1.) Can you cross your legs with comfort? 2.) Do you wear undies?

i use that and cetraban.

when i flare up badly i use synlar cream.

Yvonne and Pamela,

I use olive oil (for 2 weeks) since I quit Clob for my LS.

To moisturize the whole vulva area I use "Bee Friendly" vaginal moisturizer. Its very rich and creamy - highly rated on Amazon.

HOW LONG HAVE U QUIT CLOB. HAVE U ANY WHITE BITS ON VIRGINA

I quit about 2 weeks ago but 'think I will go back to it tomorrow - maybe for a week straight (2 x day) then maintenance of 2 or 3 days a week.

I don't have a whole bunch of symptoms - no itching, not much redness but I do get that uncomfortable buzzing feeling above my clitoris which is one of the two areas my PA identified as strong possibilities for LS.

The other is my inner left labia. She, also, said I had a change in architecture in the vulva with some fusing.

Also - she (PA) said she thought she saw some white/silvery patches in those two areas but I can't see them.

THANK YOU. I QUIT DERMA OINTMENT 2 YRS AGO.I HAVE ONLY BEEN USING BORAX,WHICH FOR ME HAS BEEN KINDER THAN DERMAVATE. I USE COCONUT OIL AT LEAST 5-6 TIMES A DAY., RINSE IN BORAX TWICE A WEEK. THE WHITE PATCH APPEARED ON MY ARM AFTER I EXPERIENCED BURNING AND STILL DO ON MY ARM.DR SAID IT WAS A RASH. ANY THOUGHTS WOULD BE MOST WELCOME.XX

Snappy,

I admire your ingenuity!

I bought some "bloomer" type undies on Amazon - too tight! No crotch seam but way too tight up there when sitting down. Ouch.

How do you apply that baking soda water in the bathroom, that you keep by the toilet? Where do you spray it? If it sprayed, that is.

Also, do you apply the vaseline and coconut water all over the vulva area from back to front or just in the affected areas?

I so agree with you - without this forum I would be adrift as I was before I came here.

Thanks so everyone for responding to my ever present questions!!

Ro

Ro,

1. Ha ha...my prototype panties are ok...but I'll improve them next time Hubby discards a tee shirt. But I might try the sock thing. I don't have trouble with the coconut staining things, but I do have trouble with it soaking thru my pants and leaving a mark on chair....ick. So maybe a cushiony pad would prevent this.
2. Baking soda/water. I tried the ketchup/mustard squirt bottle, but couldn't figure out how to spray it without either dunking it into the toilet water or getting it all over the bathroom...SOOO...I just squirt a tsp or 2 into my cupped hand and slop it around, down there, and rub it around, gently. Seems to work. After just a few weeks of this LS thing, I'm completely desensitized to applying anything with my hand/fingers. Just do it! I keep this in Master Bath, so I don't do it every single time, but most.
3. Vaseline/coconut oil/aloe vera gel (note...it's coconut oil, not coconut water). I apply first on one side in the front, then the other, being sure to get full coverage, then move back to vagina area and the perineum (see, I'm learning all the terms)...when I have everything else done, I move to the anal area. I get around that area, and actually into the anus. (wash your hands with SOAP...you know, this is especially important when you apply the steroid cream. It can thin the skin on your fingers. As I understand it LS doesn't really thin the skin...it actually thickens it to the point that it has no elasticity...then it cracks. That's why they don't worry about using the steroids consistently.)
4. I find that a little tiny tub with screw on lid of vaseline works best to carry in my purse or my pocket. The coconut oil will melt in the heat and that could get messy in the purse...

Excellent responses, thank you.

What symptoms are you addressing with the baking soda water "splash" AND the aloe vera/vaseline ?

Are they the painful chapped/pinchy feeling in the vaginal area when walking - like dried autumn leaves scraping together?

Burning on urination and/or afterwards?

Those are MY symptoms!!

I quit taking clob to go natural with olive oil but it didn't work as I hope so i have to go crawling back to clob!

