Hello All-
Have just returned from appointment with new gynecologist who said some interesting things that some of you might find helpful.
1.. Lichen Sclerosus is on the rise (we are in US).
2. More men are getting it.
3. She is 99% certain it is auto-immune based.
4. Article provided by Beverly (here) argues that the auto-immune system is activated erroneously by lymphocytes (white blood cells of the immune system)
5. Disease has a predilection for genital skin. Oh Happy Day.
6. It CAN go into remission with early steroid treatment. Said mine was in remission likely because it got treated within 2 weeks.
7. Biopsies for it are only 50% accurate. A "positive" result does not mean you definitely have it but a "negative" result does not mean you do not have it either.
8. Doctors in the US are going ahead with a scrip for clobetasol even without biopsies because the steroid works well for awhile-until ti doesn't and then they may switch to tacrolimus (Protopic)
9. Doc was unsure whether "O-Shot" procedures would help. Said there were no good studies there are studies she just thought there were not enough where enough people were enrolled and followed over time) The "O-shot" is a procedure where the patient's own blood is withdrawn, spun in a centrifuge to separate out the platelets from the red cells and then injected back into the vaginal tissues (yes, I know sounds awful but they give lidocaine). The platelets help re-epithelialize the genital skin- at least that's the theory.
- So, bottom line is that those of us who have LS have a body that's done this to itself. If it just showed up as many of you say, then it can just Go Back To Where It Came From as well. The trick is how to get it to do that. With so many triggers in the auto immune system, my questions are : Are these triggers the same for all women? Can't be. Young girls get LS same as middle aged and those of us , er, getting older and post-menopausal. Hormonally based, doubtful with the various ages. Men get it on penises mainly but also on surrounding territory. Different hormones.
The Chinese say it is due to liver dampness and people who are "relentless" workaholics and driven to produce are most likely to get it.
So that's where I will direct my research- auto- immune triggers. Stay tuned and be well to you all.
Eggbiscuit
Thanks for the info! :) Hoping between all of our posts - we'll help each other and every one of our different situations.... since none of us are really suffering exactly the same. Everyone has different severities of the disease.
Thanks for the info, will be looking for your research in the auto-immmune triggers! I know I usually have a flare up if I eat sugar and I've tried cutting out gluten and dairy also. Use mild soap for bathing and clobetasol afterwards. Use to soak in borax bath, which helped.
Hi eggbiscuit, Thank you for this information. When I went to an acupunturist last year he told me my issue started in the liver and gave me some herbal pills but they didn't help nor did the acupuncture.
I was in remission for a couple of years and then BOOM out of nowhere for no apparent reason, I got hit with an outbreak. I'm in hell right now in way I haven't suffered so I am relying on the Clobestal to calm things down a bit. I'm wondering why the genital, although I heard that LS can appear anywhere on the body. There has to be some correlation amongst all of us. I wish there were more studies.
Anyway, I hope you are doing well. Take care.
this is all really interesting. how did you know it was LS within 2 weeks? did you already have white patches? im really curious what everyones symptoms were, how long until you were diagnosed, and how to believe your doctor if you show no physical signs?
I'm 32 and had itching for 2 years and LS was just brought up to me two months ago. The month this all started i had unprotected sex with a high risk person. I had a few rounds of the Bv then yeast then Bv then yeast. Stopped testing for them, but some symtoms stayed. I had tried steroid creams over these 2 years that never curbed the itching. i went to 3 gynos and my GP and LS just came up now with a specialist. i have no physical signs at all, she said she cant be sure, but that it must be what it is because everything else has been ruled off. If the biopsy wont be 100% is it even worth doing it? i asked to have one done at my next appointment to hopefully have piece of mind that its not LS.
im using Mometasone and it doesnt help the itch, so now my doctor is back tracking and going back to testing for yeast. ive seriously gone to at least three dozen apppintments over the last two years and am just so confused. I dont want to use steroid cream if i dont need it, but also dont want anything to progress.. especially because if it is LS, i have not been treating it correctly for 2 years now due to my doctors not giving me answers.
is it possible to just have ongoing yeast/Bv even if i dont test positive for it anymore?
thanks in advance
thanks eggbiscuit, I am going to see my GyN this week and I am going to print out your info and discuss it for her opinion. Will get back to you
This reply is to HANNAH I have been diagnosed with L S over a year ago. I do not have any white parts or itching. I have severe burning so much so I cannot sit with a rubber donut. I carry it everywhere, burning so intense have no social life, really am housebound. Very depressing!
i found a 2019 site, Skin Support, by the British Association of Dermatologists that had this quote:
"Friction or damage to the skin triggers lichen sclerosus and make it worse. This reaction is called a ‘Koebner response’. Irritation from urine leakage or wearing incontinence pads or panty liners can make the problem worse."
Also, it says we should protect genital tissue from our urine by using an emulument.
I wonder if having acidic urine is a factor too.
I don't use panty liners but this fall and long winter I wore tight running pants for hours every day as I'm a daily runner.
This is the first time I've ever worn them at age 75.
Just a thought...
