Question about flare ups

Posted , 13 users are following.

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

Report

25 Replies

Next
  • 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. 
    Report Reply
    • 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 😓

      Report Reply
  • 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.

    Report Reply
    • 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!

      Report Reply
    • 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.

      Report Reply
  • 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.  
    Report Reply
    • 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!
      Report Reply
    • 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

       

      Report Reply
    • 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. 

      Report Reply
  • 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.

    Report Reply
  • Posted

    We delete content if it doesn’t meet the requirements in our Terms & Conditions.

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up