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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

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  • stephanie90562
    stephanie90562 Emis_Moderator

    Posted

    I have cried tears of relief to have found this forum this morning. I am a 42 year old mum with a new baby. I went to gp last month as id been irritated down below for some time. post natally I'd noticed my labia was shrinking on one side and there were white patches with areas of inflammation. this really scared me. I was given a weak steroid ointment and told not to Google my condition as it would likely worry me! And the word pre cancerous was used. So I have spent many an hour worrying myself into a very anxious state and laying awake at night when my baby was sleeping, wondering what was going to happen to him if I wasn't around to take care of him. I realise that sounds very dramatic but I was scared. You see, I'd actually noticed smaller white patches and had soreness and itching years ago but the nurse I'd shown then had just dismissed it. All I could think of is that I'd had this disease for years and that it could have been treated way back then. I went back to the gp last week and saw a different one. I was given dermovate and this gp was a bit more informative and reassuring - but I was still very worried.

    Reading your posts has helped me immensely and I'm so grateful to be able to learn of others experiences and suggestions of what can help with symptom relief. I have had 4 courses of antibiotics since having my son (post cesarean complications and mastitis) and I now can link increase in symptoms with this medication. I am also relieved to realise that my reduced libido over the years due to uncomfortable intercourse could also be attributed to having Ls.

    I am seeing a gynae consultant in a few weeks to do with my ongoing cesarean problems and I am going to ask him/her about my Ls too at my gps suggestion.

    I also would like to explore the dietary changes and supplements that could help and if anyone could point me in the right direction I'd be very grateful.

    • sandra01720
      sandra01720 stephanie90562

      Posted

      Welcome to this LS group. Most of us flip out at diagnosis. I cried and panicked.... Could hardly eat. The ladies on here helped me tremendously. There's great support. I think j started with LS in my teens. It faded for some years and then came back in a new spot. I'm 45 now and had a major flareup last spring and my LS spread over the classic figure 8 area. 😒 I complained to gp's over the years and didn't get a diagnosis till last spring. Apparently cancer from this is very rare. I freaked out about it a lot at first.

      Many of us benefit from a low sugar diet. Some go gluten free. I noted your use of antibiotics. I also was prescribed some months ago and took a good probiotic to bring that balance back. I believe some use probiotics on a regular basis for the LS. I would really recommend you get a good probiotic ( high count and it should need the refridgerator). )

    • sandra01720
      sandra01720

      Posted

      Oops that sent before I was ready!

      Many of us use a moisturizer such as coconut oil or I prefer extra virgin cold pressed olive oil after each toilet use, spread it over affected areas. It brings so much relief. Wash the area off at least twice a day. Some spray off after each toilet use. A lady on here experienced signify the release of fusing by bathing 20 minutes in baking soda water every other day. (1/3 cup in tub). Hang around. There's a wealth of info here and tremendous support. There are things to do to help ease symptoms.

    • stephanie90562
      stephanie90562 sandra01720

      Posted

      Thanks so much for replying Sandra. I appreciate your help and recommendations for diet changes and I am keen to try a probiotic -is there one that you'd specifically suggest I use please? I'm also going to try the olive oil or coconut oil to see which one is best. Going to ditch my synthetic knickers this weekend and treat myself to some nice comfy cotton ones. Oh and buy baking powder.

      Thanks again for your help ☺

  • lauren33630
    lauren33630 Emis_Moderator

    Posted

    I'm due to see a genital dermatologist on Tuesday for "Official diagnosis" but my gp took one look at me and said lichen sclerosus, and I know after 18 months of uncomfortable vaginal hell that it is LS. Ive been tested for all sorts and even given long-term treatment for thrush (side effects were AWFUL) and at last i am not just thinking this is all in my mind.

    I am just posting atm because i am having a pretty bad flare up. I found over the xmas period and new year i was pretty symptom free for maybe 1-3 month and stress free. At the moment though its back with a vengeance! I am one cut after another and my whole vulval area is just red and inflamed and sooooo sore. Last week the pain was unbelievable. All i have is emu oil atm.

    I am trying low oxalate diet but not sure thats doing much for me since ive started this massive flare up has happenes....

  • JanSpencer
    JanSpencer Emis_Moderator

    Posted

    I'd never even heard of LS or LP until a week ago but I now know I've had it for 40 odd years and from the start of puberty. I have been tested for just about every VD under the sun and LS & LP was never once mentioned to me. I suffered years of embarrassment, annoyance at the constant itch and wondering if other women suffered like I did.

    I went into the menopause 3 years ago and magically the broken skin lesions stopped. It was only when I had my scheduled smear test and the nurse noticed an ominous white patch, that I realized there was still something there. Biopsies have shown it to be squamous cell carcinoma in situ but tests for HPV came back negative. It did show up LS though, which of course made me look it up and realize that I've had this since I was 12 years old. I think mine is LP because I've had no labia shrinkage.

