just diagnosed with ls

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Hiya

Im 38 yrs old and in the menopause.ive been having constant burning since dec last yr and wasxreferred to a dermo who done a biopsy in march which came back as non specific inflamation.i was prescribed daktacort cream which didnt help but wasnt given any diagnosis.i dont have much physical symptoms just some pigment discoloration so my own doctor started prescribing me different tablets for nerve pain which didnt help at all.today i saw another dermotologist and after looking at me she has confirmed ls and has prescribed dermovate ointment to be applied twice daily for 3 months and she said i need to perservere with the treatment and it will help me.ive read so many stories on ls and its frightening.she also told me to have sex as this is like physcio for down their.she gave me lidocaine cream if i need it.my question is has anyone had success with using the dermovate? Im so scared cause i always seem to react to anythin ive been given to put on down their and im terrified ill feel worse.does it get worse before it gets better?

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21 Replies

  • Posted

    Dermavate takes a while to start to work but it seems to have the best results in general and that's the 1st medicine they will try. You need to keep at it and make sure you are massaging it in, I know sometimes with this disease that's easier said than done. Lidocaine will help with symptons but not the progression of the disease that's what dermavate does. Some girls say the ointment is better than the cream. Do you have a good barrier cream I use hydromol ointment after every wee good luck xx
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    • Posted

      Thanks for replying justine89448 i am hoping that from here on that things will get better and that finally having a diagnosis the treatment will help.when u say barrier cream do u apply this all the time even when the dermovate cream is on?
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    • Posted

      I have shower and I use dream wash by lush to clean area. Then put dermavate on use barrier cream after an hour then I make sure it's topped up when I need it or when I go for a wee. Then at night wash area again with dream wash dermavate on then after hour use barrier cream to get through the night unfortunately this is not very romantic so if that kinda thing is going to happen I leave the procedure until after but you docter is right you need to keep active in that area. I'm going through the menopause too and I find I get dry inside but there is other creams for that you will become an expert and your Cuboard will look like a pharmacy good luck xx ps I take barrier cream out with me in a little pot
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  • Posted

    Hello Catts- Do look at the Dr Goldsteins webinar- a lot will be explained to you and you will understand WHY the Dermovate should work ad how to apply it. Much of f his lecture may go over your head as he is also directing his talk to  medical students and other professionals- however you will  learn so much more than you have been told so far

    If you read back threads on this site you will find a lot of really helpful advice and kindness too. Basically  the undercarriage is inflammed and the tissue is much thicker than it should be- the fusing may  be a result of the inflammation, To try and reduce this sore redness we have found that bathing with bicarbonate of soda in the bath to reduce the acidity will help impede the growth of yeast infections which worsens the discomfort. So Wash  yourself gently and dab dry, apply the Dermovate as directed then about 20 mins later apply a barrier ointment or cream of your choice- depending whic country you're in - you can buy over the counter nappy tyoe creams which will help to keep the urine off the area Do try and keep ALL body fluids off the undercarriage at all times. Bathe rather than shower you must get all old creams and ointments off the skin before applying new- you DO NOT want to get an infection on top of everything else - for no other reason you have enough to contend with, more heat there isnt nice!

    Do read the threads here but DO NOT scare yourself by trawling thro the internet in general- this site will help you manage your condition, most people do have periods of remission- so all is not gloom and doom. I will say tho you do have to be a bit patient- there is no magic potion for this condition. Keep your stress levels down  or manage your stress so the flare up is lessened, reduce the sugar in your diet and look at what helps the others by changing aspects of their own diets which seems to help them individually. We are all very different and our bodies react to different things in unique ways for the most part. Wear loose clothing - go commando if necessary but wear long skirts!! No smellies on the area and take heart

