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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.
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if you google your area, you will find some places.
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I use boric acid vaginal suppositories. I definitely think there is a candida link here. I had a yeast infection and my doctor prescribed it. You can just get it on amazon though. This is something I do fairly frequently and was a life changer.
Also I've done the O-shot three times. It is pretty expensive, but worth it. Find someone trained regarding LS. The link below lists providers. After the first one, my doctor said I improved by 30%. The third time I got it, there was almost no signs.
The other thing I think is helping is Borax.
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I find recent stress has aggravated my lichens, that had been in remission. I will go back to the obgyn for evaluation today.
I will seek more prp treatments and one of the topical treatments on this site. I can't tolerate the steroids. The platelette rich plasma treatment has kept the symptoms at bay for over a year. I will keep my hope and faith that it will push it back into remission. I am afraid I will have to change my work out routine as well. It's a life style thing, I'm afraid.
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“Hyperimmune egg is an egg from a hen that has been vaccinated against certain infectious diseases. The hen develops specific antibodies that rev up the immune system to fight the specific diseases included in the vaccination. These antibodies pass into the hen's eggs. People harvest the eggs and remove the antibodies. These antibodies are then used to treat diseases in people.”
“How does it work? – Antibodies contained in hyperimmune egg are thought to stimulate the immune system and help the body fight disease.” – www.webmd.com
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I am going to start using legal CBD oil as I read LS could be autoimmune and CBD is being used in autoimmune issues. Also, after reading here, I'm going to start gluten-free too.
I'm doing well with just the zinc oxide for now, but I really don't want this to get worse as I've already had some fusion and scarring and I'm pre-menaposal (45 years old). I'm with a wonderful supportive guy, so anything I can try, I'm going to give it a whirl! Will check in on CBD and gluten-free process as I experiment.
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From reading through the entire blog, it seems there is something to coconut oil. I'm going to try it. I'm "frigid" from fear of a bloody show after intercourse, intercourse that is always painful. A certain MD forced me to have a biopsy, it was totally unnecessary, as it turned out. There is another product "Yes" - has anyone tried it or heard of it? Active ingredient is aloe vera. I'll let you know if it works to help the atrophy. I feel so badly that you have suffered so much. Let us know if the coconut oil helps, try a little first near the labia and just see how your skin looks and feels before using more. Blessings, Helen
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I read and re-read many of your suggestions and for the last 4 days I have had some relief with the following suggestions: 1 cup baking soda and 1 cup white vinegar in bath and soak for 15min. It has cut down on itching and I'm less inflammed.
Zinc oxide seems to work on decreasing redness and itching ( applying 2x a day) However is it OK to use continually on vaginal tissue?
Also applying cold water after each time I urinate. Started Essiac tea but too soon to access.Thanks, Moira, N.Y.
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My symptoms occured exactly like Dee's. I don't have itching or any white spots. But I do have some atrophy, white thinning skin in the folds, some past bleeding. I'm really upset that my atrophy will never grow back. This will prevent normal, painfree sex.
I was given potent steroids to apply topically everyday for one month, and then down to 2-3 times per week. After six weeks, my skin looks whiter than ever and I think it's gotten worse.
I took myself off the steroids, but needed something else to replace it. I wanted to do an all natural solution, so I searched this website as well as many others. After much research looking for women with my similar symtoms, I decided to try using Red Clover infusion/tea drinks. Everyone has recommended one quart per day. It has many anti-inflamatory properties as well as healing properties. Research has also showed that LS may be helped by megadoses of antioxidants. So, I went to the heath food store and bought the strongest antioxidant powder mix I could find (they work better, absored more than tablets). That's what I take internally.
As for what to use externally in the vulva area, I decided to use Neem cream followed by Organic Coconut oil (comes in a large jar, very soft and melts in your hand). Both have amazing healing properites, and the coconut oil replaces the essential fatty acids that the skin in this area desperately needs. I use coconut oil in place of everything I would have used butter or oil for, for example, use it for cooking eggs, baking, etc. It also can be used on the skin. I put it all over my body after the shower as a moisturizer. It is awesome! My nutritionist raves about it and uses it for everything also. It's a superfood!
