Lin (Ontario) on 03/17/2025
Lin (Ontario) on 03/17/2025
Susan (Tacoma, wa) on 08/08/2024
Hi there! I had a very severe case. Unfortunately, doctors are not helpful by not informing us that changing our diet is extremely effective. What we have to avoid are foods that have a medium to high content of oxalate. Unfortunately, I didn't know, and I was having spinach and soy milk often. After changing my diet, I rarely have itching.
San (UK) on 01/24/2024
Lolo (boston, ma) on 11/18/2023
thanks so much for these posts. My gynecologist insisted that I would need to use clobetesol twice a week for the REST of my LIFE!! Tried that for over a year, but still had flare-ups. And who wants to use steroids forever? -- I have started using castor oil twice daily, with occasional aloe vera for irritation or lavender oil for itch, and coconut oil once during the day for extra moisturizing. Symptoms calmed down quickly, and No symptoms for 1 week now.
Wonder if people are using the castor oil even when symptom-free as a preventative? Or just when needed. Would be helpful to know.
I notice that lots of people ask for follow-ups, to see if these remedies work long term -- so I will post again. Here's hoping...
Steve (Coastal Southern Oregon ) on 07/24/2023
My primary care doctor wrote me a prescription for 100 mg of Cyclosporine to try and clear up my LS. It's fairly expensive so I haven't gotten it yet. Thought I see if anyone has tried or heard of this treatment.
Sowingbird (USA) on 07/02/2023
I came to this site and started reading about borax and then started doing it. I was still having itching at night, and I remembered black walnut was good for fungus and ringworms etc. I had bought some with wormwood and cloves in it for our fur baby, so I started putting it directly on the area after cleansing with borax. The itching stopped.
After two and a half months, the scales are coming off and it is helping with the fusing of skin. If in the fungus family or parasitic family which a fungus is a parasite the black walnut and borax is killing it.
Every day it is improving more and more. Lichen Sclerosis looks so much like tinea versicolor. I use the black walnut in the morning and at night. I rinse a couple of times a day with borax water and then I also mix black walnut with castor oil to help it stay in place. I take 1/8 of borax in a quart of water a day. I am a very thankful child of my Father. Praying this helps many.
Pyper (FL) on 04/01/2023
My personal routine:
1) taking estradiol (inside my vagina -insert) 3x week, as well as spreading a small amount around the tissues on the outside of my vagina - this has made a huge difference. On the off days when I don't use the product - I can feel a big difference and I have more symptoms.
2) The ONLY thing I've found for pain relief and itch relief (so far) Is Aloe Vera gel with lidocaine (like the kind you put on for sunburned skin). It soothes and takes away the itch - and it's wonderful.
3) Not sure if It makes a real difference - but I also started drinking 1 T of Apple Cider vinegar (with the Mother) well diluted with 8 oz of water (I mix a one squirt of Sturr sugar free water drops flavoring with it and a little sea salt) I have this every morning. Sometimes I make up another drink like this in the evening.
4) Sitz bath with warm water (1-2x day) with baking soda added (1 Tbsp) If doing this 1x day - I do it in the evening before bed, dry gently, and apply a skin barrier like either A & D ointment, or Desitin and gently rub those in, then add some of the Aloe Vera with lidocaine. IF it's on a day that I'm supposed to use the Estradiol, I skip the skin barrier and gently rub the Estradiol into the vaginal area - then add the aloe vera afterwards.
5) Supplements I'm currently taking:
4 drops of iodine daily mixed in my morning coffee (Lugol's 2% iodine) Daily
Women's over 55 multi-vitamins (daily) by "New Chapter"
Garden of Life women's 40 billion probiotic to promote vaginal health, immune health, digestive balance (daily)
Vitamin C (1600 MG) (Daily)
Vitamin D (3 per day = 30,000 IU) yes, this may seem like a high amount -BUT my Dr. had me on a prescription before of 50,000 - so I'm not worried about using 30,000. each capsule is 10,000 (250 mcg)
Vitamin B12 (shots from Dr. - every month because my body does not absorb B-12 the way it should)
Methyl Folate daily (1,000 mcg) (this is Vit B-9)
"Doctor's Best" High Absorption CoQ10 with BioPerine
"Doctor's Best" Vitamin K2 MK-7 with MenaQ7
5) DIET - I think this is HUGELY important. I keep a detailed daily journal of everything I eat and drink to help identify possible things that might cause a flare up of symptoms. I use a free program called Carbmanager - there is another free program called Cronometer which is very good. Both are free - but you can also get premium, which will give you access to more features if you want. I have been working with an Elimination diet - and then adding foods back in one at a time to see if I get any flare ups.