    Good luck Sue

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  • Posted

    Hi Catts. When I was diagnosed in January like yourself I also presented with burning. I was horrified when I was told it was LS. I was even more horrified when I first examined my undercarriage for the first time when the symptoms began. I saw the white patches and the pale discoloration. Im 25 and being this age with this problem is very distressing. But you've come to the right place. I've got a lot of support from here. Your dermatologist is right, you have to persevere. Let us know how you get on and if the burning subsides using the dermovate.
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    • Posted

      Hi guys thanks so much for all ur advice.i will definately pick up some barrier cream justine89448 im sure my cuboard will end up like a pharmacy too smile i will definately look at that webniar thanks for letting me know 4suedm it sounds very interesting and informative and so are all of u for even replying.i really appreciate it.u poor thing dani ur so young i hope u are after getting some relief and u are so right the support here is great i can see that already smile

      Thanks a million for all ur advice xxx

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  • Posted

    I would look at trying dietary changes, including probiotic foods (live yoghurt etc) and specific probiotics designed for women. You might also think about localised hormone replacement therapy which will mosturise the vaginal area & give protection from anything irritant. Dryness and excessive use of soaps etc will damage the skin.
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  • Posted

    My dermatologist said that it can take up to two years for the skin to completely heal, but you should feel a lot better sooner than that. Continue with sex, but take a break while you're really inflamed, that's no fun for you.

    It's important to keep on top of thrush, as I found the hard way - even if you've never been prone to thrush outbreaks before, thrush loves damaged skin so if you've any doubts, take some thrush medication. I found out that what I thought was continuing pain from the LS was just thrush.

    Small changes can make a huge difference to your comfort. Wear boring loose cotton knickers, and check that the gusset seams are smooth. If you're you're wearing trousers buy ones with flat seams, or sew them down flat yourself. In hot weather its better to sleep with nothing on down there. Some people on this forum have found its best to avoid chlorinated swimming pools.  I've found swimming in the sea to be really good, I suppose the cold waters calms the inflammation for a while and the salt is good for any little abrasions. Different barrier creams work for different people, I've found that small amounts of coconut oil are good, but all the nappy creams make me sore - experiment!

    I've had this for about 5 years now and it's really not a significant problem any longer, its just a matter of routine and applying my cream. Now that its fairly well controlled I can use 1% over-the -counter hydrocortisone cream which is about 600 times less potent than the dermovate so I don't have to worry about long-term effects of potent steroids.

    The worst thing you can do is obsess about this  (I did at first) because stress is the number one cause of flare-ups! Things will get better, I promise!

     

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  • Posted

    Has anyone noticed more troubles with urinary tract infections with all of the lubricants, barrier creams etc. being applied?  I try to be so careful but just picked up my second uti in six months.  I was wondering if bacteria can more easily spread to the urethra with the application of all the other substances in that area.  Thx for your input.
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    • Posted

      I do think all of our medicines, including barrier products DO increase our risks of UTI's. I have had numerous ones in the past two years. My doctor said that it is connected to LS!

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  • Posted

    Hi sorry that you have had to join us.

    We are all different, and react differently to different treatments, and so the important thing is to become well informed about Lichen Schlerosus, read as much as you can, and don't rely too heavily on the words of doctors, because they aren't always correct when it comes to the condition of LS, sorry to say it, but it is true!!    

    You are going to have to look at your undercarriage regularly in a magnified mirror to monitor your condition, and apply your cream. When you apply the cream, only use a tiny bit, about the size of a pearl. The cream your doc has suggested sounds about right for a twice a day application, however, I do think three months is a long time, and as a suggestion, perhaps you might be better using your own judgement, taking into account how your body is looking and feeling.  

    Whilst I am clearly not a Doctor or medical practitioner, I do however feel that I am qualified enough to tell you, that I too have used the cream that you have been prescribed for a week, resulting in favorable results, and then I continued to use it twice a week for maintenance, until all appeared well down below, you may of course need much longer, but my point is that only you can ultimately be the judge of how long it takes before you see some results. You also mentioned pigment discoloration, by this I am guessing you have white areas/patches, and so it is important not to be afraid of using the cream, as you will need to get this flare under control.

