LICHEN SCLEROSUS

Thank you sue i will try the epaderm i do have clob (dermovate) but i am always reluctant to use it all the time.  However suffering in silence is not helpful either.  It is conflicting what the ladies on the forum say some thing the dermovate makes the area worse and some say it helps.  I think leaving the LS without the steroid is risky do you agree.

Jackie at the moment high potency steroids are the only topical treatments found for LS at the moment. We all seem to agree that stress will worsen the condition and may have caused it the first place, with a probable genetic link. If you haven't watched the Dr Goldstein's lecture please do so it will answer many questions and some you didn't know you wanted to ask! 

Several people also have found reducing sugar in the diet, including fruit and alcohol will help flare ups. Do learn about the anatomy and chemical make up of the area and a lot of information will make more sense to you. Google scholar search engine will lead to academic articles too take care

 

Do you use the epaderm cream or the ointment?

Hi epaderm ointment 3 in 1 emollient, bath additive and skin cleanser . Hope this helps

As far as I understand it, LS left untreated is far worse that using a very small amount of Dermovate on a regular basis. I have also been advised by the Royal Free that if things get worse then I will be referred for stem/fat cell treatment. I'm just so relieved to have been referred to the RF as I now feel well looked after

Can u explain srem/fat cell treatment. What is it and why would it work? I have tried so many things and although the Ls is sort of under control I have dryness and cracking and nothing works - I have just ordered some soap and cream from recommendations on here and keeping my fingers crossed that something works. I have tried vaseline - bicarb soda and water and coconut oil so far. while at first it feels soothing - by third application its red raw an sore. Have now orered Epaderm Emollient For Dry Skin ointment and emu soap..... will now try some of the uk remedies... I wonder if enviroment influences the outcome of the treatment. I live in a dry, cold and snowy zone with hard water....  Does anyone live in an area like I've described and had sucess with something to moisturize?

Just a side note that the coconut oil seems to be working on my breast.

 

Hi, 

I am new to this forum. Where would I find Dr. Goldsteins lecture?

Paula

I read somewhere that this lecture held a lot of info about lichen sclerosus. That is why I am looking for it. 

I can't give the link, but if you google " lichen sclerosis Dr Goldstein" you will find it.  I am also new to the forum. I have watched some of it and find it very interesting. 

 

https://patient.info/forums/discuss/new-to-ls-start-here-297241 has the link to the webinar.

thank you for your response i havent tried diprobase or the epaderm as Sue recommended .  I am not on HRT but do use vagifem pessaries for vaginal dryness so maybe this is part of my problem to.. Hormonal!!

Hi suedm  , I was reading your reply to Jackie and was interested about your comments on estrogen , l was taking this several years ago with good results but was taken off it by my GP she said it would harm the lining of my womb , since then l have had raging LS , UTI,s and urine leakage . l have finally got referred to a gynocoligist and a uroligist , my gyny did a biopsy in fact 3 and in the process cleaned up the area , she said to put vaseline only on the area , this was November , until l see her in March . The uroligist said l must go back on to estrogen and that l should never have come off it . l have been taking it for 7 days now , every day for 2 weeks then once a week for 6 weeks then a break for 8 weeks and then start again. Since staring this my skin has plumped out and l hardly leak at all ( not tried dancing yet , thats a big test ! ) l so wish my GP had not  been so ignorent , none of the GP,s lve talked to seem to have a grasp on LS at all. ln my long winded way l was wondering what will happen when l stop for the 8 week break will it be back to square one for that time . l will ask the consultant but my appointment is a few weeks away , l just thought you might have an idea as you have taken it for so long . Thanks for reading my loonnnngggg monologue . l am glad things have worked out well for you. Jackie if you stick with this site you will find all the support you need , good luck

Hi Winifred, my GP wanted me to come off HRT 10 or so years ago when a damning report came out. I was having a really trying time (husband and work) and said I would take full responsibility for staying on it, I had to sign a waver... Then after having a bleeding uterine polyp...it could be felt in the vagina I was persuaded to come off the combination of oestrogen and progesterone combination( I have monthly bleeds still on this HRT ) and have the Mirena coil and a minute dose of an oestrogen based pill. I didn't menstruate. By now I had divorced and was looking after a dying relative -who tried to commit suicide in front of me- And The Itch Arrived! ( I had  the pain the skin falling off the fissures - the lot)  I went to a different gynae and back to the original prescription . There have been the odd murmurs about me coming off and in fact I have reduced the dosage, but so far I am prepared to take the risk of breast problems and remain on HRT, it is my body and I believe provided I am aware of the issues the decision should be mine as to what I take or not take. Nevertheless I do have LS and am losing the structure of the undercarriage fairly swiftly, but I do have mostly pink and not dry mucosa. (Sex is still great - if infrequent -and I don't split) when I stress for ANY reason - getting cross,  worried or sad The Itch returns. I was then discharged into the care of my GP  2-3 years ago and haven't been reviewed since. I am now wanting a referral to a vulval clinic..that is my nxt battle! 

