Newly diagnosed LS but progressing quickly

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I was diagnosed a month ago by my doctor who was doing a pap she’s very thorough and immediately sent me for biopsies and it came back LS 

I’d noticed whitening of my labia of some time but put it down to menopause. I’m 47 and have been told I am now post menopause according to my recent blood tests. So I guessed my appearance was normal

I’m using Oestrogen cream twice a week and a steroid cream every day for one month nothing has improved in fact it’s got worse 

My lower labia has fused and has almost disappeared 

This change has happened really quickly 

I’m frightened that I will be disfigured 

I won’t be able to have sex or find someone who will want to have sex with me 

Pain is ok 

I have a constant light burning and occasionally itching but nothing too bad 

Is there anything in my diet that can help LS? I’ve given up alcohol for 6 weeks so far

I’m taking zinc Vit D magnesium and others 

Thanks for your site. I’m so grateful to find this page 

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  • Posted

    Hello Ricey70, I am a Male with LS diagnosed 7+ years ago.  My advice would be that until you get your dietary requirements (what not to eat) and your dietary supplements sorted out you need to get a Steroid that works for you that will stop the fusing from happening.  Are you using Clobetasol (Dermovate and ClobaDerm are 2 common Brands)?  Make sure you are applying it correctly in ALL the infected areas.  Any Steroid applied correctly and frequently enough will get your skin as healthy as possible, sometimes you have to switch to a different Steroid to suit the severity of your infection and your skin type.  But, I would say applying it correctly, and, frequently enough is the best place to start.  NEVER apply a steroid to non-infected skin areas as this will thin healthy skin - it does not overly-thin LS infected skin if applied CORRECTLY.

    Go back to however it was that prescribed the steroid.  If you are actually using a CREAM version, many say that it is ONLY the ointment versions that work for them, so this is the first thing to check, and switch to.

    Diet: It would do you no harm to switch to a Diary free, and Gluten Free dietary regime.  Sugar is the important thing to eliminate.  In terms of other things to try you need to follow ALL the forums on these "Women's Health / Lichen Sclerosus" pages and you will pick up some excellent tips.

    You need to know that Nancy K B is the Lichen Sclerosus Guru on this site and has done incredibly extensive research on the condition.  So if you can find any of her posts these may prove invaluable for dealing with your condition.  The one Vitamin you need to get right is the Vitamin D3 - you may need to take as many as 15,000 units [IU] to get your system started down the right path.

    UNFORTUNATELY this site is not particularly good at allowing you to reference other web page addresses of previous posts for you to study and follow the specific details ... otherwise I could have put a link in to other previous posts and provide you with a hot link to their previous posts {I have just tried this} anyway I will post these as separate replies in your discussion ..... Good Luck .......


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    • Posted

      Thank you!!!!!!!! Really! Thank you so so much 

      A very informed reply and I WILL do all of these things 

      I have an appointment with my doctor next week and I will ask her for a stronger ointment I’m currently prescribed Alfacort (I live in dubai but am British) so not sure if this is the same as Clob 

      I recently stopped drinking alcohol 44 days and counting and yes I  have decided to cut out sugar and dairy 

      This is going to be a big lifestyle change but I know I must do this 

      Thanks for all the tips

      I hope you’re ok with this horrid disease 

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  • Posted

    PATHWAY INTO and OUT OF AUTOIMMUNE DISEASES - Re-Post from Nancy KB - hopefully this site will allow you to follow this link ...... NOTE the information is very extensive, so look for the Dietary and Supplement regimes to follow first ....;utm_source=forum&utm_campaign=discussion-notification&utm_medium=email&utm_campaign=Patient%20Access%20EAP&utm_source=sendgrid&utm_medium=email

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  • Posted

    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:

     - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

    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



    *Should be taken together for absorption

    Vitamin A

    Omega 3

    Omega 6- GLA (gamma linolenic acid)


    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.

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    • Posted

      Wow!!!!! That’s some list of Info 

      Thank you so much for sharing 

      I have just skimmed it but will give a proper read later 

      Thank you 🙏🏻🙏🏻🙏🏻

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    • Posted

      Great advice! 

      One other thing I feel strongly about and that is suncream.

      This is something that many women wear every day and I wouldn't be surprised if its the root cause of the problems we are having.  Not only that they are now putting UV protection in makeups, like foundation creams.   If you take the time to look whats in them then you will see that its a ton of toxic chemicals.  I dont use sunscreen because my body instantly rejects it and so I wear the correct clothing and a hat when I go out as its a whole lot safer.

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  • Posted

    Hi Ricey, it is a shock there is no denying and it can be a bit overwhelming. 

    What I suggest you do is read as much as you can on the subject.  Read some of the older threads on this site and that will give you a better understanding of LS. 

    When first diagnosed everyone feels miserable but over time you will definitely feel better as you learn how to manage it.  Welcome to the group.

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