hi could anyone help I'm looking for emu oil. I've tried health stores but with no luck. I live in the uk my only other option would be to get it on line but I didn't really want to do that.
I think that on line will be your only option.
Are there enough positive reaponses that this works??
I heard about it but really had doubts since I hadnt heard enough people saying that it worked for them.
Be careful of wasting your money on snake-oils!
I live in the US and had to buy the emu oil online. It's very creamy and soothing and I like it better than coconut oil, but I don't think it's worth spending a lot of money on. Coconut oil is very helpful too, I just find it messy to work with.
Emu oil from a reputable source wouldn't be classed as snake oil in my opinion. It doesn't work for everyone possibly but then does ANY one thing work for everyone? Methinks not.
I have tried emu oil from NZ, a very pure oil with a big positive reputation here. It did work, it's soothing. And when it didn't soothe any more, as happens often with treating this condition, I moved on to another remedy.
The emu oil certainly had no detrimental effect on me.
I have tried many creams and lotions including Emuaid, baby bottom cream, Vaseline, Fatty emulsion, virgin olive oil, coconut oil and so on. They all work for a while (except Vaseline, it burned) but eventually they stop working.
Snake oil though ..... maybe that's a thought!
I ordered via Amazon and just went for the one that looked highest quality and most reputable and it lasts for ages and ages, although expensive to begin with.
I live in the UK. Couldn't find it anywhere in health shops so bought on Amazon. Looked at all the reviews and went for one that looked from a reputable source. Don't use it all the time but it softens the skin and soothes. Once it stops working i will move onto something else. I use it with my prescribed ointments.
I couldnt find any in the UK so got mine from Amazon, triple refined, but dont really know if that is the correct one to use. It says it's Australian but wasn't expensive. I'm post menopausal age 55, in moments of intimacy i need a lubrication but my partner doesn't like the smell of prescribed moisturisers so i'm having to trial different things. Where abouts in the UK are you, I'm Wiltshire and feel quite isolated dealing with LS, I don't know anyone that has this.
I am also in the UK and ordered online...yes its costly but it goes a long way. I can say for me it was worth every penny.
Also I try to use mine sparingly and moisturise with coconut oil or other alternatives when I can between flare-ups. It offers immediate relief so when the LS is quite severe I will be applying it multiple times a day for relief but in conjunction with the steroid which seems to clear the flare up. It can also be used as a barrier and is a super moisturiser and seems to help in preventing flare ups so you can use it as much or as little as you like, but as mentioned our skin tends to get used to remedies and get past them eventually.
I'm near Bristol, not far away and 51. I tried to start a local group but it fizzled out. I don't know anyone either. I've told two close friends. It's a funny mix of isolating, because it's awkward to talk about, but also I quite like the anonymity of being no more than a pattern on a screen! Let me know if you're ever over this way and we could meet for a coffee if you like.
or not a coffee since I've given it up, but a herbal tea?
I also feel pretty isolated too. I have told two people, one being my mother and having bad days with ls is the absolute worst. Reaching out online is nice...but sometimes you need an immediate response or just a hug! I dont feel like the nhs really offered me much support either to be honast.
Hi Twixxxo,
I appreciate your query and wanted to respond with my own story. I don't want to make any assumptions about whether you are using a steroid ointment as your major course of treatment and just wanting the Emu oil to sooth and lubricate. But if you or others dealing with LS are turning to Emu oil to manage LS then you might want to read the literature on LS very carefully. I have been one of those who was afraid - terrified - that topical steroids would thin the skin of an already sensitive area that is being further thinned through the process of post menopause and also (I believed) by LS.
I got my first symptoms about 6 years ago and was finally diagnosed less than a year back when I simply couldn't stand the itching and pain any more. Little did I know until then how much damage had occurred and how compromised I’d become. I have been in denial about this horrendous and disfiguring dis-ease until very recently and have finally begun to really dig into the literature. I would strongly - STRONGLY - suggest that anyone who has not done considerable reading on this disease take advantage of the resources listed for this thread, and also to use the internet and Google Scholar to start cracking the scientific literature. There is also some excellent and accessible material on the website for the Association of Lichen Sclerosis and Vulval Health that is run by Fabia Brackenbury. The scientific literature can be heavy going at first but is worth the effort to get the most up-to-date information and there is a fair amount of it.
