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Swimming pool and lichen sclerosis

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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  • all the kings horses

    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!

    _ 0 votes F Report Share < reply to all the kings h...

  • suedm

    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

    _ 0 votes F Report Share < reply to suedm

  • Barking

    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?

    _ 0 votes F Report Share < reply to Barking

  • mary 58782

    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!

    _ 0 votes F Report Share < reply to mary 58782

  • Barking

    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!

    _ 0 votes F Report Share < reply to Barking

    • Holiday girl »Barking

      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.

      _ 0 votes F Report Share < reply to Holiday girl

    • Barking »Holiday girl

      Hi there Holiday girl, I used to work in Barking but live in Leigh on Sea. I am 61 and have had LS for the past 2 years (well another 2 years before it was diagnosed). I have had some nasty flare ups but with Dermovate and Elocon I have managed a bit of an uneasy truce for now! I have also used various anti-histamines to counteract the itching at night. I wash with Dermol and then apply Epiderm cream once dry when not using Dermovate. I also try to splash myself with water after weeing as the urine stings like mad. It is such a palaver trying to balance all this but I have yet to discover if anything in my diet triggers any flare ups. How about you? Do you see a gyny/dermatologist?

      _ 0 votes F Report Share < reply to Barking

    • Holiday girl »Barking

      Hello Barking, bet you prefer Leigh-on-sea to Barking. My son lived there but moved to Southend much better. My LS was diagnosed when I was referred to Queens for a smear test cos it kept coming back not good, but as soon as the lady saw me straight away said what my problem was as I was so sore down below and got a quick app. To see the consultant who confirmed it and arranged for a biopsy to be done which said yes definately. I had suffered for a long time not knowing what it was had been told it was thrush, castitas, old age and had used different creams like Lanacan to ease the itching but nothing worked long term. I use Dermovate occasionally if I feel a little twinge and wash with Hydromol ointment down below then smear it on afterwards and so far so good. I have a checkup booked for September. Some of the stories you read on here are really bad so I am grateful mine isn't like that. I think it should be more talked about and notices in doctors to make women more aware of what there problem might be. Well hope you carry on feeling ok x

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    • nismo09 »Barking

      I have been able to stop useing the staroids now for over  four months  ...I use cold pressed cocnut oil that I get from Costco, because they have the best price... you can use almost any brand that is cold pressed .....cocnut oil is a natural antibiotic  ..you do not need to melt it  I keep it in the bath room in a jar with lid.... put is on  befor and after going potty I also do a sitz bath with a sage tea that i grow in the yard... that works great ...twice a week... stoped eating all sugar cut back on high oxalate foods... no more wheat.....I am doing good .now.. have had this for 5 years now ...was real bad at first 

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  • all the kings horses

    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!

    _ 0 votes F Report Share < reply to all the kings h...

  • suedm

    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

    _ 1 vote F Report Share < reply to suedm

  • nismo09

    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

    _ 0 votes F Report Share < reply to nismo09

  • Barking

    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?!!

    _ 0 votes F Report Share < reply to Barking

  • Twigs

    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.

    _ 0 votes F Report Share < reply to Twigs

  • suedm

    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

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  • hanny32508

    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.

    _ 0 votes F Report Share < reply to hanny32508

    • donna08161 »hanny32508

      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.

      _ 0 votes F Report Share < reply to donna08161

    • donna08161 »hanny32508

      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.

      _ 0 votes F Report Share < reply to donna08161

    • marey »donna08161

      great to hear of your progress donna....think you re right on track. Its hard to keep up with the diet don't you find ....or are you managing to be strict? I'm trying supplementation now for my thyroid ...see if i can get that back in shape. thanks for sharing your experience so far.

      love marey xx

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    • donna08161 »marey

      Hi Marley:  Actually, as far as my diet goes, I'm doing OK so far.  I think this health scare (Lichen Sclerosis) has helped me to keep on track with what I eat.  (Not to say I don't sometimes miss certain foods that I love!)  I used to be on Synthroid for several years after my thyroid surgery, but my new doctor decided I didn't need Synthroid anymore and took me off it.  In retrospect I think he is wrong and I'm going to look into getting myself back on it again. I feel that we all have to be our own advocate when dealing with doctors these days.  I just keep researching and learning everything I possibly can about this awful disease.  Sharing info with each other is so helpful, and maybe one day we can figure it out and come up with a cure or a prevention.  Wouldn't that be wonderful! 

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    • marey »donna08161

      hi donna

      yes it would be wonderful! seems there are cures out there however.... a friend of mine cured herself by detoxing supplementing and taking botanicals. she's written a book which is on the way to being published. another fabulous resource i've just found is izabella wentz....the _____ (link broken) ...she advises of 7 supplements to subdue hypothyroidism. These are IODINE...apply onto skin so body can absorb what it needs...care is needed with iodine as can tip the condition ZINC, SELENIUM,  VIT D,  B12,  HCL (or betain with pepsin digestive enzyme) IRON (ferritin ...I use - or rather have just got - gluten-free floravital... which offers all the precursors to iron as iron needs care but is the thing which stops your hair falling out!!).

      i note you had a partial thyroidectomy. did you have Graves Disease ...hyperthyroidism...previously? Did the op tip you the other way? That sometimes happens....so sorry...BUT you are absolutely on the right course now. Also you have a brilliantly positive attitude. both extremes are manifestations of autoimmunity. have you checked out 'thepaleomom' ? she's brilliant on autoimmunity. Are you paleo now? I have been for quite a few months but am thinking about trying the AIP the 'autoimmune protocol' ....looking for a buddy to keep me company as its a tough one....needing high organisation.....groan!!

