Lichen sclerosis any advice?

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Hi I'm 46 and have been diagnosed with LS for approx 8 months. Can't seem to get it under control and despite using hydro mol, and both steroid creams I find I am now in a worse state than I have been for sometime. In tears every time I go to the loo from pain both front and back. Can't use the steroids as I now have raw sking and it stings. Been recently on antibiotics and wondering wether this has had a worse effect although reading about this does not seem to cause a problem. I have scarring and the piece of sking between both areas in now extremely sensitive. Been to see doc and dermatologist but never seems to co inside with a bad outbreak. Haven't had sex for months now which is also depressing as worried about husbands need a even though he is very supportive. Just can't seem to speak to anyone who understands. I've also got vitiligo apparently this can be linked or is seen to be linked to LS as an immuno problem but nothing else. Can anyone help with any suggestions for relief?

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  • Posted

    Hi there' I do feel for you, I had one very bad breakout, but have managed to keep it under control for 4yrs now.

    I use Dermovate cream every morning after a gentle cleanse with E45 shower cream, and a very gentle soft towel dry.

    This has worked for me.

    You could also try Perrins Blend cream it did make mine clear up completely for a while, but only use the cream coloured one, if you look online, the site will give you all the details you need.

    I wish you lots of luck, and I'm sure you will get it under control soon, just hang on in there. As for the sex thing, I guess you have to get a bit creative, which I expect you have done already, take care Jo.

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    • Posted

      Hello Josephine I am 76 and gad LS for about  9-10 months I also have Vitiligo and under active Thyroid both these and LS are Auto Immune diseases 

      I am in uk  I used Eumovate steroid cream 

      and also wash with Double base gel 

      theses were recommended by my Gyneocologist 

      i was also told only white toilet paper no softener when washing clothes only Fairy or Persil soapowder non bio of course 

      don't wear knickers but if you feel you have to must be white cotton no panty liners if you in uk you can get steroid cream and double base gel wash on prescription 

      at the moment I have no problems and the gyneo lady is very pleased with that I also have a collapsed bladder for which I have to wear a pessary so I gave to be very clean 

      the sex bit I am widowed 23 years so no longer have that pleasure 

      I hope maybe some of this May be some help to you

      janette

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    • Posted

      Hi Nanette can you tell me the reason for not using pantie liners? I've been using them to ensure nothing untoward touches the skin. Thanks.
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    • Posted

      Panty liners don't let your skin breathe. Sweat is very irritating to LS. Better to put Vaseline on your skin to keep fluids off it.
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    • Posted

      OK that makes sense. I'm using them to make sure nothing like soap powder, nylon gets near me. I have only just been diagnosed with LS and the doctor didn't give me any information about it. I was just given 4 sheets of paper she printed from the internet, didn't even tell me that I would have it forever! So I'm having to find out for myself. Everytime I find out a bit more I go back to her, luckily I have private insurance so asked to be referred to a specialist as I frightened of the cancer aspect as well. She thought that was a great idea, shame she didn't suggest it but that's probably because the NHS doesn't have any money. Anyway he was very kind and I'm having tests and a biopsy in January.
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    • Posted

      You're having a biopsy because the gynaecologists thinks there are bad cells? It's highly unlikely that any of us here will get squamous cell carcinoma of the vulva, because it's very slow-moving and with checkups every six months they'll catch it as soon as there are even a few bad cells.

      I ask because some doctors do biopsies for LS even when the diagnosis is obvious. I would question that because the trauma of the biopsy is bound to trigger a flareup of LS (the Koebner effect).

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    • Posted

      I disagree after researching this pathology. A biopsy is said to be the only accurate way to diagnose this condition because it can look like other problems like yeast infection. Yes, it does hurt a bit and may cause a flare up but if you use the soothing ideas people shared it will heal. I used warm NOT hot water flushes several time a day with the creams.  Stay dry if possible. It is OK to use pads if you need them but only cotton pads. This condition is made worse in a wet or damp environment.  A review I did of medical literature is not conclusive in relating this disease to cancer. There is not proven link nor any definitive proof it plays no role so best to be checked at least yearly. I would suggest that readers who are not getting good results from comfort measures and current meds should have a biopsy to confirm their diagnosis if this has not already been done.
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    • Posted

      Well, that sounds like you know what you're talking about. I would never recommend refusing a biopsy. I would just want to know exactly why they want to do it.
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    • Posted

      That is good advice. We should always understand our medications, procedures, tests and diagnosis. 
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  • Posted

    Hi Scottie, you're sure in a rough patch! The best thing about LS is that it comes and goes. I'm 62 and wasn't diagnosed till a year ago, even though I realise now I'd had it my whole life. My experience was that perimenopause (late forties) was the worst time for me. My perineum (that stretch between the vagina and anus) is the part for me that goes white and tears easily, which is what stings when I pee. I was prone to yeast infections if I had the least bit of friction, so there went sex with that husband. I had a second wind with lots of good sex in my fifties, though and found another guy who's affectionate and understanding.

    I'll give you the summary of what works for me.

    Use the Clobetasol (Dermovate in UK) – assuming you've been prescribed by a gynae or a dermatologist and not lower-dose creams by a GP – more often when it's bad and taper off to no less that two nights a week. It's meant as a consistent low dose, not as a temporary treatment of symptoms.

    Keep your bits greased up with your favourite stuff. Some girls with flare-ups eveb grease before each pee. Some rinse with cool water after peeing to get rid of that irritant.

    No hot baths, no soap of any kind 'down there', no synthetic pants, wear loose clothing or even a skirt. Many of us blame sugar – for me it's chocolate. The red area around the back gets a lot angrier if I have chocolate. Try to keep the whole area as dry as you can.

    I do think antibiotics may have got things stirred up. In a way that would be good news, because it may calm down afterward. Sex will irritate unless you are in a good phase and use an excellent lubricant such as 'Yes!'

    You've come to the right place. Do look through the topics below this one. There's a wealth of good-humoured support as well as hints & tips. I really hope this is a bad patch that will resolve soon. Glad you came.

    Morrell

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    • Posted

      Thank you for going through what you and others do. I only found this site last week. I wanted to know if others are experiencing weight gain using steriod cream as I've suddenly started to gain 2 pounds a week on a regular basis. I never read the contrindications on meds because you'd never end up using anything but I have looked and it does mention weight gain, I wonder how common this is or I'm just the lucky winner!

      I wanted to find an alternative as I'm still having to use steriod everyday. I tried using the coconut oil and it was fine for a couple of days but last night it started to burn me.

      Also thank you for the recomendation of 'Yes' I'd never heard of it but will diffinately put it on my Christmas list ;-)

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    • Posted

      What is the concentration of steroid in your medication? If less than 2-3% it should not make you gain weight. Oral Steroids are given for other diseases and they can make you gain but it would be uncommon with an ointment. Then you never know. Everyone is different. Good luck and avoid sugar.
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    • Posted

      Hi I will have a look when I get home and see what concentration the is. I have been avioding sugar as much as possible and haven't had a 'obvious' sugar e.g. cakes, choc, sweets, ceral, alcohol etc. which is why I'm shocked at the weight gain.

      Thanks.rolleyes 

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    • Posted

      Oh, no, impossible! My mother ballooned on oral prednisone for rheumatoid arthritis, it's really bloating, not fat. So, if you google side effects of steroid meds you'll read about weight gain. But the few square inches we apply this stuff to isn't enough to make any difference. There are very serious cases of LS and psoriasis where many square FEET of skin are affected and people use TUBS of topical steroids. So, we need to keep perspective here. Since it's pretty much all we have.
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