Patient Comments

This page is now an archive of previous comments. Lack of funding, resources and volunteer availability mean that interaction has had to be suspended. It is sad because so many of you want to take part and not everyone wants to take membership of the many secret, closed or privately run groups on the internet. Ways of offering a more interactive programme are being investigated. Webinars are expensive and time consuming but there are new internet tools being developed all the time and perhaps some of these can be considered. In the meantime, comments and suggestions to improve what is offered here are very welcome,using the contact form on this site.

 

adminPatient Comments

Comments 289

  1. Marlene Baulk

    Thank you for your website. Very informative. I have L/S and unfortunately I’m not doing well with clobestol ointment plus the labia has fused and shrunk and the clitoris has scared within the last 2 months while on this ointment. Are you aware of any support groups/doctors in Ontario, Canada who specialize in treating L/S?
    I look forward to hearing from you, and again, your website in truly appreciated.

    Marlene Baulk, Kitchener, Ontario Canada

    1. Jennifer Marley

      Hi Marlene,
      Did anyone ever answer you? I am in the Toronto, Ontario area too. I have had L/S for a long time. There is no pain and no irritation, but the vulva and clitoris continue to shrink away and I’m getting very worried. The Clobetasol ointment makes no difference. I’m looking for something that can stop and ideally reverse the disappearance of tissue before it is too late. Other sites have recommended Estrodiol for the skin tissue along with Clobetasol to prevent re-occurance or worsening. Has anyone had success with having the tissue return? Thanks. Below is the advice i found on another site…steriods to manage condition and hormones for skin rebuilding….really would love help. Most people talk of the irritation and soreness and not the tissue shrinking and disappearing.

      “eventually with using only the hormones Estrace & Testosterone (E & T) alone until the tissue was rebuilt and unfused. Today, I ‘probably’ would use a steroid or possibly the Protopic/Elidel *immunomodulators* – but sparingly along with the hormone creams E & T. The steroids or Protopic or Elidel are for symptom relief and to put those ‘symptoms’ at bay and keep them in remission; the others (hormones) are to rebuild the tissue to get it healthy.”

  2. Shirley

    I have just read the information above and feel a little reassured. Just two things – what is ‘the emollient’ instead of soap and also have you heard about (and I’m sure you have) Perrins Blend and what do you think?

    Thank you so much

    Shirley

    1. Post
      Author
      admin

      Unfortunately this group receives a lot of emails from men and women who have tried Perrins and it has not worked for them. No one but no one should be encouraging people with lichen sclerosus to stop conventional treatment in favour of any non steroid treatment. Failure to treat with steroids can lead to scarring. However, everyone needs to look at the reasons why they want to use creams. It may be about expectations. People are very desperate sometimes for relief and medical information from doctors may not have been sufficient to get things under control. That is when people turn to the internet for other solutions. Most creams are capable of relieving soreness and itch and making the skin more comfortable. Some people do report more comfortable skin after using Perrins. However, if the expectations are that creams will cure everything then some disappointment may be experienced.

      1. Theresa Penfound

        Hi, hoping I am sending this to admin so that I can receive a reply. Have been diagnosed with Lichen Sclerosus about 2 years ago and I am under the vulva clinic at the Hospital, who sorted me out with the correct advice and put me onto Dermovate cream with the addition of antibiotics because of an infection from a scar sight from giving birth many years ago. All has been stable for quite a while with regular 6 month appointments at the Hospital until this week when I suddenly became very sore around the vulva area. I was very on top of it and went down to G.P.’s the next day to be told that I had a bad infection and she put me on a anitibiotic called Clarithromycin 500mg (this was because I developed hives from my normal one called augmenting. To say Im in pain is a understatement with ulcer like lesions all around my vulva. Just a little bit scared it could be now Cancerous!

        Theresa

        1. Janet

          Hi Theresa, I have just found this site so I dont know if this post was current, I have had LS for 6yrs now and could not tolerate Dermovate at first but just recently I have been able to use, like you I too have had ulcer like lesions on the vulval area, and I just put the Dermovate on, it took a couple of days to clear and it was stinging alot, I too was afraid of Cancer but was told that this very rarely happens, and if you see a specialist on frequent occassions they will be able to pick up if their are any changes, try not tolet it worry you, talk to your Gynae about it, and try not to read the internet about it as you will drive yourself crazy
          good luck

  3. susan caudell

    I recieved my diagnosis almost 2 years ago. My gynecologist has referred me to a specialist due to progression of problems. I am so glad to find this website. The information is clearly and honestly presented…..and yes, some of the information on other websites scared the pudding out of me. Looking forward to the reopening of your website. Thanks!

  4. Lynn Keblinger

    I was not given an emolient soap by my physician nor did she recommend one. Her recommendation was to wash only with water. I feel cleaner when I used some type of soap. What type or brand of soap would you recommend.

    1. Post
      Author
      admin

      The reason why nobody recommends soaps is because they can irritate the skin. Unfortunately, I am not able to recommend soap. The vulva makes its own secretions that are responsible for keeping it healthy and so plain water is good. Your doctor has given you good advice.

      1. Gal

        I have found Burt’s Bees body wash to be an agreeable way to wash without soap. Since I am also a life long eczema patient, Burt’s Bee’s products agree with me all the way around. My LS is all over my body, but don’t have it in my genital region (yet…).

        1. Post
          Author
          admin

          Hello Gal. I am familiar with Burt Bees products. The thought of putting it on my genitals makes my eyes water just thinking about it! I also have LS on other parts of my body and I find that creams that I would never dream of using on the lady part, are good for using on the body LS.

        2. leeky

          Hi Gal,

          My daughter has only just been diagnosed with LS at the age of 16 and like you, she has no symptoms on her genitalia area at all. It started on her chest and recently a few new spots have appeared on her neck, tummy and back. For this she has been prescribed the steroid cream. Her spots are white in colour and to me almost resemble a sting of a nettle, but not quite as raised. Is your condition similar to this? However, my daughter has no symptoms at all, other than the physical appearance, she has no itchiness or soreness at all.
          The most worrying aspect of her condition is that she has rather a large lesion on her cleavage line that looks like it is filled with blood. The biopsy results show that it has all the characteristics of LS but has confused the consultants as to why it has manifested itself in this way, and why. She was examined by 7 trained consultants who all stated that they have never seen anything like it. She now has been asked to attend their bi monthly consultants meeting to be examined by a roomful of people and be used for medical research purposes.
          Can I ask if you have any lesions on your body like this as I know they are common in the vulva area.
          Hope you don’t mind me talking to you as nearly everyone else has the condition in the genitalia so would
          like to hear from someone who has it on their body. Thankyou for your time.
          x

          1. Rileysmom

            Hi,
            I just came across this website and saw your question about the lesions that look like blood inside. I have several of those on my legs and arms and have been told it is called morphea. Related to lichen sclerosis, localized scleroderma, and other skin auto-immune conditions. I do not have genital involvement only near the rear end but not inside. I have been searching for a moisturizer for the scarring that has occurred on my arms, legs, and torso, as the scars do not seems to absorb any of what I have uses. Would love a suggestion if anyone has one.

          2. Andrew

            Hi leeky, I saw your post today and noticed your daughter is kinda like me. I to have the same lesions and no symptoms. I had it since I was about 13 and rapidly grew when I was in 8th grade. I did try the steroid cream but decided to just live it and now I’m 17 almost 18 and its starting to fade away. I believe sunlight and time helps minimize the spots because that’s how I did it. I wish you and your daughter the best of luck
            Andrew

    2. Liz

      I was diagnosed 2 years ago and using the steroid ointment was immediately a great relief, I use it every now and then as soon as I start to feel any irritation and I use Dermol lotion to wash with which I get on prescription.

      1. jean mandel

        I was diagnosed this week and I was given a steriod cream.. Can this cream and an over counter cream be used alternatively. This way the side effects of the steriod could be lessened.. Also Is wearing jeans a problem..

        Thanks

        I don’t know how ti leave a comment or a question..

        1. Post
          Author
          admin

          You have managed to leave the comment and question OK, so whatever you did , it has worked! Whoever you saw for your treatment information needed to help you with this. There is a document on the website that explains things, it was written for nurses but it gives good information on using steroids and moisturising creams. There is too much bad press about side effects of steroids on the internet now! The idea is to get the symptoms under control and then reduce the steroid treatment to a maintenance dose, maybe twice a week. In the meantime, you can use over the counter emollients and creams several times a day, every day, to help the skin. The main problem is that patients are not given enough information to help them use their treatment effectively and safely. Avoiding wearing jeans till you have the symptoms under control is a helpful thing, but I so understand how inconvenient this can be! Try reading the article here http://lichensclerosus.org/get-the-best-from-steroids-and-emollients/

    3. Helen Woolley

      I was recommended to use an emollient wash cream ( soap free, non drying, no perfume) known as E45 Wash and this is soothing and gentle to use and makes me feel cleaner than just using water. I often use some E45 cream ( thicker than the wash cream) and leave that to sink in.

  5. GILLIAN Drake

    What wonderful information,I was diagnosed 2 years ago,I am 60,its awful no sex life now,but thankfully have a caring husband,it seems when i am on antibiotics for anything it helps,but that is only random,I wish there was a cure,but don’t we all wish that with so many illnesses.

    1. erin

      I was on antibiotics for acne on and off for 10 years. When I stopped antibiotics was when sex became too painful. Dr’s didn’t know why, but then a dr. found that I had Lichen sclerosus. I do think there is an antibiotic link.

      1. Wendy

        Penny, my guess is that her relief wasn’t due to improvement of the LS but most likely she also had a very common vaginal infection called bacteria vaginosis (which causes itching and irritation). The antibiotic may have cured the bacterial vaginosis.

    2. mary king

      I noticed the date you posted this and I hope by now things have gotten better for you. I was diagnosed in 2002 and I am 66, will turn 67 next month. Our sex life, well there wasn’t much. It was too painful and I was scared. Finally, two weeks ago I was referred to a urogynecologist that treats LS. She was great! I explained about our sex life, so I started dilation today. I am hoping this will restore our sex life to some degree. I really like this doctor.

      I hope your situation has been resolved, but if not, there’s more that can be done.

      This doctor is the first one I can actually trust and is very knowledgeable. I went to a dermatologist and a gynecologist and I felt like a “freak” because they would invite others to come and look, and they didn’t really know how to treat it.Needless to say, I didn’t go back.

      Take care

  6. Barbara Tait

    This site seems very practical and reassuring. I was only diagnosed 3 weeks ago and will see the gynaecologist in 10 days’ time. When I found out what I had, I looked it up online and found there’s a link with cancer of the vulva, which really scared me, especially since I’ve had a problem for 36 years and just lived with it! My doctor has reassured me and I’m feeling now that it’s unlikely to be cancer. The steroid cream has improved my condition beyond all recognition. I wish I’d sorted this out years ago! I feel angry though that we women are so ignorant about vulval self examination. None of my friends was aware that this was important. I think we need to ‘come out’ about this even though it’s highly personal. Ignorance is decidedly not bliss in this case.

    1. jennifer

      same thing! I developed this in childhood so I never knew it was abnormal, 36 years of living with this. I wish there was more info on this in the public knowledge.

      1. Jo Lawton

        My Little Girl has just been diagnosed at 8 years old. She was so bad she could barely go to the toilet but she insists she was not sore till that weekend. By the Monday she was having to sit in the bath to go and when she went to the hospital they said it was such a bad case they where supprised she was able to pee at all!. Im realy hopeing that the condition will go in to remision for her at puberty as I have been told may happen. Shes been useing creams for 2 weeks but is still not looking as good as the Docs would like so shes been given a stronger cream and 3 month treatment plan. Shes much more comfortable now but realy not happy at being made to wear skirts most of the time and ans had had all new pjamas for Christmas that shes not alowed to wear to bed now poor little love.

  7. Caz

    So glad I found your site after reading all the other alarming information. I was diagnosed a year ago with LS, but everyone has talked of Gynaecologist referals so how come I ended up in Dermotology? What worries me are the lumps & bumps which are referred to and which I have plus blisters. Help is this normal? I am using an emulent based cream for washing & barrier protection & a stronger steriod cream (as the first cream didn’t work, but having said that, was I not using enough, as they say sparingly!) How do you know if you are reacting to the creams etc with this problem? How demoralised I feel as a woman who looked forward to & shortly enjoyed the freedom of sex after her hysterectomy to now not being able to have sex. (Sorry feeling low). Its also funny that after the ‘op’ I started swimming again & it is said that clorine can affect you, it was a few months after when problems started together with a reaction to 2 medications really kick started it. I also have read that you can be alergic to ‘sperm fluid’ is this then also another starting point after the ‘op’ since previous protection used?

    1. lorraine

      hi, my doc also suspects i have got mild case of ls, but not got any of the trade mark symptons only reddness and tickling like itch, seen gyno and he prescribed betnovate cream said would improve symptons with 2 wks but unfortunatly no change, said if no change wants me to see dermotologist specialist but im also terrified of having a biopsy done, is betnovate steroid cream the right choice??? if its not ls not sure wht else can b , had for 11 mths now,

  8. Gemma

    This website and information is excellent, thanks so much for providing it. When I was first diagnosed, I too scared myself silly trying to find more information on the web – with steroid cream, I find it easy to manage. I also take a probiotic supplement (bio-acidophilus forte), and I don’t know why but it makes a marked difference to my symptoms and my use of steroid cream has gone down a lot.

    Some people were asking about emollients to use instead of soap, I use E45 cream for bath shower – it is slightly more runny and comes in a pump. I feel very clean and it doesn’t irritate, just provides moisture. Best of luck to all.

  9. gloria

    so glad i found your website had ls for about 2 years keeps coming back you get worried and being able to talk about it with others and knowing your not on your own certainly helps i lost my husband 5 years ago i shall keep in touch via this site thank you

  10. Louise

    Good info on this website,but my daughter is only 5 and has been diagnosed with LS the doctor says we should just wait and hopefully it will get better. It has just come back with a vengeance. I would be glad for some advice.

    1. Post
      Author
      admin

      Hello Louise – I have written to you privately because for legal reasons, I could not give a full reply in public. However, for the sake of any other mother reading this message, the advice is to ask for your child to be referred to a consultant specialist for correct treatment. It would be unwise for any doctor to take the view that LS may just go away, in the face of evidence to the contrary and to leave a child untreated and suffering. I hope the message I sent to you was helpful. Fabia.

      1. Louise

        Hi Fabia, thanks for that I know now to go with my gut feeling, I will go back to my doctor and ask to be reffered to a different specialist.
        Kind regards
        Louise

    2. Danielle

      Hi I have a 6 year old daughter that was finally diagnosed with LS this past summer. Don’t let your doctor ignore this. We went through a year of kidney infections,constipation and pain and she was even admitted to the hospital before someone caught on. She is doing so much better now that she is being treated with a steroid. The sooner you start the better, my daughter already has scar tissue. I wish you both the best. Danielle

      1. Wendy

        I went through years and years of urinary tract infections and constipation as a child. I was finally diagnosed with LS at the age of 23 so your daughter has a fabulous head start to be both diagnosed and treating her LS at such a young age. I hope she is one of the lucky ones that goes into remission with puberty.

    3. Jo Lawton

      Oh me too! My little one is 8 and just becoming more body concious so she is finding it hard at school. I worry for her future if it dose not clear up for her at puberty…Its the silly things like she is at cubs and will be wanting to go away on camps. For most kids a week of not washing properly is no big deal but she showers twice daily and has to use her emolient and then she has to do her creams when shes needing them. Shes great with doing her cream but tends to need help with washing. Shes also a keen dancer and wants to go to dance college in the future. Spending hours at a time in lycra is not going to be any good for her.

  11. Ian

    Hi all

    Probably unusaly for a man to comment but I to have recently been diagnosed with LS, doesn’t seem to be a problem just a bit of pigmentation change really.

    However I have been prescribed a cream can’t remember the name but it is a 1% Hydrocortisone cream (Derma something) doesn’t really seem to do anything and the instructions for use were a little wishy washy to sat the least, I have read the BAD guidelines and it seems that the treatment differs somewhat from those

    I was diagnosed at a GUM clinic (not the greatest of experiences lol) having been advised by my GP to attend as it was out of his experience, would it be a better move to visit my GP again and ask to be referred to a Dermatologist?

    many thanks
    Ian

    1. Post
      Author
      admin

      Hello Ian, I know we do not often get messages from men but you are welcome here and there are other men around. I am glad you have read the BAD Guidelines because they are pretty much the LS bible and like I have said in ‘the Basics’ link on this site, the BAD Guidelines recommendation for treatment on initial diagnosis is the least any patient should expect. I cannot comment on the services of your local GUM clinic and by and large I know that some of them do offer an excellent service and many will be offering the BAD approach to treatment. However, it does seem that the treatment and advice given to you may fall short of what you could expect as standard in the UK. Your GP could read the BAD guidelines and treat you in accordance (Dermovate ointment is the treatment of choice for lichen sclerosus, whether it is male, female or childhood lichen sclerosus) with what is said there and see if that resolves the symptoms and if it does not then it is probably a good thing to ask for referral to a dermatologist. I do not know where you live and would not ask you to disclose that in public here on the site, but if you need help with finding a clinic later on, let me know. I hope that this helps Ian.

    2. pete

      Hi Ian so sorry for the delay but only just found this section on site, having chatted with Fabia. I have had l.s. for nearly 30 years and I have quite white discolouration on glans of penis, now slowly moving down the shaft onto foreskin. I use clob, as a dermovate cream, in small doses as and when I feal it is necessary, if it flares up a good thumb nail blob of it for a few days, dropping of to a small smear now and again, I then use vitamin e oil and emu oil massaged in once often twice a day ensuring good blood flow to the region. I believe this stimulation the ensure the toxins are removed from the area. Being a masseur we know this removes toxins from the body.
      30 years on I can still maintain an erection , my foreskin is still supple , thanks to oils, and most important of all is to keep STRESS levels down…..
      Cheers
      Pete

  12. Jill

    Thanks for all the info. 3 months ago my GP diagnosed ‘suspected’ LS. She referred me to a Consultant gynaecologist who subjected me to an excrutiating internal exam – what part of “I’m raw, sore and itchy” didn’t she understand! I refused a biopsy because I didn’t think I had LS – I’d read up on websites and decided that as I don’t have white vulval tissue, scabs, blisters or weeping sores, etc. this couldn’t be my problem. My real problem is that my GP won’t consider any other possible causes; she’s adamant that I have the biopsy taken first. She also refused point blank to allow me blood tests for hormone levels. She said my hormone levels were irrelevant to the condition, but I read everywhere that it’s more common in post-menopausal women. My homeopath diagnosed it as an autoimmune problem caused (or exacerbated) by very low oestrogen levels (I’m 2yrs post menopause). She says it can be treated by a long term course of oestrogen replacement cream, however after 3 months of continuous use there’s been no improvement. My vulva is pink and healthy looking (yes, I do examine myself). My only symptoms are a complete lack of stretch in the vaginal tissue and a tendency to dryness and occasionally severe itching. Like most of your other writers I’m faced with the awful prospect of never having sex again in my life – and I’m only 53! Do you think I should go down the biopsy route?
    Kind regards,
    Jill

    1. Post
      Author
      admin

      Hello Jill. None of what you say is easy. Let’s break it down a bit. First of all, not everyone who has LS has white skin. It is a condition that can present differently in everyone. The issue with a biopsy…the medical profession and doctors I work with tell me that a biopsy is not always needed to establish a diagnosis and this is on the basis that the physician is happy to make the diagnosis based on taking a history of your symptoms and also what is seen. So it could be that you do not have lichen sclerosus. It is also possible that your GP does not have knowledge of what other causes there may be. Remember that GPs have very little instruction in dermatology (sometimes less than 6 hours) during training and even less in vulval disease. Your homeopath has given you an unsubstantiated view of what is causing your problems in how she has described LS. The hormone view is only a theory and to date, nobody has been able to prove or establish what causes LS. In a recent talk a top (retired) consultant dermatologist and leading researcher in LS explained that this condition may be caused by autoimmune dysfunction, hormones, genetics, virus or just plain bad luck. If you really do have LS, then hormone cream may assist with the skin elasticity but it will not treat the lichen sclerosus which is active under the skin. If you do not have LS and your problem is hormonal then I would think a creame would help you. So what do I really think? Ask your GP to refer you to a local vulva clinic or the nearest you can find that has a dermatologist in residence, talk everything through with the consultant there and ask for the diagnosis to be confirmed or not. If that consultant is not happy to make a full diagnosis of LS on the basis of your symptomatic history and vulval appearance, then that consultant may wish to take a biopsy and it may be helpful to you in the long run to have that done. Sex….well that is a big problem for us, however, lots and lots of us are having sex and once your symptoms are under control with an established diagnosis as well, so that you know where you are, I would not rule out the possibility of being able to have sex, in fact, after treatment, a high number of women are relieved to find that they can get back to enjoyable sex. I was 48 when diagnosed and now 64 and sex is still possible for me (finding a new man to enjoy it with is proving far, far harder!) So, start the ball rolling with a referral and wortk through some of the suggestions I have given you and I hope that they will be helpful to you Jill. Also remember that referals, appointments, diagnosis and outcomes all take time, more time than any of us want to wait but that is the situation and so the sooner you get a referral the sooner you may be able to move forward.

    2. S. Jim

      I encourage you to have the biopsy. I just got diagnosed last week and my biopsy report and culture report were presented to me today. I also only had that itching, burning, raw feeling. I did notice the discoloration of the skin. Biopsy showed no cancer; but it did confirm LS. Culture also confirmed LS. Glad I know what I am up against. I am 66 years old and female. I have had hypothyroid since I was 18 years old; Diabetic for 11 years and had a bad medical experience 2 months ago after my GP put me on a second regime of oral steroids to fight off bronchitis. Which of these caused my LS??? Who knows. I too was scared. Just have to continue with treatment and hope for a better future. This is going to be another hurdle. I refuse to have this limit my happiness. Sex is over rated and way. (laughing) Atleast we can still see and have our wit. There are worst things in life. Be strong. Find out what you have and cure yourself. I hope this was helpful.

    3. anonymous

      yes, absolutely, do it…i had a biopsy, and it came out lichens sclerosis..my gyn dr. had me use clobetesol ointment (cortisone) 2x a day for a months, and over the counter cortisone after that if i need it for itching…it has been about 3 months now, and i have only needed the otc cortisone a few times. i also use a vagifem insert 2x a week. i am doing quite well with this regime.

      good luck with your biopsy and condition..best to get your condition diagnosed, then treated.

    4. Gal

      Jill, I was recently diagnosed with LS of the torso, arms, legs, and breasts. I was spared the genital region (who knows if it will spread). I am in process of looking for a homeopath and also, 54 and post menopausal. I know I am estrogen deficient (we all are at this age, it’s normal) but have not used any estrogen cremes. My GYN told me last week she didn’t think it was necessary to do a hormone check. She said that it was important to stay on my dermatologist’s recommendations of using the clobetasol and pro topic and the tetracycline. So I have TWO doctors weighing in on my problem. I asked for a skin biopsy to diagnose LS before submitting to all the steroids and antibiotics. My biopsy was positive. My derm doctor also ran tests for lyme disease, scleroderma, MS, and other worrisome diseases – all were negative. With my LS, my entire skin feels like it is ripping and tearing when I have normal movements of arms up over head, or sit-ups, and the itching is unbearable all over my body. I take antihistamines at night along with melatonin to get good sleep. My daily workouts at the gym are tough now due to limited movement and the skin feeling like it’s tearing. I think you should go for the biopsy to rule out what it is so you can get the correct treatment. My doctor didn’t hesitate to request it. Hang in there. I am newly diagnosed and my husband has stage 4 colon cancer. Do you think stress has a lot to do with it????? Most auto-immune illness are exacerbated by stress. Surprise, surprise. On a brighter note, my husband got good news at his doctor today – the latest scan revealed no further spread of his cancer. Maybe my LS will get better too….

