What do we know about LS?

I simply ordered a set from Amazon.  There are a variety of these sets.  If I would have known a while back what I know now I would have started dilating early on.  LS wants to narrow the vagina opening somehow.  In addition - when this narrowing is let go the urethra also will get difficulties, and you will have ever greater problems emptying the bladder; this is from personal experiences. 

​Hope the above is of some help to you Melissa.

I agree. If I had known what was happening, or if the first doctor had told me, I would be in better shape. I keep mine one the fridge because I found when cold it wasn't as uncomfortable.

Thank you so much.  I will look into ordering them. I would rather do as much as I can do now for prevention.  My gyno told me at first diagnosis that this was an option but he would recommend waiting until things progress.  I would rather not wait.  I don't know what I would do without you ladies! 

and they're back - sorry if that sounds like mad-lady typing. too rushed to check.

You use regular laundry borax? I just read the box and it not to ingest it because it is toxic.

Not to jump in on her comment, but yes, laundry borax. It's only used topically, and in diluted form, so it's not really entering your system. And I checked with my doctor and she pulled up the ingredients and okay'd it. She was so impressed with my results from it that she was writing it down to tell a couple of her other patients. The borax shuts down a flair up faster than any of the steriods thought about working. And keeps me feeling more normal than the creams ever did. I can't say enough about it (obviously).

Ok thanks. I go back and see the instructions for using it. I don't have a tub to use

I just put it in a little container with a lid at first and I'd just shake it before use each time. Or you can stir it up in a bowl...whatever works!

Such a positive regarding Borax.  I experienced some difficulties while it was so hot outside and decided to give it a try.  Easy to purchase here from the laundry department luckily. 

?No immediate results visible after the one time use.  Didn't expect that.  But all has calmed down at least.  No Clob needed. 

NO! Don't ingest it! I use it on the skin. The homeopathic borax comes from my homeopath, from a registered pharmacy. Please be careful.

Hi Melissa,

Baking soda tub soaks are very helpful for itching, burning, fusing, etc.  Borax (sodium borate) takes the healing one step further.  Alistar is the lovely person who brought this to our attention, so if you can find her comments in the history somehow, it would help you.  Here is a bit of what I copied from her:

"Essentially what you're you going to do is add the borax to the water, stirring to dissolve (you don't need to heat the water). Once you've gotten to the point where, when you add more borax, it doesn't dissolve, you then have a saturated solution (meaning the water is "thick" with borax and cannot hold anymore). I applied it both morning and night, taking photos both times of day. Things didn't change overnight, so give a week or two. Dip a q-tip in the solution and apply it. I didn't just "rub" it on once, I dipped applied, dipped applied a few times. Once I'd done this for a few weeks, I started soaking a cloth in the solution and gently placed it on the affected area and lay down with the cloth on. I would leave it 20-30 minutes."

I can personally attest that the sodium borate treatment has been a gift from God.

Anna

Hi Melissa,  Just started to try Borax as described already.  Experienced it as more aggresive this far, so I will be a bit careful in the next days.  Perhaps I started too strong.  

 

Anna, I'm curious, and I am sure others are.  What exactly is it doing for you?  Do you have white plaques of skin, and have they started to dissipate?  Can you explain a bit more as I from reading your post it doesnt tell me what exactly the benefits are..thanks a lot

Hi Guppy,

When I was first diagnosed with LS, and after going through the shock of it all, I found this wonderful site and started the baking soda baths.  They were very helpful and the itching and burning was going away, but the white areas lingered.  I thought that was the best I could expect, until I saw Alistar’s post about sodium borate (Borax).  Once I started using the Borax, the white areas faded dramatically and a part of my labia that I thought was gone forever, slowly returned.

After a few months, I stopped the Borax, and the white areas began to emerge again, so I’m sure I will always need that treatment, but not as often. I also discovered a product that I’ve mentioned before, Avogen capsules, which can be inserted vaginally (for vaginal atrophy). I’m post-menopausal, so that may have been a contributing issue for me. When I began the Avogen (avocado oil metabolites), my pale vaginal tissues began to look pinker and healthier.  So all in all, when I examine myself, I now see what looks like a normal, healthy vagina.

I’m not saying I’m 100% cured.  I don’t know if that’s possible, but improvement is definitely possible. It’s a complex situation that involves stress management; avoiding certain foods like dairy, wheat, and sugar; and treating with baking soda/sodium borate/and for me, the avocado capsules. Also, applying oils throughout the day helps to sooth the area and protect it from irritation.

I hesitate to constantly post about these things, because I don’t want to sound like a broken record, but then we have new members joining all the time, so maybe it’s okay to be repetitive.

Anna

 

Thanks Anna, that is helpful again.  I have been using Baking Soda for a long time and most was restored through the use of that.  But the last top part was affected all the time especially when the weather was so hot. 

?Now I'm also using Borax, but have to be careful with the dosage.  However, after a couple of days it already starts to make a difference.  But caution because too much doesn't feel so good. 

?To Guppy - if you wish to try it I suggest to take it easier than what I did.  Small amounts is better for you skin. 

