Hi, I was diagnosed yesterday. Had never heard of Lichen Sclerosus before so I'm still trying to get my head around it. I've been reading up but have 2 questions I wondered if anyone can help with please?
1. I've seen people mention coconut oil can relieve the discomfort. I looked on Amazon but is it the solid oil or something else?
2. The word cancer has really scared me. I have a baby and am really worried about his future. What actually is the chance of getting it in the future? Cant seem to find any figures on it
Be really grateful for your help
Thanks
Don't worry too much about the cancer part. You are already treating your LS which is the good part.
I buy coconut oil in the nature store. It comes as a solid. It melts when used on the skin.
Hi Mrs Giggles(like the name), this is a great forum for finding out information and you will find out more and more if you trawl through the discussions.
But basically in answer to your query.
1. Coconut oil is very soothing, it comes in solidified form but smears on really well. Another oil lots use is Emu oil this comes in liquid form. I have tried both and find the cocunut oil to be more soothing.
2. There is a warning of cancer developing with LS but it it is very rare so don't get in too much of a panic. It is best to check yourself on a regular basis with a hand mirror and report any changes to your Doctor ASAP to be on the safe side.
i am hoping you have been referred to a Dermatologist and have been given Dermovate (Clobestol) ointment to use as this is a necessity with LS, You should also avoid scented soaps and shower gels, try an emolient to wash with. Try also to keep urine and facaes off the affected area as they are caustic, most people wet a piece of toilet tissue then pat dry with another piece, unless your lucky enough to have a bidet of course.
i am sure you will have lots more questions and you will get lots of advice from other ladies on here which will all be good.
Try not to worry too much, it's not a very nice thing to be diagnosed with but it it is controllable and needn't take over your life. It's good that you've found this forum as you will now know you aren't alone in your suffering and you wil get lots of great advice.
Best wishes.
Hi Mrs. Giggles, sorry to hear you've been diagnosed, but glad you found us.
Coconut oil – food quality – is like shortening.
If you watch Dr. Goldstein's presentation, linked in the 'New to LS – Start Here' discussion pinned to the top of this forum, you'll be completely at ease about the cancer risk. Bottom line: LS is behind 60% of vulval squamous cell carcinoma. But most of those patients were probably never treated for LS, or even diagnosed. Once we're under regular care and using the ultra-potent steroid ointment effectively (again, Dr. Goldstein has a lot to say about this) SCC is a slow cancer and early signs of bad cells will be noted if they happen.
We have a disease without a known cause and no cure, with only a couple of treatment options. And the steroid ointment works very gradually. But as I'm finding out from the other sufferers on this forum there are many things we can do to improve our outcomes. Some of them give fast results, like cutting down on sugar, managing stress, and avoiding penetrative intercourse while flared up. The fewer bad bouts we have, the less scarring and atrophy – and the smaller chance of cancer.
I've had LS for forty years. I only stopped having sex a year ago. I've had two natural childbirths.
Stick around, G. This is a great forum.
The above was the short answer. There is a lot of info on this site and am glad you took the effort to absorb as much already. The most important part is that you receive treatment already, which then stops LS in it's tracks, so to speak. Dr Goldstein, you probably have come across his name and perhaps you have found time to look at his website, recommends early treatment. (As do other doctors as well) With the help of clobetasol the process of LS can be halted. The risk then that it turns into cancer is therefore very small, according to his findings.
Hope this is of some help to you.
Hi. What i find gives me almost immediate comfort is aloe vera gel. I use Cetaphil liberally and leave residue on when i shower in a.m. and p.m. Then I use. Small amount of George's aloe vera gel on sore spots. I discovered this when i was on a hiking trip and uncomfortable. It made such a difference. I read online in a fairly credible study on the government health site that aloe vera gel had a marked positive impact on ls after an 8 week trial and that it was inexpensive, cheap and effective. Has anyone else used it? Cetaphil is wonderful.
Thank you for your replies and so quick!
Being prescribed the ointment but they said the letter won't get to the go to write me the prescription for 7 days. In the meantime I'm so sore and nothing in to help.
Looked up home remedies and used a chamomile tea bag and Vaseline! Very frustrated with the slow prescription system here. Chemist better have it in when I do have it
What an excellent thought to use aloe vera. This far I've only used it on accidently burned skin. Is there a specific kind that one needs to look for?
