Lichen Sclerosus

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Would like to link up with anyone in Ireland who has or thinks they have the symptoms of lichen sclerosus. It is proving next to impossible to find a treatment for lichen sclerosis in Ireland although judging from the postings on this forum many people have been diagnosed with this condition in UK and US.

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  • Posted

    A list of other tips that help when itchy:

    Add a little 'Doublebase Emollient Bath Additive' to a half cup of luke warm water, sit on toilet and pour on yourself.

    Wear loose trousers, or skirt preferably.

    Wear cotton pants.

    Do not use coloured toilet roll.

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  • Posted

    hi i have lichen sclerosus and live in ireland there is no support system here would love to chat
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    • Posted

      Hi i know this is an old advert but i too looking for support with LS. I live in ireland and dont no of anyone suffering from this. I would like to chat to someone suffering from this and how they are coping.

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  • Posted

    Hi Ladies, was just wondering if you still interested in chatting about Lichen Sclerosus?? I live in Ireland.
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    • Posted

      Hi molly i know this is an old post but im just wondering how you are doin now as i live in ireland aa well and im havin a bad time of it lately.my dermo has told me i have ls and possibly vulvodynia.
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  • Posted

    Hi. I from tyrone. I know were you are coming from. I have just been put on steriod tablets again to manage this outbreak.  My consultant says I have a very agressive form of lichen planus and linchen sclerosis.  Oral steriods are the only things that help my flare ups. Any number of creams do nothing for me. My consultant is on about starting me on a long term immuno suppressant drug that they use for transplant patients. It has its side effects so not sure how I feel about this. 
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    • Posted

      hi edele, what drugs are they putting u on?? ive never taken steriods for LS, have they any side effects?

       

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    • Posted

      Hi Molly

      Firstly the steriods have their side effects which is weight. the cravings for chocolate biscuits which i never eat as i dont normally like them is worst than the cravings you get when pregnant. i have put on a stone in weight since being on them. they are the only thing that helped me.

      the drug they are on about putting me on is Cyclosporine. Cyclosporine is an immunosuppressive drug that was first used to help prevent rejection in organ transplant patients. Cyclosporine suppresses the immune system and slows down the growth of certain immune cells. according to the patient leaflet it provide rapid relief from symptoms. it says some improvement in symptoms after two weeks of treatment, particularly with stronger doses. However, it may take from three to four months to reach optimal control.

      according to one website risks with cyclosporine include kidney damage. This increases with length of time and amount of cyclosporine taken. Your doctor will monitor your kidney function before and during treatment. Patients can also develop hypertension on this medication so frequent blood pressure checks are important.Vaccinations may be less effective if taken while on cyclosporine.

      What are the side effects?

      Decreased kidney function

      Headache

      High blood pressure

      High cholesterol

      Excessive hair growth

      Tingling or burning sensation in the arms or legs

      Skin sensitivity

      Increased growth of gum tissues

      Flu-like symptoms

      Upset stomach

      Tiredness

      Muscle, bone or joint pain

       so as you can see this decision for me to possibly start these is not an easy one. i have been to a faith healer on Monday and I am applying the oil and holy water mixed that she give me and I think it may be helping. mentally it helped. i am going to get a health screening tomorrow by a naturalist to identify what in my body is damaged and needs fixing or if there is foods etc i need to eliminate from from my diet. from reading the forums on Lichen Planus which i have in my mouth and skin diet seems to be a big thing. I will let you know how i get on. xxxx

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    • Posted

      Hi edele im living in ireland as well and i know this is an old post but im just wondering how u are doin as ive been told i have ls and possibly vulvodynia and im finding it hard to connect with anyone in ireland.
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  • Posted

    hi edele, god thats an awful lot of side effects, i think the alternative natural route is better. have u had LS long, what age bracket are u in?
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    • Posted

      Hi Molly, i am 36 years of age. I went this morning for my health screening by homoepathic. Oh my god was fascinated by it. some of the stuff that showed up was amazing. she was able to tell me i had a vertabrau be out of place and that I bumped my head recently. Alot of my problems seem to coming from my gallbladder. she has advised for me to completly overhaul my diet. i am not allowed potaotes, sweet stuff, crisps, diary, wheat or peppers. Basically anything from the nighshade family. she has also recommened UDO's choice oil blend, wheatgrass, life gold liquad and super 8 pro-biotics. Also i have to cut down on drinking tea and to start taking half a squeezed lemon in hot water every morning. Also my iodine levels were very low so the UDO's oil should help this. I also had quite alot of pesticides in my system cause of the fruit and veg i eat so she suggested going organic...which is great but alot more expensive. She aso suggested swimming in the sea because of the healing properties of seaweed and I love swimming in the sea anyway which I will be doing from next week when i go to my caravan in donegal for the summer. Seaweed baths are also supposed to be very good.

      Basically it is what i thought all along, LS is our bodies way of saying something in our lifestyle needs to change so I am going to try cleansing my system and cutting out basically everything I can and following what she says. Its worth a try.

       

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  • Posted

    that sounds great, i hope it helps, i went to kinesoligiest which said basically same thing, ive had alot of surgery, is there a facility to private message here?
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  • Posted

    hi edele just click on the envelope symbol under coloured box thing, think u ave to ave it set up in you settings to recieved private messages, ive just sent u one, will b in touch , have to run now 
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    • Posted

      I can absolutely assure you 100% that my post (one and only) is not an advert.

      I posted information about what has worked for me, on a support/advice forum, in hope of actually providing support/advice!

       

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    • Posted

      Was that the Perrin's post? When I'm suspicious I check the company's website to see if they have any sort of pyramid selling scheme. Perrin's didn't. And the ingredients compare favourably with the stuff I buy from a neighbour who raises her own bees for the organic beeswax. Grape seed oil is the main ingredient. It's very nice on my face (I have psoriasis), but I don't expect it to cure LS. Down below almost any oil would do. We don't want oily faces but who sees our vulva?
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    • Posted

      Yes it was that post (I wont use the product name again)

      It doesn't have an oily feel to it at all as the honey binds it all together so it has a thick honey consistency to it, making it easy to apply but it does melt with body heat.

      There is also a cream which is called 'blend' which is calmer but appears to take longer to start working.

       

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    • Posted

      Lots of women on this site use manuka honey. So all the ingredients are good. I just wouldn't encourage anyone to believe it's a substitute for the prescription ointments most of us use. Other oils and creams are absolutely essential and a matter of experiementation.
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    • Posted

      Hi Morrell,  I just wanted to add something here.  I once had an aromatherapy massage.  They used grape seed oil for the massage and I suffered a terrible migraine afterwards.  I happened to mention this to the aromatherapist the next time I saw her and she told me that some people do have this reaction to it.  Just incase anyone out there suddenly gets migraines while using this oil.
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