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Lichen Sclerosis Support Forum

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Forum: Lichen Sclerosis     All Forums 
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  • Emu Oil and Lichen Sclerosus   britcher   28d
     
    I am a 68 uear old female diagnosed with lichen Sclerosus 3 months ago. ... I have not yet used a steroid cram and would like not to. ... I read of the suceess of one person wth Emu Oil and tried it with amazing success. It cleared up the itch immediately and I use it several times a day. I have just ordered a pint of it on line and plan never to be without it. ... My question is ... will this prevent the horror stories that I am reading about such as fusing and deformities? ... I have not yet experienced this and am afraid to even think that this may happen. ... Th Emu Oil is just amazing and so comfo ...   [retrieve this message]
  • Edited   #178214   5mo
     
    Iíve had Lichen Sclerosis for years. A few drops of sweet almond oil on the tissue that one uses after a toilet visit will combat soreness and odour...   [End]
  • Meds not working   doodleone   5mo
     
    I was diagnosed 4 years ago, and have had 3 reoccurances. Every other time the Steroid cream helped immediately. This time it is not working...at all. 2nd trip to Doctor have me a stronger steroid which made it much worse...with inflamed red skin appearing within a day. ... I am at wits end....I am also having a wierd new symtom...an itchy butt! Surely it is a reaction, perhaps allergic? I canít sit for any ammount of time without being insanely uncomfortable, both by the itchy butt but it seems to be a precurser to the crazy itchy genital area. HELP! Iíve tried oat meal baths, washing with w ...   [retrieve this message]
  • Protandim, Diet, Nutrition   katepoet   11mo
     
    Lichen sclerosus (LS) is classified as an íautoimmune diseaseí and regardless of whether that classification fits, it has much in common with other diseases in that group. Therefore, things that may help other diagnoses (DXes) may also help LS. ... ... Consider an anti-inflammatory diet. Eliminate gluten and dairy from your daily diet. Then, cook anything that is high in lectins, which are very inflammatory, for at least 20 minutes in a pressure cooker to destroy the lectins. (Potato, tomato, eggplant and other nightshades; dried beans and peas; peanuts;soybeans). ... ... Consider supplements which ...   [retrieve this message]
  • Lichen Sclerosus KEEP HOPE   BAE89   15mo
     
    Hello everyone, First off I am 24 years old, I was diagnosed with Vulvar Lichen Sclerosus at 23 which was about two months ago. I had been suffering for maybe 6 months prior. I was lucky to have a OBGYN who knew what she was doing. I scheduled thinking I had some sort of progressed yeast infection or something, she was concerned when I pointed out the white spots that were forming and gave me a biopsy. I know many women can go years with being misdiagnosed so I am thankful for that. Unfortunately, the reality is still hard to deal with some days. I am on Clobetasol right now, once a day be ...   [retrieve this message]
    • Hi, I was diagnosed a couple of weeks ago after six months...   Eatbroccoli   15mo
       
      Hi, I was diagnosed a couple of weeks ago after six months of progressively worsening pain and multiple faulty treatments from 3 other doctors. I donít have the itching or white spots but I have a lot of redness, what feel like tiny tears or raw spots, and most of all sex is pretty much unbearable now. As soon as my boyfriend even touches me with his hand it feels like Iím on fire. I turned 31 this week and feel totally lost about this disease. Clobetasol doesnít seem right to me. I feel like its elevating my tenderness so after so much googling I found a ridiculously expensive Ēcreme com ...   [retrieve this message]
      • Hi EB ... ... Reading your link makes me so sad because yo...   Robertina98   61d
         
        Hi EB ... ... Reading your link makes me so sad because you are so young to have LS. I am nearly 60 and have been diagnosed also 3 month ago. Looking back I realise I have had it for much longer - possibly 10 years. I have been back and forth to the doctors over the years only to be told I had thrush. Like you I have never had white spots. When I had sex with my husband the pain was ridiculous. I felt as though there were tiny paper cuts on my vulva - which was bright red. I wash with Hyromol which calms the burn and itching down for a little while. The steroid cream was great at first ...   [retrieve this message]
  • prescribed Clobex   bart2011   16mo
     
    Last week my doctor prescribed Clobex lotion for what he suspects is lichen sclerosis. (I am waiting to see a Gyno to confirm this.) Iím trying to find out if anyone else has been prescribed this lotion? Iím to apply the lotion twice a day for two weeks than once a day for two weeks. I always make sure Iím clean and dry when I do so. The stinging is unbelievable. Is this normal? Have I been given the wrong drug? Some of the side effects of this drug is thinning the skin and it can be absorbed into the bloodstream causing further problems. I have read several of the messages but nowheres ...   [retrieve this message]
  • Image Embedded In The Clear?   CLEW   20mo  Ü C Ü
     
    Dictyostelium Discoideum. ... ĒIt is able to move, possibly by the streaming of mucilage along the surface. When it comes to rest on a suitable surface(even under our skin & scalp!) it gives rise to filamentsĒ. ... ... Filaments like this red and white algae that runs through, what I believe is a colony of this clear slime mold: ... http://curezone.com/upload/_M_Forums/Morgellons/032.jpg ... http://curezone.com/upload/_M_Forums/Morgellons/030.jpg ... http://curezone.com/upload/_M_Forums/Morgellons/0381.jpg ... ... Looking at the big picture it looks like a nearly invisible lichen maybe? ... http://curezone.com/u ...   [retrieve this message]
    • Image Embedded your "algae" looks like ...   fungihomeworld   20mo
       
      it may be a cyclodextrin tubule . ... I grow them everywhere..skin, scalp, urine, stool.. ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... http://curezone.com/upload/_M_Forums/Morgellons/FHW/Urine/uricross16apr12.jpg ... ..fiber in the process of being formed in a urine drop. ... Note how the ĒchunksĒ of gel are being set up in ... individual ĒcompartmentsĒ..very much like what is seen ... in the completed fibers ..a tubule made up of compartments; ... each with a ípayloadĒ of some sort.   [End]
      • Image Embedded Fungi, ... For some reason my post reply and images keep g...   CLEW   20mo
         
        Fungi, ... For some reason my post reply and images keep getting knocked before I can get them up. This has happened three times already and Iím very frustrated. I really like how you annotate and give PH and everything. I am so lacking in organizational skills! : ) ... Hereís a few filament algae I ĒcaughtĒ on clear packing tape. ... These things had me itching like crazy from head to toe... ... ... Resembles an anchor worm: ... http://curezone.com/upload/_M_Forums/Morgellons/MVC_001F.jpg ... http://curezone.com/upload/_M_Forums/Morgellons/MVC_027F.jpg ... ... This one has a very spiky head: ... http://curezone ...   [retrieve this message]
  • Freedom from Lichen Sclerosis   LSFree   21mo
     
    I have been a sufferer of lichen sclerosis for many years. I had, and please note the word HAD, vulval LS. I used cortisone cream daily and should I forget to put on that dab in the morning I would be in agony for the rest of the day. Like other LS sufferers I suffered skin change and itching which would draw blood. I went to a number of gynaecologists who confirmed the LS. They told me it was incurable and a possible pre-cursor to cancer. I was very distressed about my condition but seemed to manage it with the cortisone cream. ... ... In September 2011 I decided, quite unrelated to the ...   [retrieve this message]
  • Lichen sclerosis   roxygirl56   21mo
     
    I have had lichen sclerosis for about 22 years. The past year, I have had frequent flare ups despite using meds. I have also had urinary leakage due to a prolapse. I suspect that the urine on a pad is making the lichen sclerosis worse. I saw a urogynocologist who is reccomending surgery to support bladder and uterus. I am going back and forth about the surgery. Has anyone had the sling surgery using pig tissue? If so, what was the outcome? Has it helped your LS?   [End]
  • Help start an LS foundation in US   BaysideBadger   22mo
     
    I would like to collaborate to start an LS foundation in the US to try to find a cure for LS, provide support groups, and develop evidence-based educational materials as the research we fund develops. If you are interested in helping to ... start a US based LS foundation, please email me off the list. I look forward to us working together to make this a reality. Thanks   [End]
  • Lichen Sclerosis reversing   tessub   22mo
     
