Last week had one of the worse flare ups of my LS. Decided to goggle "Causes of flare up with LS", from which I found this site. Surprised to find so many afflicted with this disorder, started reading the posts and learned about foods to avoid (went to a birthday party before flare up and consumed a large amount of cake and icing and even brought some home!!). Also normally eat dairy (cheese mainly). Stopped eating any sugar and less cheese, stopped using soap down there and got some vaseline along with using my RX prescribed. Almost completely clear of symptoms in less than a week!! None of the physicians I've seen have advised me of any of these remedies to try. Thanks to everyone for their posts, so glad to have found this forum.
Hi Maryella
Was that a homeopathic Rx? I get the same reaction from sugar and dairy. I also have MGD which is when the glands which produce the oily component of tears are blocked. It got me wondering whether they're both part of the same inflammatory response autoimmune picture. I reckon so
Julie 😊
That's great news Maryella. Welcome ! There's a wealth of knowledge here and MOST of it gained from reach other and not anyone medical !!!!. Can I just say please don't use Vaseline, it's a Petro chemical and no good for the skin with this condition. I use HYDRMOL OINTMENT as a barrier cream and moisturiser. You can put our on 30 mins AFTER any steroid cream you are using too . Sorry but what is RX ?
I have flare ups if I binge on sugar too but I'm ok with cheese. So glad you found us and that you are now feeling a lot more comfortable. Xx
Hi and welcome! Yes, sugar is most definitely the biggest trigger for Lichen Sclerosus. I agree re the vasaline, as there is stuff far better out there which is easier to glide on.
Hi, just to say I feel very sure it's auto immune / inflammation etc.
Mx
I know my docs didn't tell me about anything either except for the Clob cream. These sites with other wonderful women help so much. Try the Borax too. It works great!
Good thinking - stop with the sweets. Cheese used to be one of my triggers as well. Only goat cheese for me.
Indeed, the doctor won't talk about foodstuffs. Meanwhile here on this site we know that added sugar is aggravating LS for sure. And leaving out soap, wair cotton underwear. And the use of coconut oil for lubrication. Etc. You probably have read the various topics and picked up on what works for many.
Wishing you well.
Hi Caepe Diem
Sorry, should have mentioned what RX's I've been prescribed. My Derma Dr. prescribed Clobetasol about 10 yrs ago for itchy scaley spots on my back and got bio that proved to be LS. Then about 6 yrs ago saw my GP bc of itchy white vagina she sent me to a GYN who got a bio that proved to be LS and prescribed Clobetasol too. I moved last year so got a new dermatologic who said Clobetasol thins the skin and prescribed a cream that was very expensive, so I had it compounded and the compound ingredients are : Tacrolimus 0.1% Tranilast 1% Sorry don't remember what the name of the medication was. It burned when applied so didn't use much and continued with the Clobetasol. This week I've used them alternately. I have ordered some Emuaid...if anyone knows anything about it, please let me know. Sorry, don't know anything about MGD.
Thanks for the tip about vaseline. I looked for Hydrmol ointment...where do you get it or is a prescription? My RX's are Clobetasol and a compound of a RX, not sure of what it was.
Do I soak in the Borax??
Thanks Hanny, will get some coconut oil
I'm in UK and I get it from my Dr but you can buy it over the counter, no need for a prescription. Actually having listen to a webinar from the expert on LS he stated that LS causes THICKENING of the skin so there is no need to worry about steroid cream thinning the skin as in other conditions. Be sure to rub in the Clob for 90 seconds so it reaches the deeper laters of the skin where the inflammation is. I can't recall the consultants name that did the webinar but if anyone else can help to direct you to the link I'm sure you would find lots of info re LS on there. I certainly did.
Coconut oil works for some but not for me. I would put in on before bed and it made me itch like crazy. Lavender essential oil works really well too and Emu oil. Also Aquaphor, which is like Vaseline but a bit different I think? I have to use it because I am splitting between my anus and vagina. When I had my first child the doctor gave me an episiotomy and cut me all the way to my anus. So unnecessary. Now at 65 it is splitting. I use Aquaphor on that and it helps if I do it daily. I hope your flare ups are done for awhile and good luck!
Thanks so much for the info, didn't know to rub Clob in 90 sec. Learning so much helpful advise. Know anything about Emuaid...ordered some this week, sounded hopeful.
That's where I have the most pain, between the vagina & anus and I also had an episiotomy with my first born. Will try Aquaphor and is Emuaid cream about the same as Emu Oil?
I have great success with emuaid!
You say not to use Vaseline. I thought it was pure. What can it do to the skin? I’ve been using it as a barrier. Now I’m thinking - keep away
Hi Arlee, it is a petro chemical so not good for the skin particularly if you have problems with the skin. I and others have been warned by dermatologist/ gynae definitely not to use it.
Thanks Caroline. I’m not going to use it anymore. Now I need to find something soothing and “safe” to use. Coconut oil burned me. There are a lot of ointments and creams on the market but many have ingredients that I can’t even pronounce!
Coconut oil didn’t agree with me at all. My former gyno who unfortunately retired suggested aquaphor I’m going to check the ingredients. Someone wrote that Vaseline is not good. So I’m not going to use it again.
So difficult to find the right thing to apply.
Which emu oil is the best to use. I also had an episiotomy for my first child. I’m. 70 so that was many moons ago. Do u think after all these years it can cause splitting?