Living with lichen sclerosus? ??any advice helps. .

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So I've had recurrent yeast infections, itchyness, dry skin down there cuts, the gross skin. I thought it was from shaving. (And should i teframe from shaving? I feel disgusting when i don't??) But it's gotten worse and my period has gotten shorter so worried I went to the doctor. She took one look at me and referred me to a gyno cause she says I have lichen sclerosus and doesn't want to prescribe the wrong thing. By everything I've read I'm almost positive I have it even though I'm only 25. I have always kind of been in pain when I have sex. Not so much during but it's always been hard to start and after a while it starts hurting id have to tell him to stop on some occasions.. I never got why I thought it's because I'm very small framed I'm under 5'. So it made even more sense when I read that too. I scheduled an appointment with a gyno but I'm terrified of the biposy. Do I have to have it to be treated? How painful is it? Is it an in and out procedure? I'm so worried. I feel I've had this problem about a year but I didn't start getting the patches until a few months ago... I thought it could possibly be but no dr ever told me even after countless other tests I have no infection or stds so atleast I'm glad someone could tell me that. I'm just worried. And I'm scared or rather embarrassed and worried to tell my boyfriend. Any advice to anyone with this?

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  • Posted

    I was 31 when first diagnosed.  Sex would be painful during a flare and I personally never had the biopsy since it was not commonly done when I was diagnosed.   Get to the Gyno and get treated, it will take a while to feel better but you will.  Once confirmed tell your boyfriend because he will have to understand that there will be times when intercourse is not an option for you there for removing  any misunderstanding that you are refusing him because he is undesirable,  Best of luck
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  • Posted

    Hi there Giani,

    I had a biopsy done about a year ago. The procedure didn't hurt particularly, I was numbed of course via injection which just felt a little sharp, but really it's nothing to worry about.

    It's important that you have the biopsy done to make sure it is the correct diagnosis as Lichen Sclerosus does need to be treated and managed.

    I would absolutely stop shaving. I'm 46 and do the 'fashion' for shaving down there wasn't an extra pressure for me when I was in my 20's.

    You absolutely should not feel dirty when you don't shave, that just what society is preaching to you and as women we have enough pressures! Shaving is only s recent thing and I hate it how this has become another mainstream pressure for women.

    When you have the biopsy done, it will feel a little sore for about a week after, but really, it's not that bad and you can do it!

    Don't worry yourself too much and if you want to ask me anything else about the biopsy or LS, please do ask

    Xx

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  • Posted

    I was diagnosed by a gynae who went on physical signs and symptoms...  Like soreness, splits and white patches.  

      I then saw another doc who  was supposedly going to refer me to another gynae, who might prescribe low dose natroxone.  (Ldn)   The second doc wanted me to have a biopsy, which i refused as there is a possibility of being left with a sore patch that never heals,  i wrote to my first gynae and she agreed that there was absolutely no need for a biopsy.

    the hospital have  just written to me to tell me the second gynae has now left and they cancelled my appointment.     Fortunately i found a private doctor and got a prescription for ldn....  Only my second week of taking it, so no sign of results yet....

    i was given steroid ointment by the doctors, but it seems to make me worse.....  So i bought some organic Emu oil which seems to be keeping most of my problems in check......

    Shaving cream causes me a problem, so i have to be very careful to wash it off mmediately, but i do ok if i wax.  ( Ouch!)

    All i have met with, when seeing the doctors, is sympathy and embarrased silence.      Afraid it really is a nasty condition where you have to read up and try whatever you think makes sense.     

    If you have a diagnosis, question what would be gained by having a biopsy.....       If Ls is suspected you are given steroid ointment, if its confirmed, you are given the ointment, so the treatment isn't changed.

    Xx.  

     

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  • Posted

    My Gyno recognised and took a biopsy, numbing first.  They take only a tiny bit in a bio and I had no bad results.  It came back positive and I have had it for about four years now.  Only thing that makes it flair up is stress that I can tell.  I feel that the bio was helpful so that it could be treated properly.  I use a Estrogen cream about every three days and just emu oil every day and I feel great.  I'm 78 years old and a widow so I don't have sex anymore, don't know if that would make life a bit more difficult or not.  If it ain't broke, dont fix it, my motto.  Don't be afraid of a bio it really should make you more knowgeable on treatment.

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  • Posted

    Yes, stop shaving, at least until you get the symptoms under control.  Shaving down there doesn't necessarily mean you are bowing to modern conventions of beauty or not being a strong woman.  Discharge can get trapped in long hair and irritate the area, so it's nice to keep it at least trimmed.  I have found that trimming up rather than fully shaving keeps me feeling just as clean but doesn't irritate my skin.  But definitely refrain from shaving at least until you have your symptoms under control.  

    A biopsy may not always be necessary--I was diagnosed without one (I was also around 25).  When the clobetasol started working, that was confirmation enough for my gyno that what I was dealing with was in fact LS.  The clobetasol ointment (not the cream--that actually burned my skin) continues to work well for me at 2-3 nights per week, but the only thing I've found that helps control the symptoms and make my skin more elastic and keep the pain and itching at bay is pure emu oil.  I know a lot of people talk about it here and it really is awesome for LS (in fact, I've started using it as a moisturizer on my face as well and it works really well for that, too).  Use it daily, even a few times a day if you want to, and also as a personal lubricant.  

    Some people prefer to alternate between that and another type of oil, but I get better results when I stick with just the emu oil as a complement for the results I get from the clobetasol.  I also don't wash with soap, just warm water, because even the most gentle soap is very irritating.  Some people here use an emollient and could probably recommend a specific one.

    Explain to your boyfriend what is going on.  If he isn't sympathetic, then he may not be right for you.  If you have LS, it's something you will be dealing with for the rest of your life.  You'll need someone in your life who will be understanding about your condition and open to other ways of bonding physically besides sex when you are flaring up.  Try sending him some good articles about LS to read. 

    Society makes you feel like if you don't enjoy sex there is something wrong with you, like you're less of a woman.  I'm not saying you can't get to the point where it's no longer painful (I have my condition controlled enough, finally, that I can enjoy it without pain) and you won't enjoy it again, but I'm saying please don't feel like you have to power through and continue doing it when it hurts.  That will do far more damage in the long run.  If your boyfriend can't understand that, then I would seriously think about whether or not you should stay with him.

     

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  • Posted

    I had my biopsy a little more than a month ago. I was given a small shot to numb the area first and thankfully the medicine worked well to numb me there! I was definitely sore and uncomfortable for several days but I am OK now. There was never any dreadful pain. I did not bathe the area with any type soap after that and have only been bathing there with a "skin calming oil wash" ever since the procedue and suspected diagnosis. Soap is BAD!

    My biopsy came back positive for LS which is what my gynecologist suspected from the beginning. I'm using the  clobetasol ointment now and the itching has lessened. I've been readng about the Borax treatments on here tonight and I think I will try that very soon too. I don't want to use the steroid ointment too long.

    I have also purchased cotton panties and been sleeping without panties at night.

    I encourage you to READ as much as you can on this site as there are lots of ladies with years of trials and successes and I'm learning from them.

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