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  3. Lichen Sclerosus

Just Diagnosed Lichen Sclerosis

  1. Hi Ladies

    I was 47 when diagnosed two years ago and I'm dreading the menopause in case things get worse, thought I might opt for HRT. I've tried the Propolis cream I got and will persevere but it's a bit stinky! Also just received Emu oil this morning, my clitoris fused so will see if this helps. I'm still getting some new rashes with the LP, but can usually attribute it to something I've eaten - so hard to be 'good' all of the time. It's not nearly as bad as some photos I've seen of it though, so hoping I'm not going to get it too bad just now. It's great having this forum to read through everyone else's situations and discuss it all. Keep talking and thanks. Hugs to all. x Liz

  2. Hi Joodie will try Yahoo but will still keep intouch on here, you sound a lovely lady. I also feel very alone as Im nursing my husband at the moment.

    Sue

  3. Liz you have got me laughing at you with your stinky propolis. You won't likely be put off the emu oil after that then, lol.

    I don't know if it will help unfuse your clitoris though, as it's really good at keeping the skin sof tand supple and less likely to tear or hurt - but the thing for unfusing is oestrogen, that's if you can get a UK doctor to prescribe it. It's not safe for people with certain conditions, which lets me out, yet a respected US physician, who has LS herself, says used topically in small amounts it will do no harm. Usually it is used along with a smaller dose of testosterone. The Oes. unfuses and the Tes. strengthens.

    Sue, I looked up myeloma before coming on here tonight and I can see how much you are coping with. I'm sorry your husband has got this and I expect you are putting him first, so it is doubly hard for you.

    Is there a myeloma support group in your area at all?

    There won't be an LS support group I do know, but at least we can come here and give each other a bit of support. There must be others too who are alone with this affliction.

    Hope you all are having a calm non itchy night. It's goodnight from me. x

  4. Hi,after being misdiagnosed as having thrush for 30 years i was finally referred and, yesterday, was told that i probably have LS - for 30 years!!!!!! I will have a biopsy next week to confirm. I feel so angry that this has gone on so long without a correct diagnosis. I knew what it was before my GP! xx

  5. I know how you feel, I saw two different GP's at my medical practice and one asked if my rash could be fleas and the other gave me a prescription for scabies treatment, even though she said it wasn't that - she just wanted to rule it out. They obviously never read my notes or surely they would have linked it to my hospital diagnosed lichen sclerosus. I had to make the link myself. What a waste of money training GP's, they fail to recognise anything. I hope you get relief from dermovate and dermol lotion for washing with. I have tried Propolis cream instead of the steroid cream, but for me the steroid cream works straight away and nothing else does.

  6. I have LS, I don't have much of the redness/soreness but most of my vulva/anal areas are turning white and it makes me very sad. I feel disgusting and embarrassed and I don't know what I am supposed to do. I feel like I will never have a boyfriend and never have the chance to have my own family. I hate it.

  7. Hi there,

    How long have you had it? The way you are feeling sounds all too common - I think we all go through times of thinking like that and I take it you are young if you are worried about having children? It may not get too bad, I was diagnosed 2 years ago, (I think I had it for a while before that) and even though I've had tightness and fusing, I can still have intercourse. It's tricky sometimes and we have to give up, but not always. I have to put cream on straight after but by the following day it feels better again. Hope this info helps.

  8. I'm 21 and have had it for about 5 years, it's got worse these past couple of years - making me feel worse about it. If it was just the soreness I could deal with it, but the discolouration repluses me. I won't talk to my friends/family about this and it's certainly not something I'm prepared to talk to a guy about so I know that any future relationship is probably impossible. There is nothing I can do to regain the colour so I'm stuck looking this way for the rest of my life. It destroys myself esteem and I just don't need the upset it causes me sad

  9. We've probably had it for about the same length of time. Do you still see your doctor about it, they may recommend something to help. I know you are young and worried about future relationships, but if you don't mention it, then your partner probably won't either - after all we don't all look the same facially so a guy might just think we're not all the same down there either. Have you tried emu oil? It feels really nice on as it makes the whole area soften and if you were to massage it in frequently, the colour may start to look better. To me, if I can still have intercourse sometimes, I'm not too worried about how it looks. I know it's a horrible thing to have, but at least due to where it is, not many people need to know about it.

  10. Hi you guys. x

    "Iblamecoco", please do not be repulsed by your body's appearance. The whitening is fairly common in LS. I know it is a cruel disease, but it's still your body and it's your immune system fighting in the wrong place, but it's also still part of the no doubt lovable warm person you are, and it is that same person who has a life to live, boyfriends to find and a loving relationship one day with the father of your future children.

    The discolouration of your skin, no matter how private a place it is in, will not matter one jot to a guy who is attracted to you, I promise you.

    If you don't seem bothered by it, neither will they.

    Meantime, till you get your confidence, just keep the lights low. It's more romantic anyway.

    Always remember that LS is a horrible disease that affects ordinary people but it is not an ordinary disease that affects horrible people.

    Wish yourself the best...as I do . x

  11. Thank you everyone for your kind words, you're an inspiration really. I wish you all great health and keep up your positivity. I hope one day I can feel the same as you do.

  12. Hi I know how you feel, I was only diagnosed a few months ago, and i felt terrible. At first I was on the internet everyday looking at different sites, how wrong I was to do that, my advise is to take a step back one day at a time, and dont look at all the horrendus pictures on some sites, most are worse case senarios, you never see pictures of people who look normal .Concentrate on your symptoms not everyone is the same. Its the same with the clob ointment at first i used as my GP stated which didnt help me, I still use it but to what suits me and my symtoms at the time, and most days i feel better about myself, so lets fight this horrid thing together

    Big Hugs

    Sue

  13. Hi Sue,

    Last August I saw a consultant and was diagnosed with lichen sclerosis and prescibed a programme of dermovate twice a day for three months and then reducing to once daily. I was followed up after this treatment 3 months later and everything was fine and discharged into the care of my GP. after 6 months I started to get sore again and was referred back to the consultant who has now diagnosed me as lichen planus.The problem is only in the vulval area and I complain of soreness rather than itch. The treatment for this is trimovate and is not making any difference to me. MY real point is which is it better to have lichen sclerosus or lichen planus? does any one know??

