Hello--I am hoping to find answers to this recently diagnosed condition, which I have actually had for 20 years. It has recently become quite a bit worse and is very painful. The doctor prescribed testosterone creme, which didn't help at all. I am a little nervous about the high-potency cortisone creme, which has so many side effects. Any suggestions on treatment and/or diet? Thank you very much--
I was diagnosed with lichen sclerosis a couple of years ago. I underwent several rounds of using the topical steroids (first clobetasol, then mometosone fuorate)before they helped. I think my doctor underprescribed. I read on the Internet several different recommended doses and finally went with using the steroid (mometosone fuorate) twice a day for two weeks, then once a day for two weeks, then every other day for two weeks, then twice a week for several weeks. Sometimes I would go back to once a day if my condition got worse. Now I use it about once every week or two. It does not completely relieve the symptoms, but keeps them under control enough that I can sometimes enjoy having sex. Only time will tell if so much use of topical steroid will cause me any problems. It's my understanding that the main concern with using the topical steroids is that they might cause "striating" of the skin tissue, and I think that is mainly a cosmetic issue, anyway. If anyone knows any more about this, please let me know.
I am currently looking for information for alternative treatments of this condition, especially acupuncture or herbal therapies. I also suspect that stress aggravates the symptoms.
I was diagnosed with Lichens Sclerosis about 6 years ago, but believe I have had it since childhood.
I suffered terribly from the symptoms for 4 years before I started treatment as per a yahoogroup called lichenSclerosis@yahoogroups.com. This support group is wonderful and the moderator has researched extensively "treatments" for this condition, since it cannot be cured at this time.
I went from having lacerations up to two inches long on my genitals and loosing a lot of the female architecture down there to having no more lacerations or papercut like lesions and regaining some of what was absorbed/adhered in my architecture back.
Please visit this group (they do send out many emails a day so when you sign-up make sure you do not check for individual emails otherwise your email will be full. I get mine in a file containing about 20 emails at a time and about 4 times a day.
I really do hope that this helps someone. My husband almost left me because I couldn't have sex anymore, but now we are very active again!
I tried to use the link of lichenSclerosis@yahoogroups.com. but apparently the address has changed or I am doing something wrong. Do you just put this address in the browser and press go, or do you have to sign on the yahoo or something different? Help!!!!! Reading your message on Curezone is the first ray of hope I've had with this problem. My boyfriend is very upset that I hurt all the time and the "cures" the doctor gives me is not working. Please respond soon!
hi, i have had ls for close to 20 years now. i was reading about your cream issue. i am currently using one called diprisone OV. if you think you were under prescribed, try one which ends in ov. this means optimised vehicle. meaning it is a stronger cream than most. i havent had any side affects with long term use of this steriod cream nearly every day. the other advise i can give you, is try the ointment rather than cream. not sure if your aware but its more of a jelly based cream so it can be applied wheather your wet or dry. i have found this is the one for me, and has helped with my sex life alot. also incase you dont know, stay awat from soap! i was told that LS is a dermatitis, try soap alternatives. good luck with it
mailanee...The soap I've used for years is "Basic" I think it's called...and I get
it at Walmart. It's the only one I can use with my condition without a flare-up...
and it's very inexpensive...about $2 a bar.
But you 'definitely' need a hypoallergenic with no perfumes, etc. Give "Basic" a
try and see if it helps you.
I was recently diagnosed and prescribed a steroid ointment. I accidentally discovered that I get relief from using a homemade lye based soap. I do not know the ingredients. It is a brownish-tan, rough shaped square bar, and scented. It leaves an oily feeling. It has enabled me to almost completely stop using the steroids.
I realise this forum is not that active but that's ok, we all share a common problem and I have learnt to be very patient over the years.
I am a male aged 30. I was recently diagnosed with lichen sclerosus after a visit to a dermatologist. The reason I saw the dermatologist was because prior to this around 2005-2006 I started suffering from ejaculatory anhedonia (numb ogasm) and I lost a lot of sensation in the head of my penis. I have ben checked by a neurourologist who could find little wrong and I was referred to a dermatologist as part of the diagnostic process.