    For about 10 days, I have cleaned myself with just plain old ... tap water, after normal ĒpaperworkĒ, after urinating. I have ... had almost complete relief and absence of symptoms immediately. ... A more normal skin color is returning. Obviously, something has ... changed in my system to cause this. Hey! someone else give it a try ... and see if you get similar results. Iím thrilled. Good luck!   [End]
    • I have had the same experience with lichen sclerosus (LS). ...   maryg1947   16mo
       
      I have had the same experience with lichen sclerosus (LS). Rinsing with plain water after each urination helps, but for me cleansing after each urination with witch hazel on toilet paper (Tucks pads are too expensive) helps even more. I think that my genital area reacts against urine very strongly--perhaps even an autoimmune reaction. ... ... The first symptom I had of LS was many years ago when I had a habit of urinating in unusual ways--outdoors, in the tub. But then I started having bad experiences--each time I would urinate not in a toilet, I would have symptoms the next day of what I c ...   [retrieve this message]
  • Lichen Sclerosis Relief   tessub   22mo
     
    Iíve suffered from LS for probably 10 yrs. Recently had a biopsy to confirm thatís what it is. Have had some success in being comfortable using coconut oil ... on affected areas. However, in the past 3 days I have felt better than I have in ... years. The only thing Iíve done differently is that after urinating, I wipe as usual, THEN, I CLEAN THE AREA WITH PLAIN WATER. Iíd recommend to anyone to explore the concept that possibly oneís urine chemistry changes, causing the skin to react. As I mentioned, itís only been a few days, but the difference has been wonderful. Hope this works ...   [retrieve this message]
    • I have had the same experience with lichen sclerosus (LS). ...   maryg1947   16mo
       
      I have had the same experience with lichen sclerosus (LS). Rinsing with plain water after each urination helps, but cleansing after each urination with witch hazel on toilet paper (Tucks pads are too expensive) helps even more. I think that my genital area reacts against urine very strongly--perhaps even an autoimmune reaction. ... ... The first symptom I had of LS was many years ago when I had a habit of urinating in unusual ways--outdoors, in the tub. But then I started having bad experiences--each time I would urinate not in a toilet, I would have symptoms the next day of what I called a ...   [retrieve this message]
  • Cured myself, but it was lots of work   FixedUpABC   23mo
     
    I started having symptoms of LS when I was 23 years old (from what I can remember). It got progressively worse until I was finally diagnosed at 26. I did a ton of research and started seeing two alternative doctors about it. The symptoms gradually disappeared, and I have been symptom free for about 6 months. Based on all my research, it seems like the underlying cause varies from person to person, but I will briefly summarize what I believe were contributing factors in my case. ... ... 1.) Uncomfortable sex and/or sexua| abuse. There is evidence that sexua| abuse can cause LS, althoug ...   [retrieve this message]
  • Recently diagnosed with LS   zenkitty   24mo
     
    Iím 48 years old and have always been healthy. The itching and tenderness began a few months ago. I chalked it up to a minor infection and irritation from lots of sex with my boyfriend. I noticed a slight discoloration first and thought it may be the beginning of menopause, although I still have very regular periods. Within a week, the itch became unbearable and the color was almost completely gone in my labia. I searched online and discovered the disease, LS for the first time. It was confirmed with a biopsy 2 weeks ago. I am trying to get all the info I can. I am very grateful to ...   [retrieve this message]
  • Lichen Sclerosis, I think I have found help!!   chloerosbotham   25mo  Ü C Ü
     
    Just before I start I am new to this site and am not very computer savvy so forgive me :) ... ... So I have had Lichen Sclerosis for over a year now and tried EVERYTHING!! Yes the steroid cream from the doctor helps the itch and ache but the thinning of the skin and the extremeness of it (never mind the hideous smell) is not not pleasant. ... ... So my daughter had told me about this Aloe Vera based company who sell creams and drinks for skin disorders and have had amazing results and is apparently the worlds best kept secret. I thought it was a scam and had my doubts and refused to put any money i ...   [retrieve this message]
  • Lichen Schelorisis help   g0954n   30mo
     
    Can anyone help me ... ... I have been diagnosed and had this for almost two years now, did have a biopsy back in june and they just gave me a seroid based cream and said to use it, when i had a flair up, but it does not every seem to go away ... ... Iím sure I have a smell now, and at the moment not sexually active, but, have met someone ... ... My outer lips seems to be disappearing, and its all completely white, so my question is, can i have sex, will i split, how do i bring this up in conversation (obvioiusly before we have sex), will it ever go away (not the sex) the soreness, the horrible feelin ...   [retrieve this message]
    • This forum does not seem active. You should go to Lichen S...   gibby   30mo
       
      This forum does not seem active. You should go to Lichen Schlerosis forum on yahoo and youíll get more feedback.   [End]
    • REVERSE Lichen Lichen Sclerosis!! 2/2012   healthygirl110   26mo
       
      Iíve been able to reverse Lichen Sclerosis by going on a Low Oxalates diet. What are oxalates? Oxalates occurs in low to high amounts in a wide range of plant foods including fruits, vegetables, legumes, grains, spices, herbs, and almost all nuts and seeds. Meat, dairy, and eggs contain negligible amounts of oxalate. All of these foods are either low, medium or high in oxalates. ... ... How does eating a low oxalates diet solve Lichen Sclerosis? For me I have a leaky gut. Why or how did I get a leaky gut? I have celiac disease.. (FYI..Oxalates from food travel out of your stomach and create a p ...   [retrieve this message]
  • unfuse?   wantingcure   30mo
     
    hi..i would like to know if anyone has had any positive experiences with reversing the effects of the fusing of the inner lips..labia minora? i havent ever really had sizable ones..but what i did have now seems to have fused into the vulva.. very dsiheartening.. any feed back welcome thanks   [End]
  • Lichen Sclerosis cure for me   buddysgirl   32mo
     
    I have had Lichen Sclerosis for almost 10 years. I have finally found what keeps it almost completely in remission. I take Culturelle (probiotic) everyday. I do not use soap. I use a tiny bit of 100% all natural shower gel and rinse well. Every day I coat the area with Aloe from the plant not bottle and Vitamin E capsule opened up. If I ever do get a split, I use Aquaphor for 3 days and it is clear. My skin is pink now and not white. I have no itching or pain. I also stick to almost completely all natural diet. I have for the feminine pads would cause a split so now I use cotton washable p ...   [retrieve this message]
    • Thank you for your tips on the probiotic. My doc didnít sa...   tarad1993   27mo
       
      Thank you for your tips on the probiotic. My doc didnít say anything about it. I got diagnosed last year with Lichen sclerous (after doing a biopsy). I had the Mirena IUD put in back in 2009. At first I was excited. I have not had a period since I had it put in. I am just wondering if the two could be related. I have started since 2010 getting cysts on my inner thighs and vaginal area. And I have noticed (along with others) that my hair is falling out. I have found others whoís hair is also thinning from having the Mirena but none have mentioned LS. Have you heard of anyone ge ...   [retrieve this message]
  • Lichen Sclerosis help   #143616   3y
     
    I was diagnosed with this horrible problem a few years ago, altho from pictures i have seen, i am thankful that it was perhaps on the mild side. However, still suffered from the same problems. My specialist said NO SOAP, and use vasoline. Yeah right!! Like I wasnt going to use soap!! Time went on and nothing improved, then I finally came across DOVE soap and thought this should be OK because it wasnt really soap and supposed to be very mild. After a few days everything took a major turn and things started to improve. Then one day I couldnt buy the normal blue and white boxed DOVE soap ...   [retrieve this message]
  • lichen sclerosis sucks!   smcmahon   3y
     
    I am so frustrated with lichen sclerosis. I have tried several different creams, ointments prescribed my dermatologist and GYN doctor and nothing seems to help. ... The itching is so unbearable and persistent. I do not know what to do or take for any relief. I just want to cry but I know that will not help.  ...   [End]
    • Iím so sorry you are going through this- I am brand new to ...   staystrong1   3y
       