  13. Pat K

    I just found out my 5 year old daughter was diagnosed w/ LS and I am so thankful I stumbled across this website it has calmed my nerves a little. I am still concerned about the treatment she was prescribed Betamethasone ointment, I just picked this up today and am supposed to start treatment at bedtime. My concern is everything I read about this says NOT for children under 13 and all the horrible side effects. I see several comments about not being afraid of treatment but does this apply to a 5 yr old? Also my Dr. said to put on a thick coat of this ointment and everything I read says to use sparingly. Any advise on how much to use??? Like I said I am thankful I found this website and am anxiously waiting for feedback. Thanks!!!

    1. Post
      Author
      admin

      Hello dear concerned Mum. Yes, it is OK to use the treatment as your doctor has said. Remember the internet is full of people governed by fear, and the advice to use sparingly seems to come from those medics who have less training and knowledge than others. You might say that those who say to use sparingly are the ones to avoid in terms of finding a good doctor. I do not know where you live – are you in the UK? If you need more help, feel free to email me at admin@lichensclerosus.org Remember also that when first diagnosed everyone, including children need to be treated quite aggressively to get things under control, you will not always have to use the treatment so much as things improve.

  14. Patricia

    I have had LS for about 10 years now I am 63 years old. I use clobetasol propionate as per the guidelines, for all washing of the area I use Boots Aqueous Cream as an emollient. I was advised also to apply White Soft Paraffin BP after washing, how ever I cannot find any other references to using soft paraffin. Is the continuous use of soft paraffin advisable?

  15. justme

    I’m 52 and I’ve had LS for about 7 years. I had early menopause and that’s when it really showed. I’m on bioidentical hormones and I use the steroid creme. This past year I noticed the outside vaginal area definitely looks better but still has white strips. But the problem is, the few times I’ve tried to have sex (I’m not married so had to try with an ex-boyfriend), it was almost impossible. The inside – not just the outside – seems to be the problem. There’s a lot of pain and we just can’t do it. Lubrication doesn’t really help. I’m not sure what to do about the internal issue. My GYN just gives me the outside steroid cream.

  16. Jenny

    I was diagnosed with LS 5 days ago and am very grateful I have found this site! I (like everyone else it seems) have scared myself stupid reading about this condition on the internet and as a 26 year old full time mum to 3 children I feel a bit more reassured after reading ‘the basics’. I look forward to your website being reopened and to be able to get in touch with other people in the same situation as myself.

  17. Paula

    Hi, My doctor referred me to a dermotologist as I had white itcy patches on my Vulva. I just had my biopsy a few days ago and should get the results in about 2 weeks. My consultant thinks i have LS and i am very worried (alos praying it is nothing worse). So if i have a steriod cream will my white patches disappear? I am awfully worried that i will not be able to control my LS and this scares me. I am only 30 although i have read it is more common in post menopause women. Also would having LS stop me from having any more children?
    Also is there any more symptoms that come with LS as i have noticed a lot of vaginal dicharge, could this be linked?
    I have read a lot of scary stories/blogs on the internet where people are saying that their life is over with LS. Does this mean i have more, possibly, worse symptoms to come?

    thanks x

  18. kathleen

    I am so happy to find this site! I was “diagnosed” a few months ago. I am currently treating my LS with clobetasone ointment. It helped a great deal at first, but I was told to wean myself off it to no more than every other day, once a day. My PA (physician’s assistant) at the women’s health center said that if it didn’t get better in a few months, to come back so the doctor could do a biopsy to determine if it is actually LS. I am heading down that road, I guess, as it isn’t feeling better after application once a day, every day. I almost hope it is LS just so I’ll know what I’ve got. I have been misdiagnosed by so many doctors, nurses, etc. Are there other conditions out there that mimic the symptoms of LS? besides bacterial vaginosis, yeast infections, stress and “it’s all in my head?” My PA was adamant that hormones played no part in this condition, because “you’re still getting your period.” Personally, I am skeptical. Thanks again for this site. I don’t feel so alone now.

    1. Post
      Author
      admin

      Hello Kathleen – welcome to our lichen sclerosus community at WLSS. There are a lot of issues here. First of all, I need to say that doctors all over the world tend to have different views about LS and about treating it. In some ways this is good because not everyone who gets LS is the same but in other ways it is not so good. The cause of LS is not known. The internet is wild with theories and I feel in the USA, the hormone theory is a favourite suggeston among doctors and patients alike. In the UK there are doctors who believe LS may be caused by more than one thing and hormones may play a role, so I am always happier to hear that a doctor or medical profession promotes the ‘unknown’ view rather than being adamant about it, but for the time being your PA may well be correct in what she says. Even if hormones were proven to be the cause, then the medics would have to figure out how to control that syndrome. So it goes on and on! My own view is that in many respects it is not important to know what causes it, so much as how to treat it and how to live a good and comfortable life in your own personal case. I have been living with LS for 16 years. Running the support function for 14 years. Misdiagnosis is very common indeed, on a worldwide basis. In the UK the medics would suggest that biopsy after a term of treatment for LS may have limited the ability to find LS in the biopsy. Research has shown that steroid treatment actually does clear the condition (temporarily) below the skin surface, so when a biopsy is done there is not much to see in the histopathology. It is not so much that other vulva conditions ‘mimmick’ LS it is more a case of vulva symptoms tend to be similar in a number of other conditions. Best to have tests for infections and yeast to make sure these are not present. In the UK biopsy may be done to rule out things rather than rule them in. It takes an expert to take a good medical history and to make a very close inspection of the vulva. As far as treatment goes we have guidelines in the UK that offer a suggested treatment of clobetasol (or similar) once a day, every day for four weeks. This will work well for some patients. However, there are many UK dermatologists who believe that hitting the condition ‘hard’ on diagnosis is more effective and some women are asked to use their treatment 2 times a day for three months and then reduce slowly to a maintenance treatment of two or three times a week, once a day. Obviously, you need to discuss this further with your PA as I am not allowed to offer direct medical advice. All I can do is offer you the different views and ways of treating that are used and ask you to discuss it with your own doctor.

      1. kathleen

        thanks so much for the reply! It was very informative and now I feel more confident about asking questions the next time I see my PA. It is hard to know what to ask about conditions like this, isn’t it? Especially with all the crazy stuff on the internet nowadays. This was very helpful, thank you.

  19. Nicky Clarke

    Like everyone else, i am soooooo happy that i’ve found this helpful & comforting site, I was diagnosed with LS 6 months ago but have been suffering for years & just putting up with the symptoms, I am 42 years old, luckily i have a kind understanding partner. My gynocologist spotted my LS when i had an internal scan for a cyst 6 months ago & prescribed me with a steroid cream to be used twice a week & to go back & see him in 6 months, my appointment is this month but i am worried because now i am totally white down there with a cut that just won’t heal, itchy lumps in both lips & a sore raised area towards the bottom of my vulva, the cream doesn’t seem to have helped at all & just climbing into the driver’s seat & i tear also i wake up everynight itching & have to get up & put on canestan cream, sorry everyone I’m feeling really low about it all at the moment & feel that i can’t talk to anyone so it’s nice to be able to offload to people that understand, any helpful tips on coping with this will be much appriciated, thank you. x

    1. Post
      Author
      admin

      Hello Nicky. Welcome to the lichen sclerosus community here at WLSS. It is very sad to see that while your gynaecologist has been observant enough to find your LS whilst dealing with another problem, which is wonderful and a shame more gynaecologists are not more observant. He/she seems not to have given you enough information about treatment and the standard of your care falls below the recommended guidelines. The BAD Guidelines (link above on the basics page) give the minimum treatment needed on diagnosis and patients need to be followed up until symptoms are under control. Using your steroid treatment twice a week is not enough and this is why things are not improving for you. I do not know where in the world you live and standards vary for treatment of LS throughout the world. The only helpful tips that come to mind are to ask your gynaecologist why you were asked to treat only twice a week when the recommendation is to treat daily for several weeks, The other tip would be to ask for a second opinion from a dermatoloigist with a definite interest in vulval disease. If you are in the UK you can use the information on the link ‘finding a doctor’. I hope you appointment goes well. Six months is a long time to be following an inadequate treatment plan and if you had been advised under the Guidelines, things may well have improved for you. It may be that you will need to take a ‘firm’ line with your doctor to ensure that you come away from your appointment with a more suitable treatment regime.

      1. Nicky Clarke

        Thank you so much for your quick reply & your advise, I have lived in Spain for 14 years but i am seriously considering a visit back to the UK to see my family doctor who is fantastic!!! & hopefully he will be able to point me in the right direction but unfortunately i don’t have any leave until November so in the mean time i will follow through with my gyno & hopefully get some help, when i was at my lowest i tried to book an appointment with a private gyno but to my suprise it was my same doctor who works also for the social security??!!!
        I am so happy that i have found you & will take your advice & use the cream every night & hopefully get some relief & see some improvement.
        Once again thank you soooooo much. x

        1. Di Eldridge

          Im in so much discomfort every damned day – the cream can I use it internally? that seems to be where i am sorest.
          My Gp is very sweet but pretty useless, my gynea dosnt know whay Im so miserable, I need to find a vulva specialist here in Perth australia. but how do you do that.

  20. Susan Bryant

    I am so glad to have found this site, I was diagnosed with LS in march and although I had a feeling that that was what I had it still came as a shock. My problem is coming to terms with it and to stop checking that it has not turned cancerous caused by my anxieties. It is well managed by an every other day application of Dermovate and am due for a review in November. As I have a daughter of 28 I am worried that it is hereditary as I do not want her to get this. I did not need a biopsy at the time of diagnosis as it had responded well to the treatment regime, although a little redder at the moment, could that be my stress levels or the warmer weather?
    It is good to know I am not the only one with it and that some people have had it for a long time and are still fine. (Sorry I am off to the doctors later to see about my anxieties before they take over my life.) For a while I have been feeling that my life was over, my husband has been so patient and is now celibate because I am too scared to let him near me.
    Thank for reading this.

  21. Concerned and curious

    I have just found this site and am very very curious as to whether or not I may have LS. I am 23 and have suffered chronic “yeast infections”, and “bladder infections” for 14 years, & no prescribed treatment has helped. Intercourse is not always painful, but the pain does happens frequently. When I swim in chlorinated pools, the outside and opening of my vagina are very dry, sore, and sensitive. Exercise (running) often causes a ripping feeling in my vaginal area. The only things i have found to help are hydrocortisone cream, acidophilus inserted vaginally, and hydrogen peroxide douches ( which hurt at first and then relieve pain and itching). Recently, my upper arms have begun to lose pigment in blotches, and the skin looks thinner. Ive never had sores or anything, but my vaginal opening seems smaller, and the skin seems lighter. Also, a possibly related symptom: my urine is often dark and has had a strong salty, food-like odor for 5 months. Weird I know: /
    Help??!

  22. linda.crook@talktalk.net

    I have suffered with LS for more than 5 years and i seem to be one of the unlucky ones where the symptons persist almost permanently. I have had repeated trips to doctors and gynacologists but the treatment never changes and I have to suffer the constant burning, itching, split skin and placques of white ulcers….. I recently had two large lumps come up and immediately went to the doctor who said they were abscesses caused by my immune system attacking the hair follicles, I am now suffering huge swathes of spots and rashes on the iside of my thighs and though this migth sound silly, the skin under my arms keeps going a dark colour and looks very crepey…. could the spots and skin changes be connected to the LS? I am again waiting to be referred to a gynacologist for her opinion but I have to say I am very very concerned and am getting very depressed and weepy with this constant problem. Any suggestions from anyone suffering similar symptons would be gratefully received.

  23. julie

    hi I have been told I may have ls and have been given steroid cream from my doctor to use for 2 weeks I am not sure what the next steps are she mentioned checking hormone levels I also have hypothyroidism and was wondering whether is was linked to hypo or hyper thyroidism I am alos on a lot od medication from chronic ilnesses and about 12 years ago had a vestibulectomy due to vulvadynia I think I have had this problem for a long time bbut have only had the occasional itch it is burning more than anything and very easily cuts and takes time to heal I am worried about this because I have read a lot of the internet info and now think I am going to get cancer of the vulva will I have to have a biopsy the doc said I may have to but not yet and I may have to see a specialist if it gets worse thanks julie

  24. linda

    Thank you for your direct reply to my email. I had already garnered some info from your very useful web site and had decided to ask my GP if i could be referred to either Amersham Hospital clinic or Stoke Mandeville if the gynaecologist I am seeing next doesn’t have the knowledge for treating LS – I really have to find some sort of alternative to aqueous creams and steroid creams as they do not work for me apart from a couple of days at a time when I hold my breath and think things are starting to settle – then, off they go again and we are back on the same old treadmill of treatments that dont work! I think I coudl cope much better if I knew i was going to have a decent break between outbreaks. I am told that no research is going on into finding a “cure” – why is that? Does this terrible condition not concern any of the medical research people? Does nobody apart from us sufferers realise what a dreadful life-defining condition this is? Life really does change for all of us and I would just like to think that somewhere ahead is a light at the end of the tunnel. It has helped a great deal reading other comments from sufferers and knowing there is a web site where I can rant sometimes, take a deep breath, and then get on with it!

  25. Jane

    Hi everyone – how lovely to have a chance to share with people who understand! I’m 53 and was diagnosed over 10 years ago. Thanks to Dermovate I have mostly managed to control symptoms. However, after a recent urine infection/antibiotics and then internal and external thrush, I find things have worsened. Now when I urinate it really stings in spite of being urine infection/thrush free. I’ve never had this problem before with LS before. I’m pouring on cool water when I urinate which helps a little but feel very low at the moment. Has anyone else had this problem suddenly develop? Can I dab on Dermovate on my urethra and if so will that help anyway? I’m trying to drink lots of water which also helps to dilute my urine. When I went to see my GP she has now prescribed anti-depressants for “vulvodynia” but I’m loathe to take them – what do you think? Thank you again.

  26. janet taylor

    Just like to say thank you for the information. Diagnosed last friday(19th) and didnt have a clue about this so came as quite a shock. Had thought any pain was a hangover from stitches after each of my 3 children. Youngest is 28 this week.

  27. steven

    i am a fourty five year old male and have been diagnosed by a dermatoligist, however his treatment recomendations have been washing with moisturising cream and 1% hydrocortisone cream to be applied twice daily. i have now been following this course for three weeks with no change in my symptoms which include a lare area of white mottled skin and little red dots on the head of my penis. should i not have been given steroid treatment? i have now had the condition for close to a year and due to pain/tightness when i get an errection my sex drive has all but given up. help addvice would be very much appreciated.

  28. julie nicol

    My Dr has diagnosed Ls ,and sending me to gynaecologist for biopsy.The thought of a needle down there sends me into a nervous wreck mode.Is it that painful?I have been using betamethasone valerate 0.1% ointment for several years,and it now seems to have given up working.I have also been given hrt internally now.My Dr says just use the emollient washes and stop using the cream.Has anyone used sweet almond oil with any success?I must say my Dr is very good.

  29. jane

    i have ls and have been using ointment for two years ,it never goes away .i am in so much pain with it ,and spend alot of nights awake .i have been put on powerful pain killers which i take every day .i feel so alone and dont seem to get any relief.i have told my gp and consultate.but i dont get any other answer other than use the cream daily ,which i am worried about .please can you help me

  30. Patricia

    Hi there! What a relief to find people who share some of my symptoms!! Approximately one year ago I went to my GP with soreness and splitting of the vulva. I also had a lot of discolouration and a lump-like blister. My urine was also strong and smelly. At the same time I was showing symptoms of being perimenopausal and border-line diabetic. After several visits to my GP and a Gynaecologist I was diagnosed with an ovarian cyst. The cyst later dispersed and a scan showed that I have a polyp on my cervix. I recently had a Hysteroscopy which confirmed the polyp. The Consultant said she could not see anything else that looked sinister but said she would refer me to a Vulva specialist. She highlighted that my GP should have sent me to one a long time ago! Due to the fact that I was very sore at the time of the Hysteroscopy she decided not to remove the polyp but would request that it was at the Vulva Clinic. She said it would be likely that a vulval biopsy would be taken under local anaesthetic at the same time the polyp would be removed. That was a few weeks ago and I am still waiting for an appointment. I am at my wits end and very frustrated at not being able to do anything about it. I am in constant discomfort and pain every time I urinate as the urine makes the splits on my vulva sting like hell. I am urinating frequently and constantly having to rinse myself with cold water. My vulva itches daily and is very sore. Sometimes I wake in the night itching and to urinate. I also have scaring and am unable to have intercourse. I am also suffering with back pain but I do have a prolapsed disc so not sure if this is the cause of my pain. My day to day life is miserable due to this vaginal soreness and I am very concerned. Please send me any advice you may have and how can I hurry this process up? Also, I do not want to have a local anaesthetic when I have the biopsy etc and would prefer a general anaesthetic. Is this possible? I was offered one with the removal of the polyp!?

    1. elizabeth

      I am 78 and was diagnosed about 10 yrs ago.The best relief I have felt is to use wipes containing aloe Vera, and when in agony after urinating at night, applying Aloe Vera gel, obtainable at Holland and Barrett gives almost instant relief. I also use it on the splits around my vulva, and feel it is safe and a natural product. Hope this helps

  31. Barbara Tait

    I wrote last on July 1st. Since then I saw the gynaecologist who confirmed LS and said that some people insisted on a biopsy but he didn’t think I needed one. I was absolutely thrilled that he didn’t think it was more serious and I chose not to go for the biopsy. He also said I could be followed up by the hospital or my GP and that was up to me. He was impressed that my GP had been so accurate in her diagnosis, so that made me confident to have her do the follow-up.
    She had prescribed Mometasone Furoate 0.1% ointment moving on to Hydrocortisone 1% ointment; the former being a steroid which she said had less of a thinning effect. However, the gynaecologist changed the medication to dermovate cream. The mometasone had worked like a dream and I am still free from itching now and using nothing at all.
    My 2 questions are
    1) Was I right to opt out of a biopsy and
    2) Who’s right about which medication to use?

    1. Post
      Author
      admin

      Barbara, in the 20th century, knowledge was such that many doctors preferred to biopsy to be sure of diagnosis and to rule out malignancy. In the 21st century, doctors are more experienced and able to diagnose LS without a biopsy. If this choice was right for you and your doctor was also happy with it, then it seems like a satisfactory outcome.

      The gynaecologist who gave you dermovate cream has the right idea in giving you the internationally accpeted treatment of choice, Steroids are all about potency, dermovate is one of the highest and most effective. Hopefully it will work well for you and make your life comfortable.

  32. Emmie

    Hi

    I was diagnosed when I was having a routine smear and my doctor referred me on to a gynaecologist with a special interest in LS. Prior this I was foolishly putting up with itchy symptoms and had not noticed the colour changes of my vulva. I’m currently using the dermovate ointment and the itch has gone and I’m alot more comfortable however I have noticed now that one of my labia has shrunk alot(sorry if this is to much information) but am concerned how much they will shrink. My main concern though is that I’m trying for another baby and worried about use of a steroid cream and wether I can have a natural delivery as the skin has thinned and I tore badly last time. Any information regarding these matters would be greatly apperciated.

  33. ricki

    as with everyone thanks again for this site!
    I was diagnosed with LS about a month ago and with steroid creams the itching has definitely subsided. Most of the comments and reading I have done have been about LS in the vaginal area but my itching has only been in the anal region. Just wondering if this happens often? I am alsowondering (and a little worried) whether it will most likely occur at some point in the vaginal area?

  34. Pam

    I got diagnosed 2 years ago by a Urogynocologist that I see for another medical problem. I had the symptoms for quite some time before this diagnosis and was in terrible burning pain. I had previously seen this Dr. several times to get some assistance regarding what may be going on. Well, when I finally did get a diagnosis and some steroids, I had already lost part of the architecture of the labia minora which has been fused into the surrounding skin by the inflammation. I have a lot of sensitivity to the clobetisol ointment and creams. It burns for hours and at times I may eventually clean it off to lessen the pain, which has become so intense. I have not been able to be consistent with the treatment and now am very worried about how to treat this as it remains very active.
    Any suggestions you may have would be welcomed. I have read about testosterone helping to bring some of the architecture/definition of the skin back again. I am reading that you may not be in agreement with this finding.
    I am so excited to hear back from you and perhaps get some relief and begin healing.
    Thank you soooo much!!

  35. vikki

    Just wanted to say thanks for this site. I let everything go for too long before seeking help and ended up with chronic LS and the need for surgery. Yes, it wasn’t much fun for 4 or 5 days after the operation but oh the joys of getting back to a healthy and enjoyable sex life make it all worthwhile and curiously my chronic backache also disappeared – which seems most odd but who cares!

    1. kim

      I have had LS for four years now and it’s well controlled. U find when an outbreak occurs my stance changes as walking can be very uncomfortable….. hence the backache u also experience.

    2. Carole McG.

      dear vicki, my name is carole and i was diagnosed with LS about 11 years ago. i have had to use clobetasol cream for the past 10 years to keep my symtoms under control but feel as though i dont want to use creams daily for the rest of life. recently my gyn has referred me to see a gyn onocoligist who wishes to do surgery. after doing online research you are the person who seems to have had surgery. after your surgery have you had any reoccuring syptoms. my doctor can not guarentee that the condition will not come back which frightens me.at this point i am unsure what to do. can you offer me any guidance?

  36. Lola

    Hi,

    My friend was diagnosed about 18 months ago and has managed okay with her treatment, however she has developed red/white scaly patches of skin on her breasts. Her doctor suggested this was linked to her LS? Is this likely? The GP seemed really uncertain and obviously my friend doesn’t want to ‘ignore’ this symptom if it has nothng to do with the LS.

    Thanks,Lola

  37. Ruth

    I was diagnosed with LS about 4 months ago. I had a course of steriod cream for my vaginal area and a stronger steriod cream for my back as I have patches there. I always wash with Femfresh.The vaginal area seemed to clear up but has started to itch again, the patches on my back are just the same as ever, the cream didn’t do a thing for them. I have recently started with extremely, itchy eye lids and the chemist suggested it was dermititus, but I wondered if it was connected. I have not been tested for thyroid problems in a while,but I have in the past, would you recommend that I request a blood test. Any help you can offer will be appreciated.

    1. Diane

      I too was diagnosed 4 months ago, I used a strong steroid cream for and now have a milder one. The symptoms have gradually got worse and have travelled down my thighs, I was advise to use no soap products at all on the affected areas, and that also means I have to wash my hair over the bath to prevent shampoo running down my body. I use dermol 500 instead of shower gel. This has reduced the itching – I use it as cream during the day too! I was told to avoid femfresh and the like as it kills off natural defences.
      Strangely enough I also have developed itchy dry eyes which the optician has put down to not producing enough tears, so I use eye drops, which help the itch, the doctor has just given me cream for one eye, which seems to be more effective. I have not read anywhere of the link, but would be interested to know if others have.
      I have had a thyroid test, which was normal. I cannot wear pants which sit in my groin area, so have to wear shorts, the upside of this is, although I wear skirts most of the time to avoid rubbing, I can wear jeans occasionally, although I suffer a bit after!!!

  38. Di Eldridge

    went to see a dermatologist today – totally unrelated went for a skin cancer check up – so have a sore arm from having one froze off, but I thought he’s a dermatologist I shall ask, well i did and he did have a look, but I had to pull my bits apart he didnt even touch me!, was all abit odd nothing like a gynea appointment thats for sure.
    He has put me on strong ointment twice a day externally only – but trying to look at where to put it, oh my goodness what a palarva! anyway I have to go back in 2 months so fingers crossed he’s at least treating it. and he siad its not that bad. Sue i cant have sex, wear jeans, climb up into my landcruiser without thinking about every step, run anywhere, walk alot, as it seems to chaff its all so swollen. but has given me 10 minutes amusement trying to get the oinment in the right place.
    Do you know of a support group in australia?
    thanks for being there – dont feel half as alone now Ive found you.

    1. Post
      Author
      admin

      Welcome to our lichen sclerosus community on the internet.
      If you find out about a support group in Australia, please let me know and I will add it on the links page.
      In the meantime, there are some Australian members at the LSwomen emailing group, we would be happy to welcome you there.

      Mailto:LSwomen-subscribe@yahoogroups.com to join this group.