I was told when first diagnosed the sudden change in hormone levels combined with years of stress resulted in the LS changing my diet has changed nothing. Except my weight when I went o  the the 2:5 diet last year

Hi Suedm , thanks for the reply , sounds like you have been in the wars , you need to get a referral l know thats not easy took me 14 weeks of constant arguing to get to the consultants l have now , its really hard especially when the LS is raging and its impossible to even think straight , but keep trying you will succeed . l got a letter last week saying my gyny consultant as been changed l am now wondering if l have been passed on to a vulval clinic because the appointment is in the same place l went with my daughter when she had a cancer cells scare , will have to wait and see on that one. My problem is the LS seems to encourage UTI,s l  have been having tests over the last month and l am having a kidney scan on Friday and a cystoscopy the following Friday already had urodynamics test , hopefully some soloutions will come from all this, l hope so, its not been pleasent all the docters and nurses are very nice and kind thankfully which makes it easier. Anyway trying to be positive , trying not too stress as that sets off the LS , had a lot of stress for the last 18 months but we are begining to see light at the end of the tunnel so l am determind to look on the bright side ( even if it kills me !! ) Good luck suedm , dont give up x

Thank you for your kind words. I was going to ask for a referral this week but second dose of flu has struck me down ...sigh... The last dose was six weeks ending on Boxing Day so instead I had to use my appointment for antibiotics..I did ask for  antiviral but she wanted me to go on this first. Sadly I should have been given the antiviral within 48 hours I will have missed the therapeutic window However no problem in getting the Dermovate. You too have had a basin full one way and anotheri have lost tract do you go to the vulval clinic inBristol? Are you pleased with them. I saw that someone was offered stem therapy at the Royal Free in London spam trying to decide where to request referral 

Laughter is a great healer so here's to a fun time ahead!

Hi suedm, sorry to hear you have the dreaded flu , l got it 22nd Dec , ruined christmas l lost my voice completely , a source of huge amusement to my family ! still coughing now , so much for the flu jab , they got that wrong this year, hope you feel better soon . l live just outside York in s the small market town of Selby , so my nearest hospital is York , we have a 3 million pound new hospital in Selby but unfortunatly the money ran out , so no equipment or a large staff , we dont even always have a docter on the premises ! consultants hold clinics there , when its just bloodpressure and a chat but proper treatment is at York hospital , l  dont go to a vulval clinic as such , maybe thats what this new consultant is all about , they didn,t give any clues in the letter. l asked to see a dermotoligist when l made my request but ended up with a gynercoligist and a uroligist , who has said he might bring a dermotoligist in on my treatment  . So far they have worked as a team and have done and are doing loads of tests including 3 biopsies  l am impressed by their thoroughness they are certainly covering everything , it is taking a long time though , which cannot be helped l had to heal after the biopsie so they could do more tests which have been invasive , in the meantime l have just put vaseline on as per instructions and had to have antibiotics when l got a UTI after one of the tests . hopefully it will all be worth it in the end . l have been suffering with LS l think for years it just was not acknowledge by my docters who l realise now just fobbed a young inexperienced girl off , , well l,m not that girl now and l have had enough ! so whatever it takes l will do . This site  has really inspired me l only found it last Oct , if the young girls read it they will not suffer like l and many others on this site have done . l feel empowered now , its taken a long time l am 63 better late than never ha !!! 

Hi Winifred,

I know this was an old post but I'm wondering how all those tests you had went especially with the urologist as I'm seriously considering going to one. I've got LS around the urethra and It's worrying me. I don't have problems with urine output but it just disturbs me when I look at myself and see the white around it. I'm quite nervous about getting a cystoscopy.

Hi Dani , dont worry about having a cystoscopy it takes about 15 mins to do, its not too uncomfortable l was terrified but my fears were unfounded. I found out that l have no obstructions and do not have cancer and my bladder looks ok , my problem is the muscle that empties thadder is not working the question now is how to make it function properly the consultant as put me on estrogen cream put directly into the vigina plus nightly antibotics

Sorry to say no improvent so far he did say it takes 6mths to work lve had 3 iti,s in the last 6 weeks . I missed my grandsons christening and now l am missing Easter with my son and his children

Sorry to sound fed up , my spirits are a bit down today. I hoped for some relief and so far l disapointed. I do have a huge amount of stress im my life that no amount of meditation is going to cure. Hey, you could get great results its always worth doing these tests they do produce positive results for many , a friend of mine got a complete cure from the results she got

Hope this helps, good luck xx