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Finally the doctors have confirmed LS

Posted , 12 users are following.

Guest
Guest

I have suffered with this condition since I was. 8 years old.  Until now no one could find a problem.  I have had continuous UTI's and have had days of great pain.  It also disturbs your sleep as many of you can probably sympathise. The pain started to get worse as I got older.  I am now 42 and have had 2 children.  I used to be given treatment for a Thrush and just assumed it was all in my head.  Thanks to Embarrasing Bodies I took myself to the hospital and asked if they thought it could be LS.  I then saw 2 consultants who confirmed that it was LS.  I feel so relieved  but sad that I am now 42 and unfortunately my skin may need fixing ! It has worn away.  Has anyone has this operation ? 

0 likes, 23 replies

23 Replies

  • gill59695
    gill59695 Guest

    Posted

    Not exactly sure if I have had the same surgery but I have had 2 surgey a to remove LS patches and laser treatment as well.  I too have suffered for years without diagnosis until last year. I was given steroid creams to use to help with this itching and soreness and I also think it has thinned the skin. All I will say is if you are still working make sure that you are signed off long enough to recover as in my experience recovery is very underestimated.  If you have ever had an episiotomy it's the closest I can explain to how I feel. Hope this is helpful and good luck.
    • Guest
      Guest gill59695

      Posted

      Thank you for your advise! Very helpful 
    • Guest
      Guest gill59695

      Posted

      Also I think that's what I had done when I had my children.  Extremely painful indeed.  I am finding the steroids irritate too ! 
  • kathryn07219
    kathryn07219 Guest

    Posted

    In my case, it was prolonged stress at work that was the trigger - not the type of work, just the sheer quantity.  I was expected to do a full-time job in part-time hours when the firm I worked for didn't feel like replacing my colleague.  This kind of behaviour by employers is not unusual these days and I suspect many of us will succumb to auto-immune system difficulties.  I am the least stressy kind of person otherwise!
    • Guest
      Guest kathryn07219

      Posted

      You poor thing! There are no loyalties to staff these days which is very sad.  I have suffered much emotional stress in adulthood but I had a very happy childhood and seeing as I had this as a child I do wonder what my trigger is.  I wish you well and thank you for your reply x
  • gill59695
    gill59695 Guest

    Posted

    I have found the forum very helpful and have learned so much, you are definitely not alone!

     

    • Guest
      Guest gill59695

      Posted

      Thank you.  I am glad I joined this site ! X 
  • Guest
    Guest

    Posted

    Also I believe I have Thyroid Problems but the tests keep coming back negative.  However a friend of mine said you should always ask the doctors for your test results as they can show borderline ! 
  • Guppy007
    Guppy007 Guest

    Posted

    Hi, sorry to hear that you have had this condition undiagnosed for so many years.  That is tough.  Some women do suffer from a lot of UTI's when they have Lichen Sclerosus; it seems to be part of the whole horrible symptoms.  You mention sleep, and that is interesting, I don't sleep like I used to, and I just put it down to my other health issues, but maybe it does effect ones sleep!  

    When you say your skin needs fixing, what exactly is the situation? Have you lost you inner labia minora? Because once that has gone, it is unlikely that it will return, its all part of the disease unfortunately.  The best advice I can give you is to try to find a Vulva clinic where they are used to dealing with women and this condition.

    • Guest
      Guest Guppy007

      Posted

      Hi thank you for your reply.  Yes the inner ladia has completely vanished.  I find that I can't settle of a night and it itches so much.  It's very embarrassing.  I am being referred to a clinic where they deal with skin conditions of the vulva.  I am also being tested to eliminate cancer. X 
    • Guest
      Guest

      Posted

      Sorry I meant eliminate the possibly X 
    • Guppy007
      Guppy007 Guest

      Posted

      Many women have found that by altering their diet they get relief, not only from the itching but some of the many other symptoms of LS.  The worse thing for LS in my opinion is to eat a lot of foods containing sugar, remember sugar is in a lot of foods, so any extra treats can make things intolerable.  I have experienced LS itching, once, one weekend after overeating on sweet stuff and wine, and I never want to experience that again...ever!!.  Why not try cutting out all sugars, strictly, for a month, and see what happens? If sugar is your problem, which it is for many women, I think the itching will stop.  If it is not the sugar, then I think you should consider trying to go Gluten free, I know it is horrible having to alter your diet, but do you want to have this constant itching, which I really believe for some women originates from their diet.  
    • Guest
      Guest Guppy007