  39. Gill

    I too have been suffering from this, for almost two years now, I’ve had a biopsy (nothing to it) and was home the same afernoon

    Is there anything that actually cures it

    I went back to the doctor as I’m using sterioid cream, and she said “I dont maybe its jut something you have to deal with”

    I’m 57 had a hysteroctomy when I was 32 – any suggestions would be appreciated

    I have ulcers that split, then I bleed, and the itching (I feel i would tear myself to bits)

    If any one has any comments would love to hear

    1. Post
      Author
      admin

      Welcome to the lichen sclerosus community.
      I am sorry but there is no cure, even though people often write on the internet that they have cured themselves. This is a complex skin disease prone to relapsing and remitting, so very often it can appear as though LS has gone.

      The treatment of choice internationally for LS is to use a strong topical steroid. It is not always about the steroid but how it is used. See the information in ‘the basics’ text on the page above.

      If things are still not under control, see your doctor again – if you see a family GP, try a referral to a vulval dermatologist or a vulva clinic.

  40. Loey

    I was diagnosed with LS two years ago and have been able to control it by doing the following:-
    I apply pure emu oil night and day (I recommended this to another LS sufferer and they too have found it helpful)
    I changed my diet removing gluten as I previously ate a lot of pasta and bread
    I drink a lot more water (only filtered)
    I removed caffeine from my diet and only drink green tea
    I use steroid cream once a week.
    I wear only organic cotton underwear

    I have had success with these changes for well over a year and prior to this had days that I thought I would not be able to go to work I was so uncomfortable.

    My specialist and GP have both told me that I am the only patient they have that has managed to control it so well, so I believe the changes to my lifestyle have been worthwhile.

    Interestingly I too have dry eyes, and if I do experience a slight LS outbreak I notice my gums are usually tender, and wonder if anyone else experiences the same thing.

    I hope this information is helpful,

    1. Nancy Salisbury

      I just saw the above post, be it a long time ago. Hope you dont mind the contact. I have today been told I may have LS. I am so scared. I am 61. I have had these problems for over a year. Been given creams, lotions and potions and also Vagifem for vaginal atrophy as I was told it was ”my age”. The doc looked today and said she thinks its LS and I have to have a biopsy. I read your post with interest I have had dry eyes for a couple of years and the last few months a sore mouth on eating hot food. No one at my docs took any notice of this. I can’t bear pants in my groin and yet there’s nothing there to see. Inside me hurts so bad and itches all the time. Its like cracked skin, that kind of feeling. I think even the doc was a bit taken aback today. I have read that you can get Vulva cancer so I am scared to death – literally. I can’t have the biopsy for a month though so its a month of more worry. I dont use anything in my bath water as the doc told me not to many months ago when she said it was vaginal atrophy. So I will try the above and see what I can do for myself. Just sitting here my groin area is burning and so is my rectum. Thats aside from whats going on inside. I had never heard of this ‘disease’ before. But the vulva cancer thing has scared me so much. Any help you can give me would be so much appreciated. Many thanks

    2. Kim

      I have had enormous success with diet as well and coconut oil taken internally and used topically. I eliminated dairy. I reduced gluten-I have the odd piece of squirrelly bread and eat pasta once a month or so. I have cut out coffee and have very little sugar. I take Vitamin D, fish oil and the coconut oil-1tbsp in am and one before dinner. Dr.Oz’s ‘miracle’ is also very effective with auto immune. I also only use cold pressed oils like virgin olive oil and try to balance omega 3 and 6. I have also done a cleanse. I have had this,my mom thinks from childhood, but was rarely exposed to sugary treats, or gluten. I didn’t tolerate dairy from infancy, so this didn’t play in much. I noticed flare ups coincided with shots-HB before i traveled and again this year with the updating. I’m not sure about flu shots as I don’t get them. I wonder if anyone else has noticed a link between shots and auto immune flare ups?

  41. Rose

    I am a 27 year old woman just diagnosed with LS last week. I am very hesitant to use the steroid cream, as I’m thinking about all of the side effects. I am so careful about using natural body products because I know everything applied to the skin is absorbed into the bloodstream–and now a doctor wants me to use a topical steroid for the rest of my life? I want to get pregnant in the next few years–how will the steroid affect the developing fetus? I really appreciate all of the posts; just read through all of them and gained wonderful information. However, I notice that most of them seem to be made by women over 50. I’m wondering how adding another 20+ years of steroid use will affect my body long-term. I’m not sure if the risks of using the steroid outweigh the precautions? I would appreciate any feedback, especially from any women in their 20’s and 30’s who might have gone through this during pregnancy.

  42. Sheila

    Hi

    Well yet another newly diagnosed person who is feeling slightly nervous by it all!!! I am 41, mother of 3 kids, the youngest is 1……so feeling a bit vunerable, but feel better knowing that there are others out there and we have somewhere to share our thoughts and worries.

    1. Post
      Author
      admin

      Hello – welcome to our Lichen Sclerosus Community. If there is anything I can help with at any time and you want to talk one to one, do ask. In the meantime, wonder if you can share with us, if you think you had LS during your pregnancy or if it came on afterwards? Vulnerable is a hard place to be, but as you have seen, you are not alone and hopefully the treatment will make life more bearable. Take care.

      1. Sheila

        Hello and thanks again, at the moment I am just reading as much as I can and getting my head round whats it all involves, as with most things the more you know the less scary it becomes and the better hopefully I can handle it.

        No I didn’t have it when I was pregnant, but I do remember when it started as it was exactly alongside giving up breast feeding in march of this year, I assumed it was all just hormonal changes while my body got back to normal i.e periods…but the irritation didn’t go away….thankfully at the moment steriod creams are keeping me from insanity!

        I know where you are if i need you, thanks.

  43. erin

    I am an American marrying a Frenchman, so I live in France. I have had mysteriously painful sex for 4 of my 5 years with my partner. I am frustrated because I can not find a “specialist” in France. For example, I would like to find a dermatologist that specializes in the vagina or a gynecologist that specializes in LS. I have tried to find this, but apparently specialists don’t exist here. My gynocologist here that I have has mentioned that she believes I have LS, but she doesn’t think I need a biopsy. She also doesn’t believe in the conventional use of steroid cream. She just gives me a fatty cream to use daily. The other gynocologists that I have seen before this one I have now didn’t see anything wrong with my sex and thought I needed to see a pyschiatrist! Anyway, I want to be in America so I can find a specialist, but that isn’t possible. I have looked on forums and heard of a doctor near Paris (Creteuil) that seemed to work for others with LS. I live near Marseille. I am worried that my gynocologist I have now doesn’t know enough about LS to help me and I’m becoming more and more scarred. I’ve had biofeedback which streches me out and seemed to help a little, but, I must continue it all the time and it really only does a little. I do continue to have sex, but it is painful and I have to wait for the cuts to heal in order to do it again! Anyway, any advice? Should I insist on having a biopsy just to know for sure? Should I find another doctor? Should I insist on her putting me on steroid cream? Painful sex for 4 years is really unacceptable. I’m STILL searching for an answer. Thank you for your response. I appreciate greatly this site.

    1. Post
      Author
      admin

      Hello Erin, welcome to the Lichen Sclerosus Community here. In the history of LS most doctors did biopsies but as time has gone on the need for them becomes less and so the right doctor with real expertise may not need to do a biopsy either.

      I understand about the cuts and waiting for them to heal. I lived with that for a while myself and then had a new surgical procedure here in the UK called a Z-plasty which has been wonderful. Yes, 4 years is a long time I agree.

      I have mailed you privately to suggest what I believe to be a ‘real specialist’ in France but I am not able to give out the names of doctors publically, so you will see my email. I have heard from other contacts about the non use of steroids in France but I know the person I have suggested to you in my email does use them. You may only need one good doctor who specialises in vulval disease and who realises the problems of both the vulva and the entrance to the vagina.

      Yes, It sounds like a good idea to try another doctor because you have lost all faith in the one you have and that appears to be adding to your frustration.

      I hope this is helpful Erin and my email to you also.

      1. Jenny

        Hello,

        I am 31 and have pretty much avoided sex and having boyfriends for my whole adult life because every time I have sex (it happened the very first time when I was 19, right through my twenties), I split open, and like the other lady, then have to wait weeks for it to heal.

        My skin is paper thin has no elasticity at all. At 31 and after losing yet another boyfriend because of these problems, feeling completely depressed, I went to see a gynaecologist. She didn’t recognise any kind of condition, but I insisted she referred me to a second specialist. After waiting 5 months to see, her, then another 6 months to see the second, I was diagnosed with LS. I have been given the steroid cream to use every night until my next appointment (again – another massive wait of 5 months).
        I am confused as I was told that the steroid ointment should help to strengthen the skin and make it more elastic. But reading these forums, women are saying that it thins the skin?? My skin is already impossibly thin! I don’t understand why it would therefore be prescribed.

        I have loads of scar tissue (I also get keloid scarring in other areas of my body). I also get thrush all of the time and over recent years have dribbles of urine leakage after each time i go to the toilet. I am so fed up and lonely because of this condition. I was always sent away by GP’s and made to feel like I was silly (they used to say I wasn’t lubricated enough).

        I have been using the ointment for a month and I guess i will only be able to tell if it works by having sex again. Also, I wanted to ask a bit more about the operation you mentioned as I was told I might have to have this done, but it wasn’t explained to me.

        Another question is, by using the steroid cream, would this mean that condoms could be eroded by it, or without a condom, would this affect a mans penis skin?

        Finally (sorry, so many questions, I know), I was told that I have a very small perineum. Apparently, people with this, are more likely to get LS? Is this right.

        Even writing this, I feel like crying. I feel like I will never be able to live like a normal female, and will be lonely and unable to have children for the rest of my life.

  44. Kathleen M

    Hi. I was so happy to find this web site. I was diagnosed for LS by a biopsy in March 2009. I am 64. It has been a horrible and depressing roller coaster ride. My GYN is good but I had a hard time communicating with her about the disorder and much was unanswered and I was at sea. Finally, after reading “The Basics” I was armed with the knowledge needed to ask the right questions. I was REALLY under using the Clobetasol. I was blaming the Clobetasol for my labia shrinking and why the whole area was so soft and mushy. Now using the cream appropriately the condition seems to be improving.

    I was so depressed and felt alone. I felt like I had a social disease and this means no talking about it to anyone. Because I was afraid it might be genetic I told my two daughters (ages 43 and 42), over the phone, and said what the name was and they were to look it up but I would never discuss the issue again with them.

    Thank you for this support group. You may have saved a life.

    1. Post
      Author
      admin

      Hello Kathleen, Welcome here. You are no longer alone and I applaud your courage in letting your daughters know. I think it shows what a good and caring mum you are. They may not get LS but to have given them prior knowledge ‘just in case’ is an act of pure love. I hope that your life will improve with the treatment and that you will improve and really enjoy life from now on.

      1. Kathleen M

        Thank you for your wonderful response. I was really feeling low and your kind words have helped. As time goes on I think I will be posting other questions and concerns as I feel I finally found the right place to gain the support I need. Also, I am hoping that if there are other women who find themselves feeling as lonely and depressed as I was feeling, they will join this discussion so we can all help one another.

  45. Deborah Alexander

    Thank you for your site. It must be just about the only thing available for LS sufferers. I was diagnosed 2 months ago by my GP shortly after having my ovary removed. A few days after the operation I had a feeling of pressure and to be honest I thought I had a prolapse. The pressure got worse and I ended up always seeking out a seat with a cushion. After a really bad weekend I went to my GP who said I had LS and prescribed Trimovate, after 2 weeks of being burning sore I returned to the doctor who then gave me betnovate ointment and also a topical oestrogen cream. I am now 2 months into treatment and although the awful feeling of pressure has gone I am no better as far as the soreness is concerned. Last week I saw another GP who gave me Dermovate. I know this is the preferred treatment and I hope it works. It is so great just to share with another as this is such a lonely disease, when someone asks how I am,I can not really tell them. I was so relieved to read that some women are able to have sex once again, how I miss being close to my husband! Does this soreness ever go away?

    1. blueskye

      I have lived with LS for 4 years now and what works for me is to wash my whole body with a moisturiser called CETRABEN. It is a pure moisturiser with No additives, I even use it on my face when it feels exceptionally dry.
      I have been single for the past 10 years so sex, so I thought, would probably never happen again, very depressing! However, once my LS was under control I met a lovely lovely guy and we have been together for 9 months, and the sex is good! He is very loving and understanding and gentle. Being in a relationship again has taken a lot of the financial pressure/lonliness etc etc which used to cause me quite a lot of stress which also makes my LS flare up.
      The soreness does go, it’ll just come back now and again and once you find something that works for you you can quickly get the soreness under control and it’ll go again.

      So there is hope, I’m 53 and thought I was washed up!

  46. Antonina

    Dear Admin,
    thank you so much for this web page! I am a citizen of Latvia, and it seems our daughter (she is 5.5 years old now) is the only one diagnosed with LS in our country. The diagnosis has been confirmed by Israeli, Estonian and Lithuanian doctors. She has responded well to both Dermovate and Tacrolimus, but now reading about the Tacrolimus/cancer link scared us a lot.
    Would you please confirm once again that steroid (Dermovate) is a preferrable treatment compairing to Tacrolimus? What about Dermovate side-effects, such as skin atrophy?

    My daughter also has coeliac disease, and she suffers from awful constipations. Would like to know if constipations can be associated with either coeliac disease or with LS?
    Thank you so much for your support,
    best wishes from Eastern Europe

    1. Annee

      Dear Antonina,
      I live in the USA and my daughter was thought to have celiac’s disease which is definitely related to bowel blockage and constipation. Getting my daughter on the right foods did help her but is still forced to take over the counter medications to help loosen the bowels. I hope this helps with your question and wish you every sucess with your daughter’s LS and other difficulties.

    2. Post
      Author
      admin

      Hello Antonina
      Thank you for your message. I asked one of the doctors that this service uses as an advisor what reply should be made to you. I was asked to reassure you that the possible cancer potential risk is likely only to apply to long term use (many years) and the same with skin atrophy due to dermovate and excessive amounts.
      Dermovate still appears to be the treatment of choice in children and reports from UK doctors are very positive.

      Many of the published medical papers show constipation to be a problem in children with LS. Sometimes it is helpful to work on solving the constipation problems, rather than what is actually causing it.

      I have no real knowledge about coeliac disease so I am not able to comment on that part of your query.

      I hope you will find this useful in helping you to make treatment choices for your little one.

  47. Tigger

    Hello Antonina, my daughter also has LS and when younger lots of problem with constipation. We used to give her glycerine suppositories. A bit larger than jelly beans, they were gently inserted into her rectum, where they dissolved & quickly stimulated a bowel movement.

    Good luck! Tigger

  48. Corrie

    I’m 32 and was diagnosed with LS nearly 10 years ago now. It was one of the most difficult things I had to come to terms with. My boyfriend at the time (now my husband) was so patient as sex was virtually impossible and I was feeling really low.
    I am pleased to say that my LS is now fairly well controlled and I have managed to regain a normal sex life.
    I only use emollients to wash with and like a previous person said I wash my hair separately to make sure I don’t get any soap on me.
    For those people who are struggling with LS, I would like to reassure you that things really do get easier.

    1. Post
      Author
      admin

      Hello Corrie
      Welcome here to the lichen sclerosus community. I would like to say how very pleased I am that you have shared such positive news and offered a hopeful prospect to the many women who visit this site. We need many, many more kind and helpful posts from women like you, who have struggled and overcome. I too, am a woman who has wanted to offer hope and I have shared my struggles and triumphs for 16 years and it has often felt lonley to be trying to offer hope for the future to so many people, I am grateful to you for sharing.

  49. Annee

    A brand new HELLO to this lichen sclerosis community! Wow, what a fantastic website to stumble onto today.

    I went to a derm specialist in May (2011) for an entirely different condition (HS) who immediately indicated that a biopsy was needed & low & behold was dianosed with LS. What’s worse is that I’ve had LS for at least 20 years but was never diagnosed until now. My clit is completely closed, my labia has shrunk and it’s moved on to the peri anal & anus areas. I’ve been on the clobetasol ointment & vaseline (petroleum jelly) and sitz baths since May. I’m told to not use sponges or wash towels but instead to use my hands with a mild soap and gently cleanse the area. I can not wear jeans (denim) and long slacks are now an issue as they too cause additional inflammation & irriataion. Due to my severe HS, I’m on an anitbiotic and a pill given to men for prostrate cancer. I shared this with my daughter and my sister for medical history purposes but it was not easy to say as both a mother and a sister. I have been feeling extremely depressed, humiliated & very lonely…it’s very nice to see that I am not alone. Thank you for creating this website.

  50. Kathleen M

    Hi, I have posted previous messages on this site. First this site helped bring me out of a dark place and I no longer feel alone. Today I am seeking to understand this condition of LS. Is it the Clobetasol or LS that causes the shrinkage of the labia and the softening of the outer area of the vulvae? I think I am using the Clobetasol properly. Two questions: will using the cream help stop the process of this shrinkage and other changes that I have observed; and could you explain what is meant by the “finger tip unit?” Once again I am so happy I found a place to bring my concerns too. Thanks.

    1. Post
      Author
      admin

      Hello Kathleen
      A finger tip unit is a measure of the ointment that is put on the tip of the finger and extends down as far as the first joint in the finger, so roughly about one inch. Your dermatologist needs to tell you if your case needs this much treatment. In any event, any doctor who treats your for LS needs to tell you, before you leave the clinic, where to put the treatment and how much to use and how often.

      1. anne47

        I was shouted down by my derm when i asked him if an inch or fingertip amount was correct for me.He said that no ones vulval area is alike and therefore before using a fingertip amount (if that is what is said) people should definately speak to their consultant as admin says. I hope that anyone who reads about this amount of steroid checks to make sure its right for them as maybe one steroid is stronger than another, so nothing is set in stone. I only need half that amount as any part of my vulval area is not big by any means, and over time the areas requiring steroid change so best check where you need it and how much, and do not accept the use of steroid off your own back. Ask, It seems the way to go.

        1. Post
          Author
          admin

          I believe the discussion about the finger tip unit has come about because of a recent talk by a very special and well qualified dermatology nurse consultant in the UK. She spoke about this measurement to try to dispel the theory on the internet that a ‘pea size’ amount of steroid is enough for everybody and should only ever be used. This is not the truth. The pea sized amount theory is one that has been promoted by patients interacting on forums and in other groups and possibly by some doctors who are not happy with prescribing steroids. When the LS is very active and there is a lot of itching and palor then a finger tip unit has been shown to be the most effective way of getting things under control. For the majority of people the pea sized amount for someone with extensive, out of control LS would not be effective. I am sure it was not suggested that this amount needs to be used all the time or every day forever! I agree with Anne47. There are far too many women contacting WLSS who have not been given enough information for their own case and then they search for more information on the internet and are met with a total overload of patient shared experiences and this makes them more confused. (Including me because I am a patient too!) Everyone is entitled to share but everyone needs to understand that the holistic approach is best, where the doctor and patient work together to treat in the best interests of the patient and the whole person. There is not enough of this happening at the moment and we as patients need to ask more questions from our doctors and encourage them to interact with us and make sure we get enough information for our own case. The internationally accepted medical view of using steroids is that the safe amount is not to use more than a 30g tube of (Dermovate) for longer than 3 to 6 months. However, in some cases, patients may be asked to use the steroid treatment for longer than this if they are in the 30% of people who do not respond well or have other complications and even then, they are under the supervision of a consultant, who is monitoring their use of the treatment. I hope this helps. LS is a complex condition that affects everyone differently. Never underestimate the value of steroids they often improve quality of life and prevent further disease and sometimes surgery. It is never going to be easy with this condition and so far, it looks like a ‘one size fits all’ approach is not going to be the case. Thank you for the chance to have this discussion, which is what this message is about. Be well everyone.

  51. carolec

    Hi, thank you so much for this website. It’s good not to feel so alone. I think I’ve had LS for a long time but was only diagnosed a month ago. I was prescribed dermovate which has relieved the itching. But my vagina had narrowed a lot and I havent been able to have intercourse for some time. Is this reversible at all? Does continued use of Dermovate eventually lead to the vagina widening or do I have to live with this forever? I would like to be able to have sex again with my husband. Are there any surgical options to reopening the vagina? The Channel 4 Embarrassing Bodies programme recently featured a woman with Lichen Planus whose vagina had fused and they showed her having laser surgery to open it, so I wondered if this is appropriate for LS sufferers. Thanks

    1. Post
      Author
      admin

      Hello Carolec
      You ask some interesting but very valid questions and even some doctors may struggle to give you a good reply. I will do my best.
      Some people do respond to treatment at the vaginal opening with Dermovate but for many women, this needs to be accompanied by the use of dilators. It depends on the level of narrowing but probably if sex is uncomfortable then dilators can help. (I used them for 6 years, they were amazing, mainly because I had no partner to have sex with and it seems essential to keep the area working regularly.)
      I saw the Channel 4 programme and the surgery. Channel 4 like to show very extreme cases. The surgery for narrowing with LS is not quite as drastic as that shown. Not sure that the laser would be used in a case of LS but a surgeon would explain the procedure to you. In the UK doctors can offer two types of surgery. One is called a Fentons procedure but there is another more up to date surgery called a Z-plasty. The Fentons seems to give mixed results and often women still need to use dilators and treat with Dermovate. I had the Z-plasty 3 years ago and it was very successful and has attracted good feedback from other women who have had it done. It was done on the NHS at a hospital in Plymouth, Devon, Uk. If you would like to know more, do mail me using the contact email form here on the site.

  52. Angela

    Hi
    New to the site and what a relief to find other women out there who will understand.

    I was diagnosed with LS in 2010 and treated in vulval clinic. I used Dermovate as prescribed and was discharged in April 2011 as my LS was under control. I continued to use the Dermovate twice a week as advised, but its not kept it under control. I self referred to my local GUM clinic in August as I had a thrush infection as well (after a course of antibiotics). The consultant there has been great, with regular monitoring, but even with daily use of dermovate my LS is worsening. I am now waiting for an urgent referral to a dermatologist but would welcome any suggestions on:
    how to get it back under control
    how to prevent further flare-ups? I’m already following all of the advice in the Basics section.
    any thoughts on links with changing hormone levels (I’m 53!)?

    Thanks

    1. Post
      Author
      admin

      Hi Angela. Sorry to hear you are struggling at the moment. I really wish I could offer you something but I am not able to give actual medical advice and the best thing is to get to the dermatologist as soon as you can.
      As far as I know, there is mixed evidence for hormonal triggers with LS, the doctors are still not able to tell us if this really does affect the flares or not. You need to ask all of the above questions when you see the dermatologist. I think for the time being you need to follow any advice the GUM clinic gave you. I hope the appointment comes through soon.

  53. marion

    I am so pleased to see a website for this condition. I am 61 years old and first went to my gp a year ago with vaginal dryness and soreness having sexual intercourse. I was prescribed vagifem pessaries and then earlier this year I noticed other changes down below and was referred to a gynaecologist. He carried out vulval biopsies which confirmed Lichen Sclerosus. I was given eumovate cream and when I went for my follow up a couple of months ago I was assured that it had settled down and told to stop the cream but carry on with the pessaries. However, as I was still finding it very sore having sexual intercourse the specialist said I had a tight skin bridge on the posterior fourchette and suggested a fentons procedure. Whilst, deciding whether to go ahead with the procedure the LS flared up again and I went privately to a dermatologist who specialises in LS. She prescribed dermovate ointment and said she didn’t think I needed a fentons procedure. However, after being on dermovate ointment for 6 weeks it is still too uncomfortable to have sex. Do you know what the success rate is for fentons procedure for someone with Lichen Sclerosus? I would love to be able to enjoy sexual intercourse again.

    1. Post
      Author
      admin

      Hello Marion
      One thing I must not do is try to contradict anything your dermatologist has offered you. However, I had a skin bridge and used Dermovate for a long time and in the end I had to have it removed. I used vaginal dilators for 6 years which did help, together with Dermovate. I made the choice to endure the constant tightness and tearing and then I discovered a new surgery which I had done 3 years ago. The Fentons has a very mixed success rate and often patients need to still use Dermovate and dilators for a while. I have just shared this with another person on the messages above. The surgery I had is called a Z-plasty – it helps to stretch the skin and also I had the skin bridge removed and it can be done on the NHS – the surgeon is in Plymouth, Devon, UK. After the surgery I was back to having sex in only six weeks. So you may not need a Fentons procedure but it may be helpful to have the skin bridge removed and I think its worth getting in touch with your dermatologist or even your GP to see if you can get further advice. I am now 64 and even I am not happy if LS affects my sex life and I always feel that the sooner you can get help the better. It is hard to make doctors understand that every week that goes by is another week of our lives gone and we, as woman want to enjoy the benefits of sex in later life after all the other things we have been through with our bodies. If you would like to mail me to discuss this more you can email me using the contact email form on this site.

