1. Community
  2. Women's health
  3. Lichen Sclerosus

New to LS - start here

Posted , 217 users are following.

Emis_Moderator
Emis_Moderator

Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/ - Information to help manage LS

http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain

http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.

http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health

Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/

http://www.bssvd.org/ British Society for the Study of Vulval Disease

This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf

Discussion on users' thoughts on causes of LS

https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583

Other discussion groups that may have relevant discussions to LS:

https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763

https://patient.info/forums/discuss/browse/autoimmune-disorders-3827

39 likes, 367 replies

367 Replies

Prev Next
  • joey20961
    joey20961 Emis_Moderator

    Posted

    How long have you had a diagnosis of LS? November '15

    Do you suspect that you have had this for much longer? About 3 years

    Is it currently under control? No recent flare ups

    When did the irritation start? I believe in my early adolescent years in the perianal region

    Has the area always been irritable? No, ever since a trauma injury to perineum the entire vulva has been weaker and aggravated..

    Are you suffering a flare at the moment? Yes since October 2015

    If so, can you attribute the cause to anything specific?No, possible stress and sugar intake

    Do you suspect that other members of your family may have had/have LS? Yes. My Mother.

    Do you have any other skin conditions along with the LS?  No, past acne

    Describe your skin type: Olive

    Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? None

    Have you been tested for high cholesterol? No

    Do you suffer from high blood pressure? No

    Statins? no

    Diet and exercise? Yes, most part healthy diet, occasional cheat days, athlete all my life

    Do you suffer from high blood pressure? No

    If so are you being treated for this? No

    Do you suffer from low blood pressure? Yes at times

    If so are you being treated for this? No

    Do you suffer from anxiety? Yes

    Have you taken steps to reduce your stress? I will be after reading all these posts

    If so what have you done? Excercise, music

    Do you have a flare-up of LS if something is causing you stress? Yes it really seems like it

    Have you had surgery related to LS? No

    Biopsy: yes

    Have you experienced other surgery? No

    Episiotomy: No

    Please list any of the prescribed topical creams you use currently

    Dermovate ointment (Clobetasol), Tacrolimus 0.03%,

    Emollients: Coconut Oil, Vitamin E, Baking soda spray, I was using Perrins Complete Cream, (started again)

    Barrier creams: no

    Alternative treatments: Mona Lisa Laser (1st session)

    What sort of products do you avoid when cleaning the area? Soap sensitive

    When do you wash? Before bed

    How do you dry yourself? Towel

    Do you wash in hot or cold water? Hot

    Do you dread having a poo? Yes.. What happens? straining, larger bowels, fissuring and pain some bleeding

    Does pee sting you? now it does because i have a blister

    What can you no longer wear? tighter underwear

    What do you now wear? normally no underwear and loose fitting pants

    Do any foods seem to make the LS worse? I believe sugar such as in hard candies

    Is this discomfort on already damaged skin? Yes, i have now two blisters which are sore...the perinium is thin skinned and red, sore. tears slightly with bowels or intercourse.. It makes the area susceptible to tearing as well as anal itching

  • cath38279
    cath38279 Emis_Moderator

    Posted

    Hello, I'm new here. I've had bad itchiness for 18 months, and the doctor has suggested LS (though there's been no biopsy to confirm). I wanted to ask: on the survey results, someone mentioned that hard water was a factor for them, and that they used a 'neutralising powder'. Could you tell me what that is, as I have problems with water too. Also, how much baking soda should i put in the bath? Thank you!
    • Morrell1951
      Morrell1951 cath38279

      Posted

      1/3 cup baking soda in a bath. I put a basin in the tub with 1 tbsp and have a squatting splash every night. I have hard water. I'm skeptical about the connection.

      Sorry you're one of us, but glad you found us.

