Maybe finally learning

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Well, I was first diagnosed with thrush, dermatitis then thrush again and eventually after a year of going from pillar to post with these different diagnosis I was finally told LS. Then I was given derogate and an appointment was booked to see a dermatologist for a biopsy. I changed my washing habits and made sure to use my derogate cream and everything seemed to calm down. Roll on six months and after results from biopsy dermatologist decides I do not have LS but just dermatitis and referred me back to GP and put me on a lower dose of the steroid cream to use only oce a fortnight instead of once a week. Anyway, every month without fail, whenever I have a period I get a bad flare. The past two months I have also ended up with cold sores down there on top of suffering with the LS flare too. I have been to the doctors and they gave me aciclovir medication to combat the cold sores. This last time it happened the doctor prescribed the aciclovir and advised me to go to a GUM clinic to confirm that it was herpes down there. When I got in to see the doc at the clinic, no sooner had he sat down to examine my bits than he was saying "you have Lichen Slerosus". He was disgusted that I was referred back to GP after being told that I don't have LS and only have dermatitis. Well I have been doing a bit of research the past couple of days and found that apparently if you have LS then it is best NOT to use the Always brand of sanitary towels which were the ones I normally used in the past if I used any brand. I also started drinking coconut water a couple of months back and this was a week or two before I got cold sores down there for the first time and I have learned that if a person already has the herpes virus in their body like I do (I get cold sores on my mouth regularly) then foods that are high in arginine will encourage a flare up of cold sores. Well I discovered that coconut water is high in arginine. Guess what I won't be drinking again! Lol. I think that the combination of the always sanitary towels increase the irritation to worsen the glare and whilst my body is trying to fight that the high arginine from the coconut water that induced the cold sores was just too much for my body to cope with. Now I'm just trying to find a chemical free washing powder or liquid to wash my underwear in. I have found recipes to make my own but they all seem to require sodium cocoa which is coconut derivative so needless to say I'm worried about trying that.

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  • Posted

    Not derogate I meant dermovate steroid cream and at the end for making my own washing powder sodium cocoate.
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  • Posted

    That is really interesting that certain sanitary pads irritate LS .I know that I can not use certain toilet tissue as it drives my LS mad and I get really inflamed very quickly if I change my brand. I too was wrongly diagonised for 2 years as my doctor was away having a baby in the middle & I got to see a series of doctors who sometimes never even examined me - just prescribed me with thrush. Eventually my doctore returned and sent me to a gynocologist who just looked at it and said LS ! I was actually relieved to have it diagnosed at last! Doctors realy need more info on this as it is terrible painful at times & often sex is too painful. I feel a freak & all thsi might not have got so bad if I had been diagnosed earlier. My mum has dementia and I believe the incontinence pads she has been given are making it worse for her. I know urine burns  terribly sometimes if I have a sore spot. I wonder what elderly women with LS and incontinance are prescribed. ? Perhaps some research into this is needed ? Or because it's a womans issue is there little funding for research ?

     

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    • Posted

      There's one worry I have - what when incontinent and a person will have to wear those pads?  No more baking soda rinses to keep LS livable.  Your mom has LS?
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      yes my mum has LS & I am worried that the pads she has been given are making her condition with LS Worse. The problem is she has dementia and has lost control of both bowel & urinates into pad too - not great !
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      I wonder why you say 'because it's a women's issue perhaps there is little funding for it'. I would have thought in this day and age there were plenty of women behind decision making of who gets funding etc. I would sincerely hope so! I guess it's quite an uncommon condition and also such a secret one because of exactly where it's situated that it's almost 'unmentionable'. I am a nurse and managed to get through 40 years of general nursing and geriatrics and NEVER heard of this until I was diagnosed last year at 69. Nor have any of my nursing friends or the very few people I have told.

      If something gets no publicity or attention how can it ever be addressed?It's an impossible situation.

      I feel very badly for your mother. Nobody should have to suffer like that, I feel very strongly about the issue of 'choices' and is the reason I have definite plans in place should I ever have to face the diagnosis of dementia coupled with LS.

       

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      That would be my worry too.   Plus the fact that so few may know about LS  or how it should be properly managed.
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      I have today seen  somebody from the Alzheimer's society who is going to come to my home and talk with me and discuss my mums condition.Alzheimers society may know of inconenance pads ?pants that do not make LS worse - I hope ! I think LS is often mis diagnosed and people and drs think they have trush when infatc it's LS. Also women of my mums age (*^) don't like talking about this - even to their Dr. Having vascular dementia means my mum can not discuss it with her dr. I feel very sorry for her as she has had this since her 20's. At night she is putting her hand into her knickers and pad & soiling herself and smearing this over her nightie. She is unaware of doing this but I think this is because it is itching. Of course my dad has to clear all this up every morning ! He also has to put on mums cortisode cream twice a day - I am amazed that there is no help for my 87 year old father !
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      Carol, it's a dreadful situation for sure! Your poor dad too. I don't know where you are from, but there probably is help available but unfortunately it will most probably be an answer you are not ready for. Namely total care in an Alzheimer unit. The reason there's no help for your father is an anomaly, he is coping and so they see no need for any further action. The more he 'copes' the more they will leave him to it. But the alternative is as above. So it's a sad and depressing time for everyone. If you want change you must speak up loud and clear and your dad too. But after many years in the care of elderly people in the community I can tell you he will not got the sort of help he needs for your mothers needs. Someone to come shower her, yes, housework, yes, gardens and lawns yes. 

      Unless you fund the care yourselves for personal care, that would be 24/7 care, of course.

      I'm very sorry for your situation. Your mum, even though she had it from a young woman didn't ever think of her future when she was in the early stages of dementia? 

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  • Posted

    I use plain borax powder which I buy in bulk for laundry.  Maybe use this for underclothes which touch your skin.  No suds but clothes come out clean.
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    Hi, LS has many symptoms.   The sores that you refer to are part and parcel of Lichen Sclerosus, they are LS lesions that occur during a flare up, it is just one of the many unpleasant signs of LS that we have to endure I'm afraid.   With regard to coconut water having any impact on your LS it is unlikely, in fact, many women use coconut oil on their undercarriage and have found it to be very beneficial.   If you take a look at some of the older posts and the newbie section, you will find lots of information... sorry you have had to join us.
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    I think the problem with the coconut water is with the herpes (cold sores) and not the LS.  I know that arginine is like fertilizer for herpes, and it's in chocolate and nuts too, but I just looked on line and it seems that there is no arginine in coconut oil.  You can probably use the oil topically with no problem.
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  • Posted

    Washing agent for clothes ... soap nuts. 

    They are are quite readily available in health shops, are totally natural, are a fruit or nut from a tree, smell is clean but not perfumed, can be put into a washing machine inside a small muslin bag and they really work! 

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    • Posted

      I discovered these soap nuts online and am seriously considering these Lynne.....have you tried them?
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      Yes, I use them all the time Since I discovered them in an organic store. They are a little pricey bought in small lots but I am buying more in bulk now and am on the verge of buying in larger amounts as in a 2 Kilo box which gives enough washing power for about a year as in one load a day, and works out quite cheaply (can't tell you off the top of my head but you can find it online Im sure) 

      Five to six of the nuts in a small bag (supplied usually) does five washes. They can also be composted after they have lost their suds.

      They're great and I love them and knowing there's no poisons in my washing going onto my skin is the best part! 

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