  54. Annee

    Dear Admin.
    I was here a couple of days ago discussing my ‘clit’ had closed, the labia shrinkage and that it is spreading to the perianal areas. I feel like when I urinate, it is coming out ‘thick’ but when I discussed same with my dr., she said ‘we should keep an eye on that’. Ive had an appt since then & the dr never brought it up. I have noticed an outbreak of ‘pimples’ in the pubic area and they are becoming very itchy. I wonder, is this LS going to keep spreading and can it affect/spread to my uretha? I do my sitz baths daily and am diligent with using my medications but I get more and more nervous about this everyday.

    1. Post
      Author
      admin

      From what I am told by various international doctors, LS is not supposed to affect mucosal skin and the urethra may fall into this category. It is possible there may be some disagreement among doctors about this. In general, doctors have differing opinions about what LS does and does not do, so your question may be one that does not have a definite answer. LS often obstructs the urethra when the labia fuse over it, preventing the flow of urine. I understand from the doctors that if LS is not treated and if it is not managed and under control, it will worsen and possibly extend further across the vulva and perianal area. Anxiety and nerves are very common and a normal reaction to living with a condition that doctors are not able to supply all the answers for. There is every possibility that there is no way any of us can have a real prognosis for the future because of the nature of LS and because it tends to affect everyone differently. I notice at international conferences, it is stated that 70% of patients will respond well to steroid treatment, which is a high number and hopefully this news will offer some comfort. It sounds as though you are doing everything possible to treat the condition. On your next visit to your doctor, why not ask all the questions that you have shared with us here and see what response you get, LS is one of a number of skin conditions that there is not enough known about or enough research. Skin is low profile (sadly) and does not attract a lot of reasearch, except in the case of Eczema, where there is always a lot going on. We would be happy to hear what advice your doctor gives you. Take care and be well. Feel free to comment or mail again.

  55. Gemma H

    Hi.
    I was diagnosed with LS 3 days ago. I’m 29 years old. My doctor has requested a biopsy and i am waiting for the appointment. 5 years ago i was diagnosed with an under active thyroid which my doctor thinks may be the cause of my LS. It’s nice to know I’m not alone and to be able to get advice and help from people who are going through the same thing.

    THANKS X X X

    1. Post
      Author
      admin

      Hello Gemma, welcome to the lichen sclerosus community here. Yes, one of the main theories for the cause of LS is thyroid but this still has not been proven. At a recent talk in the UK a leading Professor of Dermatology stated that there may be more than one thing that causes LS. Later on WLSS hopes to include extracts from the Professor’s talk, here on the website, so do watch out for that. Maybe around December 2011. In the meantime, be well and take care.

      1. Gal

        I am newly diagnosed with LS via biopsy, of the whole body (not the genital region) but am also a Hashimoto’s patient for the last 10 years and take thyroid meds. My dermatologist diagnosed me. I have an endocrinologist for my Hashimoto’s. Do you think it is prudent for me to visit with my endocrinologist since she is an expert in auto-immune disease? I am now wondering if I am going about this treatment plan the wrong way. I really love my endocrinologist – she is very smart and spends all the time I need. Unlike my dermatologist who gives me 5 minutes. Thankfully here in the U.S. we still have ‘choice’ when it comes to choosing doctors. We are pretty much against socialized medicine. I see the posts from women in the UK and other places and sounds like it takes WAY too long to get an appt. Thank you for a wonderful insightful forum. I only wish I could read more posts from people who have LS on their torso. I am praying my LS doesn’t spread to the genitals….

  56. anne47

    Thank you admin. I understand what you say about flooding on the internet but there are and have been many times in the past when both i and i would think many others cant sleep into the early hours for fretting and worrying about our condition,and sometimes a friendly forum of patients discussing their experiences help. I must admit that my gynea said no more than a pea sized amount and only on the areas that required. I had a great deal of discolouration along my vulval sides and no white and was told to ease off on the steroisd a little and use as least as possible until the colour subsided which it did and occasionally it will come back in other places ..It is all so confusing. I will ask again what they think. I will still be reading the forums where there is interaction with other patients though, as it makes you feel less alone with others that understand you. Thank you again. Anne

    1. Post
      Author
      admin

      Hello Anne 47. It is all confusing and forums are always at their best when they offer support, understanding and relief from isolation. There can never be a substitute for excellent treatment and information from a doctor who is knowledgeable and also compassionate and caring enough to have made sure that they are up to date with treatments and patient needs and have a dedicated passion for helping those with vulval skin conditions and a true intention to help every patient in their care in the best possible way. What is known as International Best Practice and Gold Standard. Some times a doctor is needed to ‘think outside the box’ and look at all options to help the patient. A doctor who achieves this is truly a treasure. The companionship and support of others in the same boat cannot be equalled either. Take care and be well.

  57. anne47

    I agree with you Admin…I just wish that in every area where we are all suffering there could be the doctors and consultants who had the time to think outside the box, though sadly it appears not.
    take care too.Anne

  58. S. Jim

    Need some Information, please. I am female and newly diagnosed by GYN. I am on my 10th day of treatment with the proper ointment. My question is will the white areas turn back to my true skin color? Aside from no burning, pain and itching, how will I know I am cured from this outbreak. My follow-up appointment GYN in in 5 weeks. My skin usually heals fast from scratches and cuts. Since I have never had LSA, what signs show that I am healing?

    1. Post
      Author
      admin

      Hello S.Jim welcome here and thank you for sharing.
      I understand from the doctors that in a high number of cases, the skin often returns to normal colour after an effective course of steroid treatment but no real indication from anyone about how long this will take. In my own case it was all back to normal colour after 3 months. A remission is usually considered to be a time when you have no symptoms but you could ask your GYN if they now consider you to be under control and out of the outbreak. It is always helpful to ask about how to manage repeat flares in symptoms and what to look for and how to treat with the ointment, if the symptoms return. One sign could be that the colour starts to return, Hope you will share with us again in five weeks, and let us know how you are getting on.

  59. geejay

    How glad am I to have found this site! At 55 having just had surgery for labial fusion as a result of LS [diagnosed 18 months ago and been treated by Dermatology consultant] I am waiting to see if my condition will be improved. I recognise the despair and fear that many on the forum have voiced and can only hope that the more we all share and discuss the better it will be for everyone.
    For the record I have probably had the condition since the birth of my first son, 27 years ago and have been tryng to sort out what the problem was ever since. Many doctors did not recognise the signs and I am so greatful to the female doctor I went to see who saId that she thought that it was LC and referred me to dermatology. I now only wash with Aqeous cream to prevent skin irritation and to assist rehydration, have never used biological powders/liquids and always wear cotton next to the skin
    I now wait to see if the surgery plus hormone cream is successful – am healing slowly [and uncomfortably!] – would welcome any help and advice from others who have had this procedure.

    1. Post
      Author
      admin

      Hello Geejay
      Thank you for sharing here. I hope all the treatment and surgery works out well. Is your dermatologist going to follow you up after the surgery has healed? My one piece of helpful info would be to make sure you have a follow up appointment to see her.
      Wishing you good healing.

  60. Jay

    Dear Admin,

    I was diagnosed with LS 4 months ago. I was given the usual treatment of Dermovate for 3 months and then on an “as needed” basis. Unfortunately, this was not enough for me and I now use a pea sized amount once to twice a week. As well as this, I have tried researching other things which might help. I now take vitamins E and C for healthy skin (hopefully helps with the splitting), I use E45 cream around the outside of the vulva to try and keep the skin supple and I take a probiotic yoghurt drink every day. The change has been terrific! Sex is now possible – there is absolutely no itching and the splitting is minimal. Maybe I am just lucky but just wanted to share something I have found helpful with others suffering from this unfortunate complaint. Many thanks for this site – it has been invaluable!

    1. Post
      Author
  61. S. Jim

    Dear Admin: Thanks so much for your reply. I feel like talking in this forum is like going to your confessor. Feel great after your reply. I have another appointment with my GYN tomorrow morning. A new round ulcerated lesion showed up on lower part of labia major on Saturday. I though I would wait it out for a few days to see if it would go away. Now four days later it seems to be changing for the worst. Can’t wait for my GYNs appointment tomorrow. Thanks to this site I have learned how to “self exam” and to report these changes to my doctor right away. This is a newly diagnosed LSA confirmed by biopsy for me. Trying to lear all I can. Thanks for the support

  62. geejay

    just a quick update from earlier comment as I had a letter from my surgeon this morning who has said that there are no signs to indicate that I have LS which means I am now in remission! Also biopsy completely clear and I should have follow up visit with dermatologist [as you also advised]. I want to let fellow sufferers know that there is hope and a solution to this condition but it may take time. Do not give up!!

  63. megan

    I am a 72 yr old woman who was diagnosed with LS one year ago. I have not been told by my Dr that I should see a gyno or have a biopsy. Instead I was given betnovate steroid cream, and a cream called diprobase. I am at times comfortable with this condition ie free of pain, but as I write this I am suffering extreme burning, I was told a pea size ammount of the steroid cream twice a day, this I do when I am suffering,but the cream seems to make me have a stinging burning sensation. I am about to make another appointed to see my doctor, but wonder if I am using the cream the way I should. It really helps knowing that there are other woman like me with LS.

    1. Post
      Author
      admin

      Hello Megan, welcome to the lichen sclerosus community here. I have sent you a private message today but wanted to say that creams can contain skin irritants, which are called parabens (preservatives). It may be worth asking your GP to try a steroid ointment instead. The same applies to some emollient creams and the Diprobase may be the culprit. Sometimes it takes a while to find a moisturiser that works well for you and your GP can prescribe other brands to help you. Nobody needs to be prescribing a ‘pea sized’ amount as a general rule for everyone. The doctor in charge of your case needs to show you, with a mirror or by touching the affected areas, where to put the steroid treatment, he/she needs to show you or demonstrate, how much to use, and where and how often and then needs to follow you up regularly until the symptoms are under control and then explain to you what maintenenace treatment is needed to keep everything under control. It is probably good to look at the BAD guidelines which are on this page at the top (The Basics page). When first diagnosed most dermatologists recommend a course of treatment (similar to when taking anti-biotics) rather than treating as needed. This will mean using the treatment over a month or six weeks or even three months, depending on the severity of each individual case. Hope this is helpful, do feedback and let us know how you got on.

      1. megan

        Hi admin, havent recieved your private message yet, but have read your comments on this forum. Thank you for giving me some guidence on the use of diprobase, I do think this was not helping my LS. There are times when my LS is comfortable to live with, but night time is always the worst when the soreness disturbs my sleep. also Is there anything I can shower in that will not make the condition worse. I do not feel that only water is enough to clean this area. My doctor told me to use plain soap that has no perfume added. At this time I am using my steroid cream at night, but only when I am uncomfortable with the LS. Thanks again for your support.

  64. Robyn

    Hey Everyone!

    So happy to have found this site, as up until today I was completely oblivious to this condition. For the past year I have had symptoms that have been continously getting worse. itching, burning, tears on my vulva during sex,burning when urine hit the skin and red, raw skin around my anus. My GYN thought I had yeast and gave me nystatin ointment and powder which only aggravated the condition. Well today I had an appt. with a new GYN and after I described everything to him, he examined me and told be he believed that all my symptoms pointed to LS. He took a biopsy and prescribed me clobetasol cream to use 3 x wk. He wants me to return in 2 weeks for a followup. I am very impressed that he recognized and wanted to begin immediate tx. I am desperate to have some relief! I am wondering, is it safe to continue sex while I am on tx? With the use of unscented lubricants, sex is tolerable.

    Thank you for your advice!
    Robyn

  65. Rachel

    I am new here. But my doctor told me to only use Ky-jelly as a lubricant. But now he says I have to clean myself up right after sex because the KY gets sticky. My boyfriend had his prostate removed so he doesn’t ejaculate, which is probably a little helpful for me. Doctor found my LS about a year ago and I use clobetasol. I still see gyn at least every 2 months.

    1. Post
      Author
      admin

      Hello, welcome to our community here. Doctors tend to suggest things that they like and know about but actually, you are the patient and you can choose whichever lubricant you like. There are dozens available and it may take time to choose the one you like the best but this can be your choice, you do not have to stay with KY if you do not wish to. It is good to hear that you are using clobetasol. Despite a lot of bad internet comments about clobetasol, it has a high success rate for treating lichen sclerosus. It is always comforting when your doctor can follow you up at regular intervals. It is lovely to hear from you.

    2. BB

      Rachel,

      I know this is an old post, but I wanted to warn you to be careful using lubricant if you have LS. Before we knew I had LS, my husband and I used “Wet” lube, which is silicone based. It greatly worsened–may have even caused–my condition. Thinking it was an allergy, I discontinued it and tried other lubes. They also threw me into severe itching for several days. The only thing we’ve tried which does not worsen my LS symptoms is natural virgin coconut oil. Drug stores often sell it or you can buy it on Amazon. It’s slick, smooth, and works very well.

      1. Post
        Author
        admin

        This problem is a common one. Thanks you for your helpful suggestions. With lubricants, it is a real trial and error situation, to find one that suits you personally. This community has found YES to be overwhelmingly successful, YES is an ‘ethical company’ unlike some of the companies who produce lubricants, its well worth a try. Lubricants and soothing creams are all a matter of trying things out, as it would never be possible to find a one size fits all cream or lubricant to suit everyone.

  66. Tracy

    I was diagnosed with LS 10 years ago. I was lucky because it was caught early before any damage was done. I have done very well over the years being on Clobetasol. It relieved any itching I had, and I only took it when I had flare-ups of itching. Lately though, I am experiencing thinning of my labial tissues which was not an issue before. I get little cuts above my clitoris and along the creases of my labia and this makes sex, especially oral sex, painful. I am perimenopausal, so I am wondering if this could be the cause of this new symptom or could it be the Clobetasol causing the thinning? Perhaps an HRT used topically could help?? I saw my doctor a few months ago and because I wasn’t in menopause yet, he didn’t think it was fluctuating hormones causing the thinning, and he didn’t see any flare up of my LS to explain it, so maybe it is just overuse of Clobetasol that is causing it?…Should I just try and take a break from it and see if that helps? I am just so frustrated because I don’t know what is exactly causing these tears…is it the LS itself, overuse of the Clobetasol, perimenopausal symptoms, or a combination?? Any ideas or suggestions would be very appreciated.

  67. cacran

    I have has the condition for a long long time, had it diagnosed about 10 years ago. My mum suffered from it too. Both of us have underactive thyroid (well that is before my mum died). After my initial diagnosis I was prescrobed Di[robase and Dermovate. I am not sure if either of them help but it is all I have. My condition is getting worse now and it is never far from my mind. The soreness is a constant reminder. My husband doesn’t seem to acknowledge the problem, thinks I have just gone off him. It is very depressing. I have heard that LS can turn cancerous. This is a bit scary as mine is never monitored by anyone, so how would I know if it was getting cancerous? I am going to gp tomorrow to ask if I can be refered to specialist again. I really hate having to nag them but I guess I will have to .

    1. Post
      Author
      admin

      Hello and welcome to our community here. If you are not sure that your present treatment is helping and if you still have unresolved symptoms and also if your GP is not ‘managing’ your case well, then a referral is not an unreasonable thing to ask for. Try to persuade your GP to refer you to a vulva clinic or to a dermatologist who runs a vulva clinic. It is not always easy to talk to husbands and partners about the difficulties of living with LS. Perhaps a few words of reassurance to him that you still care about him would be good to start off with. When you see the consultant, ask what signs you need to look for. Regular self-examination in good light with a magnifying mirror is a good way to make sure that you are able to recognise any changes that may need to be seen by a doctor. Sometimes the early signs of cancer can be quite subtle, but generally you need to examine the vulva from the pubic hairline down to the back passage/anus, once a month. You will be looking and feeling. Look for any changes in skin colour, either to very pale or darker, any non-healing lesions or sores and any lumps. You can find out about self-examination by watching this video. http://www.channel4embarrassingillnesses.com/video/how-to-check-yourself/how-to-check-your-vulva/

  68. tara2

    Hi. Just found this site. I am 50 and diagnosed with LS 13 years ago. Always presumed I had bad thrush till had dreadful experience. My whole labia swole up and the pain was excruciating. I took a taxi to a GP specialising(supposedly) in GYN. She said she thought I had herpes which was a great shock as I had been married for some time! Was put on strong anti virual drugs, anitbiotics and painkillers. Although this helped my whole body to calm down nothing changed. I visited another GP who straight away diagnosed LS but wanted a biopsy to rule out Vulval Cancer. THe biopsy was painful(don’t think fully anaethatised) but did confirm LS. This was done by a vulvar specialist who reassured me that with treatment ( diprosone cream), the symptoms would ease. Overall I have managed to control symptoms but wish more doctors had greater awareness of LS. Vulvar specialist said I had had LS for some years due to atrophy of my labia and whitening and thining of skin. On the other hand he said there was no need for it to continue affecting my life so badly, and that he would strive to get it under control. Just hearing those words was a turning point.

    Sadly I believe LS contributed greatly to the break up of my marriage as my former husband was not very understanding. I found sex painful and this led to great difficulties in our relationship.

    BUT since then I met a very understanding man and am back to enjoying a happy sex life. I now use Trimovate and wash with OILATUM shower gel which really soothes the itching and help keep LS under control.

    So take heart and coming from me that is someting after the years I suffered LS. Now it’s just a condition I live with. Keep yearly checks with new very understanding specialist and LS does not have that fearful grip onme anymore!

  69. Tracy44

    I was diagnosed with LS just after my son was born. I’ve been on Clobetasol for many years mostly just for occasional itching. I am perimenopausal at 44 (haven’t had a period in almost 4 months), and lately I have been experiencing thinning of my labial tissue as well. Is this a symptom of LS or possibly caused by the Clobetasol? I was using the Clobetasol on a couple of white spots and after a while that’s when the tears started. Then I thought I should use the Clobetasol on the tears, but I’ve heard Clobetasol can cause thinning of tissue…I feel like I’m damned if I do and I’m damned if I don’t. I’ve tried Emu oil, which helps somewhat, but I still get tears as soon as I have sex. The white spots are still there so I haven’t wanted to stop using the Clobetasol, though I am applying it less often but I’m still getting the tears. Do you have any advice on this?

  70. cacran

    Hi, I went to the GP who examined me and said that she could see it was getting worse but didn’t think anything looked to nasty. She has referred me to the same specialist who saw me last time so I will wait for my appointment.
    Thank you for your reply.

  71. Jane

    Hello
    I am quite new to this site and am finding it helpful but need some advice please. My GP diagnosed LS and i have been using the dermovate which is helping some areas but the labia which used to be quite large has now almost disappeared and I am now having increasing problems with the clitoris as it appears to be being pulled inside and is now also quite painful. Just above this area is a sore part that the cream does not seem to be helping and as I walk it feels like I have glass down there. I have been using the cream for almost a year now do you think it would have helped by now if it was going to work. I have also started getting a sudden severe pain on the left side sort of behind the labia. The pain is bad enough to make me stop what ever I am doing until it passes which is not long. I am confused what is LS and what might be something else. I will be seeing my GP again in a few weeks btu I am so afraid of going and being sent to hospital in case they do anything radicle just to be on the safe side. Sex is so painful as the outter skin tears but the pain is now also up inside the vagina. I feel very scared. Can LS cause problems up inside (I had a hysterectomy in my late 30s and am now 57). Thank you for any advice you can give.

    1. Post
      Author
      admin

      Hello Jane. Sorry to hear that you feel afraid. Unfortunately, this is very common and happens when things go out of control. I have written to you privately but I feel that you need to be referred to a good vulva consultant, either a dermatologist with an interest in vulva disease or to a vulva clinic. Your GP can find a list of vulva clinics at http://www.bssvd.org.
      LS is not known to give problems up inside. Very often the problems you describe arise from poor management and follow up by the GP. Now that you have some complications, your GP needs to hand you over to a knowledgeable consultant to review your treatment and offer you more information, advice and help, to get you feeling more comfortable and to see if the problems with your sex life can be addressed. I am very sad to say that poor management by GPs who are not trained sufficiently in vulva disease means that I have far too many women like you contacting the site. More awareness amongst GPs is vital for all who have this condition. Even though the majority of GPs are kind and helpful, there are some who need to learn when to refer patients on for expert advice. I hope you will feel able to ask for a referral and get further help.

  72. Mel

    I was diagnosed last week and am still totally shocked.

    I went to my GP a year ago because sex had become painful – there was a soreness and stinging on one side of the vagina entrance, which had got progressively worse over a period of about eighteen months.

    He did an examination, said it looked absolutely fine and took a swab, but nothing was found to be amiss. He mentioned that it could be vaginal dryness due to the menopause and prescribed Vagifem, which I have been using for the past year, but they have made no difference at all to the soreness.

    In desperation I went back and asked to be referred to a gynae as the soreness had got worse and the skin was very tender and splitting at the front part of the vulva – noo sex at all for the past 7-8 months. I was convinced it must be vaginal atrophy brought about by the menopause.

    I had a colposcopy examination and gynae said the cervix and inside of the vagina were absolutely fine and the Vagifem had done their job. However, what was going on outside on the vulva was another thing altogether and the area was very inflammed and some of the skin had actually fused together.

    He sent me away with a cortisone cream, but not one that I have seen anyone else being prescribed – it is called LOCOID – and I have to use it for the next six weeks and then go back again for another examination.

    Please, does it ever get better? I had not anticipated having to give up sex entirely in my mid- fifties. I had a hysterectomy nine years ago after having severe pain for a long time leading up to that and had just started to enjoy sex again.

    1. Post
      Author
      admin

      Hello and welcome to the community here. You ask if it ever gets better and if it is treated appropriately by a skilled doctor, then yes, it can and does get better. What happens is that LS is known to be a relapsing and remitting condition. When treatment is successful, long remissions can be achieved. Locoid appears to be a fairly non-potent steroid and the treatment of choice is Dermovate. Many dermatologists use Dermovate either in accordance with the BAD Guidelines or twice a day, every day for three months and then reduce gradually to a maintenace treatment. In a recent talk in the Nederlands, one doctor stated that he treats once a day, every day for two to three months, with Dermovate. It is not always about what you use, although Dermovate has around 70% success in men, women and children, it is about how you use it – how often, how much and often ointments are more effective than creams. Never say die, with your sex life, many women enjoy a good sex life once the symptoms are under control. I hope this helps, if you are not improving by the time your six weeks is up, ask your gynaecologist to review your treatment regime. Would be pleased for feedback and to hear how you get on.

      1. Mel

        Hello and thanks for the quick reply.

        I was a bit concerned about your comment regarding Locoid cream and have just re-read the leaflet that came with it.

        It say that corticosteroids come in various strengths – mild, moderate, potent and very potent and that Lucoid is classed as potent.

        Must say that I find it a bit confusing as to why gynae didn’t give me the Dermovate if this is the most commonly prescribed treatment, but unfortunately I am stuck with the Locoid now and just hope it works.

        Have had more of a sore and stinging feeling over the past day or two, which is a bit worrying, but nothing too bad. Perhaps it gets a bit worse before things start improving and I am only day six.

        1. Post
          Author
          admin

          Spent some time looking at various sites on the internet this afternoon after receiving your message. There are many disparities in information depending on which country in the world was giving the information but mostly I found Locoid described as a low to mid potency cream. I am sorry that you feel confused. There is no real substitute for the advice of your gynaecologist and if you are concerned, do phone his/her secretary or nurse and ask them to put your mind at rest. You could mention the sore stingy feeling as well and see what advice you are offered. Dermovate is described as being ‘super potent’ and often non-dermatologists are wary of prescrinbing it and this will be the personal belief and preference of the doctor involved. Sounds as though it is best to ask your gynaecologist.

