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Lichen Sclerosus

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    Lichen Sclerosus Survey Results

    These are the results from the Lichen Sclerosus survey. I am posting the raw data. If anyone wants to analyze the data they are welcome to do so. It might be good for a graduate degree. https://www.surveymonkey.net/results/SM-5BF8TW5D/

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    New to LS - start here

    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 guide to using the forums here: http://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums...

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  • Finally some treatment, a little late

    2 months ago I posted that I had had a vague diagnosis of 'possibly LS' from my GP and gynae. I was not prescribed anything and told to come back if it became 'bothersome'. I have seen my GP today and she apologized for not having picked up on a highlit area in the letter to her...

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  • I have LS and I think It can be controlled

    I have had LS for 4 years, what I have learned is the regular doctors can't help you at least in my case ,I have done research and came up with getting my hormones checked and now I'm on estriol it's a light dose and it's for the health of the vagina ,I was proscribed this from a gynecologist...

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  • Borax for lichen. Is it safe?

    I was diagnosed with LS 5 years ago.  I'm 55 and went thru menopause about the same time.  I'm on clop, and estrance.  For the last 6 month it is getting worse.  I ordered Botox from amazon.  The brand prescribed for life. 100 percent pure, fine granular, USA natural...

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  • New diagnosis

    Hi My doctor has referred me to a gynaecologist but it’s 6 weeks away and I’m really worried. 

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  • Split in pereneum - difficulty passing stools

    Hi, I know this query is not very pleasant, but has anyone had difficulty with scar tissue around their anus causing difficulty in passing stools and what can be done (self help or from a professional) to ease this?  My stools are now mostly pencil thin and each time I go the split(s) and bleeding...

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  • Protopic V LS does it help?

    Hi i have been trying to find anyone who is using protopic to fight LS. I'm using clob but have been given protopic as an alternative! Not sure what i should do clob is holding it mainly at bay but i have shrinkage of the labia and issues of Splitting if not careful. 🙃

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  • Dead Sea Salts

    Have any of my fellow sufferers ever tried bathing in Dead Sea Bath Salts?  Good for psoriasis.  Thinking it should be good for LS???? Any thoughts?

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  • Recently been diagnosed with LS

    Hi. Went to my GP recently as I had noticed over the last few years my clitoris was becoming more occluded. I thought it was because I had put weight on over the last 5 years and it was becoming more fleshy down there. I have had the occasional itch from time to time, but nothing to even think I had...

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  • Swimming pool and lichen sclerosis

    I was diagnosed with LS last year finally after months of tests etc. I also have IBS and had been depressed before I retired. I joined an aqua aerobics group which I really enjoyed and it did wonders for my well being. Unfortunately my LS keeps flaring up and I don't know whether it is the water...

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  • Lichen Schlerosis is unbearable

    I was diagnosed with Lichen Schlerosis in 1991. I was only 42. My doctor at the time was an expert on it. He is the one that came up with the testoserone ointment. He formulated it. I've been using it since 91. I worked well for a few years. About 10 years ago it started getting worse. Now the itching...

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  • An Experiment with Borax

    So, I've been in Vietnam now for just over a month. Haven't had any itching, but the white plaque has expanded and looked like a bit more fusing had occured. Panic set in and of course I was trying not to. However, now that we're here, my husband has been able to start doing more research...

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  • Do you need biopsy to confirm LS

    Just been seen by doctor who thinks I have LS and referred me to consultant and told me I will probably have a biopsy to confirm. I also suffer from interstitial cystitis which I try to manage myself so im beside myself wirh this new news. Apart from an irratating itch I dont seem to have any other symptoms,...

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  • Help different advise clob v protobic

    Hi I'm under a dermatologist and a gynocologist and gyno wants me to use clob gold standard as he tells me. But dema guy wants me to use protopic tacrolimus monohydrate. I'm confused. Have been using clob for 3 years kept is under control mostly it is creaping on wards but slowly. I'm ...

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  • Rectal misery

    Here I am again. Look, I'm so down and blue and scared about my rectal issues. I've had LS there for many years. I sort of stayed on top of it since diagnosis though I often have itching. Well, right now I must be flaring there. Some on here have said steroid is too harsh for the anal area. Is...