What I currently eat:
Beef, chicken, liver (1x week only) eggs, - have added back in: Salmon, other fish, shrimp, smoked oysters (canned) fish roe, Mackerel, Bacon, sausage (I mix in my own spices to fresh ground pork)
FRUITS: ONLY berries because they are lowest in natural sugar (blue berries, black berries, raspberries) I only eat fruit occasionally - 1-2x week and not many. I also will occasionally squeeze a lemon and add a little juice to a drink for extra vit. C
VEGETABLES: I haven't added them back in yet. But the plan is to add low oxalate, low carb vegetables like broccolli, cauliflower, celery, garlic - hoping to add back tomatoes - but will keep them to small amounts because tomatoes have a lot of natural sugar - so do onions.
What I no longer eat: Sugar in any form (watch out for "hidden" sugars - food manufacturers like to add in sugar using different names) It's safest to look at the carb counts to find sugar content of foods - even in vegetables & fruits. No processed foods (if a food has multiple ingredients - stay away from it) No gluten, no grains.
FLARE ups from food: Anything with sugar, grains, peanuts, rice, flours, WINE - my most recent flare up came after drinking a glass of dry red wine - within 2 hrs, I had a big flare up of pain, and itching - same thing happened with natural "organic" Peanut Butter.
I'd really like to encourage everyone to keep a Diary to note any foods that do cause them to flare up. It's been very helpful.
Christy (Cameron WV. ) on 03/01/2023
mauisuzi (Sequim, WA) on 01/03/2023
2000 - 23 yrs ago, first symptoms were itching across lower belly and groin. No diagnosis, was prescribed steroid gel which controlled itching. Symptoms went away after 3-4 years.
Life was very stressful. I had given up my home, furnishings and everything that didn't fit into 10 boxes, to live with my sister on Maui. After 6 weeks, we fought and she dumped me and I was challenged with finding a home and work and knowing only one person.
2005 - New symptoms begin, vaginal itching and burning just like a yeast infection. NP gave me an antibiotic cream and a steroid gel. No diagnosis. The gel controlled the mild itching.
Life Stress Bad as I was in a very toxic relationship that lasted 7 yrs.
2012 - Symptoms escalate. Doc diagnoses as LS and gives me instructions to use a steroid cream, heavily, briefly mentions skin thinning as side affect and warns against any straining during bowel movements.
2020 - I find Earth Clinic and begin experimenting with natural remedies and diet as I am determined not to continue using the poisonous steroid cream (which works well to control my symptoms). Symptoms are the worst ever and disturb my sleep. COVID stress times.
Natural Remedies I've tried:
DMSO
Day 1, this almost eliminates symptoms after 4 applications and sleep was good at last.
Application:
Put 1/2 tsp aloe Vera in palm of CLEAN hand with 3 or 4 drops of DMSO. Mix with fingers and feel it warming, then apply liberally on CLEAN affected area working it in gently. Let the area dry thoroughly before coming in contact with anything. About 10 - 15 minutes. DMSO is transdermal and will carry anything it touches into your body; toxins from soap or laundry detergent, fabric softeners, dryer sheet toxins, etc. If you are confident you have a toxic free home and laundry, you could put on clean panties after a few minutes and get dressed.
I will continue mixing the DMSO with aloe Vera but eventually, I will mix it with tallow because of tallow's healing qualities for our skin. I render my own tallow from 100% grass fed beef. Tallow balms are sold on Etsy.