  73. Kate

    I have just been diagnosed by a gynaecologist after 18 months of symptoms. During that time I was treated with HRT creams and pessaries in the mistaken belief that this was a menopausal problem. I have begun treatment with dermovate. I haven’t really discussed my diagnosis with my husband. I’m hoping the dermovate treatment will work and I will get back to enjoying sex. Our sex life has never stopped – it’s just become a lot less frequent. Apart from this site everything I have read is quite extreme. I have every reason to hope I will manage this condition. Do you think I really need to make my husband aware of something that may make him terrified to touch me? Has anyone else found this to be a dilemma?

  74. Post
    Author
    admin

    Hello Kate. I had just divorced and started a new relationship when my LS was diagnosed. My new partner was OK about it and was patient and kind at times when the symptoms made intimacy less available but it was still difficult to explain everything to him.so I have some understanding of your concerns. Dermovate can be very effective and I owe my own sex life to it, I doubt that I would have endured 16 years of living with LS and still be able to have sex, without the treatment with Dermovate. It may be a case of waiting for the right time to tell your husband and that time may not be right now. You could consider giving yourself time to come to terms with the new diagnosis yourself. and settle down on the treatment. Nothing about living with LS seems to be easy but there are so many courageous, wonderful women (and men) who find ways of dealing with all the challenges, your confidence and hope in managing this condition will sooner or later help you to find the right approach for telling your husband when the time is right. It is true that there are a lot of extreme cases on the internet. One thing I have found is that when people with extreme cases do find help, they do not often come back to a forum or message board and spread good news! Although I think we have a few here who have been kind enough to share their good news. I am one of them and have been for 16 years, I know how important it is to try to make a more balanced view of this condition to take some of the fear factor away for newly diagnosed people like you. There is life after a diagnosis of LS. I hope you will keep us posted on your progress.

  75. Kate

    Thank you for your kind words. I’ve opened up a dialogue with my husband. So onwards with treatment. Hit my fist GP problem…… My GP won’t provide a repeat prescription as “steroid cream shouldn’t be used long term” I’m confident your site has provided me With enough information to challenge that when I need to. Ive been prescribed cream, now I’m wondering is the greasier ointment a more preferable option, or does it not matter?

  76. Janet

    I was so happy to have found this site. I have suffered been a sufferer for about 15 years. I live in Spain but when I lived in the UK I was seen by the hospital every 6 months. I was prescribed Dermovate by my Consultant and it worked very well and attacks were rare.
    On my arrival in Spain after the initial examination they found a small lump and this was instantly removed. It was benign. I was then given a new cream called Protopic 0,1% Pomada. This I have to say was very affective for approx. 5 years but in the last year it did not seem to work and the itching and soreness came back. My sex life has been non existence for a number of years.
    I have just been for my yearly checkup at a clinic rather than the Hospital and they after listening to my concern and unhappiness changed my medication to Colpotrofin and Vagifem 10 micrograms. I have to use the latter first do 18 days one each day to be inserted into my vagina and then twice a week till finished. Then move onto the Colpotrofin. They have given me hope that this will also help with my sex life, and seemed surprised that I had not been given this treatment at the Hospital. Needless to say my Husband is over the moon…..! Can you please tell me if you have heard of this treatment and why I have not been given it before.

  77. Jenny

    I was diagnosed about two or three years ago. I had suffered since about 1990. I had constantly been given Canestan until I attended a Gynae clinic where I saw a dermatologist and obs & gynae man together. Not my least embarrassing moment. I too was prescribed Dermovate twice a day for 3 months and on an “as needed” basis thereafter. I was told to ignore the notes saying that it wasn’t to be used for long-term use. I probably use it about twice a week on average, making sure it covers the inaccessible areas. I was also prescribed Cetomacrogol to wash with and avoid all soaps, shampoos, E 45 or any other creams. I now wash entirely with the Cetomacrogol and only get slight soreness when I forget to use the Dermovate. I am immensely grateful to the specialists who saw me and, although they thought I had a severe problem, it is now manageable. That is the best one can hope for. The inner lips have disappeared and, short of a miracle, won’t be coming back. However, I manage. My husband gets rather glum but, with Vagifem, my sex life is just about alive. Until I was diagnosed, sex was inordinately painful and eye-watering, so it didn’t happen. That doesn’t make for a happy relationship. After the 3 months, things are possible and touching may not be a problem. Husbands do need to know about these problems. They need to know that it is not contagious or sexually transmitted. They told me that it was probably causing by tearing in childbirth. The Cetomacrogol seems to prevent athlete’s foot and heat rash as well, which is a nice. My doctor happily prescribes all these and other requirements and I come home from the chemist swinging an embarrassingly large bag of stuff. The specialists told me not to look at the internet, which of course I did and scared myself silly – but I consoled myself that my case wasn’t so bad.

    I hope this is of help to someone.

  78. rjs120

    Hello, I’m a 21 year old female who was diagnosed with LS almost a year ago. I’m so happy to have found this site as people try to understand what I go through but really can’t. Steroid creams work to control my itching but lately I have been worried about the reddish colour of my vulva. I was reading about drinking red clover tea and wondering if this has helped anyone? I can empathize with many comments on here as my three year relationship ended a lot due to this disease. He was really good about it but I didn’t know how to deal with the pain a lot of the time and starting not wanting to have sex at all. Consequently, intimacy problems developed and I lost a lot of my desire. I worry if I’m ever with him again or another guy that I will continue to have intimacy problems, any advice on that and how to reconnect intimately after going through this? As well I thought I should mention pelvic floor physical therapy to everyone. This has helped me and my fear of my vagina totally closing up. You can do it on your own and helps your vaginal muscles know how to relax and makes sex a bit easier

  79. Thomas

    Kate, I have been diagnosed with LS almost 10 years ago. I am very surprised that your GP won’t provide a repeat prescription as I have been undergoing treatment with Dermovate for 10 years and this was prescribed by my Dermatologist. I suggest to visit dermatologist and I know for a fact thet LS need to be controlled by 6 monthly visits to the doctor. I recently discovered shower gel from Laroche-Posay, Lipikar Syndet which helped me to control this terrible disease. It protects against hard water, soap, fragrance and paraben free gel and I noticed shrinking in the area affected by LS. Altogether with Dermovate the area looks almost normal. Try this and certainly go and visit your dermatologist and ask for referral to LS specialist. Good luck.

  80. Pam

    I am 64 and just found out that I had lichen. It appears my clitoris is buried under skin…and this happened rapidly. A few months ago I was normal. From what I have read, it will remain buried? This is so surreal to me. I had never heard of this disease before…no one had eve educated me on the subject.
    I went to my gyno here in the U.S., and he called it atrophy. So I looked online and read about ls. So I called him and he said yes, that is what I have. He prescribed crotamiton 30percent/betamt 70 percent. .1pcent. Apply every night for two weeks, then every other night for two weeks, the twice a week for two weeks, then once a week forever. Since it is a .1percent cream…..is this enough, do you think?????
    I am shocked at how quickly my clitoris was covered!,,!!! I still have feeling there, But I never expected something like that…
    ANYWAY, please let me know how much cream to put on the labia and clitoris area. I have been slathering it on generously each night.
    thank you for your help and advice.

  81. womanofspirit

    can anyone recommend a doctor in the U.S. (preferably in the Washington D.C. area) who has expertise in managing lichen sclerosus. I need someone knowledgeable about alternative treatments to clobetasol, as it is negatively affecting my mood.

  82. womanofspirit

    has anyone had experience using an alternative to clobetasol, such as tacrolimus or retinoids? I have active l.s. & clobetasol is negatively affecting my mood.

    1. Viviane

      I’ve had vulvar LS for the past 20+ years, most likely a stress reaction to a dreadful medical treatment I received for condyloma in my early 20s. I’ve been on clobetasol propionate all this time, but I don’t have a regular doctor anymore (it’s hard to get one where I live) and I am now experimenting with an alternative treatment so that I hopefully won’t have to rely on a doctor’s prescription anymore. I came up with this program myself, after doing some research online (and the herbalist I went to didn’t know about LS, so I just bought this stuff on my own). For a bit over a week now, I’ve been:
      – taking 1000mg of evening primrose oil capsules twice a day
      – rubbing the area 2-3 times a day with 3-4 drops of pure emu oil
      – rubbing the area a few times a day with a “revitalizing cream” that contains vitamin E and lecithin
      – eating every day a portion of probiotic yogurt mixed with 2 tablespoons of freshly ground flaxseed

      I managed to quit the clobetasol overnight and my new treatment keeps the itching under control at about 95% as the skin is gradually adapting and replenishing itself, and the white patches I had before are slowly fading away. Considering that I used to put the clobetasol 2-3 times a week, I think there is reason to believe that my skin will continue to improve during the next couple of weeks. I’m crossing my fingers on this one.

      N.B. Of course, different people react to different treatments, so the above might not work for everybody. There’s something called Perrin’s Cream Complete and also Sangre de Drago that have been used successfully by some people as an alternative to steroids.

  83. Pam

    The above is a generic formula prescription that was made for me. My gyno actually prescribed Eurax 30 and Valisone 70 per cent in a .1 per cent cream.
    I am angry that women are not educated in this the same way that we are educated to examine our breasts. I am so angry that no one told me to examine myself ESPECIALLY after menopause!!! I wil be educating the daughters in my family. I am angry that perhaps I could have saved my clitoris from being covered if I had only known about this disease. My gyno said I showed no serious scarring…..how can he say that when I later noticed it when I got home from his office? He also said this did not lead to cancer of the vulva….a.but I have read online that it is a slight possibility…so I need to continue to examine myself. How often do you think I should examine myself???
    I know I have a lot of questions in my last two comments. thank you for helping all of us. I did haves sex with my husband last night after trying to heal for 6 weeks. it was enjoyable…but I slathered my vulva with Astroglide morturizer and I use Replens in the vagina tp prevent friction.
    I am not completely healed yet from my sores..but it is getting better. BTW, my gyno is highly respected and very experienced. but no doctor knows everything and we know our bodies better than they do….so we must be proactive in our treatment.

  84. angel67

    Hi, I was diagnosed in October after symptoms arose only a few weeks prior to my doctors appointment. I was then referrered to a gynaecoligist who confirmed LS & continued with my treatment of Dermovate, which I had been on for 2 weeks. I have since returned to the gyny for a follow up appointment after 5 weeks, I was fine, well it hadn’t got any worse til the 4th week then my labia’s started to shrink & I am now having trouble opening my bowels, I bleed & find it uncomfortable too. My areas of white have increased & this was all within 1 week. When I visited gyny I was expecting a biopsy as they said I would have one if it hadn’t improved, bt I hav been put on an Oestrogen cream to use alongside the dermovate for 6 weeks til my next appointment. Then they will do a biopsy if there is no improvement. I am using laxatives to aid me passing motions. Its all been very scary the last week or so, I was kinda coming to terms with LS until it started taking away my parts!! & affecting other areas. I have also been given dermol lotion to wash with & use as soothing lotion in day, to not go swimming & to wash underwear in non-bio. I am having bad days & good days & sometimes just want to sit & cry, but it won’t beat me. I have done some exercise 2nite, I know cycling is usually advised to be avoided but I have been jogging for 10 minutes tonight, I hope I feel ok tomorrow & not sore, does anyone else manage jogging / running??

  85. Victoria

    Hello, I was diagnosed with LS about 3 mths ago after 2 1/2 years of being told it was thrush. I have struggled in getting it under control, I’m currently off work with a skin infection, the second in the last 6 weeks (previously off for 3 weeks) luckily work is very understanding but this isn’t easy to talk about. Dermovate seems to work the best for me although I’ve been given other potency creams to use but not to much effect & dermol antimicrobial wash/cream. At the moment I don’t really understand the condition, but I hope I’ll be able to have an intimate relationship with my partner again, and even wear a pair of jeans or do I need to start investing in lots of skirts? I don’t understand what causes a flair up either or is there no cause? Is there anything I can do to help myself, the redness, soreness & stinging is really awful. It also makes me anxious about going away with work or just for a day out incase it starts to hurt.

    1. Catherine

      Hi Victoria,

      I am new to the site but was also diagnosed 3 years ago, I am 41 and this is slowly dawning on me what I have and what I have to put up with for the rest of my life.
      Are you any wiser on what to use to help with the itching and sores. I have been given Dermovate but it is not helping much at all.
      Please can you offer any help?
      Catherine

  86. anne47

    Can anyone tell me what information they have received as to the difference with LS between the normal known white areas, itching and soreness, to the ruby red discoloration and navy lining or small bruising marks, that i seem to have surrounding my vagina and /or/ sometimes i have it along the sides. After a while with my medication the redness goes away but then returns at another point. Is this a more virilent LS or a slower moving LS. I have my symptoms under control with ,now,no white area and no soreness/itchiness as long as i keep up daily maintenance of the area. I did not have larges labias so have no fusing but have now got a completely covered clitoris, but the sensations are still there

  87. Pearlseeker

    I have the same symptoms. I left a lengthy description a few days ago, but have not heard from the admin. Maybe I did something wrong in submitting it?
    Anyway……I have just started treatment. Like you……my clitoris is covered. But I have sensation. So it could be worse.

    1. anne47

      Hi there Pearlseeker. Thank you for replying to me. I have been trying to find out which is the more virilant and can it be tackled differently, but to no avail. I think there is a lady on another sites message forum who also suffers like this so i might try there. I think you can email on here to admin one to one, i think the lady is very busy but you could try.
      take care Anne

    2. Post
      Author
  88. Louise

    Hi to anyone whose reading this , I’ve had LS for 12 years now ! I’m under a consultant at my local hospital who gives me yearly checks to make sure nothing bad is occurring , I use Demovate ointment (the cream made my symptoms worse ) .

    I started with constant itching around my perineum & I thought I had thrush but it wasn’t it was LS . Over the years it has spread all over but I manage my symptoms with the ointment, I just wanted to try & reassure people out there that you can get through this & my best advise would be if your not already under a specialist that knows all about this condition insist your GP refers you to one !

    I could go on forever about this but anyone wants to chat about LS then dont hessitate to reply

    Regards

    Louise

    Ps I’m 39 years old I’ve had this since 1999

    1. Maria

      I am 30 years old and was just diagnosed with LS last week by my Naturopathic Doctor after really having symptoms for years which was very thin skin that would split sometimes and constant itching but now I developed a painful lesion which urged me to make an appointment.

      The steroid gel I was prescribed hurt so much when applied and made my symptoms worse.
      My vagina looks like a war zone right now with lesions, a swollen clitoris and a huge white blister looking thing.
      I am waiting impatiently for my doctor to call me back.
      I am so sad right now and am worried about how this disease is going to affect my life. I have four young children to take care of and we recently moved far away from all of our family. My husband and I usually enjoy an active sex life.
      I live in a very small town and I am sure there are no specialists in LS around here… not to mention I am currently uninsured to boot.

      ~Maria

    2. Catherine

      Dear Louise,

      I would like to talk about your LS. I was diagnosed a few years ago but I have had the symptoms for many years. Now though it is quite intolerable with daily management and climbing of walls. I have Dermovate prescribed but it is of no use and I constantly itch my genitals and make them sore.
      Have you tried any alternative remedies to ease the symptoms?
      Catherine

  89. Ava

    Hello eveyone my daughter who is 8 has been dealing with with ls for over a year now. She has been using clobetasol for a year and it finally seems to be calming down. We also use protopic cream which we had to fight with the insurance company to get beacause its so expensive. We use that twice a day with the clobetasol at night. Im glad i found this site to know that other people are going through the same thing. This has been very hard on her.

  90. MarciaRicco

    Hi, I’m Marcia, I’m 43 years old, and I’m from Brazil.
    I am an acupuncturist and an esthetician and LS have 10 years. I was diagnosed by biopsy confirmation.
    After using steroids for several years I’m taking care of LS with the laser frequency and low-level laser acupuncture. The result will post for those interested. There is no itching, and skin is more pigmented. I’m also drinking lots of water to help in treatment. The lichen is that I have extragenital presentations.
    Spread to my breasts, chest, back, inner thigh, neck, abdomen …. I’ll be using hydro ozone therapy as a bactericide and fungicide to aid in treatment.
    It has a group of people here in Brazil I will be publicizing this site.

    1. Post
      Author
      admin

      Hello Marcia, welcome to the LS community here and thank you for sharing with us about your own case of LS. It is of interest to me, as this year, I was diagnosed as also having the extra-genital kind of LS and I find it much more challenging to get under control than the vulva kind. There is not very much information on extra-genital LS and so we would be pleased to hear from you as to how you get on with the treatments you are using. Kind wishes and Happy New Year. Fabia.

  91. Sue

    Hi my name is Sue and i am 60 , Iwas diagnosed with Ls about a year ago, I had been treated with HRT cream as my GP thought the soreness and itching were to do with my age. As the cream did not work he came up with LS he gave me a mild steriod cream and told me to apply twice a day until i felt better and then about once a week. Just before Christmas it all became unbearable I went back when he prescribed clobetsal cream and said i needed to go back in about 6 months. I have white patches on my skin, my clitorisis is so painful and sore. when I use the cream my skin turns blood red. I just dont know which way to turn im so frightened after reading stuff on the internet. I just dont want to appear to be a nusiance

    Sue

  92. Gal

    Hello Marcia, I too have LS of the torso: arms, breasts, abdomen, legs, back, inner and outer thighs, ankles/tops of feet. I live in southern California and would LOVE to know more about laser frequency and low-level laser acupuncture and whether or not it’s available in the U.S. I am almost 55 and post menopausal 10 years. I was diagnosed via visual inspection by a dermatologist and a skin biopsy. The itching is completely unbearable as is the ripping skin sensation all over my body. Miserable I am! I wish to hear more about homeopathic ways to treat this. Thank you and I will be watching for your results.

  93. Mumoffour

    Hello All,

    My daughter was diagnosed with LS at the age of 7 .She is now 12 and a half and finds all this excruciatingly embarassing.

    Do any of you have any tips as to how i can make sure that she does her treatments and checking?

    Mo4

    1. Post
      Author
      admin

      Hello Mo4. Its always hard to hear of another young one diagnosed with this. I expect we can all remember being 12 and finding everything about growing up and being a woman was very embarassing and having LS on the top of it is really challenging. I know so many good dermatologists who treat young girls and sometimes advice about future care and the importance of checking and using treatments comes best from the doctor. I can only suggest that you try to offer your daughter the view that every part of her body is important and that skin everywhere on the body needs to be cared for – not just make up and fun things but all of her skin. That in her case, becoming a woman means extra attention and checking and treating is a good thing, not just for her but for every woman. Sometimes it is not easy being a mum – I hope this helps a little.

  94. Mo

    Thank you for creating this site. I gave up looking for info along time ago because there wasn’t much about.
    I was diagnosed by biopsy 16 years ago, after suffering for a year with constant itching, split skin, pimple like spots etc… My GP at the time didn’t know what it was, he tried many creams and antihistamines. It took 6 months to see a specialist who immediately done a biopsy. I was given Dermovate which after some time got it under control, was then tried on milder steroid creams but it got worse each time, eventually back to Dermovate. Was seen at a special clinic every 3 months for 3yrs, eventually was given Dermovate ointment & Oil-a-tum plus for the bath, this eased the condition. I continued to attend the clinic every 6 months for the next 9 yrs, the last 3 yrs have been yearly. Unfortunately my husband was not understanding. Sex was painful and to me became not worth the suffering, I became celibate 12yrs ago. I am divorced and have not had another relationship. This condition has been a thorn in my side for many reasons, especially as very few people know of it and don’t understand how it interferes with your daily life. Just been to the clinic recently, and been told that I am unfortunately one of the rare cases, that the condition is permanently active and just has to be controlled. I am only 54 now and going into menopause, which I’m now told could make it worse not better! I know myself the condition always got worse the week before menstruation. I also have polycystic ovaries. Was gestational diabetic in last pregnancy. Was advised in my 20’s not to take the contraceptive pill as I had constant bleeding. I did take the pill after this advice and haemorrhaged, was found to be pregnant with twins and lost one.Had problems with the coil that I endured for 8yrs, before the doctors refused to allow me to have a coil again. Kept getting irritations with condoms, also tried the cap but the irritation got worse. Had my 3rd child at 35. Last pregnancy at 39 but due to complications lost the baby at 10 weeks. Was also diagnosed with Adenomyosis 2 yrs ago. Would be interesting to find out if others had similar conditions before or after diagnosis.

  95. spmc

    I joined this forum because in November 2011 I was diagnosed with LS and put on Betamethasone which is a cortisone cream, told to use it twice daily by the Gyn and told I need to see him every six months. When asked why I have this condition there was no answer same as the skin specialist who I also have to see every three months. I had itching all over but now after the treatment just have white patches on my body with the exception of my arm which has a faised purple patch on it. When told after a biopsy I sort of went into shock thinking what now. I look it up on the internet which sent me into further shock but now after reading everyone else that has it I feel so much better. Thanks so much for sites like this. I am 62 and just sorting out how to navigate around the internet so hope you will bear with me as I learn how to use a site like this one.

    1. Post
      Author
      admin

      Hello spmc. You are doing very well with learning how to navigate the internet. Nobody knows why lichen sclerosus happens and every doctor has their own way of either answering or avoiding the question of ‘why do I have this’ – it is still a mystery and there is a lot of speculation all over the internet. When I was diagnosed in 1994, I chose to make sure that I kept the discomfort under control and have a good quality of life and this is a good plan. One day, someone will find the answer for us but in the meantime, we need good doctors with lots of care and kindness and expertise to keep us comfortable and enable us to have a good quality of life. I also have this problem on my arms and leg. Be well spmc.

      1. spmc

        Here I am again, finally worked out how to get to this page since last I was on the site.I would appreciate some helpwith questions about my treatment. I have been on Eleuphrat cream o.o5% (Betamethasone DIP) which is a cortisone cream since diagnosed in November last year I was using it twice a day as per instructions by skin specialist. I had to go see the same specialist on Friday who then changed the creams because she said the body gets used to it. The specalist wrote me a new script with no instructions on how to use it. The new creams are Daivonex ( Calcipotriol 50 microgram) and Aristocort (Triamcinolone) which is a Topical cream. the chemist said use sparinly. The skin specialist said my L.S is doing ok but she keeps warning me it can turn cancerous so naturally I worry. I saw my own doctor of thirty two years yesterday and asked him about the creams. I was more worried by his response as he said with the Daivonex I have to stay out of the sun as it makes the skin easy to sunburn, it can also irratate the skin,and discoloure it and he needs to monitor the calcuim in my blood levels as this cream can reduce the calcuim, also it can interfere with kidney function so he will need to monitor that as well. Has anyone out there had similar issues with their creams? I get a bit sick of visiting doctors when I have tried all my life to be healthy with no smoking, drinking Alcohol, eating the right food and exercising. I have a lot of allergies to medication, Alcohol, chocolate. The only answers I got from the doctors is it could be genetic as I also have a inactive thyroid and as fot the L.S they say that could be genetis as my mother had psorisis. Is it just me or do the Doctors specialist just guess at things?

  96. Jade

    Hi, my name is Jade and I am 20 years old. I have recently been diagnosed with genital herpes which I find it hard to believe as my partner and I have never been intimate with anyone else. Over a month ago, I developed lumps, lesions and blisters ”below” and it was so painful to urinate and move about. Even now I am still am red around my vagina, have awful discharge and itching. At the time of the sores, my clitoris was completely swollen and I had pains in my lower abdomen. I also continually break out in rashes on my arms and lower back, and before this I never had any skin problems. Also, I have trouble with bowel movements usually ending in bleeding when I do go and I can still feel pressure when I urinate. Could I possibly have LS or are we just an unlucky couple?

    Please help, thank you!

    1. Post
      Author
      admin

      Hello Jade. Sorry to hear about all these problems. There are all sorts of things that can happen to the vulva that are not LS and it would be best to try to get medical help and a diagnosis of what is causing the symptoms, they may not all be related to herpes, but someone could explain more about it to you. There may be more than one thing going on in that area. You do not say who diagnosed the herpes? Sometimes vulval conditions are misdiagnosed as being herpes. The issues with herpes are not always about ‘catching’ it in the way you describe and there is an excellent support group, here in the UK, who may be able to help you http://www.herpes.org.uk/ Sadly, this site cannot tell you if you have LS or not but your GP can refer you to a dermatologist who runs a dedicated vulva clinic. A list of some clinics can be found at http://www.bssvd.org
      Anyone who has problems in this area of the body is ‘unlucky’ but in your case, there may be a lot of help for you and the possibility of getting well, it is all down to finding a good doctor who will make thorough examinations and tests and who is knowledgeable about vulval disease. In any event, you deserve to find the best of treatment so that you can live a normal happy life with your partner. Please come back and share with us, as to how you get on.