That's indeed incredibly slow to fill a prescription. Lynn may have a cheap solution for you - Aloe Vera. I take it this may be an easy and quick over the counter relieve for you. I so hope for you that you find some quick relief this way.
I am in th States and tripped across George's gel in Whitefish Mt where we were vacationing. I havent found it in my town but have at Amazon and other health sites. The Viamin Shop here has a different brand that is less concentrated and milkier but 100 percent aloe. Georges is 98 percent per aloe. Do not use pharmacy products that are a mix of a lot of stuff. By the way, another study found using aloe gel rubbed two times a day on oral lesions with oral lichen planus also caused marked improvement. These were government sites on which the results were recorded. I would definitely recommend trying aloe for either ls or lp.
What if you use the plant itself?
Well, if you google aloe vera and lichen planus you come across reports of those studies and also a comment on the lichen planus support forum from a woman who did use real aloe vera leaves and her positive results. She posted a picture of a leaf. I'm just conservative and want to use the smallest amount and least potent amount that will do the trick. I find small dabs of Georges gel immediately quell the itch and soreness and take away the red. But i know the Cetaphil plays a part also and that is totally harmless. But aloe verde is definitely recognized as a treatment possibility. I find if I use both in a.m. And at nite i do very well. Hope it helps. Some people gargle with aloe verde juice and drink it but i dont want to do that right now.
Hanny, the plant is probably best of all. When my psoriasis was really bad I bought a big bottle (a litre) of aloe gel and just slathered it on. I kept it in the fridge. I bet it would help your dilation heal.
Morrell, would you be able to describe how your psoriasis reacted to the aloe vera or your skin for that matter?
Oh, I can't say it helped, but I found it cool and soothing. I was also taking long hot oatmeal baths, which were probably making it worse. My best friend recently figured out that these flare-ups were from my taking up sex again, with a shrunken vagina. The Koebner phenomeon is where any skin trauma can trigger psoriasis or LS elsewhere. So, as I tore from sex, my face and torso and especially my thighs were aflame. What helped was when my life settled down and what really helped was when I gave up sex.
But I went through a few bottles! So I must have thought it was helping.
Welcome to the club Mrs Giggles! I was diagnosed one month ago today and boy did it throw me for a loop!! I will say this forum has been a god send, so many people who are so supportive and have great ideas! It took about 2.5 weeks but my flare up calmed down and is now barely there. I'm still putting on the Clob gel on daily pretty much just because I'm nervous of another flare up.
Hang in there, it gets better. It can be painful, annoying, uncomfortable, but it does get better. Use the gel! I've never tried aloe vera but I certainly will after reading this thread.
Good luck and post any question you have, this community is so supportive!!
Maybe that what can be described as 'helping' had much to do with finding some form of comfort? Like - coconut oil won't bring a cure, but it gives some relief. Or Emu-oil for that matter.
A big price you paid for having a bit of a sex life. I say ' a bit' because in the end I found that with the pain it was no longer a pleasure.
From all the things that I found hardest to cope with was giving up my intimate contact with my husband. I went through a deep valley for a least a couple of months or maybe longer.
Now there's only my focus on the bathroom visit that has become of the utmost importance. Human minds and bodies are amazing adjusters, aren't they.
Hi Cheryl, glad you found us. You're probably on a graduated schedule of clob, so still on daily? I'm down to twice a week after a year and I'm pretty convinced that it's the steady tiny dose that's keeping the flares back (unlike all the other stuff we do, like oily moisturizers, which have to be put on all the time). There is such a thing as too much of a good thing. My husband has had great results from steroid nasal spray in reducing his nasal polyps so he can breathe and have a dry nose. Yesterday he didn't hear the spray, so he gave it an extra dose. His nose was stuffy and runny all day. More is not necessarily better.
That remninds me Hanny I was going to tell you. I was reading some article or abstract about LS and it made me so mad to read – the author said something like 'some women have trouble urinating and some can't even have intercourse' – as if not having sex was worse that not being able to pee!
My no-sex valley was long and deep, too. It took time to be convinced my husband was really OK with it. I was always looking for hints of dissatisfaction.