      Patient Moderator Note: Removed broken link.

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    • donna08161 »marey

      Hi Marey!  Thanks for all those great suggestions!  I've made note of them and will take the list to my health food/vitamin store and talk to one of their knowledgeable clerks.  In answer to your questions, I had Cancer in the left thyroid lobe about 15 years ago, thus the surgery.  I was told at the time (by an Endocronologist) that I have Hashimoto's disease and was prescribed the Synthroid, but I was taken off this med  a few years ago, and I am not sure that I should have been?  I am eating (almost) Paleo.  Hard to find grass fed beef and poultry, so I'm not totally Paleo!  I'm feeling a lot better for following this way of eating though.  I live in a small town on the west coast of Canada.  Where are you?

      _ 0 votes F Report Share < reply to donna08161

    • marey »donna08161

      hi donna

      i'm in wales uk. Gosh the woman who cured herself is in Canada...what a friendly lot you are! Sorry about the Ca ...its poss that the remainder of your thyroid could compensate however but if you have hashi s then theres the autoimmunity...which you are so ably addressing. well done. Donna would you like to try a more natural form such as armour...from the pig generally. It will offer you more support also for you T1 and T2. You may find that you can reduce the dose once you build up your supplementation in the first instance until you can get what you need from your diet. I am inexactly the same place at the moment. I can tell what my deficiencies are but I want to find somewhere to get the lab work done so i can monitor progress.  love marey xx

      ps it was the   _____    I don't know if we're allowed to give out info but trying again to see! 

      Patient Moderator Comment: I have removed an URL (a link) from this reply as it is not suitable for inclusion within these forums. If any user is interested in this removed information then please contact the author via the Private Messaging system. Thank you.

      _ 0 votes F Report Share < reply to marey

    • marey »donna08161

      This reply has been deleted.

    • marey »donna08161

      oh how wonderful that you came to see us!

      there is a natural form, as opposed to the synthetic such as levothyroxin and Synthyroid...with which you are familiar, in keeping with the philosophy of using the whole of an animal the parts of the thyroid from pig or cow (but please reject horse they are abused for this therapy) can be used in a dried form and work well in supporting human thyroid. google Dr Mercola and thyroid and listen in to his great advice. Dr Hyman is brill too and many others..in particular the thyroid pharmacist.

      _ 0 votes F Report Share < reply to marey

    • marey »donna08161

      i should emphasize the need to treat yourself with iodine first. iodine (wiped onto your skin so the body can control its absorption), with co-factors and especially unprocessed salt...which we do not have enough of, CAN ACTUALLY resolve hypothyroidism. Check with Dr David Brownstein on this point. He sends out a brilliant monthly newsletter and has various comprehensive books....very patient focused. You need to understand that taking thyoxine without sufficient iodine can lead to cancer (again). Depletion, of iodine, may have been a causative factor for you previously. I confirm it is poss even with only part of your thyroid to produce enough thyroxin naturally...but you must have sufficient iodine...in the presence of good nutrition and the co-factors which I've listed for you ...per the thyroid pharmcist. Hope that helps. We are all terribly iodine deficient...and bromine and chlorine poisoned! I'm finding all this out as we speak but remember stuff from my training too. Functional medecine practioners are the most informed with the latest info. MD's can't keep up or may only tell us the TSH results TSH comes from the pituitary its levels rise as the thyroid appears not to be responding.....hence its name thyroid stimulating hormone....we need the info about thyroxin levels and more. Plus focus on nutrients. Vital also to shore up the gut before trying to detox...otherwise toxicity enters the bloodstream through the gut route and we're worse off! Trust this makes sense...so the advice is to make nutritional adjustments before reverting to thyroxin by building up your iodine and salt levels plus the other co-factors

      _ 0 votes F Report Share < reply to marey

    • donna08161 »marey

      Gosh, I am so grateful to you Marey, for all this helpful information!  I have re-read your message several times to make sure I understand what you've said.  How did you get so much knowledge on this subject?  I'm in awe!!

      I will definitely take your advice about the iodine and other tips.  Thank you so much!  Donna

      _ 0 votes F Report Share < reply to donna08161

    • marey »donna08161

      you're welcome donna.

      are you interested in a 10 day nutrition boost with built in support? I'm going for it before i get into supplementation with thyroid meds to see what my body can do with help. it'll be about £100 via dr axe.would love it if any of you were to follow it too. what about you hanny as well? access via subscription to dr axe....come on girls lets get healthy!!!!!!!!!! 

      _ 0 votes F Report Share < reply to marey

  • marey »Barking

    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. Try 'thepaleomom' and dr mercola for resources to help you understand this autoimmune condition. 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 

    _ 0 votes F Report Share < reply to marey

  • hanny32508 »Barking

    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.

    _ 0 votes F Report Share < reply to hanny32508

  • marey »Barking

    chlorine in swimmimg pools is one of three halogen gases....together with bromine now in commercial baking products it replaces iodine in our bodies. But if you wipe some iodine onto your skin when drying off that would help. Personally I'm looking in to getting a filter for the shower as think chlorine is a significantly detrimental chemical that I want to try to remove and that is contributing to my low thyroid.. 

    _ 0 votes F Report Share < reply to marey

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