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New to this platform for LP

Posted , 7 users are following.

linda94703
linda94703

Hi everyone, I am new to this platform for LP, I have it oral and unfortunately in the girl parts, anyone else dealing with it in both places? It is worse down stairs than in the mouth.. My mouth is starting to worsen and I have been started with Dexamethasone swish by my Derm guy. What foods should I avoid??  I am going to have a gold crown taken out along with the rest of the metal in my mouth as this may be a contributing factor according to the Dermatologist and the Immunologist... 

0 likes, 18 replies

18 Replies

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  • Sasr24
    Sasr24 linda94703

    Posted

    I'm sorry to hear you, too, are suffering with LP and OLP.  I have had it for six years.  It took me three of those years to find a doctor who could diagnose it.  I avoid anything spicy and citrus.  Also, be very careful with the temperature of food as anything too hot can burn your mouth instantly.  I went on Mycophenolate (generic for Celcept) three years ago, and I have only occasional flare ups that aren't bad at all.  For the most part, I hardly notice it anymore.  I know some people prefer not to take meds, but it has worked miracles for me.  If you have it downstairs, you may consider trying it.  Good luck to you.

    • linda94703
      linda94703 Sasr24

      Posted

      Hi Sasr, thank you for the info, will have to look up Celcept. Have been of the Clob, but does not seem to improve the situation. 
  • AnnieWilhemina
    AnnieWilhemina linda94703

    Posted

    Hi Linda I suffer from both as well so your not alone. At the moment my oral is ok but I'm being good & trying hard not to give into temptation. Everyone is different but my no go food stuffs anything acidic Oranges, lemons etc. No tomatoes or white potatoes - sweet potatoes are fine strawberries for some reason. spices

    I've been told to avoid caffeine. So I'm now drinking redbush tea. But really trial & error. Oh Yes the big one No Stress( if only). Good luck a bit depressing but as I say everyone is different. (lady bits - dermovate & I wash with an emollient). x

    • linda94703
      linda94703 AnnieWilhemina

      Posted

      The diet part is hard, love my coffee in the morning. Have gone to have regular and half decaf..may change that to mostly decaf and see if it helps. Tired of the rawness downstairs and the burning, can't seem to find anything for a lubrication that does annoy...

  • pia21790
    pia21790 linda94703

    Posted

    Hi Linda, 

    I have this LP in my mouth and vagina sense 2013.

    Vagina I am using dernovat regulary twice in a week and estrogen cream also 1 or 2 times in a week.

    Mouth I just use gentle tooth paste and I avoid spicy food regulary. I also noticed that some candies are not goot to my gums.

    I visit my gynecologist and dentist both few times in a year and hope they can have some cure for me.

    Now I am going to try homeopath, but I cannot say anything yet..but I will let you know if any help is coming.

    • linda94703
      linda94703 pia21790

      Posted

      I have LS and LP downstairs but seems the LP is the worst...I am frustrated with not being able to walk much or do the things I used to for exercise etc. Wish someone would come up with a bright idea to stop and reverse this! Thanks Pia
  • mary_pooh
    mary_pooh linda94703

    Posted

    Yes I have it in both places that he mouth has been bad for two years it's hell . I saw an olp dental surgeon who said there's no connection with mercury fillings but I think there is . Every blinking doctor tells me different things ! I'm trying vegan diet soft foods only but to tell the truth nothing seems to work .my white blood count is very low at 2.2 and lymphocytes 0.6 because I've been trying to fight this for 3 years !! Xx

    • linda94703
      linda94703 mary_pooh

      Posted

      Sorry Mary, this is such a rotten thing for us all. Weird how some things tick it off. So far I don't have any errosions in my mouth. I am going to have the metal taken out of my mouth despite what the dentist says! Can you go see an Immunology Dermatologist or an Immunologist, I think they may disagree with the findings of the dental surgeon. All doctors have their own beliefs, just like this disease nothing is proven a 100%! Best of luck, don't give up.

    • julia52834
      julia52834 mary_pooh

      Posted

      Hi Mary pooh, Interesting that your white blood cell count is low. I am always looking for patterns in others and myself. I also run with a low white blood cell count 2.8. I also have sjogrens syndrom and get a checkup 2x a year from an oncologist due to a higher chance of lymphoma. So far so good with that!!! I also make a vaginal lubricant that is helpful to me! Recipe is 1/4 cup total of extra virgin olive oil, calendula oil, comfrey oil, St. Johns Wort oil, 1TBSP unbleached beeswax, 1400iu vitamin E, gently heat these together in a double boiler. As soon as bees wax is melted remove from heat and add 5 drops frankincense essential oil, 5 drops of sandalwood essential oil, 5 drops of myrrh essential oil. Hope this helps someone!

    • mary_pooh
      mary_pooh julia52834

      Posted

      I've got no saliva dental surgeon did a ten minute slot in tune test the other day I think that maybe to check for sjorgen !? My palate is erroded and lost taste buds !! My vulva LP is in remission at mo . But recently was hospitalised with chronic stomach ulcer and hiatus hernia and inflammation esophagus I'm on 4 omeprazol a day but it still doesn't stop the acid coming up ! If I was a horse they would put me down

      !! I keep smiling tho xxxx

    • mary_pooh
      mary_pooh julia52834

      Posted

      Had another lot of blood tests and white cells have gone up to 3.1 so that's good it may be because the dietician has put me on nutrients drinks coz unable to eat much due to sore mouth !? X

    • linda94703
      linda94703 mary_pooh

      Posted

      Get some Carnation Instant Breakfast if they sell it where you are at. Mix it with Almond Milk, lots of protein and vitamins and it taste good. Bit of sugar tho...
    • julia52834
      julia52834 linda94703

      Posted

      Hi Linda, I have been working with essential oils and aromatherapy for30 + yrs. This recipe is in Aromatherapy by Valerie Gennari Cooksley great book! It is very soothing for any vaginal dryness or irritation especially great for after menopause (59 so I know). As with anything though it may cause allergic reactions for some people however I have used it for 15 years with no adverse effects. Just wish I could figure out something for Lp all over body & mouth! Not giving up there are answers out their we just have to dig👍🏼

    • linda94703
      linda94703 julia52834

      Posted

      Can’t lie, I am discourage with trying to find something to relieve the redness of this LP etc. I think I got my first tear today...
    • julia52834
      julia52834 linda94703

      Posted

      Hi Linda, I’m so sorry your feeling down. I wish I could offer some helpful advice but kind of Leary to because I just noticed that 1 comment from each of us Mary, you and myself were deleted. Wish I new  what they said and why they were deleted! Now I’m afraid to say to much! Keep your head up! We will beat this👍🏼

    • mary_pooh
      mary_pooh julia52834

      Posted

      If they delete we can. Always private message but I don't know how to do it !!! Xxxkeep happy ladies xx

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