    With regards to sex, I think your Gyno is correct,  narrowing of the vaginal opening is a common problem, and so if you are able to have sexual relations then that  is a good thing for LS, that said, it is not always that simple, I can have sex, but it is not the spontaneous robust sex that I have had in the past (bearing in mind my husband has to rearrange furniture and seating arrangements, to get the best leverage possible!....it's  bit of a military operation!)  as tearing, and sore areas can occur, and if someone is in a flare, then really I don't think it is such a good idea, as it's best to wait, or you could feel very sore afterwards, and even cause yourself more problems long term.

    Many women spray their undercarriage after using the bathroom, with a mixture of water and a pinch of bicarbonate of soda, and in my experience that does help, however you will need to have something like coconut oil, emu oil, or even vaseline to apply afterwards to keep everything well lubricated, as one of the more serious aspects of  LS is vaginal fusing, which I suggest you should read about, and make yourself as well informed as possible regarding this potential unfortunate symptom of LS, which can often be avoided with vigilance.

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  • Posted

    hi catts

    just to add my good wishes and to appreciate this thread...everything seems to have been said!!

    I was very grateful for the suggestion of avoiding grains...gluten in particular...and thereafter dairy. things have calmed right down for me. x

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    • Posted

      Thanks so much for all ur advice guys.i have watched dr goldsteins webinar and found it very informative as well as all the advice from you guys.im so happy ive found this forum its great to be able to talk and get advice from people who know how you feel.its the first time in a long time im feeling hopefull..xx
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    • Posted

      I am glad to hear it, I waffled on a bit lol!! 

      Lizzie....watch out for instant coffee as well, it is another trigger for me! if you like coffee than making fresh coffee is the best thing.

      Have a great weekend everyone ! x 

       

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    • Posted

      how lovely catts....

      so glad for you!!!!!!!!!!! great to be hopeful and optimistic x

      well i now feel extra encouraged too...so thank you! xx

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    • Posted

      oh yes thanks for that...i went thro a stage of using fresh ground organic as it can be good in some respects...but i since discovered dandelion coffee and coconut milk....

      mmmmmmmmmmm yum...i'm not going back!!!!!

      what do you like to drink guppy? and catts? and everyone?  what are your favourite healthy warm drinks?

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    • Posted

      I love the smell of coffee especially if i pass a coffee shop but never liked the taste unfortunately..im a tea drinker,in our family everythin is discussed over a cuppa..its my mums answer to everything... smile
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    • Posted

      I like to have hot water with a squeeze of lemon, and a dash of Manuka honey first thing in the morning.  At the moment I can't have tea or coffee, which is a pity, for some reason my body has taken against it!  Hopefully I will be able to reintroduce that back into my diet one day soon, I also like to drink  coconut water, and that's about it at the moment..boring really!  
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    • Posted

      Hi guppy

      do u mind me asking about applying the ointment? I do have some pigment change it looks like bruising but i have no white patches.i am only using a tiny bit of cream but im wondering that could i be putting it on the wrong places cause today im very irritated and burning or can this happen from using the ointment anyway?

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    • Posted

      Hi catt,  I have not had the bruises myself, but my understanding is that you apply the steroid cream to the bruised area in much the same way as you would if you had the white patches.   Using half a pearl sized amount rubbed in, or even a full pearl sized amount,  twice a day might work for you, everyone is different!  You state that you have had constant burning even before using the cream, so it is worth giving it a try, sometimes at first it can cause discomfort  for some people.

      It is no use just taking a tiny bit of cream and rubbing it into the area you think is affected, without using a mirror.    Unfortunately, you have to become a contortionist with a magnified mirror in one hand, and the cream in the other,  taking extreme care not to touch the surrounding area of skin, it is tricky for sure!  And If  you can soak in the bath for at least ten minutes before applying the cream, it softens the skin, and makes it more receptive for the cream..good luck.

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