      Iím so sorry you are going through this- I am brand new to this forum and thought maybe my experiences could help someone. Your post caught my eye. Long story short- Diagnosed with vulvar cancer in February 2010- also lichen sclerosis- Had severe itching for 25 years, creams, etc. and nothing worked. Prescribed by doctors too! Finally when I had lesions growing on the labia, I went to gyn again. Biopsy revealed nothing but non-viral, benign papillomas. She sent me to a gyn oncologist to do the excission of the area and get a second opinion. excission was done and pathology revealed v ...   [retrieve this message]
    • I was recently diagnosed with early stage Lichen Sclerosis ...   #145964   30mo
       
      I was recently diagnosed with early stage Lichen Sclerosis and was prescribed a steroid ointment. The ointment does give relief, but it only lasts a couple days, then I have to use it again. About 10 days ago I ran out of my usual bath soap (Dove) and used a bar of homemade soap. I donít know what was in it; it was one of those brownish tan rough square bars, perhaps with Lye in it. It gave me great relief, and I have used it every day since and have not yet had to use the steroid ointment again. I have had zero burning or itching.   [End]
  • Lichen Sclerosis (Sclerosus) HELP?   CAT1962   3y  Ü C Ü
     
    Hello, ... ... I am a mom of 4 daughters, and am 48 yrs of age. I have had horrible itching, with burning, broken skin on the labia for a couple of months now. The itching has been coming and going for a few months or so. I noticed the broken skin a couple of week a ago when I finally took a look! I have had a cryo procedure (3 yrs ago) for cervical dysplasia, have had 2 cysts on my cervix. I had a biopsy of a cyst and an endo biopsy last November (2010). Both were okay. I do need a hysterectomy due to large fibroids, one that bothers me (pain when sneezing, bending over suddenly, etc). I had ...   [retrieve this message]
  • Lichen Sclerosis   my   3y
     
    I have recently been diagnosed with LS. Itīs itches a lot. My gynecologist told me if I look for pages about LS, I can find that LS develops cancer,but she told me that is rare. How common is this? Someone who knows, have experiences about this issue?   [End]
  • LS help   #141319   3y
     
    Hello. I am new here and my wife has recently been diagnosed with LS. She is ultra sensitive and her using steriod creams Ēdown thereĒ is somewhat troubling. I had gotten her some NEEM oil and she said that it burns and she may be having an adverse reaction. We also have EMU oil, but this experimenting with different creams and oils makes life very difficult at times.   [End]
  • lichen sclerosum -avoid soap   marimar23   3y
     
    I have had LS for years - very itchy, raw crevices opening in my vulva and vagina which caused much pain specially during sex. First, I found out that shaving helped but then my LS has mostly cleared when I found out that the key is avoiding soap in my genitals. Instead of soap, I use an olive-oil facial cleanser in my genitals and body. It seems that using an *oil-based* cleanser is essential. I am also very careful of not letting shampoo run into my genitals as I wash and rinse my hair.   [End]
  • Biopsy - is this normal??   #138342   3y
     
    Iím new here and wondered if anyone could help... ... Iíve recently been given a working diagnosis (after years and years of being told It was anything else but OR in my head) of LS. ... I went for a biopsy the tuesday just gone and this has resulted in ALOT of bruising and swelling (the swelling is beginning to subisde) but now my vagina has a very strong and rather unpleasant odour - should I be worried about infection or is this common? ... Iím still waddling like a penguin lol ... Any advice or reassurence very welcome! ... Thanks ... ... S   [End]
  • pediatric lichen sclerosis   aneli   4y
     
    Please help! We just found out that our 5 year old daughter has pediatric vulvar lichen sclerosis. I was in complete shock when the pediatric gynecologist told us of her condition. In addition, we were told that she has an auto immune diorder that has targeted her genital area. Has anyone dealt with this with their kiddo(s). Thanks for any information you can offer.   [End]
    • hello, I am not an expert on this subject however one thing...   Tizona   4y
       
      hello, I am not an expert on this subject however one thing I might suggest is topical application of colloidal silver. I have seen colloidal silver applied topically work absolute miracles with all kinds of different skin disorders, Burns, cuts etc. ... ... In my opinion the very best colloidal silver on the market is advanced colloidal silver made by Utopia Silver. ... ... Itís very easy to put some in a spray bottle and sprinted on whatever area is affected. the more times during the day it is applied, the more affected it is. If you applied only once or twice, itís not very effective. It really ...   [retrieve this message]
    • Hello, ... more than it should not be alarmed if the lichen...   salem01   4y
       
      Hello, ... more than it should not be alarmed if the lichen appears in a small child can be treated effectively and completely disappear with growth. ... The care of a good pediatrician ... ... cordially   [End]
    • My daughter was diagnosed at 4, she is now 8. Go to a pedi...   drlalala   3y
       
      My daughter was diagnosed at 4, she is now 8. Go to a pediatric dermatologist. Being in the medical profession I have read every available article published on the subject over the past 4 years. In general Clobetasol is best for treatment and less potent ointments for maintenance.   [End]
  • Lichen Sclerosus a new therapy   salem01   4y
     
    Hi, I am a man affection from lichen sclerosus from almost 2 years. I write you to communicate you that in Italy he is applied with success a new therapy for the treatment of the vulvar lichen near the hospital Villa Scassi in Genoa. The publication of this search duration 4 years she has been published on the Plastic and Reconstructive Surgery, what follows is the link: ... http://journals.lww.com/plasreconsurg/Fulltext/2010/10000/New_Surgical_Approach_to_Lichen_Sclerosus_of_the.73.aspx ... ... In Italy we have one forum of ours of support to the address: ... www.lichensclerosus.altervista.org ... ... Th ...   [retrieve this message]
  • New Website just for Lichen Sclerosis   LivingwithLS   4y
     
    I learned about this great web site through my support group on Yahoo. There are over 4500 women in this support group who are living with LS. ... ... http://lichensclerosus.net/ ...   [End]
  • Lichen sclerosis, I would like to share my story.   Emuforlife   4y
     
    Hi, I am 30 year old woman. I was diagnosed with lichen sclerosis about 8 months ago. My symptoms began in my mid- twenties.As many of you know suffering with the terrible disease, there is not much help out there for us. I was determined to figure out how to treat my symptoms without using steroids or creams that in the long run would make everything worse. I searched the Internet pretty much day and night. I tried everything from tea tree oil to wheatgrass, aloe gels... ... Nothing seemed to be working. After weeks and weeks of feeling depressed,ashamed,worthless and less of a woman...Final ...   [retrieve this message]
    • I too have LS, there is a lot more to treatment of this dis...   LivingwithLS   4y
       
      I too have LS, there is a lot more to treatment of this disease than Emu Oil. Please check out this awesome web site created by Dee Troll. There is a support group for LS on Yahoo with over 4500 members. I have learned a great deal on how to manage LS and within 3 months I have not had a flair up and my vulva skin has returned to a much healthier skin. ... ... http://lichensclerosus.net/   [End]
  • Lichen Sclerosus   Littlebrook   4y
     
    Dear Friends, ... ... New to this forum. My daughter has Lichen and researching in the internet, I found some testimonies about Perrinís Blend and the Creme Complete. Has anyone had a real positive experience with this cream? Please, let me know what works and what is scam in your experience. ... Thanks!!!   [End]
  • first acute episode   pjp56   4y
     
    I recently (5 weeks ago) had an acute onset of burning, pain, and very bad inflammation. After several visits to various gynecologists, I was diagnosed with lichen sclerosus. My question to all of you is how long will this acute episode last? I have been told by physicians it can take 1-3 months. I have been using the steroid cream with no real relief. The swelling and burning is the worst part for me. I work all day sitting and by 2 or 3 p.m. I am so swollen that when I go home I have to sit on an ice pack for most of the evening. Any comments would help. ... ...   [End]
    • pjp, I am just coming to terms with this too. Was diagnosed...   angied   4y
       
      pjp, I am just coming to terms with this too. Was diagnosed this past week. I have never been through anything like this and am used to being hearty and Ēin controlĒ. Torture is the only way to explain it, so I understand how you feel. I think back to the few years I started itching off and on for no reason down there ( front and back) and just chalked it up to a mild yeast infection or irritation that went away... or getting older and hormone changes ( Iím in my mid 40s.) Now, after this first HUGE flare up a few weeks ago,and a visit to my gyno who said she is sure this is what it is, I ...   [retrieve this message]
  • lichen schlerosis et atrophicus   Roxy967   4y
     
