When does the fusion/adhensions/change in structure occur?

Fusions/adhesions - this is how I handle these but it may not be for all of you!  As soon as I get that nasty "caught my skin in a zip" feeling, I whip out my mirror and, if their is a piece of labia stuck to something it shouldn't be .............. I take a deep breath and pull it apart.  It hurts!  It really hurts but I massage the area, apply ointment and within a few hours I'm back to (ab)normal with no bleeding, pain or itch.  I think you have to act quickly or it's too late.  Since I have adopted this procedure I haven't lost any more structure. 

Judy I think there's a clue to the answer to your main question in the original nineteenth century name: Lichen Sclerosus et Atrophicus. Two separate things. In my forty years I don't see a connection between the white patch I've had for many years only on my perineum and the loss of architecture (loss of plumpness in the labia) and the fusing. I've had various kinds of fusing:

1) At age 61 the series of tiny paper cuts in my raw inner labia healed over my clitoris like a zipper. I had a bad flareup culminating in an abscess under the closing seam.

2) A few months ago I had a large tear in my perineum that folded shut too far and narrowed my vagina from three fingers down to two. But I strteched it open as Kathryn here described and used lots of oil to make sure it healed flat – open, no fold.

3) Looking back over the decades of not using a hand mirror I believe I had reduced labia architecture in my early twenties, mostly from remembered remarks about how it all appeared by my husband and by my GP.

4) And in my late thirties in a hopeless marriage with no sex for years I did not that my clitoral hood seemed to be covering the clitoris. At the time I blamed myself (use-it-or-lose-it). But I think this stuff only happens to women with LS.

It makes perfect sense...Well said!!

 

Well Judy everything is as clear as mud to us and also to our doctors. Like with any skin complaint they're clutching at straws and it looks like its down to ourselves to find out what helps. As for the why;s and wherefores who knows what happens when and why it does. My gyn wants to do a biopsy but think might pass as almost everyone whos has had one has no clear diagnosis and are all the more painful for it. I'm in no doubt that docs are no more knowledgeable about this awful condition as us sufferers are unfortunately. 

Judy12533 said -  " It seems adhering occurs when you don't know..it just appears one day. Is it occuring when we itch or when we are raw and irritated?  Do the white patches causes the adhering and covering over our parts?  Does the fusing happen at the white patches or can it happen anywhere else on the vulva where we don't have reddness, white patches or itching ? "

I saw it happening once Judy and I have no white patches, if that's any help. Also there was no flare-up or itching or even soreness there at the time.

 I had had LS for about six years and had become increasingly alarmed at the closing up of my vulva. 

One night going to bed and with this on my mind I decided to self examine using a magnifying mirror and there it was - in process! Half a centimetre or more was gooey and when I pulled the two sides apart left strands of goo between them. I must say it was very sticky, and when I let it go it wanted to stick fast and was even harder to prise open again, in fact I could only manage a small piece that time.  I thought of putting a thin piece of tissue between the sides  as I had a box of tissues near me, but worried that the tissue would then become immersed in the fusion. I put my finger between the sides and hobbled to the bathroom to find something else to use but before I could it had stuck fast anyway and that was it. 

 I think keeping well oiled is the answer, all the time as you never know when it will happen. I've had further shrinkage since then but gradual and seem to be holding my own for the last several years.