  97. Diana

    hi…. well my story is very similar to a lot of yours i’m 41 i started having symptoms of LS 12 years ago and spent 5 years been misdiagnosed with everything from herpes to bad case of thrush (which i do suffer from chronic thrush) and when i had done my own research and suggested i could have LS i was told i was too young to have it as it only effects older women !! luckily one Dr did listen to my sobbing rants that, “yes i was in pain, no i didn’t think i had herpes and i couldn’t live like this anymore” and quickly sent me to a wonderful gyno that listened and said that he suspected i was right i did have LS and to confirm this i had a vulvar biopsy
    i then started on a steroid cream which changed my life for the better!! i only use it now if i have a flare up but with the cream its under control within days i saw my gyno every year for four years till he thought it was dormant and i have had three wonderful years of a couple of flare ups and nothing much else …..until today
    itching back ..splits in skin… white patches and black spots ? but saw a great Dr who said yes LS is back and also diagnosed stress incontinence which is not helping and i feel is making it worse hopefully medication for this will help
    thanks for a great website i think nhs should prescribe this !!!

  98. emma

    My little girl has been suffering from LS for almost 4 years, she turns 6 in July. Her valva has almost sealed up completely and we have just finished 4 weeks of Dermovate and a week of Trimovate which has had no effect. We are due back to see the dermatologist in May and was wondering if there was anything i should be asking for.

    1. Post
      Author
      admin

      Hello Emma. Sorry to hear about your little girl. This is a lot to go through in one so young. I hear a lot of talks by the medical profession on LS in children. It seems that using a hormone cream can sometimes be successful in unsealing the labia and I think the treatment that was mentioned was Ovestin. It is possible that your dermatologist has tried the steroid route first to see if it would work and he/she may offer this treatment as the next thing to do. I am due to be at a medical talk in late May, where one of the UK’s experts on childhood LS will be speaking about it but this is going to be too late to be helpful to you. May seems such a long time to wait for another appointment. I wonder if your dermatologist could see your daughter sooner if the current treatment has failed and as her vulva is now almost completely sealed. I wonder if it is worth phoning the dermatologist’s secretary to see if the appointment can be brought forward? I am happy to mail you/talk to you one to one, if this would be helpful. Mail me at admin@lichensclerosus.org
      In any event, please update us if you are able to, and let us know how the appointment goes.

      1. emma

        Thought i would let u know the latest. We have been referred to gynaecologist. She has given us hormonal cream which we are trying for 2 weeks if no change then surgery might be the only answer.

  99. Katy

    Hi, my 8 year old daughter was just diagnosed with LS. We’ve got the next appointment in 2 weeks time and I am trying to absorb all the information, which is a little overwhelming. It seems that she had this condition for a few years and it was previously misdiagnosed as thrush, sore skin, blood in urine, etc. I feel absolutely awful about the amount of discomfort that she had over the years and it could’ve been relieved and helped.
    We were referred to see a consultant but I am such a pessimist generally and am worried whether LS can be relieved to a liveable with state? It’s still early days and hopefully she responds to the creams she was prescribed.

    1. Post
      Author
      admin

      Hello dear mum. Yes, LS can be relieved and there are many, many young women out there, who had LS as a child and have gone on to get married, have children and live good lives. I am told by the medical profession and several doctors that help and advise WLSS, that children do well on the conventional steroid treatment. A good dermatologist can work wonders with LS. Please keep in touch and share any good news.

    2. emma

      Hi Katy. My little girl is 6 in July and has LS for almost 4 years. I thought i would pass on a little tip i found works for the itching which is holding a cold damp flannel over the affected area. Hope this is of some use to you.

  100. Carolyn

    I have had a diagnosis for about 5 years, but I had had symptoms for much longer and strange rashes near by belly button, of all places. I am now getting more symptoms and am relieved to hear various people talk about the urinary tract infection symptoms. I thought I had something else on top of the LS. I now don’t get so much itching but the soreness and aching is really annoying. I have hit the menopause which I appreciate is probably contributing to my worsening symptoms. I have only ever seen my GP with the LS, it is interesting to hear of further referrals. I only knew you could be referred on recently from a throw away comment from another GP I saw.

    1. Post
      Author
      admin

      Hello – yes, it is possible to be referred, in fact, in the UK the LS Guidelines do suggest that a patient must be seen at least once by a Dermatologist. If you have urinary tract infections regularly, then there is a new breed of gynaecologist that you can see as well, they are called Urogynaecologists, which means they have also trained in urology. They are internationally available, a search via Google usually enables patients to find someone who works in this field. When LS comes into our lives, there is a tendency to think that every problem that comes along in the genital area is also LS, but the fact is that many things can happen at the same time in that area, as well as LS. It is always good to seek expert advice, after all this is your life and everyone is entitled to seek out treatment that enables the best quality of life! How sad that GPs still have those throw away comments, when they take oaths to preserve life and the qualithy of life! We need more GP training and education and much more health awareness equality – see http://www.vhac.org Please alway feel free to ask for help here.

  101. LizOnLine

    Information on this website is great. I have received conflicting information on clobetasol. After successful trreatment with this cream, can I stop using it immediately or do I have to wean myself off it gradually.

  102. Angela

    I posted in Sept when I was having a flare up that wasn’t responding to treatment. I am now more comfortable, but still have constant soreness and having to use Dermovate once or twice daily. I am being monitored by both GUM consultant, and a dermatologist. The dermatologist is concerned about the frequency of my dermovate use, says I might be experiencing reaction to it, and also thinks I have provoked vulvodynia, which she says, produces similar symptoms. I now have 4 options for treatment. I’d be grateful if you could point me in the right direction for some good information to help me make a decision: Option 1 stop using dermovate 3 weeks and have a punch biopsy to confirm diagnosis. Option 2. gradually switch to Protopic. Option 3 Stay as I am and be monitored regularly for side effects from steroid use. Option 4 (suggested by GUM consultant) is a 3 month trial of oestrogen therapy. Also, are there any UK specialists I might be able to see, who really understand this condition? I was initially diagnosed at my local vulval clinic, but the consultant discharged me after 3 visits and will not apparently see me for follow up.

  103. MOT

    Hi Angela

    I live in the UK and was referred to a specialist who deals in this condition. Her name is Dr Salley. She works in a clinic in Windsor. I have had LS since childhood but was only diagnosed properly 15 years ago. I went to see Dr Salley a couple of years ago when i had a huge flare up of LS which got progressively worse. It turns out I am now allergic to topical steriods. She was really helpful and for the first time I actually felt that I was talking with someone who really understood LS.

  104. Sophiesmum

    Hello, I was dx today after about 12 months of struggling with the itchiness and soreness. I have been given Cortisone cream by my female GP and she also took a vaginal swab for testing, which was excruciating!! I was dx with Breast Cancer in 2003 and had a Hysterctomy as well in 2007, so i’m not really sure what has caused me to develop this, but I’m so glad I found this site, as I have been on the internet all evening before coming in here, and scared myself with some of the stuff I read. I use Aqueaus cream for my Lymphoedma arm so will be using it instead of soap on my poor sore girly bits as well as the Cortisone cream which I have to use sparingly, not sure what sparingly is though,how will I know how mch to use?

  105. Heather

    I also have LS. It started on my genital and now I have it on alot of my body. I look like a burn victim and am often asked what happened. I would like to know more about Laser treaments and if it would help to repair the damage skin

  106. Ellie

    I am 59 years old and have finally been diagnosed with LS after several months of intense itching and pain, sore and splitting skin, burning on passing water and excrutiating pain and bleeding during bowel movments, which the doctor thought was piles but clearly isn’t. A swab test showed I had a strep infection in the skin which needed antibiotics to clear and was given Trimovate cream to use daily and pessaries to help anal soreness. There was some improvement but GP referred me to a gynaecologist who confirmed LS and has taken a biopsy. I have now been given Dermovate to use.
    Finding this forum has been a godsend: to read of others experience is very helpful – right now I am feeling very sad and the prospect of having to live with this for the rest of my days is very depressing. My relationship has been going through a difficult time for some time – I can’t really see a way that having LS is going to make it any easier to resolve things between us – I can’t even begin to think of how I am going to be able to explain the implications of all this.Not in a very happy place right now.

  107. sharzy

    Hi
    Im new here and was dx 3 weeks ago. The GP that saw me said I had LS and given
    some cream and said to look it up on the internet for info…….WHAT THE HECK ARE THEY THINKING…what a cruel way to find out about a disease. After looking online I was horrified and called the Gyno at the same office and told her she needed to see me now and explain this to me. After talking I did feel somewhat better but still had the horrible stories in my head from the other forums I had visited. Ive been using the clob for just 3 weeks and use it 1x aday and I do notice some color change close to front and not so much change to the vagina area…I hope this is normal..Today the doctor did a biopsy to confirm the LS. Now Im all nervous again….not sure what to think.. As of now I have no symptoms at all and didn’t even when I went to the Gyno except for the white patches. For me Id have to wonder if this isn’t a hormone thing. Mine all started with the hot flashes skipped periods and the only time I had symptoms was right after my period and it only lasted a few days and now since I haven’t had a period for 2 months Ive had no symptoms. Maybe Im just hopeful.
    I must say after reading all the stories here and reading the responses from the ADMIN. I feel more relaxed about this disease. Im very happy to have stumbled across this site.
    My heart goes out to all the women, children and men surfing from this!

  108. Wendy

    I am 65 and was diagnosed with LS a couple of weeks ago affecting only the vulva area. I
    was prescribed Dermovate cream which stopped the severe itching almost immediately but the soreness seems to have got much worse and spread to my inner thighs.
    I am a large lady and have suffered from chafing of my upper thighs in the past but this is so painful I can’t sit for long and walking is also painful, the only real relief is lying down.
    To add to the problem I’ve now run out of cream and the earliest GP appointment is a week away!
    I am also worried about developing cancer and because I am overweight and also have rhumatoid arthritis I am unable to check the area myself. I am a widow so can’t ask anyone else to check for blisters etc. I have tried to use a large mirror but that proved to be impossible – any suggestions

  109. Heather

    Just want to thank you for this wonderful site. I’ve suffered with LS since I was 47, I have now turned 60. I dip into this website when I feel low about the condition. It so helps to know I’m not alone.

    When I was initially diagnosed I was given a three part treatment of steroids, which really didn’t do much at all. Eventually my GP prescribed Synlar 1:4 for everyday treatment and full strength Sylar for when I was climbing the wall! I found washing with aqueous cream and moisturising with Epiderm helps and I use Vagifem twice a week. All of this has made the condition ‘manageable’.

    I would just like to mention though that I was discharged by the Consultant quite soon after diagnosis and I’ve never been offered a biopsy. I was lucky that my GP was wonderfully understanding, it was her that prescribed Synalar. Unfortunately she has now left the practice. I do however, still get checked out at the surgery annually.

    Many thanks again for your wonderful website.

    1. Mary

      Hi Heather, l have just come across this website and am totally amazed how many women suffer from LS. l was diagnosed six months ago just before my 60th birthday. l’ve been prescribed an emollient wash which helps and a course of steroid cream of which l am now on my second course as it doesn’t appear to be helping with the constant heat/burning/itch. l feel really down at times and don’t know if l will ever get any respite from it. My husband is being so supportive and kind about the whole thing, which is just as well because any attempt at intercourse is nigh on impossible due to the pain l experience. l am due to visit my GP soon so l will discuss the Synalar treatment because l’m concerned about the long term use of such a potent steroid.
      This a wonderful website as you say and its such a relief to know that l’m not alone in suffering with this awful condition.

      1. Heather

        Hello Mary

        Yes, its amazing how many sufferers there are. I just couldn’t believe it when I first looked at this site. Its been a comfort in a way to know it not just me, that I’m not a ‘freak’ . Its a truly horrible condition. I do find a get respite sometimes, but then in times of stress it comes back with a vengence!

        Apparently, I read on this site sometime ago there is a link between thryroid conditions and LS. I have an under-active thryoid. Is it the same for you?

        I agree, trying to maintain a sex life is a nightmare. I have found vagifem useful and I use lots and lots of Epiderm as a moisturiser several times a day, this helps, but I still find sex an ordeal rather than a pleasure.

        I feel really sorry for young sufferers, that really seems very unfair.
        Let me know how you are getting on, its lovely to hear from you.

  110. Catherine

    Dear Heather,

    It is so nice to read your notes, I am 41 and was diagnosed 3 years ago with LS, I get checked by the Dermatology consultant each year and so far no nasties but the suffering is at times intolerable. I have Dermovate to use but it is fairly useless. My head is full of questions of how to manage and keep the wall climbing symptoms at bay.

    Can you help at all?

    Many thanks

    Cathy

    1. Heather

      Hi Cathy

      Yes, its truly horrible isn’t it. I didn’t find Dermovate very helpful either. The only treatment that has helped me has been the Synalar. Its pretty powerful stuff. I use the diluted 1:4 for maintenance and the full strength for when I’m climbing the walls.

      I’ve found aqueous cream useful for washing and also for just plastering on when the itchy/burning is unbearable, it soothes! Epiderm is good (quite expensive, but well worth it). I use it several times a day for moisturisng the area & also vagifem, you need a prescription from yr doctor for that.

      The very best advice is to keep reading this site for up to date treatments & advice and always fellow sufferers to get in touch with .

      Do let me know how you get on, lovely to hear from you. x

  111. Maria

    Hello,

    My mom has been living with lichen sclerosus for about 20 years. It is AWFUL watching her go through this. So many medications have NOT worked for her. She also has developed spasms once in awhile (rarely, but it happens) and makes it impossible for her to go about her day. That usually goes away. it gets worse when shes stressed out. Some days are better then others (now being some of the better days). She has been using some homeopathic cream *maybe EMU oil* for a little while and she seems to be doing much better…. But it really changes very frequently.

    For the last couple days I have had itching down there. Not intense, but def noticeable. I don’t have/see any other symptoms but I have heard multiple times for I am more prone to getting this b/c it is very genetic.

    How genetic is this really and when should I go and see a Gyno about this? Should I wait a couple weeks and see if it gets better/or worse?

    1. LouiseD

      Hi, I was dx with vulvar LS a few days ago by my gynecologyst. She said this is an hereditary condition. So I checked with my mother and found out that she has a skin condition on the torso which was never diagnosed. She has just learned to live with it, she stopped using soap and washes her clothes only with water, no more detergent, as it makes her very itchy. My gyn prescribed the clobetasol ointment to be used daily for a week and twice a week thereafter for life. I have been using it for 4 days and already see a difference. She also prescribed a drowsy antihistamine to help me sleep while the LS flares up. All of that to say that if you are itchy down there, I would advise, from my experience, to consult with a Gyno asap as I had been itchy for quite some time and do believe that this is genetic. Best of luck.

      1. Post
        Author
        admin

        The international medical community are still debating on what causes LS. Hereditary may be a factor but may not be the main cause. Not every one who has LS has another family member with it or with any connection at all. We are still waiting for the doctors to do research to find out what the actual cause is. The latest theories seem to be that more than one thing causes it. We will have to wait and see. We all have our ideas and beliefs about it, at the end of the day, making sure to keep it under control to ensure the best quality of life, is the most important thing. Be well and thanks for sharing here.

  112. cynthia

    Hi
    Just been diagnosed with LS of vulva today after having a biopsy & Fentons procedure last Friday.
    When the consultant first examined me he couldn’t believe that noone had picked it up earlier!!
    I had only been referred finally because my last smear test was an absolute nightmare & absolutely impossible to carry out. Up until then I had been treated for thrush or advised to use vagifem.
    I am 61 & had started to feel I was in a situation for which there was no solution & I would have to just put up with it.
    I am so grateful to a caring gyny who recognised it immediately.
    Really glad to have found this site as I feel very much in the dark at present.
    Have been told I will need steroid treatment but await appointment with Gyny next Tuesday.

  113. angel67

    Hi, just an update, I hav now had a biopsy on a skin tag, wide local excision is its surgical term, took me 3 weeks to be able to sit properly due to infection. But positively no cancers present. I’ve now been taken off the pill and have had the mirena coil fitted plus I am now on HRT to increase my Oestrogen which has helped with dryness & has since helped renew my sex life after 6 months of my husband being very patient & very understanding. I am now managing my LS, still struggling with constipation, & desperately trying to manage that through diet. Am going away in August to Egypt, will be very hot, am used to jumping in the pool but have been told to avoid swimming pools!! Does anyone use pools abroad or is the sea safer to use, its my 1st holiday since been diagnosed with LS and am a little anxious! Thanx to anyone who can advise me 🙂

    1. Post
      Author
      admin

      This is a common question, asked by a lot of people. Over the years I have asked the doctors for some kind of advice on this. Some say they feel it would be a shame to stop swimming and if the LS is under control they see no reason not to try it, others are so cautious they advise against it. Nobody, however, seems to tell us what exactly will happen if we do swim and what the likely outcome will be! Some women find that chlorine irritates their skin.The popular answer from most doctors is not to swim anywhere if you have open fissures or tears, or active symptoms, which seems to be common sense. As you have only just had surgery then you need to make sure that you are completely healed. If your doctor has told you to avoid pools, then it might be good to ask why? Use a barrier before swimming, something like Vaseline, to protect the skin and after swimming, make sure you rinse the vulva area well with clean water and apply plenty of your favourite moisturiser or Vaseline. Maybe a trial session in a local UK pool to test things out could be helpful, if you have a reaction then you will not be dealing with it on holiday and you will know whether you are able to risk swimming or not. Sadly, everything in life involves risk of some kind. It helps if there are some guidelines to help us make choices but LS is an area of health where everyone reacts differently and guidelines are not available, doctors will advise against swimming, rather than risking being sued if any problems arise. Often taking a chance is the only way to find out. If you are really anxioius then perhaps paddling up to the knees is your safest bet. I have been able to swim in pools and the sea with no ill effect. I wish there was more to offer you and nothing about having LS is easy! You are doing very well. Perhaps others will comment too. In any event, whatever you choose to do, choose to enjoy your holiday in Egypt, (in hot weather, loose cotton underwear and clothing may also help.) We would love to hear how you get on, so do come back and let us know.

      1. Angel67

        Many thanks for your answers, as I am sore at the moment I will steer clear of the pool but if I feel ok before my holiday I’ll try swimming to see what or if anything happens, then as you say at least I’ll be more prepared for my holiday, I would imagine salt sea water would be ok as I was told to use salt water to bathe my infection. When I get back I’ll let you know how I’ve got on, thank you, this forum is great, its helped a lot 🙂

        1. Hazel

          I’m 60+ and had suffered from intermittent vulva soreness and itching since a tear in childbirth in 1979, biopsied and treated with Dermovate in 2006. Now it’s returned far worse around the vulva hairline, drat! I’m interested in Angel’s comment about using salt water to ease the pain. This has worked in the past but not this time – it’s made the soreness much worse.
          I’ve just found this helpful site while searching for alternative therapies to ease the itching, not found many herbal or complementaries recommended, other than the laser bit. I’ve heard of Lush Dream Cream working for psoriasis…
          might be worth a try?!

  114. Lisa

    I was diagnosed. 5 yrs ago. Only now am I having a relapse. It is constantly burning, extremely itchy and even using my dermovate is really burning me. I have quite a lot of shrinkage in my skin.. I have no labia minora . Usually if I felt a prickling sensation, I’d use my steroid cream but it’s just not working this time. I am weaning off of antidepressants (sertraline) and wonder if this is anything to do with it. Interestingly, when I was pregnant… I had absolutely no symptoms, no itching or soreness.

  115. Jane

    Wow, this is truly unbelievable to hear how many women have this. I am 57 and have been “dealing” with this for 2 years now. My GYN gave me the preliminary diagnosis, but sent me to an oncology GYN just as a precaution to biopsy and rule out cancer, though, he seemed pretty confident that is was LS, which it is.

    I started using the Clobetasol last year after the biopsy, and he also gave me a compound of testosterone and vaseline to use inbetween, it did improve, but when I get the flare-ups, it seems to get worse with each flare-up.

    I have been searching the internet to see if there are specialists that can guide you relative to other alternatives to relieve the itching and tears. My regular gynecologist has also given me Estrace and told me to use that and Replens alternately because between menopausal dryness and the LS, sex with my husband is very uncomfortable and I bleed everytime. Then I wait until it heals before I do anything again. Needless to say, it’s not fun, and the future seems very bleak at this point for improvement. The clitoris seems to be disappearing behind the folds and I assume that’s because of the LS as well.

    I did see on another website that some women have tried alternative solutions, such as increasing their intake of B3 because of the autoimmune theory. I also have taken synthroid for years for my thyroid. They also suggested taking Tumeric, and using tea tree oil, coconut oil etc, and another cream that starts with a P – I can’t remember. They also say that spicy foods seems to make it worse. Just curious if you have heard of any of the other alternative solutions that help. Thanks for being a resource to all of us who have this horrible condition.

    1. Katrina

      Wow. I was diagnosed a year ago by a female doctor but had the symptoms for two years before that that my then male doctor didn’t diagnose. I am a quite person and haven’t shared much with my doctor except the cream helps but recently it has been different. Sudden rips. Clitoris disappearing. Cream helps the tender skin but just recently have noticed a brown discharge from my clitoris. Can’t find anything on the net about that. Has anyone had this problem?

      1. Katrina

        Add in to my first comment That is the steroid cream I was given by my doctor and confirmed by my gynecologist with varying instructions on it’s use. I have to say. I have erred on using it as less as possible. But now I wonder if I should use it every day like moisturizer for my body.

  116. Susanne

    Thankfully, I have found this website. After being diagnosed with LS almost 6 weeks ago, I am still unable to sit comfortably & find wearing underwear irritating. During this time, I have been using Clobetasol which has not given me the relief which I think I should have had by now. This past week, I had an appointment with a gynecologist who recommended staying on the Clobetasol, but also recommended trying to wean off to every 3 or 4 days while using Premarin between. I see my original doctor who diagnosed me in another week but not sure she knows what to do for me because of my poor response. How long can Clobetasol be used safely?

    Also, my skin on my whole body has this very prickly, sore feeling. Movement aggravates all over & my skin feels like it is being stretched, for instance when I bend to reach or pick up something. I have not read anything which mentions this. Has anyone had this symptom?

    I have another auto-immune disease which has many frustrating side effects & in some moments, wonder how I am going to deal with all of this. LS is not something which one feels comfortable sharing with ‘everyone’ but my symptoms are noticeable (e.g. not being able to sit). Does anyone have any coping strategies which might help?

    Thanks in advance for any suggestions & informations.

  117. RANJAN BASAK

    Respected Sir/Madam,
    I Ranjan Basak,from: kolkata,West Bengal,India, suffering from Genital Lichenslerosus identified on August 2011 and treatment is going by the supervision of Mumbai Municipality Hospital`s Doctor. Nowadays I feel pain which becomes me weak in physically as well as mentally.I am using Momte cream ( Mometasone Furate Cream IP) in morning and Tacroz ointment ( Tacrolimus Ointment 0.03% w/w) in night and taking Folic Acid Tablet once in a day and FOLITRAX 7.5 Tablet once in a week as per doctor`s suggestion. Kindly suggest me from relief from pain and disease as well. I am Only son of my family, age :42 years,Unmarried, willing to marry. With Regards.
    From : Ranjan Basak,kolkata,West Bengal,India

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        1. Post
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  118. Suzanne

    SO please to have found your site. I was diagnosed with LS in March 2012 and it was confirmed with a biopsy the same month. The doctor at the hospital was brilliant and put my mind at rest concerning vulva cancer. I was given steroid cream to use for 3 months to hit the LS hard and get it under control, which seems to have happened although the itching has again started up yesterday. The advice I was given for when LS re-occurred was to use the steroid cream for a day and if this did not work use for 2 weeks daily. If still no improvement go back to my doctor. What nobody told me about was shrinkage of the vula and disappearance of the clitoris, this will obviously have an effect on our sex life (which at the moment is pretty non existant due to my fear of starting the LS off again!). My question is: can you use KY gel or anything similar to this or do lubricants make the LS worse? I am 62 and have been having ‘hot flushes’ since I was 47 with no sign of them abating, so not much natural lubricant is produced by my body.