    I just want to post this in case it can help someone. I was diagnosed with lichen schlerosis. I think I have had it at least since puberty (dark patches on my vagina that cleared up - there was no other effect). Then, had it on my skin (wrists, below my knees, on top of feet, etc.) at around 42 when I was having bad hot flashes - that is when I was diagnosed. It was not itchy. I went to a naturopath, and after a couple of years, it subsided. Now Iím 54, and my hot flashes are getting much less. I am slightly hypothyroid (no treatment) ... ... Now, for the past year, the LS has come back - on my ...   [retrieve this message]
  • Doctor in Illinois   bella123   4y
     
    Does anyone have a doctor that is familiar with LS in Illinois? ... Thanks much!   [End]
  • lichen sclerosus helped by low oxalate diet   #130184   4y
     
    I have suffered with LS for 2 years and finally found some relief. I did the íFast Track Detox Dietí and after a one day juice fast (8 oz cranberry juice + 56 oz water as well as 70 oz of water) I was itch-free, pain-free and had no inflammation. I mentioned this to my doctor and she told me that low-oxalate diet often helps relieve the symptoms of LS. ... ... I am also taking Clobetasol (a steroid) which may not be what others on this forum are looking for, but it has helped tremendously (the fast was before I started the medication, so I was able to start symptom-free and it has kept me that ...   [retrieve this message]
  • Help for Lichen Schlerosis   MillieMitty62   4y
     
    After battling six years with Lichen Schlerosis I finally went off all the following medications: H.R.T.ís, hormonal creams including Clobetasol and all antibiotics for urine, yeast and bacterial infections. ... ... (Note: Year 3 I went off H.R.T.ís) I was on antibiotics every 3-4 months for six years up until 3 months ago. ... ... Now (after 3 months) off all these meds. my skin is healing from what I can only describe as a Ēchemical burnĒ. No more stinging, burning, itching, lesions, swelling, dryness etc. ... ... It was a very painful process but worth it. With recognition by physicians and resear ...   [retrieve this message]
  • Edited   jenn2799   4y
     
    My mother was diagnosed with Ls almost 10 years ago. It took her awhile to find a treatment that would give her any relief. 5 years ago she had to have a lip removed because it had developed into cancer. For about the last year she has struggled again trying to get any relief. I just took her friday to get another biospy done,to see if she had devloped cancer again. How many treatments are available. The cream seems to work for awhile and than she is in so much pain. And I would like to see her be comfortable. Because my dad was diagnosed in November of last year with stage 4 lung cancer f ...   [retrieve this message]
  • lichen sclerosus relief   atooch   5y  Ü C Ü
     
    Please read if you have Lichen Sclerosus! I had terrible pain, sores, lesions, itching, clitoris shrinking and all of the most horrific symptoms of LS in the vulva and anal area. I have found great relief maybe even remission from my symptoms of LS. I did lots of research and there may be a big connection between LS and oxidative stress. You can do your own research but I started a major anti-oxidant assault on the LS from the inside and out. I started taken a pill called ďProtandimĒ that actually stimulates your own body to create huge amounts of anti-oxidants. It supposedly reduces ...   [retrieve this message]
    • Thank you for this. After nearly twenty years of no help or...   hochiwich   3y
       
      Thank you for this. After nearly twenty years of no help or advice other than using steroid creams it will be good to try something new and natural, although there is now little left to lose Ēdown thereĒ, but the symptoms persist occasionally. ... ... Iíll look for Calendula though Iím not sure Iíll be able to find Protandim, maybe there is something similar. ... ... Thanks again ... hochiwich   [End]
  • Lichen Sclerosis and Lupus?   wishforafallinstar   5y  Ü C Ü
     
    When I was 17 I was diagnosed with Lichen Sclerosis. Though very uncommen in my age group iíve learned to deal with itís issues. Recently, Iíve been dealing with alot of other symptoms related to possible lupus, and was wondering if anyone has thought of there possibly being a link between Lichen Sclerosis, and Lupus. Both are believed to be an autoimmune system disease. Iíve had many tests done (blood,ct scans,x-rays...etc) to try to find out what is wrong, yet they do say that Lupus can take years to properly diagnose.Any one have any ideas? I would love some feedback.   [End]
  • Terrasil also works really well...   #461   5y
     
    I started using it in May, twice a day and there is no itching, no burning. You can get it at the http://www.aidanceproducts.com ... website. The triple strength works best.   [End]
  • Yes to Sangre de Drago!   simplyqt   5y
     
    I canít thank the gal that reccomended this wonderful product. I hae tried many different products and none has helped on bit until I took a chance and ordered this. The relief from the awful itching is completely gone and it appears the lesions are healing. The trick is to get the sap on and get it dry BEFORE you put an clothes on. It does stain red if you rush it but dries really quick in just a few minutes. ... Again, please try this. It is not that expensive and what a relief. I feel like my whole life has changed. Now to get those vaginal dialators to get the insdies back where they shou ...   [retrieve this message]
  • New to site   simplyqt   5y
     
    Really glad to find this site. It has been a few years of unknown what was wrong with me. After a biopsy earlier this year, the diganosis was ls. I did some careful research and found that the steroid cremes were short term with more issues using that not using. I have tried Primrose oil and still take it. Am on my second bottle of Emu oil with little or no change. It would be nice to get a good nights sleep. ... It is ver helpful to find this site and no there are others out there with the same issues as me. With the increase of essential oils (fish oil) and trying to get my immune system in ...   [retrieve this message]
  • Lichen Sclerosis - FRIENDS I have found real help!Please t...   EnidKS   5y
     
    Please try Sangre De Drago. You can get it at http://passion4.amazonherb.net/QuickOrder.aspx. ... ... ... It heals the sores and also stops me from scratching at night. The helps seems to linger even if I donít reapply it each night. ... ... I am 55, have been scratching at night since I was a teenager and have a long story of sorrow. I went several years in pain until a dermatologist determined the skin was infected. I was also misdiagnosed, tested for herpes, told it was stress etc. ... ... ĒThe wound healing abilities of Sangre de Drago, are attributed to its active constituents: proanthocyanadins ( ...   [retrieve this message]
  • Lichen Sclerosis reversing   healthyat36   6y  Ü C Ü
     
    I have dealt with the pain and embarrasment of having this disease and the frustration of having something with no cure. Even though my husband is extremely understanding of the condition it breaks my heart to have to withhold intimacy and find alternative ways to have sex. Over the last few years I started to pinpoint what triggers it. First off, I am generally pretty active and I eat a basically healthy diet. I eat fast food only occasionally and I do like to have a beer and a burger or pizza once a week. I started having allergies around the age of 20 and was diagnosed with LS at 2 ...   [retrieve this message]
    • hi. thanks for your encouraging write up.. i have been diag...   wantingcure   30mo
       
      hi. thanks for your encouraging write up.. i have been diagnosed a few months ago with ls.. having lived with it for years. i drfinitely believe,as it seems you do,that the cure will come from treatment internally. i have just started a no sugar, or processed food diet.. kind of hunter gatherer sort of.style.. and taking other supplements that i have read about that sound credible.. a strong probiotic, red clover tea and tincture.. for phytoestrogen intake.. read estrogen matabolisism could be cause of ls so red clover is used for this.. also apple cider vinegar(patassium) ... which is suppo ...   [retrieve this message]
    • i was also wanting to ask you if your reversing meant that ...   wantingcure   30mo
       
      i was also wanting to ask you if your reversing meant that wear previous scaring occured if this healed and became strong and elasticated rather than thin and delicate? also did you have any fusing?if so.. have you experienced unfusing? i need this all to clear up and be gone of it.. i hope this addition will give me hope.. i feel as you described in thr beginning..and self conscious now that i know what i have.. before knowing i didnt feel so messed up down there.. but this has got to be a turning point. lets prove to them there is a cure.. all the best with your healing in all areas.. ma ...   [retrieve this message]
  • Lichen's post pregnancy   may vera   6y  Ü C Ü
     
