Scared

Thank you so much for the advice!!

Hello, this might be a dumb question, but if I'm not having any type of a flare-up am I better off not putting anything on at all, like any creams or anything? Thank you!

Not at all a dumb question.  At first I was more regular with applying the steroid, but as LS started to become less active I started to use it less frequent. 

?What I have learned that a person has to stick to a certain regularity, to be able to maintain the 'status quo' so to speak or LS will ever so gradually become more active again.  (most recent experience while camping)  All is well as long as I stick to my regular routine. (smallest amount of steroid once a week included)    

Ok thank you. Do you use other things on other days, the days you're not using the steroid cream?

Yes, I use a Perin spray bottle in which three pinches of baking soda are added to the water to rinse my bottom after every bathroom visit.  Deb all dry and then apply a small amount of coconut oil.  I take a bath every other day in which one third of a cup of baking soda is added. 

​I also use hormone replacement. 

 

I guess I should've mentioned I did discuss it with my doctor and she was so impressed by my results she's planning to share the info with a couple of her other patients who are also dealing with LS.

Mary, we're all different.  So can only speak from personal experience.  It simply is not "one size fits all",  What works for one, may not work for another. 

?A few things are known though:  LS likes an alkaline environment.  The urethra prefers it more accidic for instance.  Depending on what my body tells me, I rinse with baking soda and sometimes with apple cider vinegar. Both adjust the pH balance. 

I hear you and I have heard others advise about baking soda and 'borax' . I know we are here to share info and experiences and knowledge. I think it is important to think critically especially when it comes to our health care and consult professionals. A physician should be advising on all methods of treatment, that is why I say to ask them before trying these home remedies, that is unless you distrust your physician more than you trust someone on this forum. It is very useful to discuss my problem with other women with this disease but I think we should be careful in giving and taking advise that may not be advised by the medical community or may interfere with the prescribed medical treatment. I know many may have good reason to be frustrated with their condition and the attention they get from their physician, but we must continue to do our research and look for what can treat our medical problem with the help of our medical professionals. I will discuss the baking soda at next appt, for now I am just washing with wet towel after urinating and applying Aquiphor oitment as a moisturizing barrier for the skin.

I have aquaphor, I think I have the same stuff as yours, at least I hope it's the same stuff.. Do you use the steroid ointment? And I'm going to ask my doctor also about the baking soda. Have you ever heard of emu oil?

What is this fusing and shrinking that many are, writing about? Is that from using the steroid cream too often?

Do you ever do a baking soda bath or make like a paste and apply it?

My experience is that the medical world does not know all.  Therefore I think that the patient has to stay alert and observant as well.  Why do we all do breast examinations for instance.  It should be the same for the vulva area.  But at present this is not at all promoted by your doctor. 

?What's more, I now know of some gynos who suggest the use of baking soda.  Cause glob can not do it all either.  There is simply not enough knowledge about our condition yet.  And no research is done either. 

 

I have done that just recently, understanding that baking soda has a similar effect as borax.  The spot above the clitoris still gives some problems especially while it is so hot, so I tried it to calm it down.  It calmed things down, but have not yet made observations.   

Hard to say whether the steroid cream gives at times a negative result.  Fusing is part of LS.  Shrinking happens as well.  That's why many of us try to de-fuse with for instance baking soda and apply coconut oil to prevent from fusing again.  (doctor encouraged) I dilate to prevent from further shrinking.  (doctor's advise) and take hormone replacement to keep all flexible.   

Might be a dumb question, but could you please explain the fusing to me? Thank you so much for your time. I really appreciate it

Well, what happens is that the left and right side of the outer labia start to stick together.  (my inner labia was already non exisitant) That's why for instance in my case the opening to the vagina and almost the urethra completely disappeared, hence the dilation procedure in the hospital and continued use of a dilator afterwards and still every other day.

?Would I have known all what I know now, perhaps I would have been able to prevent it from getting so bad.  Thanks also to the accidental discovery of baking soda rinses,  because I was afraid of infection after the procedure in the hospital, I'm now as good as fusion free and keep a regular maintenance of baking soda baths, baking soda rinsing after every bathroom visit and applying of coconut oil,  and every other day dilation.  All makes that it is very liveable.  I can sit normal, ride my bicycle with a special saddle as not to irritate the sensitive area, and have intercourse with my husband.  In other words, in spite of the heavy maintenance, I have my life back.  

I am so sorry you have had to go through all of this. You have given me a lot of Hope and have helped me so much, and I thank you for that. I hope I can prevent this from happening. I'm learning so much from you!

How much baking soda to how much water are your rinses?

I use one third of a cup in the bath.  For the rinses I use three pinches in a Perin bottle.  I rinse after every bathroom visit, dry and then apply a small amount of coconut oil.  The bath is every other day. 

​When away from home I use my pouch, which I made especially for this purpose.  It contains:  a small container with coconut oil, a small container with baking soda, some small pads and a small towel.  Plus a Perin bottle of course.  The pouch goes in my sling bag.  Easy to carry. 

​Glad to be of help.

​

Thanks again!

Yes I've heard of emu but not tried it.

After third visit with third physician, I have learned more as time goes. Surprising to me is that keeping the Aquiphor on my vulva and anus area I have only had one irritation that required using the Clobetasol in the last 10 days.

And I am on a hormone patch.

It is a day to day thing for me. I will keep all meds and creams available at hand I assume the rest of my life but that's okay.

At this point my biggest advise to share is the Aquiphor I purchased in a jar thru Amazon cheaper than what you can find st WalMart in the baby dept.

I'm REALLY new to this LS stuff. When I read about the fusing and shrinking I was terrified. I asked my Demetologist why this happens. There are microscopic cuts from the symptoms of LS that heal together and cause the fusing. Example: If you were to burn your fingers and then wrapped them together with gauze the skin would grow them together in the healing process. Something similar happens in the vaginal area. Often this is caused by the inflammation and cuts from itching the skin. The 'shrinking'  appears to come from atrophy. Still working on figuring out the myriad things that can cause atrophy (or shrinking).

Thanks for that explanation regarding the fusing.  I didn't know that.  It explains a few other things to me as well - only use a very thin layer of the steroid for instance.