Hi Hannah,
In December I saw white spots in the genital skin and thought it was a bad sign and so looked it up. Mine looked pretty much like the images I found on line and two weeks later the gyno doc confirmed it. Said, "Lichen Sclerosus. I've seen it hundreds of times. Incurable. Take clobetasol." Get out of my office (basically).
I think it is possible to have on going yeast infections. Think about how many antibiotics no longer works because the bug mutate and become resistant to the drugs. Are not yeast /fungus organisms also capable of mutating to survive the onslaught of drugs we throw at them? I will have to look at the journals to see about resistance. One thing about being a college professor with a PhD is that I get free medical journal access that would otherwise costs thousands of dollars.
There's lots of reasons for itch, too. Are you in the US? Have you tried OTC remedies? Has your dr suggested hydroxyzine for the itch. That's generic for Atarax. You could try OTC anti-anxiety meds: something with Valerian, hops, passion flowers and melatonin in it. Less during the day, more at night. Best wishes. Will post what I learn asap. biscuit
Patricia,
I so know what you're going through with the pain. I, too, have canceled several outings because of this pain and wonder whether I can keep my job? Can't take donut to work and sit on it.
Have you tried a borax water sitz bath? Or weak baking soda water? Coconut oil? How old are you and have you had your estradiols tested? Thyroid anti-bodies? What do you eat? I assume you've eliminated harsh soaps, lotions and potions....Vit A & D Cream helped soothe the skin. Where exactly is your pain? biscuit
Hi Ro,
Good point. Do you have a citation for this Brit Jrnl of Dermatology? I can try to look i t up in all the journals I have access to.
Will post when I find. Thanks!Biscuit
Thanks for this info Eggbiscuit. Sounds like you have a well informed gynae. Not easy to find.
If we could only 'tell' our immune systems what to fight and what not to fight, we might get somewhere. Meanwhile we have to muddle on as we all are on here I guess - finding our own ways to cope.
Does anyone know what the longest time is that you can expect to be in remission?
I just googled LS and triggers (I think those were my search terms last night...) and it brought up a site called "Skin Support" run by the British Association of Dermatologists.
I looked up Lichen Sclerosus.
If you can't find it I can copy and paste it for you in a private message.
Its very readable - great site. Short article and to the point.
Hi eggbiscuit, thx for your email. and now on to the answers, am on Clob 2x a week, use olive oil after voiding, no soap in that area in shower,just plain water,. I eat good meals, veggies potatoes and meat most of the time, some pasta, and good breakfasts with lots of fruit on cereal. occasional glass of wine. The pain and intense burning is up inside vaginal area. I wake up without any pain, seems as soon as I stand up it hits, gets worse as day goes on. It has occurred to me that just the pressure being upright ( body weight (120 at 5 ft) brings it on. When it gets too bad, I lie down for a while and it feels better. Have never had thyroid tested and never heard of Estradiols, will look into it. oh should mention, had had many bladder infections over the years. I have wondered if this has had any bearing on causing L S. I am 87 yrs old and have had this problem for 1 1/2 years.
Lucky you to be in remission, Glad to see it IS possible. I have had some lessing of pain but it never settles down to remission. So like all of us I will continue coping hopefully I will someday join you in remission.
Hi -
Thank you for your response! Interesting that you brought up Hydroxazine bc I actually do take that for anxiety - but only as needed.
My biggest fear is that if it is LS - I might not have the right steroid and why its not helping. The itch has been for 2 years and still no physical signs (which is good if it is LS) --- I wonder how long people can have symptoms before it shows physcial signs.
I've been thrown into a whole new world here. I had BV and yeast years ago in the past, but it always cleared up and I would move on. But after that last bout it threw me into a tailspin.
I am in the US and in Los Angeles - I should have access to the best care, but I feel like everyone is failing me. But unfortunately, it seems like a lot of women go through this same cycle for years. :(
Believe me, its a daily battle but at least I haven't cried lately.
Are your the Patricia who lives in Chicago?
Ro
No, I am Canadian, live near Toronto.
A clarification--the doc said the white areas (LS) was likely in remission but the pain is not. I cannot sit down without pain. I took a trip today 65 mi away to the regular doc and it just about killed me. He order auto immune blood tests, specifically: anti-thyroid antibodies, anti-nuclear antibodies, and the sedimentation rate. Should get them back next week. Doc and I expect them to be high since my mother had high ANA/Sed rate. That's how you diagnose lupus, scleroderma, etc...
Meanwhile, I am not sure this gyn is correct but she has order compounded drug$$$ and I will run with it for awhile and see. I continue to investigate these mysteries and I pray for us all.
Many thanks for taking the time to write up your discoveries from your doc today, Professor Egg Biscuit.
I"m a retired Landscape Architect, age 73, the nerdy research type, who went at this autoimmune bit with a vengeance one and half years ago. Anyway, I don't want you to have to reinvent the wheel, here are the links that I posted back then after a whirlwind around the clock bit for some days and weeks and updates for many months. All update discoveries of yours appreciated.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
I also developed a whole nutritional support protocol that I've been faithful to as much as I can. This one needs updating which I'll try to get to in a couple weeks ( sorry, really busy with not being retired - grin). my goal is to put it up on one of my own website pages so that it is available for everyone without hassle and more readability than what happens here.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963