      Posted

      I have often wondered if sugar could be the culprit and it does seem to flare up if consume too much wine etc.  I wonder why sugar attacks our bodies? What is it that makes it so bad?  I then wonder if it's yeast.  There are so many things I need to illuminate and maybe keep a diary.  Thank you very much indeed X 
    • hanny32508
      hanny32508 Guest

      Posted

      So sorry to hear that your LS was diagnosed so late in life.  Although I think this has happened with many of us here on this forum.  The medical world does not easily respond to serious skin conditions like LS.  (It took me 'only' nine years.  And I think that I had this condition much earlier in life as well.)

      My experience tells me that one has to be careful with going for surgery.  Better to try diet first. (My diet is: no sugar, no alcohol, no gluten, limited dairy)  The next best thing for me was: baking soda baths (1/3 cup) and baking soda rinses after every bathroom visit(three pinches in a Perin bottle)  then deb dry and apply coconut oil.  And of course 'our shotgun' (glob ointment) in very small amounts once or twice a week.  Plus I do dilation - at present once a day.  And take hormone replacement ( nature path kind)  

      It takes time for the skin to adjust and heal.  The above I have done for a whole year now and with positive result.  The skin looks good, the discomfort minimal.  But a person has to go at it full time every day.  No slacking.  And because I'm also only human,  I sometimes make a mistake for which I pay. (increased LS discomfort)  

      Wishing you WELL.

    • Guest
      Guest hanny32508

      Posted

      I am so sorry to hear that you too have suffered for so long.  Where is the best place to buy natural coconut oil?  A lot of people seem to have good results.  Like you say it has to be taken very seriously for it to get manageable.  It's so lovely to read people's comments thank you x 
    • hanny32508
      hanny32508 Guest

      Posted

      In answer to your question -  I but my coconut oil in a health food store or simply the supermarket.  It depends which one does have the best price.  
    • Morrell1951
      Morrell1951 Guest

      Posted

      Lisa, I'm a big believer in sugar being the first dietary thing to try cutting down. It's an long-accepted inflammatory food. And yeast loves sugar. My experience in 40 years with LS is that yeast and LS are in a constant dance that's a vicious cycle. Stress is the worst thing, period. And what do many of us eat a lot of when we're upset, worried, etc.? SUGAR
    • Guest
      Guest Morrell1951

      Posted

      Oh my goodness this is all starting to make so much since thank you so much X 
    • Morrell1951
      Morrell1951 Guest

      Posted

      I had so much painful sex (and years of remission in my late thirties and forties with lots of great sex) and so many what seemed to be yeast infections. I remember going to my GP and being in tears, saying I didn't care if I ever had sex again. That might have been in my thirties or earlier. I used to eat chocolate and donuts and I drank so much, all because I was so depressed over living with a sexually demanding husband. When I finally left him, still ignorant of LS, I wrote him a letter that because he'd turned me off sex eight years before, I had atrophied from disuse – my clitoris was half-covered by a fusing hood. Fortunately subsequent 'use' freed it up and all was good for a decade or so, till menopause hit.
    • Guest
      Guest Morrell1951

      Posted

      I was also with a demanding partner who wanted my attention all the time.  It really got me down too.  The pain can be unbearable.  I have never really enjoyed sex due to the fact that my clitorus is inbedded.  I like my wine and all things that are bad for me.  I need to change my whole life style but it is so hard.  I will see the consultant soon for some tips on life changing diets etc.  Thank you for sharing your story with me X 
    • Guppy007
      Guppy007 Guest

      Posted

      Lisa, I have to write down everything I eat as I have other health issues.  But, through doing this I have discovered a lot of foods that my body simply does not like.   It has been a real eye-opener.  It is not a case of eliminating everything that you love, that would be counter-productive, cause stress, but more a matter of looking more carefully at what you eat. I had some allergy tests done recently, and I have a problem with yeast, which is unfortunate, but I am still going to have the odd glass of sulfite free wine. Otherwise, I would just feel too wretched.
    • Guest
      Guest Guppy007

      Posted

      Hi thank you very much for your reply.  At least I know I can have some nice things lol x 
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