I was diagnosed with LS last year finally after months of tests etc. I also have IBS and had been depressed before I retired. I joined an aqua aerobics group which I really enjoyed and it did wonders for my well being. Unfortunately my LS keeps flaring up and I don't know whether it is the water in the swimming pool which is aggravating it or just something I have to accept. Does anybody else have a similar experience? When it is at its worst, I stop going to the pool but then really miss the exercise and social aspect. Any ideas anybody?
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The swimming pool itself does not seem to bother my LS. Hot, sweaty environments do!
I must have read somewhere that swimming is a no-no for people suffering with LS or LP, as I now have it firmly fixed in my mind. However, it seems an awful shame for you to give it up, especially as it is good socially. There are barrier creams that you can use. I use zeroguent which my dermatologist recommended to me and this is a barrier cream as well as a moisturiser, so it would be worth a try!! Good luck!
I found the loss of the labia made it feel as if water was entering me..! I tend to keep away from highly "chemicalled" waters but the application of the GOOD barrier cream is sound advice- if it works for you. I havent heard of Zeroungent so that sounds interesting. Hope you can carry on swimming
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Thank you everybody for taking time out to reply and give advice, what a horrible thing this is! I really struggle at night with it - is that the worst time for everybody else?
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Night is usually the worse time for me too. I think it might be that I don't have much to distract me. When I get out of the shower especially if it's a hot shower, results in me feeling itchy too. As a barrier cream I use
Desitin.,I am in the US. My dermatologist laughed. For me, it calms down the itch. I found two more posts
referring to a nappy cream that they use that provide relief. I concluded that I was not the only one who was
using something like that! I developed LS when I was a teen. I am now 55, so I've had this disease what
seems like forever. In the beginning I was told that I just have discoloration of my skin. I don't think much wasknown about LS back then! I have it all over the front of my body, ( except for my legs) and the same thing on the back of my body. Parts that my underwear cover are especially bad. I also have it all over the outside of
my vagina. I hate it!
I agree, when I am occupied it doesn't seem to rule my life but when I turn out the lights, then it really affects me and sleep is very far away. I really feel for you Mary as I 'only' have it underneath and the vaginal and rectum areas are very irritated. I can't imagine having it in the same areas as you.
I am a 61 year old from the UK and I don't know anybody else with this, so I'll be thinking of you across the pond!
Take care!
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Interesting that so many of us are affected more badly at night. I tend to ignore twinges during the daytime, but nighttime is always very worrying and quite often I feel I haven't slept at all. This is when I use the dermovate, as otherwise I start scratching!
Happy days!
I am soon to be 70 - I can't believe it- I was diagmosed after a particularly stressful time in my life about 6 years ago I find when I have an altercation or a worry, is when the Return of The Itch occurs. It is then day AND night. When The Itch is bad i go without underwear (while wearing a longish skirt). I have long Uggs that keep the legs warm. I too am from the UK - West Midlands, and no one else I know has ever heard of the condition never mind having it. I believe 1:1000 is the stated occurance. I read as there is no profit in the condition for the drug companies very little research -or education is undertaken on this horrid condition. I do find it helps to be part of a discussion as friends are uncomfortable talking about it, altho I do try and get them to look at themselves routinely and encourage their daughters to do the same, So thank you all, and especially Mary who seems to have an unempathetic dermatologist and the condition is wide spread
Try a good brand of coconut oil I get mine from Costco ..it must be cold press... I use it when ever my Lichen starts up and it makes it feel much better......I also do not use any soap, I bath with baking soda ... I also stopped eating most anything made from flour.. I have never used sugar on anything but, do like coffee mocha,...... so now have them at home...I am 71 came down with this in 2008, but did not know what is was till 2010....... Have a wonderful husband, who understands ... I also do apple Cider Vinegar sit baths and drink ACV in my water I think I have in well under control as of now ....I have thyroid problems ... which may have brought it on, that is also under control now .
Pow
Hi there nismo09, thanks for this. I also use coconut oil (cold press) but just a common and garden one when I can find it. Is it a Costco own brand which you use? It is amazing how many people (women) seem to have to adjust their diets to cope with LS - I wish somebody in the medical profession would do some research along these lines as it all seems to be trial and error! Glad you can control it - it seems a shame that very few of us can get a diagnosis- what a strange condition it is?!!
It is so good to read from others who have LS. I have only just been diagnosed and apart from using dermovate every night for first month and then every other night for second month I have no other information other than to use aqueous cream to Cleanse after going to the toilet - suggested before diagnosis. I didn't know diet could be a factor and I do like a glass or two of wine. Am not overweight but believe mine is as a result of taking Aromasin. Good to hear that the white patches can disappear but do you still have to use dermovate or is that just when necessary. It is all so confusing. Should I talk to my Dr and am I supposed to be under a specialist now? Sorry but I have no follow up arrangements in place and a bit worried after reading some of the threads.