 

 

And thank YOU, Hanny for your contributions  Isn't it strange that our personal insights and tips work better than what the "experts" tell us.  Maybe because this condition is relatively rare, the medical community is not well trained in treatment options.  I'm going to make sure my doctor is aware of it though, so he can tell his other patients.  Maybe that is how we can help the world - by informing our health care providers and getting the word out.

Great thought.

​However, the medical world is bound by the pharmaceutical industry and the insurance companies.  You almost start to feel sorry for those good willing medics who are controlled this way. 

​They know better, is what I think, but are unable to handle accordingly.  And at present we have the freedom to also connect via the internet.  Sticking our heads together and figuring things out anyway.   

Goodness! that is a result...I haven't been much on the site lately and the last I read was that bicarb of soda was the ticket! but it sounds like there is now something even more effective.  I dont have the white plaques fortunately, or any obvious LS symptoms at the moment, but my diet is brutal and strict so thats probably why, my problem lies in not being able to have sex but I am now starting to use a dilator again.  Anyway,  I'm really happy for you and I think many women will start trying borax.

Hanny....Do you wonder what happened to Morrill? I do miss not seeing her posts and I often wonder if she is okay.

Sad, but true.

Good you mentioned it.  I have been wondering about Morrel too.  Hope she's alright. 

allright I mean.

Hello Guppy

What it's doing for me is a very gradual unfusing. It's tiny in some places, not happening in others, but some bits of skin are definately unsticking. I hadn't even realised that the top of my vagina had fused together until one day I could see the hole where the wee comes out of (sorry if that's too much informtion). Now there's a seam down the middle where it was all just smooth skin before. On one side my labia minora has a seam and the ridge of the seam seems to be getting bigger and doesn't look part of the sourrounding skin any more, but somehow different. On the other side nothing at all is happening. Still lopsided and partly better is an improvement. I still have two white plaques which just won't go, but they don't trouble me and the vulval derm wasn't bothered by them.

It's been 8 months and the changes are tiny, but they are changes. Every second day after a shower suits me. Good luck if you decide to try it. I think we've proved here that everyone responds to different things, but there's so much to try...

 

Hi Anna, Can you be specific on how you use borax??I would like to know if you soak in a diluted solution, spray, make a paste?If you can give specific amounts. Someone said not to use too much, as it could cause a negative reaction.I would like to try a spraying then do you rinse off or leave it on? Can anyone enlighten us as to why this works?What are the healing properties ? It is soap, right? Also I found that baking soda burns the inflammation, does Borax? Thanks for your time and advice . Can you take the Avogen capsules by mouth, would that help? ''Cynthia,

Hi, It sounds like it is slowly working for you...it's great when something new comes along and gives people hope, as lets face it we are pretty much on our own with this condition.  I think most people would be horrified if they were even aware of this skin disease and what it does to women. Best of luck with it and keep us posted on how you get on.

Baking soda works because it changes de Ph balance.  Borax is a light salt. Our systems seem to need Borax that enters via foods, in particular via organic foods.  It is my guess that perhaps Borax fills a lack of this mineral in our system and therefore may work to better our skin condition.  But it is just a guess on my behalf.

?At present I'm still experimenting.  At first I put on too much.  Now I just mix a few pinches in my Perin bottle with warm water, making sure it dissolves well.  Then spray on and let it be.  It does calm the LS, is what I experience as I am writing this. 

?Again, it may very well vary from person to person how one reacts.   

Hi Cynthia,

How much baking soda are you using?  I put about a third of a cup in a large bathtub and soak in it for about 20 minutes, and I haven’t had any burning.

Regarding Avogen, I started out (and still do) take the capsules orally for other health benefits, but it wasn’t until I inserted them vaginally that I saw specific help for the LS.

Borax (sodium borate) is a naturally occurring mineral. It’s not a soap, but apparently it has a number of uses and cleaning is one of them.  I don’t know how it works, I just know that it does. Once I apply it, I don’t rinse it off. Also, it doesn't burn. Alistar is the one who brought this to our attention, and here are her instructions:

Add the borax to the water, stirring to dissolve (you don't need to heat the water). Once you've gotten to the point where, when you add more borax, it doesn't dissolve, you then have a saturated solution (meaning the water is "thick" with borax and cannot hold anymore). I applied it both morning and night, taking photos both times of day. Things didn't change overnight, so give a week or two. Dip a q-tip in the solution and apply it. I didn't just "rub" it on once, I dipped applied, dipped applied a few times. Once I'd done this for a few weeks, I started soaking a cloth in the solution and gently placed it on the affected area and lay down with the cloth on. I would leave it 20-30 minutes.

It would be helpful if you could search out Alistar's posts on this site, but that is the gist of it. Hope that helps,

Anna

Alistar's original post was titled 'An experiment with Borax' I just google searched, and it came up about halfway down the page with the Patient logo on the post. Or you could search under the discussions on this site.

 

Thanks, Bridge!  I knew there was a way to find old posts on this site, but I never investigated how.

Anna