Hi there. I have been diagnosed with LS in February this year, although looking back now with more information at hand, I have been suffering from this for nearly five years, but had always been misdiagnosed. I cannot begin to mention all the vaginal creams and tablets that I have been prescribed.. all to no avail until the biopsies were done. I am now using Dermovate and was using it only when needed, until I watched Dr Goldstein's webinar a few days ago. I picked the link up from this forum. Since then I use it everyday, after soaking for 15 minutes in warm water and then rubbing in the ointment for 90 seconds. In May of this year I was also diagnosed with Lichen Planus. I follow the same procedure with the LP but I do not seem to have as much success here. Patches still coming out all over especially in groin, thighs right down to knees, underarms, under the girl, arms etc. Is there anyone who is using something other that Dermovate for LP and with what success rate? I see on this forum that numerous mention is made of coconut oil, witch hazel and aloe vera gel. I have managed to get hold of coconut oil and 97% aloe vera gel. Is the 97% good enough? In what form does the witch hazel come... is it an essential oil? I have looked around but have not found manuka honey yet. Does anyone in RSA know where I can find this? Then lastly, how do I use the above.. do I mix them all together and put on (how many times a day?) and what is it for? Does it help the itch, scarring, LS itself??? Quite new to this so not sure how to use these. Any advice would be most welcome. Thank you
Hi Cuppa t, I love your name coming from Yorkshire England tea is all we think about! Apart from OLP LP and Ls when we are diagnosed at last!
I like you hVe heard all about coconut oil I can't say dosage but I'm sure someone on here will answer that for us.At the moment in little dises I drink it in hot water, spread if on toast and I. Porridge,use it sparingly at times on my hAnds and in cooking chicken and frying.Many say it's good for your ski n as a moisturiser again not sure how much.Ive tried eating the Maria honey not sure whether your supposed to eat it smear it on or drink it ! But it is expensive very if your using it a lot.Good luck with your search .Help us someone , what's the dosage ,how and on what? Where and when?best wishes and thanks to everyone yvonne
Hi Yvonne. Thanks for the response. I am sure somebody will come to our aid, before we eat all the things that we are perhaps supposed to smear on or vice versa!! Ha..ha (just on a lighter note). Thanks to everyone for all the insights, sharing of info and de-mystifying this terrible ailment. Good to know that we are not alone!!
Hi Cuppa T
I use organic coconut oil and put it on gererousy around the vaginal and rectal area.It keeps you lubricated so there is no drying or tearing and keeps the itch down. I also us a small spray bottle with water and 3 pinches of baking soda.after every bathroom use. This neutralizes the area so it helps to keep the itch down too.
make sure you test the coconut oil first on a less delicate area. A lot of people on this site like it but it made me really red and sore.
Thank you and Jackie for helping,
I have to a paraffin oinment 30 on my posterior which is highly inflammable it's a good job I don't wear nylon undies any static and it's good night Vienna! If I don't laugh sometimes I'd cry .its great your advice is really helpful.I need two jars now clearly labelled one for the kitchen ,,,,,
my hubby bless him moves stuff around if he thinks it doesn't belong where it is.several ladies on this site have stated quite honestly how LP and Ls can prevent any intimacy sexually.Im abit older than some but I do miss the intimacy in a relationship.Lp has made me celibate and my husband for over four/five years and it can affect your partners in their own ways.I used to think at first it was psychological infact a GP said that many years ago when I found intimacy very painful.all that time ....
but now we have this forum thank heavens! Thanks once again
97% aloe vera gel should be fine. You want the fewest additives as possible...so keep and eye out for the purer forms. You can usually find it online. Witch hazel here in the states is a mixture and comes in about a 16 oz. bottle. I believe there is a small amount of alcohol in it. You spray on the witch hazel and dab it dry. If you are irritated it may sting a little...but it is an antiseptic and is healing and soothing. You then take about 1/4 teaspoon or more of the aloe vera gel and apply that to all affected areas. You want 15% or above Manuka honey which has amazing healing properties. Yes, it is expensive, but a small jar lasts a long time and doesn't go bad. I take a cotton swab and dip a little out with that and rub it in at bedtime and wear cotton panties to bed. This routine has helped me immensely.
I only use Advantan fatty ointment once a day most days and dermeze sensitive for a moisturiser as needed. I was told not to wet the area too much as I have a bidet. I restrict that to no more than twice a day. I attend a special clinic devoted to this at the Mercy hospital in Melbourne. I have not been told to do anything else.
Re your reply to cuppa T.
thank you for your advice now I will buy all three and keep your tips written down in the bathroom.your regime seems positive.thanks.
thank you Kathleen,
I will ask the doctor for these or try to buy them over the counter if possible.What a lovely name for a hospital.thanks once again.
Hi Sheila. Thank you so much for the response. Will try that and keep forum posted. Take care.
Thanks Jackie. Will do the test first. Take care.