  14. Hi Bunty (and others)

    I was diagnosed LS over two years ago and like you, I did the dermovate as prescribed and it cleared up. This year I had itchy rash on back, arms and legs and 2 drs did not connect it to the LS but I think it was LP and it cleared up after a few months only for the LS to come back worse than ever. I've been struggling on with it myself and have tried dermovate - which is not working this time, emu oil which does make the area feel a bit better but doesn't clear it up, propolis cream which did not help at all, aloe vera which stings when I put it on and sudocreme - all to no avail. I've an appointment to see the dr at the end of next month - can only get a quicker appointment if I sit and wait as an emergency and have been reluctant to do so, but may have to. In answer to your question, which is it better to have - I'd have to say neither, but I do think for me the the LS is harder to bear being the vulval area as the discomfort is making me climb the walls. I have ordered Terrasil cream from the internet this morning, while I was in tears due to this awful disease. Has anyone tried this?

    Sorry to sound so down. but I'm at my wits end with this.

    Liz

  15. Hi Bunty - hate to have to say this but many doctors in the UK haven't a clue about vulval LS or LP, and personally I think you should be having dermovate for either of these, and think a consultant would agree.

    The symptoms are the same though the cell structure (as shown by biopsies) are different.

    Apparently LS is only evident on the outside of the vulva or the "rim" of vestibule area, whereas LP also occurs inside and can affect the vaginal canal itself. I have a permanent sore bit just inside the vulval area, along with the usual itchiness and soreness etc.

    Hi Liz, sorry you are going through a tough time just now . I know we are all different but take care to just use small pea size amounts of steroid cream ( or ointment which is less irritating tformany peole ) as too much can cause flare ups.

    For me it helps if I do the lukewarm/tepid baths with E45 bath oil in it. That can usually buy me more time before I need to use the dermovate again, a day at least.

    I even use extra smooth pieces of cut off sheets to make a pad to sit next to my skin. Every little helps - lol - as they say.

    Hope you feel better soon.

    x Joodie.

  16. Hello to everyone. I have been diagnosed with LS this week, though looking back have had symptoms for many years. My elderly mum aged 85 has also had it for 10 years. I am 45 and having spent days looking on the net am now terrified!!! A lot of the skin around my clitoris and labia is white but I also have dark red patches too. The steroid cream doesnt seem to be helping as yet, and the idea of using this long term makes me feel sick. Its good to hear that you can get relief from other sourses though, can I ask where you get the emu oil from? I am currently awaiting thyroid and diabetes blood tests, so fingers crossed all is ok there.

    Thanks for listening, its just not something I feel ready to discuss with friends yet sad

  17. Hi Lablover and welcome.

    That's great that you are having tests for these other things too, especially as thyroid problems are auto-immune related as are LS and LP.

    You can get your emu oil from a number of places especially Australia and New Zealand of course, but mine came from Swansons in USA. They have a big free range emu farm there. It's not cheap to start with but lasts a long time as you only need smears of it.

    I understand you can get pump action containers. Mine is in a squeeze out container and came out in great wasteful globs, but I transferred some into one of these little bottles you can buy in Boots and I just stick my finger in the rim of the bottle and turn it upside down and shake....out comes just enough.

    If you are using a strong steroid, best not to apply it too soon after the emu oil, as it will penetrate deeper into your skin along with the oil, and you just need it on the surface really.

    Sorry you've got this too, and I hope you'll feel better once you work out the best action plan for yourself.

    Take care.

    Joodie x

  18. Hi Joodie,

    Many thanks for your message, its good to know that someone understands what youre going through. Doctors may have read about it but they havent experienced it. I will try and sourse the emu oil.......anything is worth a try. I am angry at myself for leaving things so long without consulting a GP.Fortunately my doc was very fast in diagnosing, but my delay means that the skin around my clitoris is almost fused now. Not sure if this can be reversed, afraid to ask.

    I will let you know how things go after the blood tests etc xxx

  19. Hi all fellow LS or LP sufferers.Having been diagnosed with LS initially then on my 2nd visit to the consultant the diagnosis was changed to LP. Triimovate did not work but I persevered for 7 weeks then decided to go back to the dermovate daily for the 2 weeks before my appointment with the consultant.. This did improve things but to my horror my consultant now tells me that I have both.I have started to just use the dermovate twice a week and this seems to be better but it does feel very sore sometimes.It would be nice to think there would be a cure.

  20. Not surprised you have both, Bunty, as there is a strong connection - but is that an opinion formed from a visual examination or is it a biopsy result taken from different sites of untreated skin?

    No matter. The treatment is the same. I was given that trimovate too at the start - virtually useless it was.

    Oh yes, a cure, ple-e-e-e-e-ase. Unfortunately LS and LP are still rare enough, so they say anyway, not to warrant much research into them.

    Having said that, I have heard of estradiol and testosterone being applied topically to cause reversal of fusing and plumping up of the vulval area tissues. That is varying degrees of reversal and the clitoris is apparently the hardest to improve....still it is encouraging and some claim excellent results.

    Lablover will be interested in that too.

    That's in the US, not the UK where we are still in the dinosaur age with these diseases.

    Maybe it is because we have the NHS but in the US much money is to be made out of finding treatments for well-off patients.

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