    1. Blue Lady

      Hi Suzanne. I was visually diagnosed just before Christmas and I’ve asked for a biopsy (which is happening tomorrow) to confirm the diagnosis. One of my inner lips has disappeared completely and my clitoris is almost impossible to find. I have gone off sex, possibly because I’m frightened of the pain. So dry. I’ve used various lubes but have now gone back to good old trusty KY Jelly. However, this dries out really quickly and although the packaging says to reactivate with water, stopping a few minutes into sex to spray with water isn’t really acceptable. i’ve just ordered yes yes yes (oil based), hasn’t arrived yet but I’ve read really good reviews. Might be worth a try. I’ve also bought a couple of sex-toys (nothing major) to ‘use’ on my hubby just to keep him happy, which in turn makes me happy and takes the pressure (which we all shouldn’t feel) off me a bit. I absolutely hate having this.

  119. GiGi

    Hello,
    This is my first message, the reason being until I found this site today I had never heard of Lichen Sclerosus. More scary is the fact that I have just realised why my female ‘bits’ have disappeared, why I itch and why my skin is splitting. I am 53 and have been like this for about 5 years and put it down to the menopause and loss if hormones. I have just put Savlon cream on to try and ease the soreness. Sex has been non existant for a good 3-4 years and I am very upset. If I hadn’t put a basic search in Google for ‘shrinking labia’ I would never have found this site.
    I havn’t raised this with my GP as I thought it was just an unfortunate part of aging. I feel such a fool but also angry that only a week ago when I had my smear test the nurse never said a word about what I now know is not what every 50+ womens bits should look like!!!!!
    I am now also very afraid.

    1. Blue Lady

      Hi GiGi. I was told it was vaginal atrophy. (Shrinking bits) and it wasn’t my gp who thought of LS – it was me. But I’ve asked for the biopsy to confirm one way or another, and not just rely on the visual exam they did. I used dermovate at first. I’ve weaned myself off this, but I do use Epaderm after every wee, plus Vagifem every 3 days, plus a smidge of Ouvestin cream. I too am afraid. I suspect all of us are, but I take great comfort in the fact that there are lots of women on this forum that have had this condition for years and years. I’m so glad we’ve got each other here.

  120. jes

    I have had LS for 5 years now it started after chemo for breast cancer, I’m sure that caused it. I can cope with the itching and sores but sex is so painful now, is this because I am dry, it feels very sore deep in my vigina and I can’t relax so it makes it worse. As soon as I think about having sex I just tense up. I am 57 and ahve been married for 29 years. Has this happened to anyone else?

  121. RM

    Hi

    Glad to have found this website, I’m really in a bit of a pickle.

    I’m 24 and got diagnosed with LS about 6 months ago when I went to the GP complaining of painful sex. After using steroids for 3 months and emolient to wash with the pain had still not stopped (this was really my only symptom, other than how I looked down there…which apparently made it obvious it was LS!)

    My specialist has since said she thinks it may be vulvodynia that is causing the pain but in the last 2 months I’ve started to develop other symptoms which make me believe more and more that she was right with the original LS diagnosis. I’m itchy, sore, cracked skin, pain going to the toilet, even feels slightly bruised. Sex is so painful I’ve been pretty much celibate for 5 months.

    Being in a fairly new relationship this has been far from ideal. My boyfriend is wonderfully supportive but I really don’t know how much longer I can carry on having a relationship with this situation. I feel completely alien from sex, my self confidence has plummeted and the seeming lack of any real cure makes me worry I’ll be like this forever.

    Please help!

    1. Post
      Author
      admin

      Hello Rosie, welcome to the lichen sclerosus community. One of the biggest problems in the past few years with LS has been the theorising of doctors that LS causes pain. There are certain circumstances of LS that can make some things painful however, vulvodynia pain is different and I think I am right in saying that there is no real evidence to prove that LS causes vulvodynia (which simply means ‘unexplained vulval pain’). I wish I could stop this because when it is the belief of a doctor that LS is a pain syndrome it muddies the boundaries. It totally delays a diagnosis of vulvodynia, which needs different treatment to LS. However, LS and vulvodynia can co-exist together. You ask for help…..you need to ask your specialist to offer you treatment for both the LS and the vulodynia and even though a cure may not be possible, getting well and enjoying long remissions can be something to hope for. Feelings of alienation from sex and losing femininity and confidence are classic symptoms that result from properly treated LS and vulvodynia. Vulvodynia needs a multi-focal approach. Consider, if you are in the UK and can travel to Birmingham, attending the Vulval Pain Society’s workshop which is in September http://www.vulvalpainsociety.org Do think about seeing a good therapist to explore how you can find yourself again and get these feelings some help before they upset life any more than they are already. I have a link here on the site, to Mary Clegg, who has a tender and very special approach. I also have the name of another therapist who you may also find helpful – email me if you want her details. The other thing I would like to ask of you (not compulsory but would be helpful) is to post here again with your progress. Right now, you would love to find a message here from someone just like you who had the same problem as you have but is now well and having a good life. If this happens for you, please share that good news here.

  122. Maureen

    Hi, I have had LS for about 12 years and have never really understood how or why I contracted it. I’m feeling a bit isolated at the moment because I’m having a difficult time again with it and just want to talk to someone who understands!!

    Thinking about it now I wonder if it goes back as far as when I had a cathetar after a ceasarian nearly 26 years ago, which caused severe Urethritis. This eventually cleared up after about a year but then about 12 years ago it seemed to flare up again for no apparent reason, requiring four operations to stretch the urethra. Even since then I seem to have had LS. I’ve had the usual dermovate cream, llignocaine cream (which is a local anesthetic) to relieve the pain when passing water, and an oestrogen cream to use internally – none of which have helped particularly. Sex became impossible quite a few years ago so I was given a set of vaginal dilators to use with the aid of some KY jelly – talk about taking any spontaneity out of it! and they didn’t really help that much as I seemed to have pain inside as well as the problem with tearing and pain outside. I then had surgery to cut away a “V” section of scar tissue (I was told that each time the skin tears and heals it sets up scar tissue which is thicker and does not have the flexibility and stretch of normal skin) which was supposed to help so that sex was not so painful, but it didn’t – it just resulted in creating more scar tissue, which they did say was a possibility, but worth a try! I’m 57 years old and it must now be 4/5 years since we have had sex. I’m too afraid to try because it’s so painful, and I’m afraid of failing yet again. My husband is very understanding, but I feel totally useless as a woman, embarrassed, ashamed, and devastated by the whole situation. Over the past six months or so the LS seems to have got worse again making it very uncomfortable to sit down at times – I feel “swollen” and tender – that’s the only way I can describe it. Sometime the itching is really severe and passing water is excruitiating to the point of not being able to go. I’ve been back to my GP (which promoted me to check out your website) and she has again given me dermovate and a milder steriod to use following the course of dermovate, hopefully it will give some relief and help heal the split and painful skin. I guess I just needed to tell someone how I feel, who shares this awful condition, I’ve never discussed it before as it is such a personal and embarrassing subject. Sorry for being so miserable about it.

    Your comment is awaiting moderation.

    Reply

    1. jes

      Hi Maureen,
      Just to let you know I totally understand and some times you just need to get it off your chest to someone in the same boat. I can’t offer any real solution to it but I find washing with aquious (nor sure about the spelling) cream and getting lots of air to it helps me. Hope you manage to find some relief,
      Take care
      JES

    2. Annie B

      Hi Maureen
      I’m 57 years old as well and I understand totally what you are going through. It makes me feel less of a woman too and dirty as well which I know is totally silly but I can’t help feeling this. My husband thinks I am being silly and says just ignore it but it’s not that easy.
      Anyway just wanted you to know you are not alone.
      Annie

  123. Annie

    I have just found this marvellous website after only discovering 2 days ago that I have LS. I at least don’t feel such a fraud now. I thought I was going mad because the itching wouldn’t go and thought it was just thrush, which is what the previous doctor I went to said. It’s a bit scary to think there is no cure for it but having acid reflux and depression alreay you would think I am used to things not being cured! It’s good to just know there are other people out there who understand.

  124. Annie B

    I have to say I am very glad I have found this website. My husband’s comments to me make me doubt myself and whether I am making too much fuss. I finally plucked up the courage to go to the doctors after the itching was driving me crazy – I thought it was something I was doing or had done. Anyway last time I went to the doctors I was told it was thrush but the itching didn’t get any better. Got to see a different doctor this time and she told me it was LS. The relief in some ways was enourmous because I thought I was going mad. My husband just said I make to much of things and that I should just ignore it!

  125. Neta Moss

    I am a 66 year old female who was diagnosed in March of this year with LS. I had never heard of this disease before that. I cried for weeks. It really is an embrassing disease. The very few family members I have mentioned this to, look at me and say, I never heard of that, is it contagious? Boy, that is encouraging. Finally my gp said don’t tell people. So basically all that I have learned about this disease is from the internet & forums such as this. My gp is a good doctor, but I have some concerns about how some of my treatment has been handled. At first I was put on different creams for the irritation & itching. When that was better, I had a biopsy, which confirmed LS. I was given a steriod cream, which helps, but I, like many others, have read such negative comments about steriod creams, I only use when all else fails. I discovered a soap made from mangosteens, which I ordered & have had great results from using. No burning after bathing & my skin feels much better. Even wash my hair with it. These may not work for everyone, but I have prayed about this situation for sometime and know that finding these 2 products was an answer to my prayer. I have recently noticed the LS is around my waist and I am going to see a dermatologist soon as to what long term treatment he recommends. I have never had thyroid problems, even though my mother did & one of my daughters has, but neither of them has or had LS. It would be interesting to compare a number of these patients with similar problems, who have LS, to see what could possibly be similar in nature. This is truly a devastating disease that is never very far from your mind. It is sad to know that you have to go through each day uncomfortable & worrying about what’s going to happen next to your private parts!!!!! I got off my antidepressant last year after 7 years of Effexor XL. Sometimes I think I should have stayed on it. Thanks for letting me go on about this as most people don’t want to hear about your problems with this disease and its good to know there are others who are anxious to learn from your experiences.

  126. De

    I was finally diagnose properly after 5-6 years of searching and 7 doctors later. I was informed I had vulvar cancer 4 years ago as I was pressured to hurry and have surgery my head was spinning. I was diagnosed with stage 4 vulvar cancer one week later I was having surgery. A very scary time for me I was embarrassed to tell my kids about my condition knowing there will be a lot of questions. My other half watched the transformation and was getting very upset at all the different things doctors told me. First they said it looks like a std, then I was allergic to my underware , then it was my bath gels, then laundry soap, then it was my tampons I went through so much it then turned to purple in color I was told it was a birthmark. I said I’m sure I would of noticed it long ago I’m 35 at that time. I started to notice that I have 2 red marks on my vagina and called my doctor she called me in and inform me I have LS I was scared the cancer is back I’m considering having a bio. to make sure this is what I have. The medication has helped but I’m just starting the medication and now my period just started which usually irrates me. So I have not been doing my medication due to this. I’m keeping my fingers crossed for no cancer again.

    1. Post
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      admin

      Welcome here, De, to our community. You are not the first woman I have heard from who has been diagnosed with vulva/vulvar cancer and then diagnosed with LS some time later. I do so hope that you will be clear and hope that you will revisit the site and let us know how you are getting on.

  127. Kathleen M

    Hi, I posted sometime back. In those days I was in deep depression about my LS. There was so much I did not understand. Even when over the fear of using Clobetasol there were the questions of how much to use, were to apply, how often should I use it, and on and on. I was in bad shape. Then I found this site and read the Basics. From this information I was better able to address the issue with my GYN. Slowly I found the answers. I think too slowly and I experienced shrinkage of my labia and narrowing of my vagina. But, now I can report that I seem to have stabilized. Life is looking better these days. I went back and re-read the Basics. And, the one line hit me that when you are getting better you can forget to come back to the website and report the good news to others that there can be light at the long tunnel. I hope I can show you that light. So keep up the routine that your doctor and you say will work for you. And if not getting better, keep communicating with your doctor or find one that will listen and work with you. I am hopeful these days.

    1. Post
      Author
      admin

      Hello Kathleen.
      Welcome back to the lichen sclerosus community. Wonderful, wonderful news from you. I am so very pleased that you took notice of my words about how important it is for others following on with this site, to receive good news. I am very happy that you persevered and now feel better. If I had some kind of award, I would surely give it to you for this kind and human action. Bless you and I hope you continue to stay well. Wonderful too for me, because it is evidence that what I offer here is really helping people. I hope your kindness will encourage more people to come back and share their happy stories. I have some heart warming stories to tell on the next internet Radio Vulva Health show as well, so for anyone reading this do look out for the regular updates on what is going to be on Radio Vulva Health. Fabia@Admin.

  128. Kate1966

    Hi, i am a 46 yr old female, and i was diagnosed with LS about 10 yrs ago. I use the clobetasol proporinate cream, and that helps, but i continuously have problems. Especially with sex. I rip and tear, and itch so severly. My husband suffers just as much. I feel very bad for him, b/c he wants sex all the time, and i am not hardly ever in the mood, for fear of the pain it will cause. When i was diagnosed i had the punch biopsy done, and the diagnosis was confirmed, as well as telling me i did not have cancer, which was a relief, but i am still in fear of it developing. This a very depressing thing to have. I already have ibs, and have to deal with that and feeling bad all the time, now i can barely have sex to relieve other frustrations. Sometimes the itchyness keeps me awake at night, and i’m always uncomfortable down there. I use the cream on a as needed basis….the severity comes and goes. But the cream does work, that i know am grateful for it. I was so glad to find this site, and to know i am not alone!

  129. mar

    So glad I found this site I have been having problems for nearly 8 weeks I went to 8 doctors in 7 weeks and none of them could help me I was being treated for thrush I had really bad itching/burning/soreness. I was so sore it hurt to sit down I changed my washing powder stopped using shower gels nothing seemed to help me, I finally got told by the 8th doctor I seen she is sure I have LS she said she seen scar tissue and she gave me dermovate to use once a night for the first 4 weeks and every other night for 8 weeks reading some of the information on different websites has really scared me I m 30 and wondering if this will ever get better, my gp has referred me to be seen by a dermatologist but it will be a few months before I get seen,reading some of the comments on here has eased my mind a bit does having this condition mean I will have to use these creams for the rest of my life sorry lots of questions I’m just really nervous.

  130. Katherine

    I’ve just had a check up with my gynaecologist, marking one year from my diagnosis. I can remember how distressed and scared I was when I began treatment and found this site. One year on I am still learning how to manage this condition. But I want to say to anyone newly diagnosed, my symptoms have never again been as bad as they were before diagnosis and beginning treatment. My gynaecologist reassures me that this is very common. Most women experience the worst scarring and damage before they are diagnosed and begin treatment. Anyone new to this be reassured steroids are our friend any side effects from their use are insignificant compared to the damage we do to ourself by not treating this condition properly. I’m still a bit scared of this but I now know I can fight it. I thank all of the ladies that visit here for sharing and supporting. We live, we learn, and we survive.

  131. Jenny

    Hey everyone,
    I’m 27 and have had LS for around 3 years. It was noticed when i was sent for a smear test by a very very good GP which i had been refered to the gynaecologist for as they wouldn’t do it in Dr’s surgery due to my age at the time (24). While he was down there he noticed a small patch of white thickened skin which i hadn’t really noticed. I’d had a few issues with blistering during my pregnacies and itching, but nothing else.
    Anyways, it got worse and while i was in for a colposcopy it was suggested i go back for a punch biopsy. By this time it had spread all over my vulval area and was very itchy. The punch biopsy confirmed LS and i was prescibed clobestasol.
    I had a LLETZ procedure in the summer of 2010, in which he removed two thirds of my cervix due to the precancerous cells being up in the cervical canal, and spent a horrific few weeks wearing sanitry towels which left me raw from irritation and itching, but i had to wear them while i was ‘on’ due to op :/ Does anyone else find they can’t use sanitry towels? Also, aloe vera toilet roll gave me blisters. The joys….
    Anyways, its like history repeating itself now as the LS has flared right up after only suffering the week before and the week during my period (also, does anyone else find that? intense itching which wakes me up, leading to bruising and broken skin that seems to disappear at the end of my period,) (and i’ve run out of clobetasol until i see GP monday at a new practice) and also at the same time i’m experiencing similar symptoms which caused the GP to refer me for a smear which luckily discovered the precancerous cervical cells. Arrrggggghhhh! Sorry for ranting on a bit, but i’ve never actually written or spoken about these issues to anyone properly.
    LS is a pain in the ass (or should i say groin lol!) and i’m getting a bit sick of it. The site of the punch biopsy has now shrunk with the labia and has almost disappeared and my clitoral hood is slowly being engulfed by white…..As a recently divorced young woman who was hoping that maybe one day i’d have the time and energy, after juggling a full time career, 2 kids, the housework and a cat, to possibly start a new relationship, i see that hope fading further and further away, and the idea that i may have to get used to my own company and get a few more cats, is looking like a much more plausable future is quite a depressing concept.
    Anyway, any answers to the questions scattered throughout my, possibly too detailed, account of my nether regions would be much appriciated. Thanks 🙂

  132. christy

    Hello,

    I’m 32 and have 2 children, a cesarean and a vbac. My vbac went awfully bad. During labor the Dr. inserted a scalp monitor to monitor my baby’s heart rate, while doing so, she pinched and bruised my cervix. Later on, while inserting the urethral catheter, the assistant hurt me terribly… for months I had involuntary urethral contractions due to the trauma. My baby was 9 lbs and caused tearing of approximately 1.5 inches during delivery. Four weeks later, I developed vulvar cellulitis (the most painful thing ever!!!) and had to go to the ER (during the weekend) twice, to have it misdiagnosed and called a “yeast” infection. The abscess burst out like a volcano and caused an injury to my labia. It took a long time to heal. Four weeks later, I got the Mirena placed in. After that, I spent a whole year with monthly (around the time when I was supposed to have my menses) Infection-like episodes. Lots of itching, burning, pain, not much discharge, but the itching was completely driving me crazy. Every month, on and on. I went several times to the GYN and was checked for UTIs, yeast infections, etc., and nothing, nothing ever. I was put on a steroid cream under a vulvodynia diagnosis and my papsmear came back positive for HPV. I had a colposcopy, very painful, without anesthesia, a polyp was clipped off the walls of my cervix. A few months later, the itching and pain came back violently and without mercy. I couldn’t take it any longer… finally, I was diagnosed with LS and put on NORETHINDRONE (HORMONE), NEUROTONIN (PAIN) AND CLOBETASOL OINTMENT. It gradually started working… but the clobetasol ointment was very aggressive (even though I used it sporadically) and it began to fuse my labia minor with the major. Now I also had an aesthetic problem! Although my LS was under control, it seemed to get worse and worse around my clitoris and the hood area. Papercut-like lesions and “shedding” of the skin (as if I had millions of toilet paper coiled up pieces) have been a constant. I had two biopsies done earlier this year to rule out cancer. Which at the time, I thought had been done to confirm LS, not to detect cancer! I was terrified. The results didn’t show cancer, but tremendous amounts of scarring to the skin, particularly in the hood. I read a lot… I added alternative treatments such as: RESCUE REMEDY by Bach flower essences for stress relief, KRILL OIL supplement by Dr. Mercola and 4Life Transfer factor to boost my immune system. It was all under control for a few months, until I started having relationship issues and the stress in my life increased. Also, my Norethindrone prescription was changed, because I needed to add birthcontrol and now have had one depo shot, since the Dr. told me it had the same hormone plus birth control in it. I think it’s not working. I’m in a lot of pain, I have several lesions that don’t seem to heal properly (not even with the clobetasol) and I’m tired and weary. Definitely seeing the dr. soon. I also found out that my grandmother had LS for three years. I strongly believe that I’m a case of the three components of plausible cause of LS: trauma, genetics and stress (immune suppression). I also believe that I’ve been a lab rat for my drs. but at this point, I don’t mind all the drugs… just keep this under control.
    I wanted to share my story and see if anyone has been on NORETHINDRONE before. I haven’t read anything about it on this forum. All treatment seems to point out the use of CLOBETASOL/steroids but no one talks about hormones and narcotics. 🙁

    Thanks for reading.

  133. Vicky

    Hi
    It took over 5 years of me constantly visiting the doctor to be diagnosed with LS. 2 years on, I’m 29 and my condition is mostly manageable with the odd flare up now and again. The main problem I have now is that sex is almost impossible without extreme pain due to the scaring that I now have and has resulted in the end of a relationship. I use dermol every day along with a range of steroid ointments including betnovate, emulvate and dermovate – I currently use emulvate a couple of times a week and depending on the strength of the flare up will adjust that when needed. I am also on a monthly prescription for fluconozol which I take for 5 days every month (pill free week) and I’ve noticed without that the flare ups are much more extreme. it’s nice to know there are more people out there with this condition as I was originally very embarrassed and upset even though it was a relief to finally be able to have a name for what I was experiencing. Does anyone have any tips for dealing with the scarring? also, about a year ago I started to notice white bumps under the surface of my lips and also on my gums as well as ulcers / tearing on the gums near the back of my mouth (wisdom tooth area, not caused by my wisdom teeth as removed many years ago) – I did speak to my doctor about it but he said it was nothing. it mainly occurs when I am run down which is also when my LS tends to flare up – do you think this could also be LS as I know it can manifest on other areas of the body. I would appreciate any comments or suggestions.
    Thanks

  134. Catherine

    I was diagnosed at my gynae clinic a few years ago now. I was prescribed steroid creams for several weeks, to continue if needed. This helped whilst my condition was at it’s worst. I always found though, that if I had slight itching and used the cream, my condition actually worsened. I found that if the itching was mild, to use Savlon instead. It actually soothed and helped so much better. I also use Aquaeous cream to wash and wouldn’t use anything else. Another tip I picked up was to use panty liners. I use them everyday, which helps keep the area stay fresh.
    I think I have it very mild compared to some people and steroid creams have definitely helped me in the past. I just wanted to share some of the other things that have made things a bit easier, as I haven’t had to use steroid cream for a while now. You may find them useful.
    I’m now pregant and hoping the condition doesn’t affect the birth in any major way. I think that more investment is put into this condition, as I think it is so much more common than we realise.

  135. Maggie

    I found this site the day after my GP casually told me I have two small patches of LS on my perineum after I complained I had really stinging soreness and two “scratches” that wouldn’t seem to heal.

    She gave me a prescription for betnovate to be used sparingly one a day on affected areas only for two to three weeks.

    I don’t know if finding this site has made me feel better or worse. I’m 35 and the thought of having something that’s just going to get worse and worse over the years and make my already (due to the soreness) almost non existent sex life even worse is just so depressing.

    I’m now worry how much of my vagina, perinuem and anal skin is affected. I had on and off episodes of vaginal soreness and stinging for years and little tears appearing by my labia as well as periods of having the most excruitiatingly sore bum for no apparent reason whatsoever. The skin would just become red and inflamed and take weeks and weeks to heal.

    I did notice some months ago my mania looked smaller and paler than before but I though it was due to post birth hormones and breastfeeding. The skin between my clitoris and vaginally opening is really pale in colour and the colour of my inner labia patchy looking. I am wondering if all this is part of the LS? My GP only really looked at the two sores on my perinuem and made no comment about the rest.

    I’m wondering if I should be putting cream all over? Or just the two really sore areas?

    I’ve probably had this for years haven’t I?

    I feel really depressed about the diagnosis a d not knowing how much of my vagina etc has been affected.

    I’ve read here you are supposed to use the cream long term but my GP just said for a couple if weeks and that its like ecsma and will flare up periodically.