    Hi girls, this is directed to the local girls who i think are in a similar situation to me. I was diagnosed at around 16 with lichenís and have used cortisone on and off for years, I have tried not to use it all the time for the reason of thining skin. I have just had a baby 5 weeks ago. During my pregnancy i had a flare up of the condition, and in the last 6-8 weeks of pregnancy had alot of swelling from the top of my pubic line down. As a result I am now tighter than i have ever been in my life and not happy about it. I was wondering has anyone else experienced this? and I really dont wa ...   [retrieve this message]
    • Iím sorry but this is not an answer to your question posed ...   lost abroad   5y
       
      Iím sorry but this is not an answer to your question posed a while ago, but I wonder if you could let me know did you give birth naturally with lichen sclerosis? I am pregnant with my second child and am trying to figure out if I should go for an elective c-section as Iím afraid of the damage (had an emergency c-section the first time). Do you think the damage you have is caused by the pregnancy or the birth? Iím curious to know your thoughts. ... ... Oh, and if this is any help Iíve been using a cream prescribed to me by my homeopathic doctor which is called Majorana Vaginalgel which is a topi ...   [retrieve this message]
  • LS and Pregnancy (please help!)   ndmarni   6y
     
    Hello everyone, ... ... I am 28 years old and I have had LS for about 5-6 years. I still have not been formally diagnosed, since lack of health insurance during my college/grad school years kept me from seeing the dermatologists I was referred to. Most docs just thought it was yeast, etc, etc, same old story. ... ... Anyway, now I am pregnant (possibly twins) and finally on health insurance. When I saw my obgyn last week, she agreed that it looked and sounded like LS. Weíre going to address it more at my next visit next week. ... ... Unfortunately, she said that she cannot prescribe and I cannot use ...   [retrieve this message]
  • Found something that really does work. No,it isn't emu oil.   annieh55   6y
     
    Hi all, ... I was actually looking to post over on the LS group on Yahoo, but forgot which group I had been writing to. ... I decided since I was here I would share with you all what I have found that actually works to get that dang LS to be practically gone. ... My theory was that this crap is a fungus that, due to low hormone levels, has found a way to live under the skin, so any topical ísolutioní doesnít seem to work. I was having fairly good luck using a mix of colloidal silver (whamodyne on fungus), tea tree oil, emu oil and a touch of lavender oil. ... But it would only take it down so far. So ...   [retrieve this message]
    • I just posted to this forum with username healthyat36. I ...   healthyat36   6y
       
      I just posted to this forum with username healthyat36. I believe what is helping me alot is the MSM which is worth reading about. It is derived from the DMSO or something but they say it is better because it doesnít make you stink. It might be worth reading my post as I am having success too!   [End]
    • You mentioned using silver. Itís expensive but I find that...   EnidKS   5y
       
      You mentioned using silver. Itís expensive but I find that TETRASIL cream with silver helps my vulva skin. Iíve been using it for years. I think it helps heals the fissures. (I just wish I didnít get them at all). ... ... Enid   [End]
  • Lichen Sclerosis Miracle Oil...easily found anywhere.   kathryn101   6y
     
    I just had to post about the miracle oil I have just recently found for Lichen ... Sclerosis...and Iíll tell you right up front...itís Emu Oil. ... ... I was just reading natural healing testimonials on another website about 3 weeks ... ago...and one just happened to be about Lichen Sclerosis. I was really surprised ... because you just donít hear much about Lichen Sclerosis, period. ... But I was diagnosed with it in the mid 90ís after a hysterectomy and was told at ... Vanderbilt in Nashville...that it is usually the result of a hormonal imbalance ... after menopause...but ícaní occur at any time from teens o ...   [retrieve this message]
    • Wow, what an encouraging message. ... On January, I had a c...   bjdesp   6y
       
      Wow, what an encouraging message. ... On January, I had a couple areas that developed growths, which were biopsied and I was diagnosed with squamous cell skin cancer. I had a radical bilateral vulvectomy including my clitoris. However, there is still some LSA itching in my rectal area. The doctor said we first needed to take care of the Vulva area and later check the other as it would be an even more complicated surgery if needed, (of which I am believing wonít be necessary}. ... Iím doing great after my surgery. Itís wonderful to be without the pain. ... Lidocaine became my best friend for a se ...   [retrieve this message]
      • bjdesp.....   kathryn101   6y
         
        Hi bjdesp...I just found your post...Iím so glad things turned out well for you. ... ... I just posted an update...so be sure and read that. I tried 2 other Emu Oils while ... waiting for my Purple Emu Oil to come in the mail. (the one I was using was from ... 10 years ago...was a tiny sample bottle and was almost empty when I found it...so ... it ran out fast). ... ... After the experience Iíve just had with these 3 seperate oils...I will never stray ... from the Purple Emu Oil. Thereís just something different about that one...and for ... me...Lichen Sclerosis is just too debilitating to play around with. ... ... I ...   [retrieve this message]
    • Update: Lichen Sclerosis/Emu Oil   kathryn101   6y
       
      Well...as I said above in my other post...the bottle of Purple Emu Oil that I found ... and started using after reading the testimonials...was about 10 years old and there ... was very little left in it. ... When I saw how well it worked...I immediately ordered a large bottle from the company. (This was a very tiny sample bottle someone had given me years ago). ... But after a few days, I ran out of the Purple Emu oil and I could tell within a ... couple of days that my Lichen Sclerosis was going to come back...without daily ... use of the Emu Oil. So I went to the Health Food Store and the only kind they ...   [retrieve this message]
      • Hi, ... ... New to the forum. ... Iím just curious can y...   pamhope   4y
         
        Hi, ... ... New to the forum. ... Iím just curious can you put the oil anywhere (I just got some)as long as itís external or only on certain parts of the vulva area? I am EXTREMELY sensitive to everything and I reacted right away when my doctor gave me the lowest dose of the steroid cream. Iím just so scared to upset the balance again. I have so many problems right now, and have not been able to work for 8 months already! ... I am so sensitive that I canít wear underwear or anything remotely fitted. I also have vulva vestibulitis and Intersistial Cystits and Iím only 35. Life has been hell:( ...   [retrieve this message]
    • Re: Lichen Sclerosis Miracle Oil...easily found anywhere.   totnesgirl   6y
       
      Hi - Iíve just found this website - Iím in the UK and my 6yr old daughter was diagnosed with LS about a year ago. Actually I diagnosed it after much mis-diagnosis from many doctors. After lots of research on the internet I discovered LS and knew straight away that it was what she has. The poor little mite would scream in pain when she was urinating and she had a strange mark all around her genital area. She itches and burns all the time. We were given about 6 or 7 courses of antibiotics as they were convinced she had infections - all of which Iím sure have made her more ill. When we finall ...   [retrieve this message]
      • Dear Totnesgirl ... ... I am so sorry to hear about your l...   littleJ   6y
         
        Dear Totnesgirl ... ... I am so sorry to hear about your little girl, it must be horrible for her to understand and deal with. I have a little girl who is nearly 2 and I know if she was afflicted it would be terribly traumatic to have to watch her suffer. ... ... I am from the UK too and have been recently diagnosed with LS aged 33, luckily I had a great doctor (and private health insurance!) and I didnít suffer very long before being diagnosed properly. ... ... I was prescribed dermovate by a very knowledgeable dermatologist and she said it worked wonders. I will keep it for if I ever get desperate but ...   [retrieve this message]
        • Hi there, i am a 21 year old girl (in the uk) who also has ...   pozpoz   4y
           
