I'm a 63 year old female diagnosed maybe 10 year ago. I believe this all started after hysterectomy. I lost all right labia and nearly all of the left. I have fibromyalgia, osteo arthritis, osteoporosis and adrenal fatigue. Past sub-thyroid. Is LS auto immune? Just moved to Southern California Palm Springs area. Depressed when finally able to have sex the lubricant causes such discomfort! Also know I've had urine infection going on but hat dealing nurses doctors who do not know this norm for LS. Tried dermatologist who doesn't actually deal with LS patient and he immediately wanted to lower steroid strength! I believe what I've been doing has allowed to maintain some normalcy. Please advise!
Yes, LS is an autoimmune condition. Follow specialist advice - there is a great webinar on here which explains why the strong steroid is fine. That's what I do, although there are people on this site going the alternative route. I'm taking a complementary approach - am seeing a traditional Chinese doctor for herbs and acupuncture to treat the underlying autoimmune problems which I like you also have. Plus a gynae consultant who specialises in LS for which I use the steroid. Read as much as you can on this site and follow all the steps you can to take a little control and tackle the very understandable feelings of depression. Every best wish.
Hi, Has the acupuncture helped? I went for 3 sessions and taking herbal pills he gave me. Doesn't seem to be helping so I stopped going. He said my problem emanates from the liver. What are your thoughts?
Thank you .
Have only recently begun and am focusing on holistic treatment ie will judge it on success overall in terms of joint and muscle pain etc. which is what I'm hoping will reduce. The actual LS is reasonably under control (all the damage already done!) My practitioner also referenced liver btw. Regards.
Thank you for your reply. I have not located any specialists who have actually treated LS. My lady one is an hour and half away. Which fibro makes a tough day of round trip. I like the idea of acupuncture. I think I will look for practitioner.
Hello, How did you control your LS? I just came from my gyn. She doesn't believe that LS is an autoimmune disease or that it is caused by a congested liver, which the acupuncturist said and what I have read online. Ugh.
The Gynaecologist i saw told me that it was an auto immune condition & funnily enough, after having bloods done, i'm waiting for an appointment to have a liver scan.
HI OrangeRobin,
I'm 72 and have both LS and hypothyroid (antibodies confirmed). I've researched my tail off the last 6 months to be damned well sure I don't get a third or fourth autoimmune disease.
Yes, LS is autoimmune and I found the ONE article from NIH that confirms it..
Dearheart - if you are depressed you are NOT out of the subclinical stage of hypothyroid. get your doctor of get a blood sample of something called the TPO test - is will prove if you have autoimmune antibodies. Most doctors apparently only test for TSH and T4 or something. It took 15 YEARS before I found a doctor who didn't just brush me off when my TSH came back "normal".
ONe of my discoveries while trying to determine the etiology/sequence of arriving at LS, is that adrenal fatigue is right up there at the top... and So is LIVER overload.
Don't worry about not living near any LS specialists. I am one of the women here who has found that SOLVING for NUTRITIONAL DEFICIENCIES associated with autoimmune is taking care of it. So I can't speak to the loss of labia... though I think someone here may have mentioned in the past that the steroids are a double edged sword....?? didn't I read that, ladies? Too much steroid could actually be the cause of the labia disappearance? anyway, I wouldn't discount the dermatologist you saw.
So, in those ten years has anyone suggested that you might need to up your vitamin D3 intake - like ALOT? if it now a worldwide recognition. Please do read my summary of my autoimmune protocol that I amassed. it' is my discussions list when you click on my name and scroll down on the right. Blessings from North Carolina.
hi Susan, so to help your gyn out. print off the article I found from here. 1. The cause of Lichen sclerosus was defined as a “mystery” on many medical websites, with the note that it “may” be associated with “overactive immune system” and “hormonal imbalances. Lichen sclerosus (LS) is strongly associated with autoimmune disorders, particularly thyroid disease, in almost 30% of LS patients. (3) (4). However, As of March 2012 Lichen sclerosus has been confirmed to be an autoimmune disease as reported in a National Institute of Health pubmed document. (1)* see entire NIH doc at end. ncbi.nlm.nih.gov/pubmed
(3) Thyroid Autoimmunity and Lichen
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5484774/
(4) BMJ 2010;340:c731 Lichen sclerosus (a British Medical Journal)
http://www.bmj.com/content/340/bmj.c731
(1) An Autoimmune Phenotype in Vulvar Lichen Sclerosus and Lichen Planus: A Th1 Response in High levels of MicroRNA-155 J Invest Dermatol. 2012 Mar;132(3 Pt 1):658-66. doi: 10.1038/jid.2011.369
oh gosh, jayem, I certaqinly don't know what the blood work shows... but i'm sure that working to eliminate toxins and parasites etc etc will really help to clean it up. Milk Thistle is a very strong herbal that works in that direction.
