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Question about flare ups

Posted , 13 users are following.

jpong
jpong

Been suffering with pain, burning and irritation but not itching for 4 months. After 4 doctors and lots of tests, the last one diagnosed me with lichen sclerosis. Put me on Clob 2x a day for 2 weeks and then a follow up visit. I'm just finishing week 1 and started to feel better and then yesterday was horrible I cried all day! Is this normal to have flare ups for no apparent reason? Something had to trigger that I would think? Keeping a good journal to see if I can connect the two. I'm so overwhelmed and frustrated!

1 like, 25 replies

25 Replies

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  • martha91317
    martha91317 jpong

    Posted

    Mine will do that. Sometimes in the middle of the day then I’m the next minute be almost normal . I’ve noticed that stress will cause a flare really quickly. 
    • jpong
      jpong martha91317

      Posted

      Yes I'm sure stress plays a factor, I'm just wondering if certain foods can irritate, like peanut butter? Looking into all this. That's why I'm trying to keep a food journal. I'm desperate to get some relief 😓

  • jay63046
    jay63046 jpong

    Posted

    I know you didn't direct your questions to me, but I've somehow gotten deep into Lichen sclerosus, though I have a different similar condition of my skin, Lichen simplex chronicus.

    I can't tell you why flarrups happen, but think about anything that changed your environment. Anything is a possible culprit; think grapefruit or orange juice, failing to take a shower every day or changed your soaps. Think about traveling and using the hotels soap of a family members soap if you went visiting. Changed if toilet paper, handsoap in a bathroom etc. You can see from this that fried or fresh onions might do something to your skin ecology to affect your vulva. Don't touch yourself on the vulva without washing your hands with a soap you will always use at home. Medicines, fabric softener, air freshener, new sheets or cushons, mattress. You just have to be a slave to the health of your vagina

    I'm going to suggest that you have two very different potions that work for you getting my. Use one rout it nely, then if you get a flare up you can switch to the other one immediately to bring the flarrups under control.

    Best luck.

    • jpong
      jpong jay63046

      Posted

      Thank you! Yes, I'm extremely careful about all those things you mentioned that's why I'm really confused why this would happen, but I'm very new to this and trying to understand. I know the Doc said if this doesn't work with the Clob, than a biopsy is next!

    • diana71766
      diana71766 jpong

      Posted

      Not sure why they want to do biopsy. They know you have it. Cut twice first to make sure it wasn't cancer. She scared me to death. Second time 18 years later to confirm I had LS. First time on clob. It will work. Don't use now because of thinning. Olive oil natural and warm water. Work from home. So I use wash cloth than toilet paper all the time. Can be irritating. Bad flare up 1% hydrocortisone. Hope this helps.

  • jay63046
    jay63046 jpong

    Posted

    My best to you. You have to be a detective
  • TerriG
    TerriG jpong

    Posted

    Im 61, Married. I too have been suffering for many many years.  Doctors in the past would treat me for yeast infection, until I demanded to be sent to the Mayo Clinic. As soon as I was seen by a doctor there she immediately told me I had lichen Sclerosis. A biosopy was done to confirm it.  I was given a cream hydrocortisone 2.5 with vanicream. Prescribed by the doc, I found relief.  I always keep it moisturize with coconut oil. This has made a huge difference.    When I urine it I rinse with water to keep it clean.  I no longer wear underwear . Less clothing the better my vagina . I no longer drink dairy.   I find i get flare up.  I don’t eat beef. I stop all the artificial sweeteners except organic stevia, I purchased at Trader Joe’s.  My LS has gone dormant for Two years. But anything can flared up. I wish there was a cure.  
    • jpong
      jpong TerriG

      Posted

      Yes, I was treated for yeast infection, BV, UTI, none of which I had, which is really scary! 4 doctors later was diagnosed, it has only been 1 week since I started treatment. What a horrible disease!
    • TerriG
      TerriG jpong

      Posted

      I feel for you as well. It’s a terrible illness to have to leave with. Take care. 
    • Nancy_K_B
      Nancy_K_B TerriG

      Posted

      HI Terry,

      thanks so much for sharing your experience of many years.. and I' so sorry it took so long for you and many of you all to get an appropriate diagnosis.

      I've only known I had this for 7 months now;  I'm 72 and single, but the internet made my experience much easier at this point in time - a few keywords  "itching anus at night white areas vulva"  instantly brought up THIS patient.info site and i called the next day to my cardiologist/integrative doctor for a referral.   