Thank you so much for the explicit advice Renee. Will try the routine and keep you posted. Can I follow this routine for Lichen Planus as well? Does anyone in South Africa know where I can get Manuka honey or the witch hazel mixture please? Take care and stay strong.
My specialist prescribed Dermovate ointment (not cream) for use once or twice a week. This can be used once daily during a flare up but treatments should be reduced back to at most twice a week after a couple of weeks. In between I have been prescribed Epaderm, this is an emollient wash (Looks like goose fat but mixes with water) I have been told to moisturise with this each and every time I visit as keeping the area moist is the most important thing. The Epaderm also cleans the area if you cannot wash. Washing the area too often is not a good idea either and lots of us have made ourselves sore doing this. If I do get sore at all I will treat also with Manuka Honey. Just a tiny amount which for me takes away the sting. I also soak with a very mild solution of Bicarbonate of soda twice a week before treating with the Dermovate (Clobetasol) Ointment. I keep a small spray bottle with water and just a pinch of bicarbonate of soda for clean ups when I am out and about. I discovered that by shortening the tube inside I could use the bottle upside down for spraying, dab gently to dry then moisturise again. Every one finds their own way of coping. Good luck with your fight against this disease.
Coconut oil can be applied as often as you like. I also use this occasionally as this disease seems to change and different treatments are a good idea for it.
Witch Hazel and Manuka honey are usually found in health food shops. Costco, and many supermarkets now stock Manuka Honey too. I put a little in a small tub which I keep in the bathroom (it saves answering the questions from visitors as to why I have honey in the bathroom), I put the honey in my baking cupboard so that it is not confused with the usual honey for eating. Although maybe using it internally might help you never know. A bit expensive thought. Buy the smallest jar you can find as it lasts so long. A pea size amount once or twice a week. I have had my jar so many months now and it hasn't gone down by half an inch yet.
It should help either. I've had one spot that I believe is LP and it seems to have also done the job there. Worth a try. If you can not find the items locally, you may want to check online.
Hi there. Wonderful to have found you.
I have been suffering with LS for around twenty years now. I was divorced when I first found out and needless to say, I have not been able to have any relationships since. It's kinda difficult to go on a date, knowing that at some point you have to say no to sex....
So, no love life. But I digress, sorry.
In the hospital, (I live in Spain) they prescribed a cream called Colpotrofil, and told me that I must insert it into my vagina nightly (there is an applicator included with the cream.) This I did for several months, but this worried me as it is a corticosteroid and I believe that you are not supposed to use these for any length of time.
Long story short, I stopped using it daily and now just use it when I have flare-ups; which of course are horrendous, with the burning and itching sensations, I just can't sit still.
I found this site on Google when looking for some new kind of remedy, preferably a natural one, and as I said at the beginning - wonderful to have found you. I read all the replies and now I am rushing out to see if I can get some Witch Hazel (I think it is called Hamamelis in Spain) and some Dermovate ointment. Thank you all for the replies you wrote to Cuppa T.
I know the last entry was 5 years ago, but maybe somebody will read this and comment.
Yes, I did read it and thank you too, for writing. I know about people asking what's in your bathroom. It can get awkward. Also get the no sex part, unfortunately. Where is your problem, if I may ask. Mine is perineum, some anal. Have tried a whole cornucopia of stuff..... the natural oils are good. Need to get the honey. After what I've spent on the other stuff the honey's cost won't surprise me. Have not heard of Colpotrofil but it's probably like the clobetasol we have here in the US. What other coping skills do you have? Take care Pat.
Hi, I can completely relate! In addition to LS i also had rash/redness, flakey, itchy and sore at the same time - groin and thigh area - quite badly. I haven't read all the responses but this might be something to look into of you haven't already. After being misdiagnosed for 2 years and making the rounds from doctor to doctor, goven prednesone, steroid creams etc., I was finally diagnosed with Celiac Disease. At one point it was so bad i couldn't really even wear bottoms; I wore dresses to at least the knee and no underwear because i literally couldn't! Sitting was difficult too so i'd kind of lean on my hip and side. I didn't have the usual abdominal symptoms of Celiac so it stumped everyone - until I turned 50 and had to have a colonoscopy where the intestinal damage was discovered. Completely getting off gluten made all the external skin issue begin to disappear. I still have LS but now at least it is not compounded by the Celiac skin irritations. Much improved - now if i could just find something to relieve the LS completely. I hope this is at least a little helpful.
Hey! I use Coconut oil twice a day, or even more if I feel like I need (for example after sex...).
I just rub it gently into the affected areas. It might stain your clothes a bit so make sure to do it in when you're still wearing your PJs.
Just get an organic oil, something that it good for cooking will be good for you V :)
Let me know if you have any questions!
Btw, I wrote this post a few years ago: https://patient.info/forums/discuss/i-stopped-using-steroids-read-this--718394
My doctor has a LP patient that has been using the Traumeel compound as well and it showed good results, FYI.
Please be careful when using aloe vera as I've read that if it is ingested in liquid form long term, it is positively associated with colon cancer xx