          Hi there, i am a 21 year old girl (in the uk) who also has LS, i have had it since i was 14, but i seem to flare up with the creams i get put on. at first i was on dermovate which just burnt my skin literally then i was on betnovate for years, but recently i was put on nerisone, the itching isnt as bad but i am incredibly sore all the time. ... ... anyway i have been reading about this emu oil, does it really work because it sounds like a con, i was told there was no cure and that i am stuck with this forever. ... ... im also scared about having children, i dont want them to have what i have and i ...   [retrieve this message]
      • hi.. i have been seeing a good classical homoeopath for ls ...   wantingcure   30mo
         
        hi.. i have been seeing a good classical homoeopath for ls (australia)and i beleive among other dietary changes will bring forth positive change if not a complete cure. my homoeopath has told me she had another patient with ls and with with time(it took 18mnths)she had major symptom reversal. my advice would be to try and steer clear of refined/modifoed foods and sugar. your poor little girl. i feel so bad for her.. but beleive there is hope. stay positive for her.. sending you both all my support. lou   [End]
  • Help! Lichen Sclerosis and 6 months pregnant   mfreakycat   6y  Ü C Ü
     
    I hope someone can help me. I have just recently been diagnosed with LS when I went to the doctor to confirm a pregnancy. I was given steroid cream and that cleared up the itch, so I thought things were fine until I actually had a look down there and noticed my genitals had changed colour and were swollen. It is not painful however and no itching. I wasnít too worried when I left the doctors but just to try and educate myself a little more about this disease I have been doing some research on the internet and now I am terrified. I think I could deal with the gyneacological side of things i ...   [retrieve this message]
    • Well Iíve never been pregnant, but I have great trust in my...   mailanee   6y
       
      Well Iíve never been pregnant, but I have great trust in my doctor and I questioned her about it. She said I would be fine to have children when I want them. I think as long as you use the creme you will be fine, but thatís just my opinion.   [End]
    • Itís possible that the swelling and color change in your ge...   ndmarni   6y
       
      Itís possible that the swelling and color change in your genital area is simply due to pregnancy. Itís a pretty common symptom whether you have LS or not. I feel your pain though! I am going through it as well.   [End]
    • I can relate since I am 5 months pregnant and have the same...   #100835   6y
       
      I can relate since I am 5 months pregnant and have the same concerns. I have talked with my MD who said that we will see where I am at with the LS around delivery time. Currently, I am having a bad flare and am really uncomfortable. My MD said I can use the kenalog cream but not the clobetasol (which really worked better). I am hoping to have the LS under better control by then but if not I will be asking for a c/s. I would be honest with your MD about your concerns. LS is miserable enough without having to deal with an epis etc.   [End]
  • LS and bleeding?   swefre17   6y
     
    LS and bleeding?   [End]
  • Am I using the right cream?   morrie   6y
     
    Hiya. ... new here. ... I had diagnisoed Lichen Sclerosis about 20 years ago. ... Was given Betnovate and it cleared up - with the odd flash here and there. ... After giving birth last year my tears have reawakend the Lichen. ... I went to a well woman clinic and the gynae told me I shoudl get my doc to refer me to a special vulva clinic, and that Betnovate had now been disgraced, and could possibly make me worse. ... I then went to doc who wouldnít refer me (she has an aversion to making referrals) and said the betnovate was fine and i shoudl start using it again. ... Is it? The strength is 0.01 so really wea ...   [retrieve this message]
  • Edited   SharN   6y
     
    I have had vulvar itching badly for 2 yrs. Its usually in the same spot all the time ! I had seen my dr for it 5 times in a year and he kept treating me for a yeast infection. Finally I couldnt take it anymore !!! I saw a new dr and he said it looks like Lichen Simplex. I am to try a cream for a month and see how it is. ... ... This all started after I had the Mirena IUD inserted (3/06) I have since had it removed (2/07). Do you think they are connected ? The dr thinks they are. ...   [End]
    • Re: ls   pozpoz   4y
       
      hi there, ... ... i dont think the two are related as i had an IUD inserted a year ago and i was diagnosed officially 3 years ago but nothing has changed with me but i have Lichen schlerosis, i did however have my cream changed and the itching isnt as bad now, i now use nerisone which i use less frequently. ... ... I hope this helps :D   [End]
  • lichen sclerosus?   heavymetalchic   7y
     
    I had been diagnosed with herpes about a year ago. However, at the gynecologistsí the tests came up negative, and positive for another test. But I am slightly suspicious. Sometimes the area around my genitals becomes tight and itchy, red, and tears very easily. Whenever I scratch in that region, sure enough up to a day later bumps appear. I was wondering if anyone could help me shine a light on whether or not this disease can be mistaken with herpes and how to tell the difference. Thank you.   [End]
    • Image Embedded ... ... ... ... I was misdiagnosed over 12 years ago wi...   sharibow   7y
       
      ... ... ... ... I was misdiagnosed over 12 years ago with herpes and was devastated, especially since it was almost impossible for me to have contracted it. Finally my new OBGYN,who told me she felt certain I didnít have it, took a biopsy and ruled it out. She then sent me to a dermatologist - yes I was surprised by that, but the new doc diagnosed my LS. My flare ups seem to be for long periods of time and for long lengths of time. I am currently using a hormone cream and lidocaine, which helps with the pain. I use the hormone cream twice a day and do for several months at a time, which conc ...   [retrieve this message]
      • I think the use of hormone creams is useless. I used it fo...   Scatter   7y
         
        I think the use of hormone creams is useless. I used it for almost 3 years and never got any relief. My GYN since prescribed steriod Clobetasol Propinate and I felt relief almost immediately. Canít say its cleared up or cured, but certainly better results. ... Good luck finding a specialist in this field. Please post what you find out. ... ... Scatter   [End]
  • Know anything about Kenalog External Creame?   mailanee   7y
     
    I just got the perscription today. I was using the Clobetasol creme, but it made my itching and burning worse. The doctor told me that it was too high potency for me probably and that I should try this kenalog stuff out. anyone ever used it? if so was it successful? Thanks for your help!   [End]
    • Hey! I just found this site! I havenít seen anyone on my ...   Memyselfandi   6y
       
      Hey! I just found this site! I havenít seen anyone on my other page who has used Kenalog cream. My dr has put me on a series of Kenalog injections! I am to get an injection once a month for 3-4 months. I took the second injection yesterday. I havenít really noticed any difference, but they say they have a great success rate with Kenalog. ... ... Whatís your history?   [End]
  • Recently Diagnosed... I want HELP...   mailanee   7y
     
    I have been itching for a while now. The doctors thought I may have had displaysia of the vulva (bc my mother had it), but then realized it was Lichen Sclerosis. I had a biopsy taken and itís positive for LS. The symptoms I have are itching and the color has changed to white... and the inner lining of my vagina on one side has decreased.. almost gone. I didnít think I had a disease, Iím 20 years old and started having sex at the age of 18 and thought it was from sex... so thought nothing of it. Iíve been to the doctor a few times and have been treated for yeast infections and bacterial inf ...   [retrieve this message]
    • mailanee...   kathryn101   7y
       
      Hi mailanee...The steroid cream should turn you right around...and while you may ... hear all kinds of horror stories about steroid creams...ignore them! The pain ... and suffering from Lichen Sclerosis is much, much worse than any little side affect ... from a steroid cream. Iíve been on the cream once a week for 11 years and will be ... on it for the rest of my life...and Iím 60. ... ... Once in remission...your intimate life can resume and be just like always. ... ... And I donít know of a good website. I learned what I know from experience that I ... got the hard way. ĒIĒ was told at Vanderbilt in Nashvill ...   [retrieve this message]
      • Thanks! Itís good to hear from someone who has had it. I ac...   mailanee   7y
         
        Thanks! Itís good to hear from someone who has had it. I actually live in Tennessee and work in Nashville, so Iím fond of Vanderbilt.. itís a great hospital! I donít know what mineís from... I seem to always have issues. Everyone tells me that Iím too young to be having all this stuff happen to me, and in ways I feel like itís not fair, but I know thereís nothing that I can do to change it so I just have to deal with it. No one understands though and itís tough! I just recently also developed hemroids...I think Iím just too stressed out. I have had a few anxiety attacks also, I just donít ...   [retrieve this message]
        • Well mailanee...once you get your Lichen Sclerosis under co...   kathryn101   7y
           
