What do we know about LS?

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!!

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.

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.

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. 

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.