Originally, I had some cuts, and even when they healed, out of control itching. I do get a little bit of burning/scratchy feeling back by the anus sometimes (must be what I have eaten).

My Derm said, steriod 3 x per week...forever...period. 1) The risk of getting cancer or other major problem is just too great to wait and treat only when you have a flare. The more episodes you have, the greater the risk of cancer. 2). The skin down there can tolerate the steroid, but statistics show, that you must control inflammation and irritation.

But... the name of the game is to keep the whole area lubricated and supple...if the skin dries out, it will crack (I have similar problem with my fingers around the nails). So, she said, "whatever works as far as lube" but do it all the time. I tried olive oil but had a reaction to it, vit E was too stinky for being in public...so coconut for me.

As for the baking soda. I just saw it recommended here and decided to try it. I think the idea is to balance the ph after the urine, Both baking soda and borax are more "base" than acid, so if the urine is acidic, this seems like a way to return to balance. After the rinse...put the lub/barrier on again.

Also, the 2nd purpose of the lubricant is to provide a barrier between the sensitive skin and urine. So, the baking soda goes on to neutralize those areas that got hit by the urine...THEN the lub/barrier of either coconut or vaseline. I like the aloe vera, but it is less of a barrier and more of a softening/soothing.

I don't have your symptoms. Maybe I'm used to the sensations but I don't think so. I've had LS for a long time.

I do eat a lot of cranberries and they're supposed to prevent urinary tract infections. I boil up fresh cranberries with a bit of water and when they've popped, I take them off the heat, add a heap of frozen raspberries and mix them together to partially cook the raspberries. When the mix cools, in goes a heaping tsp or so (to taste) of powdered white stevia. No extra sugar! I use it regularly in quantity as jam and beside chicken and turkey.

I've found the cortisone can irritate the opening to the urethra. In fact, my opening there has become very fragile, and that's worrisome. I start to leak! Now after putting on cortisone, I rub it in well, then lay on my back with my legs open in a frog position and let the ointment soak in away from the urethra before putting my legs together and possibly exposing the urethra to the cortisone.

I don't do the baking soda thing, but in the evening before bed, I add around 1 tsp-1 tbsp of 20 Mule Team brand borax powder to warm water in a sitz bath, and sit there for 10 minutes or so. That's soothing, so I must have SOME dry sensations. The other natural thing I use is Perrin's Creme Complete which is available online from Tennessee. It's packed with antioxidants. That's for use on the nights when I don't use cortisone. I slather on a layer of coconut oil, work it in, then a very small amount of the cream and work cream and oil in together.

Perrins is quite powerful so if I don't buffer it with enough coconut oil, it can burn, in which case I just put on some more coconut oil. It's still experimental, but the tissues definitely look healthier overall. I've never been able to get away from using the cortisone twice a week though.

On the nights I use Perrins, I drag a bit of it combined with the coconut oil onto the urethra opening. That really seems to be helping with the fragility of the tissue there. I find I don't leak after that.

Experimenting has worked for me! Sometimes.....

Our bodies are all so different. Anything but just cortisone, I say. And it sounds as if you and I agree on that. 😃 Good luck with your experimenting.

You said "Also, the 2nd purpose of the lubricant is to provide a barrier between the sensitive skin and urine. So, the baking soda goes on to neutralize those areas that got hit by the urine...THEN the lube/barrier of either coconut or vaseline. I like the aloe vera, but it is less of a barrier and more of a softening/soothing."

The thing I found with pants and underwear was the lube got wiped away by the friction of those fabrics over my skin. So I had to use more and more lube which eventually ruined my pants.

With slips and skirts I don't need nearly as much lube. More importantly for me, I found the friction of pants and underwear irritated and inflamed my LS, whereas skirts and slips don't.

Andrea, Can't disagree with that...but with my lifestyle (out in the yard most days, skirts aren't conducive. But, I definitely get to know which pants are best...