          Well mailanee...once you get your Lichen Sclerosis under control, you just go on with your life as you did before. ... ... Now Iíll be the first to admit that when mine was active, I was almost out of my ... mind. But within 2 weeks of coming from Vanderbilt (and weíre just 10 minutes from ... Paducah, Ky...in Southern Illinois) I was back in control of my life and happenings. ... Iím not one to brood over spilt milk...I had experienced extreme suffering when my ... Lichen Sclerosis was active...but once it was under control I had things to do, places to go and people to see. :-) So I went right back on ...   [retrieve this message]
      • Please can you tell me if the steroid cream you use reverse...   cassieandcleo   7y
         
        Please can you tell me if the steroid cream you use reverses the shape and makes everything normal looking again? I am in the UK does anyone know where to get it in the UK, doctors seem to be useless, no one has even heard of it. thank you   [End]
        • actually the one i used didnít work it made my symptoms wor...   mailanee   7y
           
          actually the one i used didnít work it made my symptoms worse (not the shape, but the itching). iím on a new one i start it tomorrow i will try to remember to let you know in about 3 weeks and iím sorry i dunno where to find it in the uk. i havenít done much research on it.   [End]
        • I havenít heard of any steroid that reverses shape or appea...   Elle_Kay   6y
           
          I havenít heard of any steroid that reverses shape or appearance. ... ... I certainly sympathise with the lack of support... been treated like an hysterical woman for years! First consultant said I was obviously scratching myself in my sleep...GP seems more clued up, but then sheís young. ... ... My condition has ceased to respond to the steroid ointment- so I was sent for a biopsy- and after 9 hours starvation (to be a day care patient) I went into theatre and the consultant said he couldnít see anything to biopsy! so sent me home! ... ... ... Iíve found the UK based LSSupport group- but canít find out ho ...   [retrieve this message]
    • Re: Recently Diagnosed... I want HELP...   GabiGirl   6y
       
      Hi, ... I was diagnosised with LS June of 2007 and left my Gynís office brain numb. First thing after returning home I went on the computer and starting looking up this dreaded disease I had never heard of. In doing so I found Dee Trollís site and am forever grateful. If it hasnít been for this site and the much appreciated help from all the girls there I donít know what I would have done. They guided and helped me using the meds which I didnít get any instructions from my Gyn. Please visit this site and join the group. Here is the site.... ... ... http://groups.yahoo.com/group/LichenScleros ...   [retrieve this message]
  • seeking onother LS sufferer to talk to.   millie87   7y
     
    i have suffered from this condition since i was a little girl. i have been diognosed for just over a year now. my condition seems to be getting worse and im seeking someone to talk with. not having anyone to relate to can be hard. so if your looking to talk with someone and exchange symptoms and advise, please msg me. thank you   [End]
    • I too would appreciate having someone to talk to in regard ...   #88950   7y
       
      I too would appreciate having someone to talk to in regard to LS. ... ... Recently diagnosed with LS as well as morphea on my back and chest. ... ... Up at 4:00 a.m. in fear and itching, but more than anything ... angst and feeling desolate. ... ... If youíd like to talk, let me know as well.   [End]
      • I have been diagnsed with LS for over 25 yrs and I am SOOOO...   Scatter   7y
         
        I have been diagnsed with LS for over 25 yrs and I am SOOOOO mad right now that I could bite nails. NO DOCTOR, NO SPECIALIST, NO NURSE.. NO ONE EVER TOLD ME WHAT COULD HAPPEN. I was given creams, ointments, pills and regular checkups and assured the disease was under control. ... I have not been sexually active for 10 yrs and now I am about become involved with a wonderful man that I love with all my heart and I find out that sex has become totally impossible. My vaginal opening has all but totally fused closed making intercourse nearly impossible. Anything more than the size of my finge ...   [retrieve this message]
    • Millie, ... I would be happy to talk to another LS victim. ...   GabiGirl   6y
       
      Millie, ... I would be happy to talk to another LS victim. ... GabiGirl ...   [End]
  • Lichen Sclerosis   jkl1965   7y
     
    I just came across this topic. I was diagnosed about a year ago. I have avoided getting into any relationships because I was afraid the man would reject me once he knew there might be a problem with sex. ... ... AFter reading the posts, especially the one from the lady who indicated that her sexual relations had returned without any problems, I am encouraged. ... ... I hope this lady or the others that have posted will see this message and let me know exactly what they did to alleviate this problem.   [End]
  • Itching   jacobe   7y  Ü C Ü
     
    I have rectal itching for several months. I have been on a candidia diet for the same lenght of time. It helps for a few days, but then returns. I havenít been able to have relations with my husband for over 3 years do to the severe pain. Lubricants do not help. My vulva is white in color. I do not have any raised or growth looking areas. I was thinking that this is due to lack of hormones (age 57), but I now wonder if it is LS. Had my yearly and doctor did not mention it. Said I just needed vaginal estrogene. I did not use it. Not sure he would be able to dx it if it truly is w ...   [retrieve this message]
    • Hi jacobe...Let me tell you...if you had lichen sclerosis.....   kathryn101   7y
       
      Hi jacobe...Let me tell you...if you had lichen sclerosis...youíd know it. No doubt ... about it. Iím 60 years old...we have 3 children and the last one was almost born in ... the waiting room of the hospital 33 years ago because the nurse who checked me when ... we came into the hospital...thought I was having false labor pains. I knew I wasnít...so we just went to the waiting room...when we were about to deliver our own ... baby...we finally got some attention. The point Iím getting at is this...after 60 years...Iíve been through a lot...one of which was almost delivering our own baby ... without a ...   [retrieve this message]
      • Hi, ... I was reading your messages about LS and thought I...   w.a.t.e.r.   7y
         
        Hi, ... I was reading your messages about LS and thought I would reply. I have LS and have been through many stages of it. By the time I was diagnosed, The pain and symptoms were so bad that I couldnít walk---and had to go to an emergency room. This is after years of Doctors saying it is yeast or Blah blah blah. Anyway, there have been times when it was very mild and my symptoms were very similar to the person who was complaining of the itching and white area. I just wanted to say to you that I understand you, but I also understand that woman, and it is just as frustrating (but not as p ...   [retrieve this message]
    • hi, i was diognosed with ls just over a year ago. the reaso...   millie87   7y
       
      hi, i was diognosed with ls just over a year ago. the reason i was diognosed in the first place, was because i had treated myself for what i thought was thrush. after years and years of trying to figure out what was wrong, i went to see a gyno. i asked my doctor why i could not have sex due to the huge amount of pain, and why my vulva was white, i was then told it was infact ls(found through small biopsy on vulva) i suggest you go do the same thing as if left too long it can be quiet dangerous. i am now using a steriod cream which has helped the colour go back and the pains not so bad now. ...   [retrieve this message]
      • Iíd absolutely get a biopsy. ... ... The longer you wait w...   kselibrary   7y
         
        Iíd absolutely get a biopsy. ... ... The longer you wait with LS, as I understand it, the worse the scarring can be...and once the damage is done, you either canít, or have a harder time fixing it. ... ... I got morphea on my back, was reading on morphea and had a EUREKA moment, when the term lichen sclerosis came up with a list of symptoms. ... ... Mine were tearing (think episiotomy) during sexual intercourse and itching around vuvla and anal areas. ... ... Today is my first day of steroid creams, and in the 6 hours I have had them on, I have seen a color change from the white, the red part is still red, bu ...   [retrieve this message]
  • A friend of mine wants to know...   fledgling   8y
     
    ...What is this condition? What causes it? ... ... And, did your treatment work? ... ... Additionally, could this be caused by excessive acidity of the urine? ... ... Or, a breakdown of the mucous membrane tissues? ... ... Could the body be lacking a nutrient, or not producing a hormone? ... ... And, if any of these causes, what natural treatments MIGHT be tried?   [End]
    • Re: Fledging & others..about Lichen Sclerosis..   kathryn101   7y
       
