Interesting Dianne that your helpful reply was blocked !! I too have been blocked and after years of experimenting and researching and trying products I was only letting sufferers of LS know of a product I had found helpful in much the same vain that sodium borate and Emuaid are allowed. I am disappointed to be deleted. There is so little choice of treatments
One would think there would be more open discussion on this Forum so sufferers at least are able to make their own minds up.
Its possible to send private messages on the forum. Just click on the envelope below the green splodgy square and the black star to the left of this post!
sorry to take so long to reply I am away at the moment and the wifi useless in the hotel. In answer to your question, I have never had a problem with my smears. Stress is definitely my worse trigger. Mary
Thanks Mary for replying hope you had a lovely time... I had colposcopy years ago after an abnormal smear and just after this was diagnosed with lichen planus although had no symptoms at all then
when things are are under control has anyone used Emu oil or Perrins? I have sent for some oil only when told to use it after things have been controlled. I've been using dermal 500 just a bit of it and it seems to help in the shower. I never thought of moisturising there but I suppose we moisturise our hands and face I guess, I have had excema for thirty years and so I'm used to betnovate ointment, I've never worried about the ointment and certainly haven't gone into researching excema I've just coped with it and just use a tiny amount on flare up areas, it's never thinned my skin in that time as flare ups are never in the same place. I'm trying to remain positive that this is the same really to control it at first then manage it there's no other way for me to cope at the moment or I'll go crazy with worry.
I was prescribed Dermol 500 by my doctor for washing instead of any kind of soaps or shower gels. I found it a very good alternative, and it never stings. I used to use it as an additional moisturiser after showering but am currently trying to Emuoil, as an experiment (only for the last 4 days though). It seems to be helping but it's hard to say whether it's any better for me yet. I'm sorry but I don't know what Perrins is. Can you explain?
I think the key seems to be keeping well moisturised with whichever product works best for you. I see other contributers mentioning a variety of different oils - almond, coconut, etc.
There are many posts here about how to treat LS if you have a flare up, with some expressing preference for a steriod cream and others finding alterantive methods, such as the use of Bicarbonate of Soda or Borax work well for them.
This was the first time I've posted here and in the week since I joined this forum I've found the information and support I've gained here to be more helpful than anything I've had in the years I've been trying to manage my condition on my own.
I hope you manage to stay positive and find some answers here too.
Thanks for your message. It's been a real help to me. I think your suggestion to keep a daily record is a good one. I've read quite a lot about diet too on another thread and think this is something I need to tackle. I'd like to see if there is a direct link between what I'm eating and when I have a flare up. I also agree that hormones seem to play a part in this or at least don't make things any better!
I think I've accepted now that this is something I will have for life but it is possible to regain some sort of control and not let it take over your life completely.
i just wanted to tell tell you the Perrins is a name of the brand, if you google it Perrins Complete is the one people on the website use for L S. If you google UK order form, I didn't get that it was £28 for a pot but is natural ingredients because it was cheaper I got the pure emu oil. It's scary putting stuff down there at first in case we react isn't it but like you say if it wasn't for here and the Internet which has also scared me as well I would be none the wiser and feel very isolated and alone. Why should we though as it is a diagnose we have had just like other disorders. It's just in a private place and some friends relatives don't really take to talking about this area. X
Every steroid cream going nothing works now the Dermovate isnt doing much i recently had an operation Urethral Dilation as my urethra has closed and scared due to LS.
Ok, just the steroid creams then.... They are not really designed to sort out the immune system, only to help provide some relief..... Has your doctor come up with anything else to try? Have you researched anything like low dose naltrexone? ( i cant get on with it though... Makes me dizzy).. How about researching things like the leaky gut conbection to auto immune stuff? Have you cut out gluten and sugar? Have you looked at gut microbiome?
i'm only full of ideas ref the auto immune aspect because i also have other auto immune problems as well as the ls.
when you are really itchy have you tried the bicarbonate of soda, a half teaspoon full in an eggcup of warm water..... Dab it on with a cotton wood pad...... Its cheap, the ingredients are in the kitchen and it gives me instant relif from itching.....
i've looked on other forums and people are trying all sorts of ideas.... Nothing has to cost a fortune..... But dont just accept your lot and give ip trying.
the docs are not suceeding in making us all well, so we have to explore other possibilities.
I would like to know what remedy you found to help you. I’m here looking for remedies other than steroid cream. My LS (diagnosed and biopsied) is making me miserable. I’m 42 and in surgical menopause.
Hi all folks suffering from LS , I was wondering if anyone else like me only discovered at a late age myself being 77 that they were I suffering from LS . In fact I came to the conclusion after many years and the dr agreed that was what I was suffering from and would require a yearly check up. Pat