Emu oil

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.

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.

Emis Moderator comment: Both of the websites referred to in this post and other LS resources are listed in the discussion linked below. If users want to refer users to these sites using the link below means the post will not go for moderation.

https://patient.info/forums/discuss/new-to-ls-start-here-297241

I have bought emu oil on ebay for years now...it is expensive, but since all a person really needs to use is a drop at a time, it is soooo worth it.  I use coconut oil mixed with Frankinsence essential oil during the day, all day, but I use emu oil any time I have to use the bathroom during the night.  It is totally worth trying.  An added plus, emu oil definitely helps ease pain.  I rub it into my knees and hip when those joints are hurting and it helps that pain also.....In case this note isn't exactly clear:  I use emu oil on my bottom, where the LS is, but separately on painful joints!  :o)