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Anyone else unlucky enough to have LP @ LS?

Posted , 6 users are following.

wjenno
wjenno

HI I was diagnosed by biospy in December 2014, but had been having all the symptoms since July 2013, which I had put done to my first ever waxing there and thought I had been burnt! I had a biospy taken in the December of that year and it came back negative, so please dont give up if this happens to you.

I had just got to grips with this and the magor problems having sex or not having sex!

I started having ulcers in my mouth in July 2015 and went for normal check up at the dentist when I was diagnosed with LP, I just cried.  How unlucy can one person be? I am lucky I have a great team of doctors and consultants with me on this journey. Please all of you in the UK make sure you are reffered to a gyni oncologist who can moniter any changes in your vagina.

Im 56 years old, some days I could just give up and most days when I get up and fight the bloody illness.

Wendy

x

0 likes, 14 replies

14 Replies

  • j02359
    j02359 wjenno

    Posted

    I have LS (diagnosed by biopsy some years ago) and am having a biopsy to test for LP in about 3 weeks, as there is one tiny area that the consultant is a tad concerned about.  I'm not getting ahead of myself or reading about it until I know for a fact, however.  Sorry to learn that you are feeling so down about it.  Every best wish.
    • wjenno
      wjenno j02359

      Posted

      Hi

      When I had my biospy one area was so sore but once I had the punch taken it felt much better. Really strange I had 2 stiches, but I have had no bother with that side. Its the other side that has driven me crazy. Did you start getting ulcers?

      I wish you much luck in this, let us know the results.

  • kippy
    kippy wjenno

    Posted

    Hi Wendy

    So sorry to hear you have both LS and LP, it really gets you down. I have recently been diagonised with LS, and have been so tearful. It makes me feel so unwomanly. How are you trying to manage your conditions?

    Do you know of any local groups in the UK where women can meet and discuss things, where abouts are you? I am in Wiltshire, maybe thinking of starting one up.

    Tania

    • wjenno
      wjenno kippy

      Posted

      Hi Kippy

      I use dermovate (steroid) when its really bad, then cocnut oil or olive oil. This just keeps the area more supple. Today it got so bad I had to get sntibiotics from the doctor. I had dared to try and have sex and the skin just tore away and I got to the point I coudnt pee.

      I use a steroid spray in mouth.

      I live in maidstone kent

    • kippy
      kippy wjenno

      Posted

      Hi Wendy, thank you for your reply,. I am so sorry that you are having a really hard time with it today. With all the advances in modern medicine these days, why oh why is there no cure 😢
    • hanny32508
      hanny32508 wjenno

      Posted

      Small tip - when sore, avoid sex.  But you'll understand by now, I think.  
    • hanny32508
      hanny32508 kippy

      Posted

      Actually, there is no cure for many diseases.  Only medication that keeps it at bay.  So at that point we're no exception, I think.

      I hope that at some point there will be some research done.  However, there is also the element of economics.  If research is done only by pharmaceutical industries we won't get far.  Where are the independent researchers and how would they get funding, I wonder. 

       

  • karen41728
    karen41728 wjenno

    Posted

    I know what you mean Wendy, I have LP it's a nightmare, I'm 57 and when I was younger had an abnormal cervical smear I noticed I started with these changes at the same time only then didn't even know I had it in my mouth, but as the years went on started with all this burning I am from the UK and get checked regular by my dentist, have you had a problem with smears? Where are you from?
    • wjenno
      wjenno karen41728

      Posted

      Hi Karen

      Im in maidstone kent. Yes did have abnormal smears and had laser treatment. Had Pelvic Inflamatory disease for years before having a total hysto 20 years ago.

    • karen41728
      karen41728 wjenno

      Posted

      Hi Wendy

      It's really good to talk on here I chat to some lovely ladies and have actually met up with them.

      Like I said before I was diagnosed by my dentist who sent me for a biopsy about 14 years ago but I couldn't see anything or feel anything and at that same time had laser for my abnormal smears, they are connected...I get checked regular at my dentist.

      I know how you feel it's so depressing can't eat what you want, who diagnosed yours Wendy

  • hanny32508
    hanny32508 wjenno

    Posted

    I have both LP and LS.  LP in my mouth and LS down below.  It took some getting used to, but I'll manage. 

    I brush my teeth with a little bit of baking soda on my toothbrush and so now and then I do the coconut pulling.  That works well.

    I have to make sure I leave out sugar in my diet as well as chocolate.  When tempted and some caffeine enters my mouth the LP acts up only hours later.

     Diet without sugar and caffeine is important for the mouth as well as for the LS down below.  (my diet - no sugar, no caffeine, no gluten, limited dairy)

    At first it was a bit of a puzzle, because then what does one eat?  But now I manage most of the time.   

    • wjenno
      wjenno hanny32508

      Posted

      Hi Hanny

      You are my first twin!! Two great tips,never knew about baking soda will try. Coconut pulling? Are you using dental floss? I love coffee, but have giving up dairy this week (it normanly lasts a day! so not drinking as much. What about dairy free chocolate? I think the whole thing is trial and error.

    • hanny32508
      hanny32508 wjenno

      Posted

      Coconut oil rinse:  I take a tablespoon with coconut oil in my mouth, let is melt and swish it around for a while, then spit it out, don't swallow in the compost bin (not in the sink or you get plumbing problems) Often a few bleeding gums will tell me it is time to the the coconut oil thing again.

      Chocolate and caffeine don't do well with me.  Sure trigger for LP problems.  Milk makes me nauseated.  Cheese triggers my LS.  

      And you're right - a lot of trial and error.  We're not all the same.  Carefull observation is key to find out what the triggers are.  And/or write down what you ate.  

    • hanny32508
      hanny32508

      Posted

      many mistakes in my writing, sorry, but I think you will understand what I was trying to say.
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