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Just informally diagnosed, family history...

Posted , 6 users are following.

lichensucks
lichensucks

I'm 20 years old, will be 21 in May. I've been informally diagnosed with LS with a physical exam and my list of symptoms. Apparently I have some thinning white skin where I am not supposed to and the external itchiness and pain (sometimes like a throb, other times feeling like a bruise) near my clitoris I've been experiencing may be LS. I also have a long history of pain during sex, UTIs and yeast infections developing right after sex and other infections/trouble fighting them off. 

I know that in past years, doctors have said that LS isn't genetic, but my maternal grandmother and my mother both have severe cases of it, so I'm starting to think that it must be. I was thoroughly surprised though to find out I may have this disease already at 20 years old! My grandmother and mother were not diagnosed until their mid-to-late 30s, but who knows how long it went unnoticed.

They are having me take a probiotic, starting on an antianxiety or SSRI here soon, taking activated folic acid and b12 and using a steroid cream (Triamcinolone Acetonide) of a low-dose twice a day for 2 weeks, then off it unless I have symptoms to start. I know the only "true and told" way to get a formal diagnosis is to get a "pinch test" here in the USA and that makes me nervous. I'm waiting until things get more defined (I have no white spots yet) to go through with something as painful and infection-inviting as that since right now I'm just dealing with some occasional itching and pain.

My mother is 57. She has a terrible case of LS. She has had a hard time finding a specialist that our insurance covers even partially and has tried every steroid cream out there. She did a cold laser treatment once, but it was too costly. I'm worried I'll wind up like her.

What are your thoughts on hydrogen peroxide in baths? 

Washcloths or no? (I've always just used my hand)

Does hot water really worsen things?

How fast did yours spread or worsen and what was the symptoms?

Any other advice?

I haven't been able to have sex in a few months and I'm worried my life is going to be like this forever now. I barely got a chance. I'm cutting sugar pretty much out of my diet, as I've read from many of you that it worsens things.

0 likes, 6 replies

6 Replies

  • hanny32508
    hanny32508 lichensucks

    Posted

    INdeed, Lichen Sclerosis sucks.
    • hanny32508
      hanny32508

      Posted

      I would like to encourage you to look at the discussion "An Experiment with Borax".  This treatment may help you in a relatively short period of time.

  • Neldog
    Neldog lichensucks

    Posted

    There are several of us having good results with borax,  i saw a dermatologist last week who said borax was used in her country. ( Latvia) but not in the uk....   

    If you can find borax then you make up a solution with water and  dab it on a couple of times a day, if you cant find Borax then bicarbonate of soad. ( baking soda)  works nearly as well..

    all is not lost, you have found it  whist its in early stages.     Dont subject yourself to intervention like biopsies just yet.    If the treatment works what would you gain from a biopsy?    It wouldnt change anything.

    x

  • Sedg
    Sedg lichensucks

    Posted

    First of all my darling I am saddened to know you possibly have LS. With your mother and grandmother suffering, please I beg of you keep your own symptoms in a separate box (so to speak)😉 Try not to compareYou will be able to get control of LS and not let LS control you.

    I was diagnosed with LS 16 years ago when I was 50. So have been through all the crap and bad advice but now I am in control. 🙏

    Sweetheart my best advice is for you to join Lichen Sclerosus uk on Facebook.

    My experience on this site has been less than satisfactory as my replies have been monitored never to be seen again !!!

    So I would urge you to join Lichen Sclerosus-sclerosis-U.K. Support Group for Women on Facebook

    Then you can discuss all aspects of LS The Good The Bad and The Ugly with women who have experienced collectively and are fully able to give honest advice drawn from their own very personal journey with LS which can be dreadful.

    Your mindset and diet (already you are eliminating sugar which heats the body and feeds all kinds of conditions. ) my diet is clean and green and non processed

    Anyway, I have written a lot and look forward to seeing you on FB

    HaPpY DaYs

    Warm regards Stephanie x

  • Anna777
    Anna777 lichensucks

    Posted

    Hi L

    I was diagnosed early last year but had been suffering with symptoms for many years.  The diagnosis was a blessing because until then I had no idea how to combat the constant itching and pain.  To answer your questions, I have not heard of using hydrogen peroxide in the bath; hot water doesn’t bother me; and I don’t use a washcloth (gentle rubbing in the bath with NO soap works just fine.)

    This site is a godsend.  There are plenty of things you can do to feel better, and here are some tips I've found here that have made a huge improvement for me.

    -- Baking soda baths every other night (1/3 cup in the tub)

    -- Borax (sodium borate) treatment twice a day at first, then once a day during flare-ups, now a few times a week.  See “An Experiment with Borax.”  You can also soak in it in a tub with 1/6 cup of Borax.

    -- Coconut, emu or almond oils applied several times a day.  I switch off every week with a different oil.

    -- Cotton panties

    --Hormone therapy (although you are too young for that yet)

    -- Meditation

    -- Use a dilator to gently stretch the vagina and keep it from narrowing.

    -- Things to avoid: acidic or spicy foods, wine, wheat, dairy, sugar, tight jeans, soap

    One last thing, I also purchased toilet paper on-line that is not bleached with chlorine, which can expose you to toxic chemicals. The brand I bought was Green2, but there are other brands.

    In my opinion, if you try these things and begin to feel and look better, a biopsy doesn’t really seem necessary.  I never had one.

    I’m not in a relationship now, but when I was, I could still have sex, but no more than twice a week.  Now that I’ve had such major improvements, that may have improved as well.  All I can say is that if you follow these suggestions, it will get better, so don't give up!

  • jane31502
    jane31502 lichensucks

    Posted

    What exactly is the borax treatment 

    my cream helps the itching but cant put that on internal, any suggestions for that.

     

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