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Swimming pool and lichen sclerosis

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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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  • suedm
    suedm

    Posted

    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

  • hanny32508
    hanny32508

    Posted

    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.

    • donna08161
      donna08161 hanny32508

      Posted

      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.
    • donna08161
      donna08161 hanny32508

      Posted

      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.
    • marey
      marey donna08161

      Posted

      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

    • donna08161
      donna08161 marey

      Posted

      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! 
    • marey
      marey donna08161

      Posted

      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.

    • marey
      marey donna08161

      Posted

      my reply is being moderated....i included many suggestions. i agree with you and think you are doing great! love marey xxxxxxxx
    • donna08161
      donna08161 marey

      Posted

      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?
    • marey
      marey donna08161

      Posted

      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.

    • donna08161
      donna08161 marey

      Posted

      I am not sure what you mean by "armour...from the pig"?  I definitely prefer natural to synthetic as much as possible.

      I visited your beautiful country of Wales in 2012.  Enjoyed my tour very much!

    • marey
      marey donna08161

      Posted

      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.

    • marey
      marey donna08161

      Posted

      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
    • donna08161
      donna08161 marey

      Posted

      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

    • marey
      marey donna08161

      Posted

      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!!!!!!!!!! 

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