My lichen sclerosus is life long. I caused trauma to the foreskin/head of my penis when I was a youth after inserting a pen knife to try and loosen the foreskin in order to retract it. This was due to a conversation I had with a friend who could easily retract his foreskin, yet I couldn't. It gave me a lot of anxiety at the time which is the only way I have of explaining why I did it. There was a little bleeding at the the time but I did not go to hospital thinking it would stop, which it did.
I have never been able to have comfortable erections or retract my foreskin when erect. I have lesions around the head of the penis (white bumps), as well as down the shaft of the penis which I've been told are harmless sweat glands.
I have other skin complaints elsewhere on my body (mainly hair and face, chest line) - dermatitis. I also suffer from peeling lips which I've recently considered my in fact be lichen planus/sclerosus. I did not discuss this much with the dermatologist at the time at I keep the lips moisturised which makes them appear less worse than they are. If I leave them alone they will chap and blister, peel and bleed if I bite away the dead skin.
In wanting to get to the bottom of this I've considered that perhaps my lifelong untreated genital lichen sclerosus may be having strange effects elsewhere in the body if indeed the body is reacting to the urine which the damaged skin comes into contact with. Is the autoimmune response having negative effects elsewhere in my body?
My first question is is this possible ?
Secondly, I have been prescribed Enumovate ointment (clobetasone butyrate) which I am shy of using as I hear bad things about steroid ointments for this condition.
Instead I am proposing to use calendula ointment, it contains the following:
organically grown helianthus (sunflower) seed oil,
organically grown calendula officinalis (calendula also called pot marigold), cera flava (beeswax), tocopherol (vitamin e).
Lichen sclerosus thrives on oxalic acid. Mine has been in remission for 4 years with a low oxalic acid diet and taking 250 mg calcium citrate (to absorb oxalic acid in the food I do eat) at each meal. That's all I do for it.
Also some stem cell therapy has been successful with LS.
After reading all of your messages I feel obliged to let you know that lichen sclerosis can indeed turn to cancer. I know because I have had three laser treatments in that area where they burned the skin off right down to the last layer and still ended up with two major surgeries. I know this is not what you want to hear but it is what you need to hear. I have had both a vulvectomy (first surgery) and a radical vulvectomy because of cancer. Doctors try to avoid this disease because they don't understand what they are dealing with and some really don't seem to care. I have seen MANY, MANY doctors about this and not one of them prescribed anything but the steroid. After ten years of suffering, I tried yet another doctor because I had moved to a new location for my employment. Thank goodness he was "with it" enough to immediately take me off work and get the ball rolling. I would not be alive today if it had not been for this man. Seems like all of you - the ones I have read anyway - have so far escaped this. I was given steroids and, not knowing what the side effects of steroids were, used it all the time and in ample amounts. Not one of the doctors I had seen prior had mentioned anything about the dangers of this cream. I cannot stress enough to use anything BUT the steroids.....anything!! Obviously, I am very depressed about having my vulva and clitoris removed but at the same time I am happy that the doctors, and I had a team of them, found the cancer in time to save my life. I have grandchildren - 5 of them - and I want to be able to enjoy them - I have learned so much from this forum that I feel I may have been able to avoid such measures if I had had more faith in the internet and what's on it. I still have lichens sclerosis on the parts that are left so I will indeed try some of the things that you people have suggested here. Thank you!!
Ashley123: Thanks for your heart-rending post. I'm sorry you had to go thru what you have, but glad you survived!! That's the most important thing--that you're getting to enjoy your grandchildren. Could you tell me what you think now, in retrospect you would have done differently if you HAD trusted what's on the internet. And also what would you would have used instead of a steroid? Any definitive sign posts or wisdom you can share would be much appreciated. Thanks!!