      I've gotten the impression thought that it really is not a very well known condition. When I started my literature search I discovered that I could find only one article that acknowledged that this is an autoimmune disease only proven in 2012.   

      Terri, please a few questions: When you finally got to mayo Clinic,

      What year was that?

      and did they tell you LS was an autoimmune disease?

      and lastly, IF they know that, did they tell you any NUTRITION to manage an autoimmune condition? 

      From my 6 months researching everything I"ve found many articles that show some scientist-researchers are finding association of autoimmune disorders with particular nutritional deficiencies.. but I don't think they have become common knowledge - yet.   

      Wondering what you take for instance? THANKS - Nancy in North Carolina

       

    • TerriG
      TerriG Nancy_K_B

      Posted

      Hi Nancy, it was 1/30/2014 when it was  diagnosed from the Mayo Clinic that I had LS.  No they did not tell me it was an autoimmune disorder.  No special diet was given to me. I pretty much have learned what not to eat  that could cause it to flare up. Currently when it hits me hard I apply Hydrocortisone in Vanicream 2.5 % cream.     This cream has to be mixed by a specialty pharmacy.       I also found Lotus Wellspring Healthcare

      Acuquncture•Homepathy. I get heat therapy Moxibution.  the next day I feel relieved.    I use on a daily bases pure  coconut oil to keep moisturize.  Rinse with water when I Urinate. 

    • diana71766
      diana71766 Nancy_K_B

      Posted

      I use adult cream like paste like they put on babies. When you wipe the toilet paper won't irritate you. Heal the area

  • jay63046
    jay63046 jpong

    Posted

    This kind of conditions have no cure(s). They are by nature conditions that are a product of how you areade and how you respond to your world. Some things like LS are not seen unless something contributes to the flare up. You can't curr them but you can often treat them away, but they can recur. You have to be a detective.

  • kathryn07219
    kathryn07219 jpong

    Posted

    I have had LS and LP for several years.  I can confirm that some things will cause a flare up but, in general, it just happens.  I can be quite happily getting on with life one minute and the next - impossible itching, labia glueing together for no reason.  I haven't found anything that helps consistently although there are a few things that help from time to time:  Clob (although it doesn't work as a routine twice weekly so-called preventative treatment - flare-ups still happen), castor oil to lubricate.  Diet makes absolutely no difference to my LS but we are all different and some things may help you.  Try everything suggested on this site - doctors know diddly squat about LS/LP and when they realise they haven't helped and can't help, wave you goodbye.  There is very little medical research because this condition is not glamorous or common enough to warrant drug companies spending money on it.  Sad fact of life.  Good luck.

     

    • diana71766
      diana71766 kathryn07219

      Posted

      Try the olive oil it is natural and it is digestible through cooking. Use adult cream for chafing around the anus. Shower in morning . do these things and it keeps everything calm. Very little flare ups. When I do use 1% hydrocortisone over counter. Please try may work for you. God bless
    • karen41728
      karen41728 kathryn07219

      Posted

      Yes it just happens, I don't think there are any triggers, some types of ls and lp are caused by a virus and that's why it stops and starts and being autoimune x

    • linda94703
      linda94703 kathryn07219

      Posted

      Hi Kathryn, I also have both..the planus per the Dermatologist is my biggest problem. The reddness just wont stop. Clob I think makes it worse. I think I am developing an anal fissure and it is painful. I just received 100% pure EMU oil to try inside for lubrication. Oil, Avacado burn. Castor oil converts into a type of acid, warnings come with it so I have had some reservations. None of us know what to do....  Have you been able to walk long distances? I have not and it is killing me to not live my life and do more sitting than moving. Everyone is wondering why I am wearing all these dresses not...ugh. How many years have you had this? So many people have LS in the female part but haven't seen alot that have been diagnosed with both...

    • Nancy_K_B
      Nancy_K_B linda94703

      Posted

      HI LInda, I found out about the Aloe Vera Gelly with tumeric essentional oil when my anal fissure opened back up. FOr me It has been the most cooling, relief and dare I say healing agent so are in the 6 months of this. 

      On thing I like particularly is that the gel doesn't run all over theplace like coconut oil; nor does it become really sticky tacking messy to apply like the castor oil.   

      Oh missed the comment  about Emu oil, it sounds good too; let us know how that works. 

    • karen23320
      karen23320 linda94703

      Posted

      Linda- Olive oil was very burning to me too when I had the ulcerated areas, needed something cooler and creamier until they healed. The Emuaid I used was great! All healed in less than 14 days. 
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