      Hi fledging...Your post is so old, youíll probably not even find this reply...but ... just in case, Iíll tell you what little ĒIĒ know. :-) ... ... I had a total hysterectomy in June of 1996...in the fall of 1997 I came down with ... what my gynecologist said was Lichen Sclerosis. I thought I had a bad yeast infection...because thatís the way it started out...symptoms just like a bad yeast ... infection. ... ... I was told that Lichen Sclerosis is a result of a hormonal imbalance after a hysterectomy. But that it was just impossible to turn around after having the surgery. I found all kinds of íexcusesí ...   [retrieve this message]
      • I donít have this disorder but was curious as to what it wa...   refreshed   7y
         
        I donít have this disorder but was curious as to what it was. Iím so sorry you had to endure so much. The reason I decided to post this was that you had your total hysterectomy the exact same time as I did and I had a similar response from a doctor. I suffered for years in pain while my doctor kept saying things like ĒPerhaps you should go see a PsychologistĒ or ĒIf you keep complaining like that we will have to open you up and see whats wrongĒ. (more like a threat than a suggestion) Hello...doctor...I have been complaining like this ever since I started coming to you at the age of 17. ...   [retrieve this message]
        • refreshed....Lichen Sclerosis is nothing like Endometrosis....   kathryn101   7y
           
          refreshed....Lichen Sclerosis is nothing like Endometrosis...Iíll take a good case ... of Endometrosis any day instead of Lichen Sclerosis. And I had Endometrosis when ... they did the hysterectomy and didnít even know it. I also had fibroid tumors...didnít know that either. ... ... Lichen Sclerosis is like a yeast infection to the thousandth degree. Raw oozie skin ... in that whole area..inside and out...you canít even shower without excruciating pain beyond your wildest expectations. ... The ípainí is comparable to a really bad burn...itís a íburning painí with lots of pins and needles...not an ache, ...   [retrieve this message]
          • hi kathryn, i have been reading some of your messages and a...   millie87   7y
             
            hi kathryn, i have been reading some of your messages and am glad i have finally found someone who understands the pain and suffering of LS. i would appretiate speaking to you about what has helped you and what hasnt. i laughed when i read your post about drs saying its a yeast blah blah, something i can relate to over years and years of being told this. hope to read a message back.   [End]
            • millie.....   kathryn101   7y
               
              Hi...Iím sorry it took me so long to find your post. I havenít been on here in a ... few days. ... ... Iíll open my email so you can email me if you want to. But weíre going out of town ... on Friday morning and wonít be home until late Sunday night. ... ... If you have any questions...just email them to me and Iíll answer as soon as I can. ... kathryn ... ... ps. Please put ĒMillie from curezoneĒ in your subject line....   [End]
              • Kathryn101 - I have been very interested in your various po...   bjdesp   7y
                 
                Kathryn101 - I have been very interested in your various postings regarding LS. ... I have suffered with this for 14 years. You said that Dr Entman wrote you a prescription for 2 medications that worked for you. ... Could you please give the name of those medications? I have used testosterone ointment in the past, and have been using Halobetasol ointment and Clobetasol Propionate ointment for some time, but still have breakout of sores, itching, and feeling of pins & needles. I am on the other side of the country, and wish I was closer to your wonderful Vanderbilt Hospital. ...   [End]
      • Re: Fledging & others..about Lichen Sclerosis..   nojo   7y
         
        Hi Kathryn, ... You are giving me hope. Did you try urine therapy ever? I am considering that, but will be hard to do woth starting on the steroid cream. ... Thanks, Michele   [End]
      • Do you mind sharing what meds the Doc gave you? I have an ...   murphmom   4y
         
        Do you mind sharing what meds the Doc gave you? I have an appt. in June and would like to go in informed.   [End]
    • Re: A friend of mine wants to know...   millie87   7y
       
      hi, just read your post and thought i might try answer some of your questions for you. i have had LS ever since i was little. my mother and i both have this condition, and to my understanding, the cause of LS is not known yet but what happens is that it is found in people who have poor auto immune systems, due to this the body attacks its own mucous membrains( on the vulva and inside the mouth). the best natural way to help this is by taking a supplement to help immune, by drinking friut and vege drinks, and NOT using soap. try an alternative. i was also given a steriod cream to use as dir ...   [retrieve this message]
  • Lichen sclerosis   #60113   8y
     
    Hello--I am hoping to find answers to this recently diagnosed condition, which I have actually had for 20 years. It has recently become quite a bit worse and is very painful. The doctor prescribed testosterone creme, which didnít help at all. I am a little nervous about the high-potency cortisone creme, which has so many side effects. Any suggestions on treatment and/or diet? Thank you very much--   [End]
    • Hello, ... ... this is the first time I have heard of this...   peggy1au   8y
       
      Hello, ... ... this is the first time I have heard of this condition. Care to tell us what your symptoms are? ... ... Best wishes,   [End]
      • Sorry--I am looking for people who might already have some ...   cjscha6   8y
         
        Sorry--I am looking for people who might already have some familiarity with this condition.   [End]
        • I was diagnosed with lichen sclerosis a couple of years ago...   #60643   8y
           
          I was diagnosed with lichen sclerosis a couple of years ago. I underwent several rounds of using the topical steroids (first clobetasol, then mometosone fuorate)before they helped. I think my doctor underprescribed. I read on the Internet several different recommended doses and finally went with using the steroid (mometosone fuorate) twice a day for two weeks, then once a day for two weeks, then every other day for two weeks, then twice a week for several weeks. Sometimes I would go back to once a day if my condition got worse. Now I use it about once every week or two. It does not c ...   [retrieve this message]
          • I was diagnosed with Lichens Sclerosis about 6 years ago, b...   catdog65   8y
             
            I was diagnosed with Lichens Sclerosis about 6 years ago, but believe I have had it since childhood. ... ... I suffered terribly from the symptoms for 4 years before I started treatment as per a yahoogroup called lichenSclerosis@yahoogroups.com. This support group is wonderful and the moderator has researched extensively ĒtreatmentsĒ for this condition, since it cannot be cured at this time. ... ... I went from having lacerations up to two inches long on my genitals and loosing a lot of the female architecture down there to having no more lacerations or papercut like lesions and regaining some of wh ...   [retrieve this message]
            • I tried to use the link of lichenSclerosis@yahoogroups.com....   flyflabeach   7y
               
              I tried to use the link of lichenSclerosis@yahoogroups.com. but apparently the address has changed or I am doing something wrong. Do you just put this address in the browser and press go, or do you have to sign on the yahoo or something different? Help!!!!! Reading your message on Curezone is the first ray of hope Iíve had with this problem. My boyfriend is very upset that I hurt all the time and the ĒcuresĒ the doctor gives me is not working. Please respond soon!   [End]
          • hi, i have had ls for close to 20 years now. i was reading ...   millie87   7y
             
            hi, i have had ls for close to 20 years now. i was reading about your cream issue. i am currently using one called diprisone OV. if you think you were under prescribed, try one which ends in ov. this means optimised vehicle. meaning it is a stronger cream than most. i havent had any side affects with long term use of this steriod cream nearly every day. the other advise i can give you, is try the ointment rather than cream. not sure if your aware but its more of a jelly based cream so it can be applied wheather your wet or dry. i have found this is the one for me, and has helped with my se ...   [retrieve this message]
            • okay ?... what is a good soap alternative?   mailanee   7y
               
              okay ?... what is a good soap alternative?   [End]
              • mailanee...The soap Iíve used for years is ĒBasicĒ I think ...   kathryn101   7y
                 
                mailanee...The soap Iíve used for years is ĒBasicĒ I think itís called...and I get ... it at Walmart. Itís the only one I can use with my condition without a flare-up... ... and itís very inexpensive...about $2 a bar. ... ... But you ídefinitelyí need a hypoallergenic with no perfumes, etc. Give ĒBasicĒ a ... try and see if it helps you.   [End]
              • I was recently diagnosed and prescribed a steroid ointment....   #145964   30mo
                 
                I was recently diagnosed and prescribed a steroid ointment. I accidentally discovered that I get relief from using a homemade lye based soap. I do not know the ingredients. It is a brownish-tan, rough shaped square bar, and scented. It leaves an oily feeling. It has enabled me to almost completely stop using the steroids.   [End]

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