What do we know about LS?

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I was wondering:  What have we learned about LS?  What are some of the things that work for some and not for others to control this disease? Have we, all of us together here, figured something out that makes a difference on how people can learn to live with LS, though not a cure?  Are there some sure things that almost look like a cure?  Just wondering. 

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  • Posted

    I'll be first.

    1). Steroid Clobatesol (for me) is necessary, but how often changes over time. Although, I've been advised someday it will not be helpful.

    2). Hormones are necessary.

    3). A moisturizer like Aquiphor helps the skin.

    That's where I'm at right now. I'm sure I will probably need further advise in the future. And I'm listening to others here.

    Thanks to everyone!!

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  • Posted

    I would love to follow this discussion. I am almost 9 months into diagnosis. At this point I am following the following steps:

    1. No sugar intake

    2. Clob twice a week

    3. Rinsing with water and baking soda and also soaking once a week in bath

    4. Aquaphor before a run and any exercise

    5. Coconut oil when not a Clob day

    6. Try to avoid tight pants and underwear

    Wondering everyone's thoughts on gluten.

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  • Posted

    Per a discussion post I found on this board, I am using a Borax solution and having the best results of anything I have tried in the 5+ years of dealing with LS. I know everybody is different, but this has been more successful for me than any of the prescribed treatments I've ever been on. And my doctor agreed at my last annual. She took notes about what I was doing to share with a couple of her other patients also dealing with LS. I've never tried the baking soda, so I cannot testify to those results, but I've tried about everything else. I think this forum has been an amazing place to get resources and testimonials about what people are trying.

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    • Posted

      Do you mean regular Borax?The kind you get at the grocery. Would you mind being more specific about your formula? How much , in how much water. Thank you. The only 2 things I have tried is water spray after urinating, and watching sugar and caffeine. No underwear, and always skirts only. Just water for bathing. Careful how I move.
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    • Posted

      Of what you described - your experiences with Borax, I think they are similar to my experiences with Baking Soda.  I'm not a scientist, but suspect that the two have something in common.

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  • Posted

    What works for me:

    ·         Baking soda baths every other night

    ·         Borax treatment once a day during flare-ups, then a few times a week.

    ·         Coconut, emu and almond oils applied several times a day.  I switch off every week with a different oil

    ·         Avogen capsule inserted vaginally a couple of times a week.

    ·         Cotton panties

    ·         Hormone therapy

    ·         Meditation

    What I try to avoid: stress, acidic or spicy foods, wine, wheat, dairy, sugar, tight jeans, soap

    I also have interstitial cystitis and I’ve noticed that whenever my bladder gets inflamed from diet or stress, it also wreaks havoc on the LS situation.

    Having said that, I’m looking forward to my next gyno appointment and showing my doctor my amazing progress.  It’s like night and day.  He had no advice for me other than steroids, and if it hadn’t been for the kind women on this site, I would still be suffering. 

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    • Posted

      Hi Cynthia,

      Strangely enough, the borax (sodium borate) doesn't burn.  I was leery at first, but it is a blessing.  What Alistar, who first discovered this treatment, said was to stir in enough borax in water just until the crystals stop dissolving.  Then I swab the solution on with a q-tip.  Yes, it is the same Borax in the grocery store.  Before I realized that, I'd ordered some on-line and paid a lot more.  Just check the ingredients and make sure it is only sodium borate or sodium tetraborate.  Don't buy anything with additional additives.

      Avogen is a supplement I've been taking for a year and a half.  It is available on-line and contains avocado metabolites.  I recently contacted the company about something else and they mentioned that women have found help with vaginal atrophy by inserting the capsules vaginally.  There is no data about that on their website yet, but since I've been using it, my tissues are much pinker and healthier looking now.  They were very pale and anemic looking before.


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    • Posted

      Just like Anna777 said, it's odd, but it doesn't burn. I was very skeptical at first also, but I tried it because I was so miserable and the flare up I was in was really bad. Broken skin, swelling, all of it. But even at the worst it has never burned or caused more irritation.

      If Alistar wasn't very far away I'd be hunting her down to hug her neck!

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  • Posted

    For the Borax (it's the kind in the laundry section at the grocery store, also listed as sodium borate or sodium tetraborate) I got a travel cosmetic bottle for $1, I think it's about 3oz, put about a tablespoon of borax and then fill with water. I shake it before each use, because the solution does settle. Then I apply with a cotton ball. It took about a week and a half to two weeks to see a big difference when I first started. And I was in the middle of a pretty awful flare up. When I'm flaring I use it at least twice daily. But honestly, when I feel a flare up starting I start using it and within two days I'm typically good to go. I forget to use it daily because for the first time in years I feel normal on a regular basis. I have seen other threads where they mention it being hard to come by in other countries. I hope the info helps someone else and that you all have the same results because I cannot say enough good things about what it has done for me. I am so thankful I found the thread about it on here a few months ago.

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