This post is from Starlight8 on June 1st, 2018 - again it is quite extensive, but perhaps a little more accessible, with a helpful tip on keeping a Dietary / excercise, etc., Diary that you can follow .... Hopefully Starlight8 will not mind me posting this as it is purely to help another sufferer ......... I have slightly edited the initial part that was a personal reply to someone else:
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When you learn what it is your body is needing, you too will be able to manage this disease. When I was first diagnosed I was living with itching on my clitoris for 6 months. It was so embarrassing! It wasn't until I started Clobetasol that the itching finally went away. I now manage my LS (Lichen Sclerosis) through diet and managing my stress. It has been a long road and there are still days that I do struggle but the main thing is to never give up hope!
Here is what helped me figure out how to take care of my body and what I call the LS Protocol:
1. Start a wellness journal. A journal can help you track symptoms and examine what could be causing inflammation. I think the journal can be the key to finding what works for us individually. Let your inner scientist out, and make your body the subject because you are the only one that has the answers that your body is needing. Here is what you can put in your journal:
Everyday write down:
What you eat and drink (include medicines and vitamins)
Every product that touches your body (soap, laundry detergent, toothpaste, lotions...ect.)
Your stress level.
How much sleep you are getting.
How much exercise you are getting.
Describe how your body feels that day. (any aches, flares, sluggish, write down all symptoms from your entire body).
Either take pictures or write a description of your LS areas so you can track if the LS is getting worse. (Can be done once a week).
2. Alter your diet - no sugar, low carb, dairy. Look up Paleo diet, Autoimmune Protocol Diet, Leaky Gut diet.
3. Stop using all soap on your privates- your privates only need to be gently washed with water.
4. Rinse with water after using the toilet and make sure you are fully dry. If you can afford to, buy a bidet that connects to your toilet and get rid of toilet paper. Toilet paper has bleach and other harmful chemicals that can cause skin irritation.
5. Do sitz baths. There are many recommendations to put in your water: Borax, Epsom salt, baking soda, apple cider vinegar. Try them and see what works best for you. Use only 1 at a time.
6. Take care of your anus! LS isn’t just about one area. Many who suffer from LS have increased instances of hemorrhoids and thinned skin around our anus. So try to keep it clean by rinsing after bowel movements, eating plenty of fiber and making sure to put a good barrier ointment on it to protect the delicate skin.
7. Use a good moisturizer/ barrier ointment. There are a ton that have been recommended; coconut oil, emu oil, mineral oil, Lanolin, castor oil, olive oil, shea butter, Cocoa Butter, L-Lysine ointment, Calmoseptine ointment, Emuaid ointment, CBD oil ointment, baby oil, Almond oil....this is just a couple I could think of. These not only provide moisture but help protect the sensitive skin from harsh urine and feces that cause irritation.
8. Look at all the products you put on or into your body. Try eliminating all chemicals and processed foods out of your everyday life and changing to natural products. This includes all cleaners, lotions, toothpaste, soaps, perfumes, deodorants, Toilet paper, nail polish, etc.) Make sure to read the labels before buying. Sometimes products are labeled “natural” and then you see a list of unnatural chemicals on the back.
9. Try eliminating stress and exercising more. Stress triggers LS flares because it produces cortisol. Cortisol is a hormone that lowers immune function and increases inflammation, which then increases the body's reaction to attack. Try meditation or walking for at least 30 minutes a day to help deal with stress. I also use CBD oil internally to deal with stress and anxiety. It is legal and can be ordered online or purchased at most health food stores.
10. Stay hydrated, your body needs fluids to carry toxins out of the body, regenerate cells, keep things lubricated and keep skin supple. Not having enough water in your system slows the healing process. Google how much water you should be getting every day, there are many calculators out there.
11. Supplements to take: Start taking a good multivitamin. Next time you see your Doctor ask him to check your vitamin levels, especially D3.
*Vitamin D3- 2000-4000 IU during the winter is safe, ask doctor for 25 (oh)D test. Good range is 32-50 ng/ml
*K2
*Calcium
*Should be taken together for absorption
Vitamin A
Omega 3
Omega 6- GLA (gamma linolenic acid)
Magnesium
fish oil
12. Start a good probiotic and prebiotic. You can kill 2 birds with one stone by eating fermented foods like sauerkraut, kimchi, Curtido, kefir, yogurt. I make my own yogurt and curtido (Salvadorean sauerkraut). You can visit your library for cookbooks on the subject.
13. Get good sleep. If we don’t get enough shut-eye, our bodies cannot heal properly. During a flare, it is imperative to take it easy so your body can focus on getting your body well.
14. Wearing loose, breathable clothing and no underwear, especially during a flare!
15. During menstruation stop using synthetic pads and tampons. Use a menstrual cup or homemade cloth pads.
16.. Staying positive. There have been studies that have shown the effects our mind has on our bodies. Our minds have the ability to heal themselves, so make it a habit to mentally picture your body getting better. I do this every night before I fall asleep hoping my body will listen and heal those areas while I rest.
17. Ladies don't forget to gently pull back your clitoral hood and labia every day. Uncircumcised Gentlemen- Pull back your penis everyday as well. I believe certain areas tend to fuse because our skin is raw and is pushed together all day long, so when it heals, it heals back together. So, when you are putting moisturizer on or are in the shower take a few minutes to gently massage all these areas so you can keep them from fusing further.
18. Because steroids can leave one susceptible to getting yeast infections I have found taking odorless garlic supplements helpful. Other things that work is 1 tsp of coconut oil ingested or used topically, 1 tbsp of apple cider vinegar mixed with a cup of water 1 time a day. I do not take all of these at the same time but will take at least one of these at least 4 times a week. If I have a yeast infection I will ingest and use topically the coconut oil everyday for 7 to 10 days, do a baking soda sitz bath 2 times a day, drink pau d'arco tea every night. This has kicked my yeast infections every time.