially makes everyone feel very ill, unfortunately. They always start you with high doses which are then tapered gradually. I started with 40 mgms and the side effects were horrendous for a while, rapid heart beat, no appetite and sore abdomen, low energy, headaches,etc. Lots of doctors visits for assurance! But after tapering down, which takes a few months, (am now on 4 mgms after three months) I found I can cope with it, and no more burning in my vulva. I still stick to my rituals every toilet visit though. 

      As my naturopath has said to me many times, it took you years to get this bad, it's going to take you a long time to get on top of it. 

      Yes, go private. I had to too. With a good GP who understands and follows the same protocol as your specialist sets, you won't have to see the specialist more than three or four times a year.

      I also had many problems with my adult son. With counselling I have had to let many things go and let him live his own life. (Luckily he lives in another city.) that's helped too, a lot!

      And huge HUGE diet changes for me. 

      Oh and I have to take fluconazole tablet every month to keep away the thrush.

      Keep up the good work. 

       

    • powerwoman
      powerwoman lynne1945

      Posted

      Hi Lynne

      Are you in the UK?  i am.  What kind of specialist do I actually need to see? A gyno?  A dermatologist?  This is all so confusing!

    • lynne1945
      lynne1945 powerwoman

      Posted

      Hi PW

      I am in NZ. I saw a gynaecologist, then I found a dermatologist who specialises in vulval health. I'm sure you have many specialists in the UK. I think there is a link here for finding specialists in our problems in the UK? I haven't looked as NZ won't be there I don't think. One of the ladies here will help with that, I'm sure.  My doctor is also very helpful.

      My first doctor had never seen a case of LS or LP and couldn't help. I asked for referrals and did my own searches for the specialists and changed my doctor. You have to be proactive! This disease is never one size fits all!

      yes it's very confusing and worrying at the start. I totally panicked and the ladies here were nothing but helpful and caring. This site is brilliant, the best by far.

      kind regards and good luck

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