I have used these drinks and creams for two days now, and my skin is already pinker! I still have some white skin in the fold area, but I am hopeful! Before this, I had an almost totally white vulva! I have also thrown away all my sweeteners with Aspartame, and will use only Stevia. I suggest everyone cut out the sugar, even honey. Sugar is sugar, and it creates an imflammatory reaction in the body.
It's worth a try, anything is better than steroids! Let me know how it works for you.....
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This is such an awful disease. Hang in there.
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I have tried everything, cremes lotions ACV, oils, you name it I have tried it including Perrins offerings, even used steroid cremes. Nothing worked. Todate there is NO cure and may not be one in my life time (I am 67) but there is some trials been done in Sweden or Denmark where they are trying out natural Progesterone creme. , available only by script in Australia ( big Pharm dictates here, so Aussie and NZ have to buy from USA). You also have to be careful using Progesterone if you are postmem, which I found to my cost, on 2 seperate days after two small dabs I was in agony with miscarriage/labor pains and the need to bare down, this lasted over 1/2 an hour till I had a show of blood. It turns out that I have a medium fibroid in on the back wall of my womb and the Progesserone acted a prelude to esterone which fed the fibroid and caused it to grow and as a postmenopausal woman that made my body think I was pregnant and it had to go. Thats what my last gyno said, but there again she said I had vaginitis when I first visited her for the itch and dryness 2 years ago. My GP has now got me on DermAid 0.5% which is not so harsh and it helps with the itch, I also sit in a baby bath of warm water with 1/4 cup ACV 1/4 cup Bicarb soda, and 1 cup Magneesium Chloride which I buy from food ingredient suppliers and I find this is works as well as anything I have tried so far and all 3 are good for the body anyway. I will try Argan oil in the blend next for the dryness.
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Mine stopped reacting, skin was pinking up with oral intake of vinegar - the very same reaction with MS and vinegar. MS is an autoimmune disease. Vinegar inhibits a reaction of the autoimmune.
Western medicine has found that some of the medication used for anti rejection for organ donors are working but not resolving it.
Does the Estrace stop the progress of the disease?
For research purposes do you have Estrogen dominance? Thyroid link?
I was hoping Ted would comment, maybe he has something to offer.
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Your advise is EXCELLENT!! I have done my research and agree with all. I am a LS suffering soul. Perrins cream and your diet recommendations do help.
That being said, I would like to add to this forum some things that have helped me considerably with my LS.
I am certain that mine is associated with the endocrine/immune system. I have enlarged lymph nodes under arm when I have a flare up. I also have hypothyroid too.
In the last year I found a product called I-26 or hyperimmune egg. Started taking this and have had GREAT results, symptoms are greatly reduced. I am planning on continuing this until I find something else. I also came up with a remedy for the pain/itching. Take Lysine in powder form and add to Aloe Vera. Within seconds the pain itching will be gone. I apply this usually 1x a day and it lasts until the evening.
I have had this terrible disease for 8 years and found the lysine trick in a herpes tx. I just tried mixing it in aloe vera and it works like a charm.
I am not sure what caused mine, but it started after I had a hyster and dx hypothyroid.
Again, the hyperimmune egg is worth trying. Just mix it in with OJ, drink down.
God bless, hope this helps some other women.
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I believe after taking many antibiotics and Diflucan, my body collapsed!
I had a blood test and my natural path informed me that I am Lactose intolerant and I have to avoid Dairy and Gluten. I am taking Probiotic and Fish oil (Omega 3) and L-Glutamine (I guess to clean my liver. ) I have not seen any major changes to LS in my vulvar area. Yet, I can feel less gas (stinky gas), diarrhea, bowel movement and no more Yeast and Strep B bacteria.
Treatment:
Yeast: after unsuccessful 2 years of using Antibiotic, I used Boric acid and soaked my body in Baking soda every day for a few weeks which have been very very helpful. Even my husband did it too. I am free of yeast or bacteria now.
LS: I have been using lower dose of Topical cream which was useful at the beginning but not after 3 months. After the flare up and no sexual intercourse for a while because of the pain and itchiness, doctor gave me another higher dosage of cream, I have been using this for 3 weeks now and it is helping a lot. But I don't want to be dependent on this at all. I am young, still have another 50 years to go, can't use the cream for the rest of my life. I don't have any kids yet either.