> STRESS produces Cortisol which is a hormone that lowers immune function and increases inflammation
> CHEMICAL & ENVIRONMENTAL TOXINS such as chlorinated Water, mercury fillings, contraceptives, antibiotics, chronic stress ; synthetic pesticides, herbicides, industrial pollutants, and heavy metals (56) (60) and
> PARASITES (incl. Viruses, Bacteria & Fungus, Worms) (56) which lead to
> Impaired LYMPH-LIVER-IMMUNE SYSTEM which causes
> CANDIDA OVERGROWTH and
> LACK OF ABSORPTION of NUTRIENTS that causes, among other things
> TRACE MINERAL DEFICIENCIES: Chromium, Zinc, Vanadium, plus Magnesium (a Macro-mineral)
> and ADRENAL STRESS which causes
> HORMONAL IMBALANCES
> and/or DIGESTIVE ISSUES such as Gluten Intolerance
> CAUSES OF LOW MAGNESIUM include: Low Magnesium Diets which include Sodas (phosphorus) processed foods, high sugar and fats; Soft Water drinking/bathing water; Calcium supplements; some prescription meds, including but not limited to birth control pills, heart failure meds etc.; Alcohol; stress; digestive disorders. (53)
> MAGNESIUM Deficiency causes
> LEAKY GUT Syndrome which, along with
> VITAMIN D Deficiency causes
> AUTOIMMUNE diseases such as
Thank you Nancy. Honestly, I believe it is an autoimmune disease and wlll read those links, and I"m now not sure she is now the right doc for me. All the information here is so right on.
Nancy, I'm going crazy with everyone's own formulas for relief. Could you tell me how to use Borax and what quantities? I so hesitate because it is a detergent. Does the baking soda do the same thing? This week has been hell. Emuaid is helping along with Clob when I have insane itching.
Thank you.
Hi, I believe it is an autoimmune condition as well. Docs aren't always right. I am going to ask my primary care doc for a liver scan as well. Can't hurt and the more information we have the better.
Thanks for responding.
Susan to increase your info. re borax, there is an article called the Borax Conspiracy by Walter Last published in a couple of places on the Internet.
are the whites of your eyes yellow? what makes you think you need a liver scan? Here is what I found out about detoxing: 1. PARASITE CLEANSE 2X a YEAR: GREEN HULL BLACK WALNUT TINCTURE/CLOVE OIL/WORMWOOD EXTRACT
Dr. Hulda Regehr Clark PhD, ND. found that Walnut Hull Tincture along with Cloves & Wormwood can kill all three stages of worms, etc. in the intestines, in a specific order.
2. ENVIRONMENTAL TOXINS/ LIVER CLEANSE: change household items as much as possible: to natural cleaners, lotions, toothpaste, soaps, perfumes, deodorants, hair products, etc. And then internal support is suggested by Dr. Josh Axe, DNM, DC, CNS, choice of Milk Thistle (70) , Dandelion Root or Tumeric Supplements, plus Apple Cider Vinegar in Water daily, Cranberry Juice Blend and more.
3. PROBIOTICS & PREbiotics. Take a small amount of a Fermented food daily for the rest of your life: such as sauerkraut, kimchi, Curtido, kefir, yogurt
4. 8 Glasses of WATER a day to carry toxins out of your body, regenerate cells, keep things lubricated and keep skin supple.
5. EXERCISE FOR LYMPH CLEARING 30 MINUTES DAILY. suggested: floor exercises, rebounding (mini-trampoline), simply standing and bouncing by lifting heels off floor (the qigong bounce); jumping rope, or anything that gets you off the ground, including walking or jogging.
On the NHS I was sent to a clinic and saw a dermatologist and gynaecologist together. I was told it is an auto-immune condition and cannot be cured, just managed. I was prescribed Dermovate which is a very strong steroid, once a night for 2 weeks, then alternate nights for 2 weeks. I was also given something to quell the pain. The soreness comes back, like pins sticking into me. Now sometimes I put a bit of Dermovate on but the longer you use steroids the more your skin becomes used to it and it doesn't work. I make sure the area is clean, and smear Vaseline on the skin as a barrier. It is immensely reassuring and helpful to know how many others women around the world suffer as well.
Hi Nancy, if an underactive thyroid could be one cause for LS, shouldn't one be taking thyroid pills for this?
Hi Nancy, I take Vitamin D3 20,000 iu. Is that enough? I need to buy the other vitamin you recommended, which I have forgotten here.
I thought a liver scan because I read that the liver could be congested and one of the causes of LS.
Thank you! I have a rhuematology appt Aug 30th and will ask that the TPO test be included. What probiotic and vitamin D3 do you use?
Thank you. I'll research that.