Just Diagnosed Lichen Sclerosis
Posted , 54 users are following.
Hi Last week I had a biopsy and 3 days later it was confirmed I have Lichen Sclerosis. Ihad never heard of it until now,and I still feel as though I know nothing about it apart from the horror stories that I keep reading about on the internet. I feel so alone as I dont feel as though I can talk to anyone about it (apart from my husband, who is poorly with Multiple Myeloma so I really dont want to add to his worries) I know there is no cure, but is a normal life possible? will I always feel as though I am sitting on needles?
I feel I should be doing something to make people aware of the condition, does anyone else
Regards
Sue
3 likes, 136 replies
iblamecoco
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Itchy_person
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Jeepers
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"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
iblamecoco
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Suean
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Big Hugs
Sue
bunty
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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??
Itchy_person
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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
Jeepers
Posted
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.
lablover
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Thanks for listening, its just not something I feel ready to discuss with friends yet
Jeepers
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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
lablover
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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
bunty
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Jeepers
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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.
Clareyclareclare
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bunty
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