    🙁

  136. Mrs. H-P

    Hi,
    I stumbled across this site trying to find some answers for whatever may be wrong with me…

    Yesterday I visited the GUM clinic after suffering from a bout of thrush for over 3 weeks and I also noticed a white/v.pale grey small plaque in my vulva. The Dr. said everything looked normal and not to worry and casually said I might have LS, come back in 6 months for a check. He didn’t explain what LS was so naturally I looked it up. It seems ‘not to worry’ and ‘LS’ don’t belong in the same sentence! After reading that the disease is chronic and progressive and best treated early, I made an appointment with my GP today and she examined me and said she wasn’t sure what the plaque was but has put me on Betnovate ointment (a steroid) to be re-assessed in a fortnight. She was very nice but didn’t seem to think LS is the cause of my symptoms on account of my age? (I am 27) and because I am not constantly itching? I have bouts of itching from time to time that last a few days – week but never constant or so bad that it drives me to distraction or I would have seen a doctor sooner. I also am prone to thrush but not excessively – maybe 4 times a year. Anyway, having found this site it seems that it is not that unusual to be a pre-menopausal lady with LS? When was the last time someone re-evaluated the age demographic of the disease or the prevalence for that matter – it doesn’t appear to be that rare either?! Sorry for the digression, what I really want to know is will Betnovate make any difference? Most of you seem to be on a different steroid. Do I need to demand a referral? My doctor didn’t mention one and I’d rather not ignore what ever this plaque is and get a biopsy and get a diagnosis. I do have coeliac disease too – it is an autoimmune disease but not listed specifically in any of the literature I have read. I also find that my vaginal is over-dry during sex could that be related too?

    Thank you all for your honesty on this site – It gives others like me the courage to speak openly about such a personal issue.

  137. Minnie Salazar

    Thank God that I found this website. I’was diagnosed with Lichen Planus of the mouth 15 years ago. I also suffer from hypothyroidism. I am 69 years old. My doctor diagnosed me with Vulva Lichen Planus last week because since I have it in my mouth she thinks it’s the same thing. All she did was test my urine and she said it was clear. The itching is driving my crazy. I have used every cream that is out there, plus my doctor has given me a couple of steroid creams that not worked and the itching is getting worse. Tomorrow I will make an appointment with a gynecologist to see what she says. As some of you have mentioned, I also have itchy eye lids. Is Lichen Sclorus the same as Lichen Planus? Thank you.

  138. HLL

    I have just received confirmation from biopsy that I have LS. I am 34 years old and think I have had the LS symptoms (mainly itchy) for the last 15 years or longer, I just didn’t realise that it was not normal I had lived with it for so long and for a long time there was no visible changes.
    I have a 2 year old, who was delivered by c.section due to breech.
    About 18 months ago when my daughter was around 7 months old I developed severe sores, itching which my GP at the time said was thrush though I had none of the classic thrush symptoms, I was treated with Canesten HC (mild steroid), the symptoms improved – GP dismissed my concerns that it was not thrush and when I said I had read up on skin problems which cause the symptoms I had, she smiled and said, no no that would not happen to someone your age, so off I went and over the last year and half I have kept Canesten in business without any improvement to my symptoms with the over the counter treatment (as it doesnt contain any steroid!!).
    I have since changed GP’s and after an episode of bleeding following intercourse the GP found a vulval tear and took swabs for STI/yeast and all were ok, so when I returned saying the symptoms had not improved on more Canesten she referred me.
    18 months ago the GP scared me beyond belief suggesting that it could be cancerous and then dismissing my concerns at the follow up visit, it was a great relief to be seen by a GP who suggested it could be a skin condition which although presents its problems is manageable.
    Thanks to a very bubbly Gynae registrar I had the biopsy done all in the first hospital appointment, and after a few weeks (slightly anxious) I saw the consultant today, who confirmed LS. She advised me to avoid hot baths, continue to use E45 emollient bath/shower (thanks to this website I started that a few weeks ago and already even without the CLOB steroid things appear a little better), also advised to wear cotton underwear, wash underwear in non-bio and wash vulva with water after urinating then pat dry rather than wiping with dry toilet tissue. Rather frustratingly she did not give me the Dermovate prescription today, I have to return to my GP. I will be calling them in the morning to arrange that!
    I am keen to have another child, and on GP advice have held off trying until the biopsy etc, the gynae said today it would be ok to start trying for another baby (even on the steroid), she said that I should be seen once pregnant to confirm that the vulval narrowing is not going to cause excessive tearing or bleeding in labour but as I had c.sec last time I have an open mind about how a baby arrives as long as it comes out safely!
    I felt compelled to visit this site and update my experience, as I have regularly visited in the last couple of months and have been reassured by other peoples stories. If you search online for LS it is generally mentioned alongside cancer, very scary no matter how old you are but as the mother of a young child I want to live to see her grow up! The gynae today said that I would be reviewed again in 6 months, but that I should regularly examine myself for changes (this is something I have been doing regularly of late anyway). The risk is there but there are risks in everything we do and I just have to hope we all stay healthy for as long as we can :-)!!
    I am keeping my fingers crossed that with treatment my LS will be controlled (and that we can soon hear the pitter patter of tiny feet ;-))
    Wishing you all good health and happiness x

  139. Jules

    Has anyone tried using topical antioxidants on extragenital LS? I have spots of LS all over my body. I’m told that extragenital LS does not respond well to steroids. I’m using aqueous cream for showering and as a moisturizer which has helped with itching. I would welcome suggestions for a recipe for antioxidants to mix with the aqueous cream. Any ideas? The commercial antioxidant creams are way too expensive for me as I want to use something all over every day. My LS is spreading and it is horrible to watch it growing daily. No one has come up with anything else to use that is safe and I’ve not seen any research into topical use of antioxidant creams for LS. If anyone has read any research on this please point me in the right direction to read it.

    All I’ve seen investigated so far are steroids, hormones, amoxicillin and calcineurin inhibitors.
    Is there a doctor anywhere that is researching new treatments for LS on the body? Surely there must be someone out there attempting new approaches.

  140. Sandy J

    I had viral meninjitis last year and when I was in hospital I had terrible itching and soreness and paper cuts in my vulva I asked my daughter to bring sudacrem which helped a bit. When I came home I found a lump on my small labia which I had removed at the same time had a biopsy a few weeks later I was told I had extensive LS I had been going to the doctors for about 2 years with itching and given a swab told I didnt have thrush! Was given dermovate cream told to use it every day for one month then every other day then twice a week managed to get it under control although I have lost small labia and have a lot of scarring, didnt want to use steroids all the time as was scared of them thinning my already fragile skin so sent for perrins cream, what a mistake within two weeks had a massive flare up and am still trying to get it under control using steroid twice a day emu oil is very good too will keep on with the steroids now ive learned my lesson the doctor also gave me gynest cream so im quite hopeful now. im now trying coconut oil mixed with a little sudocrem its quite soothing. Good luck to everyone just got to keep trying.

  141. ladyfeathers

    I have had genitlal herpes for several years now, that rarely went away, or so I thought. It finally got so bad that I went to my gyn. She told me I had LS. My question is how can I tell which outbreak I have when one occurs? Would it be harmful to treat for both? I feel cursed.

  142. rhvt64

    I was diagnosed almost a year ago and every month since I have experienced a flair up. I use clobetasol, but this does not give much relief. I am very discouraged , it seems neither of my physicians know what to advise. At one point A&D ointment helped with the burning when urine touched the open splits in my skin, but now that is not effective.The only relief I get is a cold wet cloth wiping the urine away from the sore area. Being only 49 and not done menstruating, I do not look forward to the other nightmarish symptoms that go along with this disease. Sorry I am not as positive as some, I’m just so frustrated right now.

    Thank you for giving me the forum to search for information.

  143. Georgie

    I had an overactive thyroid, probably undiagnosed for about 30 years! The medication gave me a very bad reaction and I was convinced that radio active iodine was the best option. The result is that I now have an underactive Thyroid for which I have medication.
    For those same 30 years I had problems down below, but this was deemed to be pretty much in my head. Symptoms flared up now and then, sometimes I saw the Dr. sometimes not. A little over a year ago Lichen sclerosis was ‘diagnosed’, I won;t detail it as it is all here on site. PAIN, MISERY DESPAIR.
    I had a hysterectomy 14 years ago with a front prolapse repair. I’ve just had a rear prolapse repair, Collhrophy or some such, together with a biopsy that took 4 stitches. I hope things might improve but it seems doubtful. The LS seemed to be controlled immediately after the op, but 3 weeks later is making a nuisance of itself.The hospital had no advice to give me about using my creams again, I’ve just had to go on instinct. Still losing lochia like fluid so very sore and damp.I thought the bowel was also down to thyroid and operation, but maybe not.

  144. Nichol

    Hi, I’m 27 and I have recently discovered white raised skin ‘down below’ surrounding my cliterous. And over the last 6 month – year I have had really bad itching of the anus at night. The fist doctor I saw said she thought it was lp and the second thinks it is ls. I have been refered to the gynocologist who I am seeing tommorow. In the meantime I have been prescribed steroid cream which has worked wonders but I am afraid to use it every day as I don’t want it to thin my skin too much.

    What I am wondering is that I have suffered from symptoms of thrush and cystitis since I was 14 which have put me through so much pain. I have been tested for endrimetiotis and also had my blader checked and they could not find anything wrong and simply was told that I was ‘wired wrong’ and therefore I have just lived with it. Could this be linked even though the white patch has only appeard in the last year? Have other people had these symptoms?

    Thank you

  145. Dianne

    Hi
    I have just been diagnosed with lichen sclerosis, and I have had the symptoms for over 12 months now. i did visit my doctor last Sept and was prescribed Gynest – there was no physical examination. Things gradually deteriorated and I thought I’ve been going mad since the beginning of this year. I have been to see a consultant and he has prescribed Dermovate, but I dont know how long I need to use this, and what it does, however I was given this information on a compliment slip with no explanation as to how/why it occurred and what I can expect. To be honest I feel as though Im being treated as though its a bit of a sniffle, which is a massive understatemen given that it is affecting all aspects of my life & sex life! I havent even got instructions on how to apply the cream as the packaging explains it is not for use on genitalia?! I dont know how often to apply the cream? Any advise anyone can offer will be greatly appreciated.

    Regards
    Dianne

    1. Post
      Author
      admin

      Dear Diane, Sorry to hear that you have not been correctly advised about your treatment. The consultant owes you a duty of care, which must include giving you information about why you are using the Dermovate and how to apply it, how much to apply and where, (take a mirror along with you and ask to be shown) and how long to use the treatment for. You should also be given information about using moisturisers and other basic skin care details. Sadly, this consultant has not even given you the minimum of care. Hopefully you will either write to the consultant or phone the secretary or ask your GP to write to the consultant and ask all of the above questions. Also point out that we now have standards for vulva care, which are published on the front page of this website. I do hope this will help. Please feel free to contact me personally if you still have difficulties. You can contact me from the contact page.

      1. chris

        I have just discovered this website. I have not yet been diagnosed but I have suffered with the symptoms of itching for 25 years. My GYN has commented how my labia has fused and clitoris scarred over. She now says that my vaginal opening is too small for intercourse. I have had sores/cuts in the past but she just gives me estergen cream. I have asked her about LS but she said it presents with white streaking. My question is this: who can I go to in Buffalo NY for a biopsy and diagnosis. Do I go to another GYN or a dermatologist? I have had 2 GYNs and neither have taken any action other than comment about the condition of my vulval area. I am so frustrated and getting very depressed. Thank you

    2. Ev

      I was diagnosed with lichen sclerosus about 6 months ago. I now have a respiratory
      problem (possibly infection) and wondered if taking antibiotics for that would make the lichen worse. Am now reassured that I can go ahead with them if necessary. Thank you to all for your comments.
      Good to know I am not alone. What a wierd disease.
      I am using Bi-Est (a plant based estrogen cream) prescribed by a naturopath. I also applying Castor Oil topically, as an anti-inflammatory when needed on the days I’m not due to use the Bi-Est. As well, I do a 3 minute warm as possible sitz bath followed by 30 sec in cold and repeat this process 2 more times, once a day. This seems to be working for me, but I must avoid sugar or it flares up.

  146. Fiona

    Hi

    I am so pleased to have found this website! I am hopeful that someone will be able to help.
    After finding sex more and more painful after the menopause I was referred to a gynaecologist. I saw different registrars each time (all foreign men whose accents I found very difficult to understand) who each tried something different. I was given testosterone patches for a while (no effect), told I was depressed by another, given antibiotics by another. None of them could see anything wrong with my vulva. Eventually I saw the consultant (another man, British this time) who on examination immediately diagnosed LS. I was given Dermovate and Gynest and told I would need to use it for the rest of my life, once a fortnight. Nothing has changed, and 2 years later I am still unable to have sex. My poor hubby puts up with it but it has caused us to drift apart. I have no sex drive whatsoever. I was not offered a follow up. Regarding the sex, I was told to keep practising and things would get easier! I can’t help thinking that a woman would not have given that advice.

    I suffered a lot as a child with terrible soreness and itchiness and wonder if I had it then? I could only tell my Mum I had a sore bottom, and of course she assumed I meant anus so told me to put zinc oxide cream on, which did help, temporarily. I never saw a doctor about this at all. It cleared up in my late 20s when I found washing with Body Shop tea tree oil facial wash kept the symptoms at bay, and it only re-emerged post menopause.

    I now have another problem. I use panty liners as I always get a lot of discharge. Recently Always have changed their panty liners and put a scent in them (I didn’t realise this until after 2 weeks of use). I have developed an incredible soreness! It feels like my vulva has been rubbed down with sandpaper! I have stopped using the panty liners but can anyone advise how to alleviate the soreness? Canestan makes no difference, neither does my dermovate. Can anyone recommend a suitable brand of panty liner please?

  147. Lisa

    My daughter was diagnosed with LS this year at the age of three. I am still in shock that my baby has to go through this. She was put on steroids, but they seem to thin the skin even more and then it tears more. She is always uncomfortable and tells me how much pain she is in. I was wondering if anyone has any natural alternatives they’ve used that bring relief from this horrible disease.

    Thanks Lisa

  148. Nicole

    Hi,
    I have just been diagnosed with vulva LS. I’m 29 years old. It is not the LS so much that is giving me problems. I have a 1cm sized tear which has not healed for 3-4 months and it is the tear which is causing me pain and discomfort. I starts to heal up a bit sometimes but then I’ll sit down abruptly or wear a tight skirt and it will tear open again.

    I was just wondering if anyone else has a tear in the centre of their LS? If so what did you do? The gyno said maybe surgery, I’m getting a second opinion from a vulva dermatologist this week. Any creams people have tried which resolved tears, or has anyone had surgery?

    The gyno said it is difficult to heal as the tissue isn’t healthy and to continue with steroids. Only I think the steroids are also reducing the chance of the tear healing as it prevents my body’s natural inflammatory and healing response. I’m very lost.

    1. Irish Eyes

      Dear Nicole, I too have a large tear that heals up and tears over and over again. I have just been diagnosed 2 months ago but have probably had LS 2 years now. I would advise you to research like I did Dr Francesco Casabona, Genoa in Italy. He is offering stem cell treatment that can almost reverse the condition and most certainly improve your LS. When I spoke to him his first question was “did you have any surgery?”, I said no and he seemed pleased because there is a somewhat lesser success rate after surgery. I am in my early 30’s, and I am travelling from Ireland to Genoa soon. You are very young to have this disease and I feel your pain. I have opted not to take any topical steroids until I see Dr Casabona although he did not ask me too – I feel that I can persist with the symptoms until I see him. He is highly specialised in dealing with LS. You deserve to have the best treatment possible in order to have a normal life. I visited 2 consultants who never even saw this disease before meanwhile Dr Casabona diagnosed me immediately over email!! I have huge faith in him, the treatment is not unreasonable, he does not take a fee but you have to cover the hospital costs. in all €3,000 should cover your treatment costs. Dr Casabona’s details are easily got from the internet, and I got a response the next day with his phone number so I rang him and he explained everything. I am really looking forward to seeing him and getting my treatment. Please research all avenues before you opy for surgery as not many will offer such experienced advice=se as Dr Casabona, he is a world leader in this treatment.

  149. Carenza

    My lichen sclerosis seems very much linked to hormones. I used to get it badly when on the pill – but not during the week break in the pill. I had it while breastfeeding and it stopped when I stopped breastfeeding. Now I am starting the menopause, and I am wondering whether HRT is a good idea in my case? Am I right in thinking that my history indicates that a reduction in oestrogen is a factor? I GPs are very ill informed about the condition.

  150. Jess

    Hi Jenny (posted back on Nov. 2nd 2011)

    I’ve just read on Netmums UK that there’s a new-ish, non steroidal cream out there, made in Switzerland, which many GPs are recommending for vulval discomfort and that some LS sufferers have had good results with too.
    Whilst I’m not advocating that anyone use this instead of steroidal creams, without consulting a GP first, it does seem like an interesting product to try.
    It’s called Neo-Gyn and seems quite expensive.
    I’m going to try it too – I have had scaly, itchy skin on my outer labia for about 3 years now and have never found a GP or even a vulval specialist who could help me. I don’t have discolouration but do have what seem like blocked pores which sometimes increase in size or go by themselves. Very dry skin under the hair of labia too, which scales off like bad dandruff. When the itching starts it’s impossible not to scratch, which invariably causes some bleeding from little sores. They always heal, but it’s driving me mad. Many nights of interrupted sleep. Made worse by seating and hot weather. I’m going to try some of the tips on here from the very wise lot that you all are!
    Emu oil does help and soothes, but doesn’t make it go away. Keeping dry skin moisturised seems very important, as the scaly skin as well as the raised whitehead type spots (no pus) both itch.
    Nothing to lose from trying Neo-Gyn – hope it works for me!
    Good luck jenny and everyone else plagued by LS or similar symptoms.
    Scouring the internet, I have come to the conclusion it must be

  151. LSinStlMO

    I’m 54 years old and was finally diagnosed with lichen sclerosus after visiting at least 5 doctors, and being told over and over again that there is nothing wrong with me. My physician has prescribed steroid cream, saying to use it more often when burning occurs, and then less often to once or twice a week. Also, to apply crisco several times daily. I put crisco in little plastic containers and carry them with me. I’m only to wear white cotton underpants, and use soap that is free and clear with no perfume and no dye. It got better at first, but now comes and goes. There are good days and bad days. Lots of crisco is a must when having sex. I’m very interested in the stem cell therapy, and I guess that I need to start saving some money for it. It would be nice if there was a place near St. Louis, Missouri to have it done. Thank you very much for having this website and for helping others.

  152. vickie

    Hi, I’m not sure how I found this site, but so grateful for it. After suffering for such a long time and my GP thinking it was menopause symptoms, she finally sent me to a( gyn at the hospital in the pelvic floor clinic) 3 years ago, and he told me right away it was LS (genital region) and said no need to biopsy. I was put on clobetesol and was told to come back every 6 months. But I found after a long time it was thinning my skin, so my GP put me on Betaderm0.1 cream and I found I don’t tear as much and the itching/burning is kept at bay most of the time. After having such awful symptoms like so many others for so long, I can say I now feel I’m in remission. At times I forget I have it. I do notice when I get anxious/nervous I have flare ups, so I try to keep my stress level down. After the redness ,itching and burning went away with the help of the cortisone, I have been using dilators and have been able to have sex again. I thought I would NEVER do that again, due to all the pain,and found that the most depressing time of my life.I have been using The dilators and they let me know I can do it without tightening up in fear of pain. I’m so thankful that my gyn told me of them, and I can get them at his office. Once again I want to thank all of you for sharing your story as you are the first person I have shared my LS with. My husband of 27 years doesn’t even now I have it. I have felt so alone with this disease not being able to talk about it to anyone in fear they wouldn’t understand. I find all your post very helpful and no longer feel alone. My LS has been under control for some time now, but still not sure if I should still use a little steroid cream once a week now to keep it that way or from further scar/fussion. I am worried about to much steroid but also know it has worked for me. Please hang in there because it does get better, BUT there is so much to learn on this. Keep well to you all and thank you for all your postings.

  153. jennifer

    If only I got diagnosed with LS ages ago! How long forthe symptoms of ls to die down? I think mine was quite bad I had deep cuts alongside my vulva and alot of white patches 🙁 so painful. Been using dermovate for a week with a teeeeny improvement. My doctor also gave hydromol to wash with as a soap supplement. Thanks 🙂

    1. Post
      Author
      admin

      The time span for improvement is different in each person. Doctors estimate between one week and three months, depending on the strength of your steroid and the number of times a day you apply it. Hydromol is one of the best emollients on the market, it not only works as a soap substitute but is also an excellent moisturiser that you need to be using several times a day and in between applications of the steroid.

  154. Patti Young

    In March 2012 I was diagnosed with L/S. I was devastated. When I was 21 I was diagnosed with Endometriosis and it’s been a long and tiring journey to say the least. I could never have children… and now I find out that one day my husband and I won’t be able to have intercourse! Just shoot me now… as it is now, intercourse tears me. My OB/GYN prescribed Clobetasol, and she also suggested the natural route, which was to use Emu Oil and / or Crisco.

    1. Post
      Author
      admin

      Technically speaking there is no natural route. Abandoning steroid treatment for anything natural can, in many cases, increase the risk of complications and make sexual problems become more of a possibility. Ob/gyns are not trained in skin disease and unless they work alongside a good vulval dermatologist, they often are unable to offer adequate skin care information. With most skin conditions, it is really essential to use emollients/moisturizers, and Crisco or Emu Oil will help to support the skin but need to be used daily and alongside the steroid treatment. The truth is that anything that moisturizes and suits your skin (and your budget) and that you are happy with, will help to relieve symptoms and to keep skin supple. One of America’s premier, educated and knowledgeable vulval dermatologists recommends using Vaseline. As far as never having sex again goes, well, that may never happen in your case and my personal wish for you is that you will find enough education, treatment and help to avoid this happening. I have very complicated LS, for 20 years now and have had many challenges but I can still have sex and I am in my 60’s.

  155. Young Momma

    Hi there,
    I am 28 yrs old and was diagnosed with LS at my post partum appoint a few days ago. This is my third child, I have gone for regular paps, check ups ect and so my ob/gyn and I were both shocked when she found that my whole vulva has thin white skin. I had a csection 8 weeks ago (therefore no one was around my genitals) and do have a fair amount of “stressors” in my life. I also have hpv (I don’t know which strain) and autoimmune hypothyroidism. I guess I’m a perfect candidate for yet another strange disease at an early age! I have absolutely no outward symptoms (itching ect). I do find that I have a strong vaginal odour, which I thought was hormonal after having a baby but it’s still lingering and I’m wondering if it’s related to LS. I’m absolutely terrified about the long term affects this will on my life and relationship with my husband (although he is very supportive). My ob/gyn has prescribed dermatov (?) once a day for three months and then I see her again. I’m concerned because I’m unsure how long I’ve had this condition, my whole vulva are is the pale white, although I have no lesions or cracked skin. I’m just unsure if I have a mild case or more severe (my ob didn’t say anything really although she commented that part of my lips had dissolved??). Also without outward symptoms how am I to know when it flares after treatment? I fear I will have to check myself every day for the rest of my life… Sorry this is so jumbled I am extremely thankful for this site as it gives me something to shed a bit of light in the condition. I just have so many questions…

  156. Pamela Cummins

    Hi again! I originally joined and posted when I was first diagnosed in 2011.

    Since then things haven’t been too bad – except sex life which is pretty much non-existent because it is still so painful. I have barely used the cream for the past couple of years because I thought it was better not to unless absolutely necessary, but now have very shiny white looking area right up the front that keeps on splitting for a pastime.

    From reading more up to date info on here it sounds like it is now recommended to use the cream a couple of times a week continuously. Is my understanding correct?

    Have been using it for the last few days but still stingy and sore:(

    Bit anxious because I have to go for a smear test on Friday – the first one since all this kicked off.

  157. angel_daw

    I was just diagnosed w/ LS. I am an RN and I must admit I never saw this one coming. I am 62 and long ago post-menopausal. I have been having some vulva issues w/ itching, burning, and pain so decided to go back to my GYN for a visit. My annual last Sept. was good. No signs of anything. Two weeks ago tho there were bright white patches on the perineum. She did a biopsy and the LS was revealed.
    I will begin treatment tonight. I am not sure what to expect.

    deb

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