    SCC is very slow growing but its important that we check our vulva as regularly as we check our breasts. My SCC doesn't look like the old lesions or patches of white skin. Its white but almost transparent  as though you could almost see right through it.

    Keep an eye out for changes ladies. You know the risks, I didn't and both LS and LP can sometimes turn into SCC

    • sandra01720
      sandra01720 JanSpencer

      Posted

      Thanks for the warning. I am going to make an appointment with my Gyno. Was shoving it off. Just don't like being examined down there but I have had LS for many years which probably increases the risk.
    • JanSpencer
      JanSpencer sandra01720

      Posted

      Yes it does increase the risk Sandra so getting checked out is a good idea. They can do a vinegar test which will show up any cancerous lessions on the skin
    • JanSpencer
      JanSpencer sandra01720

      Posted

       

      Yes, my gynecologist is fairly certain its in situ and I will shortly (I'm not missing my holiday so it will be done as soon as I get back) be having a partial vulvectomy.

      Good to hear you have made an appointment but don't be anxious....Many people have LS/LP without ever having further problems.

    • sandra01720
      sandra01720 JanSpencer

      Posted

      All the best to you! Your attitude is admirable. Let us know how your surgery goes!
  • Samfire
    Samfire Emis_Moderator

    Posted

    Hi. I am new to the forum and have my GP who is a dermatologist thinks I have LS and is sending me to Gynae for confirmation.  I am in a lot of pain and discomfort at the moment and on a mild steroid cream to start off and see that I don't have a reaction.  My clitoris is white now and I'm very raw and inflamed down below. Thank you for allowing me to join
    • lynne1945
      lynne1945 Samfire

      Posted

      Hi Sam

      just noticed your post and welcome, even though it's not a great place to be. Hope by now you have spotted the links above and maybe seen Dr Goldsteins webinar. There's lots of help here, join the discussions and you will see how kind everyone is. 

      Good luck with your appointment. I have to say, in my opinion anyway, you are better off with a specialist dermatologist in vulval health if you can access one. Of course that may be after you have your diagnosis. If you are lucky that diagnosis can be made without a biopsy.

      In the meantime, try to cut out sugar completely from your diet, it will help so much with burning and inflammation. 

      And if you do have one of the Lichens, read, read and read everything you can. 

      Incidently, the moderator here, Alan, leaves us ladies to do the 'meet and greet' stuff, which is fair enough as probably 97% of posters here are women. Morrell usually does it, and wonderfully well, she's so knowledgeable, helped me enormously when I joined last year. Hope she's well and having a holiday. We miss you though Morrell! X

    • Samfire
      Samfire lynne1945

      Posted

      Hi Lynne. Thanks very much for your reply and I have spotted the links smile. The sugar is going to be the toughest, as I take seroquel/quetiapine which has a terrible side effect for severe sugar cravings - I do reasonable well, but there's room for me to do much better.  My GP has already started me on the Eumovate steroid cream and 8 days in I am only now starting to get relief.  I am headed to Spain and dread the heat, as I always get yeast infection and a flare up of my symptoms with cystitis.  I'm also nervous that my condition will be so well controlled by the time I get to see my Gynae, that they will doubt the LS, so I'm gonna insist they do the biopsy.  It's great to have found this site - really it is.  Thanks so much for having me. 
    • Samfire
      Samfire

      Posted

      Also - forgot to mention that my clitoris and urethra area are white. I'm assuming this is classic LS
    • mary09950
      mary09950 lynne1945

      Posted

      I am glad to see this forum. 59 years old, dealing with LS for about six months. GP did not say anything about diet. Why do you say sugar should be avoided? Thanks for all information.
    • lynne1945
      lynne1945 mary09950

      Posted

      Hi Mary

      if you read some of the threads within this site it will tell you all you need to know re sugar and Lichen. For one thing most of us are susceptable to opportunistic nasties like candida and bacterial infections jumping on our nether regions which is sometimes like a Petrie dish because of the moist creamed up conditions. 

      I can tell you that I was a major major sugar eater, sweets and chocs, anything. I suffered badly the first three months after diagnosis until I finally took the advice from here to cut sugar. Major improvement, less burning, no more thrush. I'm sold.

      Sure it's hard, but I am an all or nothing person and a control freak lol (probably why I have LP) 😕 And I cut out all preservatives and all sugar and because I have flare ups in my mouth, the nightshade family as well. 

      As for the GP not telling you about your diet.....  I say nothing!  

      Except the things GPs dont know about LS and LP are many.

      good luck with everything and read heaps!

       

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