  • kathy94347
    kathy94347 Emis_Moderator

    Posted

    Hi, I was wondering if i have the start of LS. I often on have very bad itching in the vulva area, Doctors have been treating me with diflucun bt after a few weeks the itching returns. I recently saw another gyno, I have a very small bumb on the right side of labia and she sad maybe a ingrown hair. This little tiny thing she could hardly see. And told me to use some cortozone cream on it. I bought some vaginal cream and the itching has seemed to stop for the most part. HOW can i be sure that i get the right diagnosis. I also have Haschomotos... I need the right diaginosis.. Help.. Thanks
    • Morrell1951
      Morrell1951 kathy94347

      Posted

      Kathy, it seems to many of us that LS and yeast are connected in a sort of vicious cycle. Over-the-counter hydrocortisone cream is not nearly strong enough to keep LS from flaring up. Do go back to the gynae, or a dermatologist if available. There are vulvar clinics in some cities.
  • jill21030
    jill21030 Emis_Moderator

    Posted

    Hello.  Today, after weeks of different meds and ointments my doctor thrust a leaflet about LS in my hand to read once I got home (together with a prescription for a strong steroid ointment).  I have never heard of LS  and would be very grateful if you could point me in the direction of the most useful info, eg diet, creams, things to avoid...    many thanks
    • Morrell1951
      Morrell1951 jill21030

      Posted

      Your doctor takes the cake, Jill! Start by watching Dr. Goldstein's webinar (linked halfway down the list of links – scroll to the top of this discussion). It's LS 101. The best thing you can do is cut out the big doses of sugar. We pretty much all have arrived at that conclusion the hard way. Don't look up photos of LS online. Those are neglected cases. You have a diagnosis. Use the ointment as directed, or as Dr. Goldstein says. More is not better.  
    • jill21030
      jill21030 Morrell1951

      Posted

      Thank you so much...   oh my!   The video showed me what to look for and how to look after myself.   I read the printout from the doc in the car before taking my prescription in.   The cream it suggested I wash with and use as an emollient stung like mad - when I looked it up on line I discovered it is no longer recommended.   This site is a godsend. Thank you.
    • Morrell1951
      Morrell1951 jill21030

      Posted

      Stick around. Stress (anxiety) is a huge factor in flare-ups and having fellow sufferers to talk to helps all of us. Nobody else wants to hear about our undercarriages. Sometimes a caring spouse does...
    • kathy94347
      kathy94347 jill21030

      Posted

      I am gluten, sugar, alcohol any thing white!! My diet consists of meat, sweet pot, vedgs, No tomatoes or pasta and i womens probiotic.. You can buy refergerated in a health food store.
    • kathy94347
      kathy94347

      Posted

      and Clob when needed!!

       

  • Enna1
    Enna1 Emis_Moderator

    Posted

    Jill I find your doctors treatment of you disgusting. I say if you are a doctor and you don't want to help your patients get out of the profession. You are not helping your patients and the tax payer in england has supported you through your university training. Moderator if you delete this message we know where we are - I am sick of hearing these poor people on different boards complaining about their treatment by their doctors. Iveq had my say now thanks

  • carol41095
    carol41095 Emis_Moderator

    Posted

    Hi

    have been suffering since end of January with what they think is lichen sclerosis. Have had 2 steroid creams from GP which have dealt mainly with itching but not with soreness.  Went to gynae last week and got dermovate but it seems to be getting worse.  I know I haven't been using dermovate for very long but am in terrible pain & soreness & can't walk around.  Also have added complication of period - how do people deal with this & LS?  Am in terrible state now and can't sleep.  Feel I will never get better & having problems coping.  Any suggestions welcome.

    • Morrell1951
      Morrell1951 carol41095

      Posted

      Hi Carol, you've come to the right place. Unfortunately the prescriptions take many months to settle LS down. That's why we're all here discussing things that help us. Most of us are more or less stressed-out, which makes LS worse and then we freak out about our new diagnosis! And what do we pig out on when we're anxious? Sugar! So, try to cut your sugar consumption down to a minimum (no piles of fruit, either) and do what you can to get calm (no looking at LS photos online – those are neglected cases, not your future!) Thse two things can make a difference fast. There's no cure for LS, but it is possible to get it settled down.
  • kathy39947
    kathy39947 Emis_Moderator

    Posted

    Just want to introduce myself, I was diagnosed via punch biopsy a few months ago.  Can't wait to read each and every post to familiarize myself with this "icky" disorder!!
    • denise59943
      denise59943 kathy39947

      Posted

      It's awful, isn't it? I'm having real problems coping, it's triggered my CFS and I don't know how to cope to be honest...
    • Morrell1951
      Morrell1951 kathy39947

      Posted

      Welcome! There's lots we can do to minimize flare-ups. The prescriptions take many months to make a difference.

      Cutting the sugar binges out and working on stress reduction can make a big difference quickly. We all freak out a certain amount after diagnosis. I did, even though I'd obviously had LS for 40 years. But we're going to be fine.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.