Recently Diagnosed with LS - Need Advice!

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Hello. I am 25 years old and today I was officially diagnosed with LS. About a month ago I was shaving and found a white patch. After googling that, LS popped up first and as I was reading about LS I realized I had more than one symptom. I noticed one of my labia seem to be gone while the other is smaller and my clitoris has gotten much smaller too. 

At my initial Dr. visit they said the white patch could be the beginning of LS but they weren't convinced and told me to stay off Google. However, I knew something wasn't right and kept pushing for answers. They finally agreed to do a biopsy to "ease my mind" and today came back my positive results. . . so I'm NOT going crazy. . . . well this diagnosis might make me crazy. 

My Dr. prescribed me a steroid cream to help with "flare Ups". But i'm more concerned with my labia missing and clitoris shrinking! The doctor just keeps telling me that she isn't worried because I'm still young and she thinks my vagina looks fine but she doesn't know what it looked like before because before this white patch I have never been to an OBGYN for anything other than a few miscarriages. 

I'm terrified that both labia will completely disappear along with my clitoris, Please help me, I don't know what to do and this has been keeping me awake at night for the last few weeks because even before I got diagnosed today, I knew this is what I had. 

I'm also unsure of what "flare -ups" consist of because i just recently found this white patch, it doesn't always itch and I don't have any discomfort throughout the days.  

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19 Replies

  • Posted

    Hi Tank92,  I understand your concerns as they are mine too.  Right now I am going through a terrible flareup and have lost my inner labia and afraid of losing more of my undercarriage.  It is depressing me no end.  I use Castor Oil all the time.  I use Clobestol when the itching is out of control but don't really want to rely on it as it makes the situation worse after a while.  I'm at a loss as to what to do.  I feel like I have leprosy.  I'm 72 and have had this for about 10 years, but it seems to be getting worse.  It was  under control for a couple of years.  Now thanks to all the useful information on this site I am working on changing my diet and taking Vitamin D and getting all the other vitamins recommended as well.  

    If you find out any new information please pass it along.  Good luck to you and there is comfort in knowing so many other women suffer from this. 


  • Posted

    Hi  you, first of all I know it’s not the best news , like i tell the the newly diagnosed. Your in good hands with the girls here, this forum is where your emotiinal state will be cuddled. It’s very important to be supported in this and here is the place to feel better I tell you. I just came to the discussion group not long ago and for the first time since diagnosed 5years ago I felt supported. So I’ll talk to you about something that might make you feel a little better about being 25 with this diagnosis. Ok... I’m 45 so got the verdict at 40...and i think I’ve had LS since young without knowing ... doctors would say I had eczema, that i was scratching to much. So juste saying since young I have very small labias and thought it was just normal. 20 years have passed and I’m pretty much the same not to much fusing although i do feel less sensation on clitoris for it’s smaller than before but really important to follow the steroid cream treatment and really give a try with the tips given by the ladies here it really helps. Living with LS is not easy and that is why as more experienced women some have found those helpful tips to accompany your treatment and it helps alot.... I do the cleaning with borax solution after loo , I cut sugar, moisturize with coconut oil, eat anti inflammatory ( try to) drink lots of water , cut stress  I always look for new things... but for now all the above can’t hurt. Be positive you’re not alone on this. Xx
    • Posted

      Brigitte! I just joined this a few days ago and am so grateful to you and all others with this rotten stuff. Emotionally I am not doing well because the irritation and pain won’t leave me alone unless I sit all day. I have lost weight and am having chills with no fever. Seems like more stuff may be going on...thank you for your support..
    • Posted

      Linda, dont stress we will be with you on this, i have to run but your at the right place to get better. Emotions are a big trigger in this your not alone we are all togheter in this all the same....When did you get diagnosed ? Your age ? we are far from being doctors but i tell you... with this desease we are left on our own a bit so the help  you get here will give you back your life...I will talk to you latter. First relax pls for stress doesnt help . One step at the time hun xx

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