References:
https://herbalmana.com › collections › dmso
https://www.truemedicineuniversity.com/healing-with-dmso
https://bumblebeeapothecary.com/how-to-make-tallow-balm/
Lifesawhspr (San Diego CA) on 08/08/2022
After years of steroid use and skin being worse. I recently tried a compound of 3% vitamin E with 1% Quercetin cream and it’s worked beautifully. My skin was in such poor shape and painful and has been healing great. I’ve also used Vaseline with the fissures, but the quercetin has been healing my skin up and helps with inflammation
Donna (London, Canada ) on 07/16/2022
Pam (Douglas Az) on 01/02/2022
Patricia C. (Florida) on 10/21/2021
Melissa (TN) on 05/03/2021
I have mine under control using a protocol found on a white paper from a doc in CA. It is:
20 min. hot bath every night for 6 weeks, immediately after, rub pea-size amount of clobetasol in for 90 sec. No less. Then 20 min Hot bath every other night for 6 weeks, immediately after rub cream in for 90 sec. Then 2x a week for life.
This has worked for me but I want it gone. On the relations part, idk cause I'm too worried to try.
I'm going to try some things I found today on here but wanted to post this for the lady who is having a hard time & can't get it under control.
The doc had a video showing how getting the thicker type skin down there hot via a 20min bath softens the layers then rubbing the cream in for 90 sec helps the cream Penetrate multiple layers. I have no itch. It's amazing & I'm very happy but I would really like to find a way to not have to use the cream at all.
Good Luck Ladies & I hope this helps someone.
M-
Terri (Wisconsin) on 03/30/2021
Elle (United States) on 05/12/2020
Robin (United States) on 05/05/2020
I had LS for more than 10 maybe 15 years. Saw my gynecologist (no idea of what it was); saw my skin doctor who did help and I can't remember what the ointment was but could only use it for a short amount of time, 2-3 times per week for a limited amount of time. This did take the itching away but the ointment was not healthy to take every. single. day. Which is what I needed to eliminate the itching.
Sooooo, I quit using it and suffered, for years. I tried all the diets, no sugar for more than 5 years, no gluten which I'm still off both these. Sometimes, no sugar/gluten would help but then it would flare up and no help again. I had the paper slits on both sides of my labia, one side was always worse than the other. The itching was INTENSE! Then the pain from the slits or the itching too much would be intense...AARGH.
Ok, so fast forward to today, errr well, 2 months ago. I read about the carnivore diet many years ago and this was one I had never tried. 2 months ago, I tried it...100%. Amazed me. 3 days after starting the carnivore diet, 100%, the itching stopped and has never returned. I still have the paper slits scars but there is no, opps repeat here, NO itching! None, zero, ziltch! And, it's been over 2 months with me being on the carnivore diet with only one minor cheat (hot herbal tea, 2 cups, with 2 hours inbetween) terrible reaction but still...NO itching. The diet is easy but greasy. No food craving...none.
The itching has never returned. My eczema rashes are nearly gone, just discolored skin. They have flared up during this 2 months but I associate that with loss of fat. I've lost 22 #'s and feel great. NO ITCHING! Heaven. I truly hope this helps someone.
Trill (U.S. ) on 03/01/2020
Beebs (Scotland) on 02/15/2020
I used both and the steroid cream did help but I didn't want to be using it on a daily basis. My GP referred me to a homeopathic doctor and I was prescribed a remedy called Acidicum Nitricum (nitric acid ).
I take this remedy daily and also use the emollient on a daily basis .. Since I started using the homeopathic remedy I have only had to use the steroid cream on a handful of occasions. I tend to use Organic Aloe Vera Gel in the first instance. I think the fact that I was diagnosed early ( albeit through my friend ) has helped keep symptoms to a minimum. I was not aware that LS was progressive and have gained knowledge from reading others posts. My friend was mis- diagnosed on several occasions and as a result has many problems associated with LS.
There are many things which can trigger LS flare ups the main factor being stress. Diet can play a big part in alleviating symptoms. Everyone is an individual and if you find something natural that helps you then go for it.