My research shows that Omega 3 (fish oil), and probiotic are great to use to balance your body and create healthy skin. Healthy diet is another one, have a test or look at your blood group type and see what is better to eat for your body type. I did a cleanse in summer which helped my body to normalize and of course got rid of the yeast.
Also, I have found that Neem oil, Calendula oil, Emu oil are helpful. I have heard from a few professionals about Neem oil and Calendula, but rarely about Emu oil. So I was reluctant to buy Emu oil for my LS. Apparently, some people used Emu oil and it worked but not many professionals know about it.
Yesterday was the first night I used Neem oil and hoping to be helpful.
If anyone has any other suggestions, Please let me know.
Jen
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First, I believe that it is caused by hormone imbalance and/or auto-immune issues. Most people notice their symptoms begin with hormone shifts. For me, it was at the beginning of peri-menopause, and came along with other, more common symptoms of that. Along those same lines, the symptoms are always worse at the end of my cycle (pre-menstrually) and better towards the beginning of the cycle. Also, I notice my symptoms flare up (and have heard others report the same) when my immune system is run down or strained, especially if I'm fighting a virus (cold, etc... ). Interestingly, as several others here have mentioned, I also have a history of adrenal fatigue/chronic fatigue. So seeking natural hormone balance and a healthy, balanced immune system are, in my opinion, key to going into permanent remission.
Topically, I have found the most success with a cream called Perrin's Cream Complete, found on the Perrin's website (you'll find it if you google it). It immediately relieves discomfort and seems to help quite a bit overall with other symptoms. It is a soothing antioxidant cream that is very healing as well. It was originally developed to help prevent and reverse skin cancer, so for a condition with an increased cancer risk associated with it, this cream is a good one to have on hand. Also evening primrose oil has been helpful topically.
I have tried to adopt an anti-inflammatory diet to help with the auto-immune aspect: no sugar (very inflammatory and noticeably worsens LS), fried foods, junk foods, processed foods/fast foods, margarine or shortening. About a month ago I also eliminated gluten (mostly found in wheat) and either it's a coincidence, or that was truly helpful because it's better now than it's been in years. A whole foods diet that is loaded with vegetables and healthy fats and protein (which includes SATURATED fats: coconut oil, eggs, butter and meat from healthy, pastured cows, etc... ), fish, krill, or cod-liver oil, and low on grains (especially wheat). Try to eat more like your great-grandparents ate and you'll be doing much better than if you follow the USDA food pyramid! The Weston A. Price Foundation has great info on healthy traditional diets and how our modern, western diet and food preparation has damaged our health (westonaprice.org). Learning about food sensitivities/allergies would also be essential for reducing systematic inflammation. If you can't afford allergy testing, try checking your pulse before and after eating suspected foods. If you notice a marked rise in your pulse after eating a particular food, you are probably sensitive if not allergic to it.
Also avoiding chemicals as much as possible in your environment (cleaning products, unfiltered city water), and food (genetically modified and/or pesticide laden foods) is also important. I know there are lots of supplements that help with inflammation: turmeric, fish oil (or krill or cod liver), vitamin D3 (current recommendations are extremely low, so probably around 5, 000 mg. daily, or better yet, get your levels tested and aim for therapeutic levels--check out http://mercola.com for more info on vit. D), and many more.
There are also supplements designed specifically for reducing inflammation. Chinese mushrooms and herbs have been used with incredible success for a variety of inflammatory conditions, so that would sure be worth checking out. Fungi Perfecti has a product line called Host Defense and a product in that line called My Community that looks very intriguing. It's a very reputable company and scores of people with serious immune and/or cancer issues swear by their products. http://iherb.com seems to have the best prices. Searching out anti-inflammatory diet and supplements should provide lots of good ideas. Hopefully there's something of use in all that!
If I discover a magic pill, I will certainly share my discovery, but my guess is that it's really about getting your hormonal and immune systems balanced out, which involves a more holistic approach to diet and lifestyle than what one pill can provide.