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  • Lichen sclerosus Clitoris disappearing

    Hi, have been diagnosed with lichen sclerosus for a few years. The mad itching has stopped and I though it all better but to my horror, my labia minora and clitoris have practically disappeared. i know some folk have said the parts have fused rather than shrunk. Is this true even of the clitoris? I can't...

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  • Lichen sclerosis treatment

    I have a patient who had been suffering from LS for 2 yrs now. He had terrible itching, whitish skin in the perineum and anus, and a thickening of tissue. He was diagnosed with LS. I gave him a chinese herbal antifungal paste. It burned at first for a few days, then the itching stopped. We are waiting...

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  • diagnosed with ls over 10 years ago

    Experiencing worst flare up ever!! Locum Dr not much good, havent been seen by gynecologist or dermatologist was told no point. Given Dermovate but can't  tollerate pain of applying it. Having bicarbonate of soda/coconut oil baths and applying vasseline and emuloid. Taking loads of painkillers...

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  • Spongy projections

    I'm sorry to flood this site. I'm just going through a rough spell.  I have a very soft spongy painless projection in my anal/ perineal area. What is it? Anything to be concerned about? Seems to me I remember someone asking a similar question sometime ago.  

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  • Plexus for LS?

    Has anyone ever tried Plexus for their LS? This might only be an American based company, for those outside the US. It is listed as a possible help for autoimmune diseases, so I was curious if anyone else had tried it.

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  • Rectal pressure and LS

    I have had LS for years and have struggled with it in my anal area. Sometimes my skin is raw and I have unpleasant sensations. Lately I've been having some rectal pressure too. Have an appointment with my gynocologist for my LS and will prob ask him but I'm so scared it could be something sinister....

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  • How to find a Lichen Sclerosus specialist in the UK

    Found on  Lichen Sclerosus Facebook group. British Society for the study of Vulval Disease have a map search for UK specialists. There are teams all over the country, it seems many of them are multi-disciplinary. As they are multi-disciplinary I think it may mean that they have gynae, Dermatologsts,...

    Posted
  • Patches

    I was diagnosed with LS a few month ago. Started with a couple of patches on my breasts but they are spreading and now all over quite a lot of both breasts. Have a couple on my torso as well. Was wondering if they will continue to spread. Am using hydromol when I shower and get sore sometimes but not...

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  • Failed prolaps problems

    I have had two ops to correct prolaps. Neither have bee successful. I'm going back to the hospital a new referral Worried i have swollen stomach which is caused by stress according to the dr. And i feel this is pushing down on prolaps. Can't seem to empty bowel. Feel a mess down below im 56...

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  • Ls releif

    i was only diagnosed with LS 1 Ive been using different types of home made remidies , I've made up 4 Tablespoons of castor oil , 2 drops lavender essential oil and 1 drop lemon grass essential oil . It helps to relive the itching. I also wash every time I pee. Pat dry then I smooth aloe vera all...

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  • Heat irritation.

    I just got a new job in an office. My symptoms up till now have been very mild which has been so great. But now that I'm sitting all the time my lady parts are getting a bit raw from heat I think. Any suggestions for a cooling cream or powder or something like that? I already wear very loose clothing...

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  • Biopsy and hereditary?

    I wanted to ask the group if their doctors are doing biopsy every four years on them? My doctor said this should be happening. The first time I had one when I was diagnosed has been a problem area for the last 5 years. Now today I am having another one and not happy about it at all. I know we have...

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  • Interested to know if any males have this issue

    And how they are dealing with the effects. I've had this condition for a couple of years now, apparently it's part of genetics according to my GP.  I keep having major flare ups and it's painfully sore today. Not sure entirely how things can continue as before, had a failed relationship...

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  • Buzzing

    Does anyone else experience continual 'buzzing' or 'fizzing' sensation rather than itching? It's rather like a nettle sting.  I have still yet to get a proper diagnosis but GP believe this symptom plus fusing to be LS. I have no white patches. I have started swabbing with borax...

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  • Clobetasol & Lower Abdominal Pain

    Hello! How nice to find a group of women with the same affliction (and also how sad that there are so many of us that we have our own group!). I was wondering if anyone has experienced lower abdominal pain (feels like gas cramps but isn't gas) using clobetasol? I've had this pain for almost a...

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