There are already a number of folk on this thread who appear to have done a lot of work on the literature and education is critical. Especially if we ever hope to really move the research forward as the LS area of scholarship is very poorly funded. This, according to one of the leading lights in this field, Dr Andrew Goldstein, whose webinar on LS. This webinar is 80 minutes long and worth its weight in gold. It’s also recommended elsewhere on one the related threads of this site.
The literature has certainly convinced me of a number of things that are absolutely critical, the most discouraging being that even when we feel or appear to be completely asymptomatic, the disease still continues to progress, particularly and inevitably for post-menopausal women. Another thing I am really appreciating is that there is no such thing as "exact treatment" with steroid ointments - it is a bit of a moving target and very confusing for that reason. But at this point there appears to be very consistent agreement throughout the scientific literature that the long-term use of topical steroids - for now until something better is found - is the best way to treat and manage the progress of this disease. By which these researchers also mean the best way to avoid invasive squamous cell carcinoma which affects a whopping 5% (possibly a little more or less than this depending what you read) of LS sufferers - particularly those who are non-compliant to steroid treatment. This was the evidence that made me finally accept – for now at least – that I had to use this medication because it not only manages symptoms and reduces the ravages it also appears to significantly reduce the incidence of skin cancers in the LS population.
If you want to hear more about the sobering implications of this cancer then listen to Dr Goldstein. He also has corrected the general view of LS as a skin-thinning process by stating that it is actually skin-thickening which is helped by the thinning effect of topical steroid. The pictures he shows of how the steroid ointments (Clobetasol) beats back the fire of this disease have me finally convinced that this is the way to go, at least for now and until we have more hard science to prove otherwise and to provide us with better options. I am not suggesting that Emu oil won’t help, I use 2 different products to wash with and to keep the skin super hydrated - both recommended by the dermatologist. I also use a little estrogen cream and I am now very comfortable, one might think asymptomatic, but the disease is still progressing. So please do not imagine that being asymptomatic means that you are adequately protected from LS – including and especially the cancer with which it is associated.
I have been so grateful to be able to read the remarkable and courageous stories of the women on this thread dealing with LS in the past couple of months. I would really like to hear from any woman in post-menopause who has been medically assessed as being “cured” from this illness, as the research I’ve looked at indicates that there is no such thing. But if there is, please let me know. Also, I am interested in connecting with anyone on this thread who may have written or published on their experience of having LS.
Hugs and thanks to all.
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Hi I'm in County Durham I'm the same I don't know anyone that has this or anyone that knows about LS at all. I'm 52 tomorrow I've been getting treatment for about a year now.
"Snake Oil" is a termed used here in the US to say something is sold as a solution "cure all". I would prefer to see actual data on it..so until that data is in AND/OR I see A LOT of people around the world...saying.."yes it worked for me or it really helped me"...than just a handful of people online....I consider it a device used to get money out of the population...because yes...methinks like everything else..it works for some..but not all.
Thank you. That's what I thought. It might work for a few...but the price is high and I don't want to spend that much to see "if" it works. I've spent years trying stuff. I try to see if I can find out what connects the product to the REAL problem to see if has a relationship.
I have to read clinicals to find out what makes sense based on real data....and what does not.
Haha kubie, yes I am fully aware of what snake oil is meant to refer to. I was making a joke but looks like it fell a bit flat when I said maybe I should try it. 😀 I am a Kiwi and not everyone gets our weird humour.
I didn't get offended when you insinuated that I and others may be gullible but I could have.
Emu oil has been around for a long time and I have read many reports and feed backs before I tried it. It's not even a HALF of the price of the emuaid I got from the USA and that had something in it that burned, possibly paraffin.
What do you use that you have actual scientific data on?
Read the feedback on the oil I use alternately on rotation, it's called Silberhorn. Read feedback on all the others oils as well. I use products real people have tried and used, that's best way I reckon. Good luck.
Hi, I'm near Salisbury, and likewise if you're up this way it would nice to meet for a tea and chat
Hi,
The isolation is very hard , particularly if you are divorced loke myself, sometimes you just want a big hug. How have you been doing on the treatment?