Oh Twigs I know just how you feel - no one gives much away- mainly because i dont think there IS much to give away yet! The Dermovate is a very potent steroid so they suggest not using it too liberally - a pea sized lump was suggested at Birmingham,(UK) but use it WHEN EVER the symptoms are bad and reduce the amount you use it as the symptoms improve. Don't use smellies in the bath or shower to wash your bits with - it can set up a reaction and exaserbate the symptoms. Use your aqueous cream to wash with. Dont let urine stay on the skin it makes matters worse- or mentral blood for that matter
There is a theory that poor thyroid function is associated with the condition, which is believed to be an auto immune condition- like some forms of arthritis asthma psoriasis etc. The body some how "attacks" itself in our case absorbing the labia, and other stuff - The Itch etc. You should be seen every 6 months at least at first by a consultant then the GP if all is quiet down there. You should look at yourself frequently using a mirror and get used to what you look like and then REPORT any changes to the GP/ consultant asap. Being stressed is a no no! Read back the comments others have made, see if there is a support group near you Dont be afraid to ask your GP questions and ask to see a consultant if you are not doing so already . Be careful about reading the horror stories, that is just what they ARE very unusual and not the norm for most people
Best of luck
SueDM
Hi all,
I've done some more research as to who or where studies are done on LS.
For one: There is a Dutch Lichen Sclerosis Society/Institute. They even have an award for those scientists who study this illness. And have awarded a group of scientists already. They haven't found any answers yet, but are asking some good questions for starters.
Furthermore: There is a doctor in the Vancouver area who apparently has held lectures to interested doctors about LS. And no, it is not as rare as one may think, this doctor writes. It is 1 in 30 elderly women, and 1 in 59 in general who get/have LS. She encourages doctors to pay attention and try to detect as early as possible. Plus she asks for regular check ups. Whether things are happening because of her effort I do not know.
If there is anyone here who can enlighten me more, please let us know.
Well done Hanny for all your research. I always believed the ratio was 1 in 1,000, so I was way off the mark. Just goes to show that there are plenty of us around, but sadly so many who have no idea what is wrong with them!
Thank you!
I was diagnosed with LS a couple of months ago and apparently, my doctor knows nothing about this disease, because he saw me 4 times before finally referring me to a gynacologist, who immediately diagnosed it as LS. I was prescribed a steroid ointment called Clobetasol which cleared up the itching within a few days. I continue to use it now after 7 weeks, but I am tapering off slowly to once a day instead of twice a day. I will hopefully be able to stop using it after a few more weeks. I have been told not to use any soap on the area affected, but only warm water. Also, I have changed my diet and no longer use dairy, refined sugar and am gluten free. So far it is all working well (fingers crossed). I am wondering if you know the name of this doctor in Vancouver? I would like to contact him/her, as I live in the area. (assuming this is Vancouver BC?) I have joined a world wide group of people with LS and sharing the information has been very helpful. I was so scared when I got this diagnosis! I am 70 yrs. of age and had never had these issues before. I have Hashimoto's (Thyroid condition) and have had one lobe removed. I know LS is an autoimmune disorder and probably passed on genetically! They say if you have one autoimmune disease then you probably have at least one or two others. I also have Rosacea, another autoimmune disorder. I will write again with the name of my group and their email address, in case anyone else might be interested in joining. Lots of wonderful, informative advice and compassionate members.
Hi, its Donna again. I got the email address for my LS support group. It is: LichenSclerosis@yahoogroups.com Great information if anyone else is interested in joining. It's been a life saver for me.
can you find a pool that is not treated by chlorine? I think ozone maybe one method....apparently some private pools use other means.
I hope you can begin the exploration for your cure. I've had some improvement by avoiding all chemicals and following a NUTRIENT DENSE diet excluding gluten, taking only fermented organic unpasteurised dairy in the form of full fat yoghurt, and organic stilton ...everything organic and chemical-free, working on autoimmunity to heal intestinal permeability 'leaky gut', and addressing my thyroid and hormonal issues. there are a lot of resources out there for your journey into exploring your health. I am sure you will get there. Thinking of you let me know how you get on.
love marey xxxxxxxxxxxxxxxxxxxxxxxxx
Hi everyone,
For some reason I had difficulties responding to your messages. But all of a sudden it works again. So here it goes...
Donna in Vancouver: De doctor's name is Elizabeth Stewart. I hope you can find her. And ... please let me know about the group your are forming in BC.
Hanny.
Hello Barking
Dont know if that's where you live but if so I live in Romford and have had LS for about 12 years although I didn't realise it thought it was old age I am 70 now. as for not sleeping through being itchy I take 1 Piriton tablet the pack that has 30 in is better value . They give me a good nights sleep.