Recent surgery...

lynn, what had your doctors been telling you these past 18 years? You mention atrophy. Does that mean you weren't diagnosed with LS but only atrophy? Have you been using a steroid all this time? I was first told I had AV but did not use a hormone cream, then a few years later diagnosed with LS. Despite nearly a year of using the steroid the labia that had LS whitening on the edge is now gone.

I think there's a difference between scar tissue and fusing (not that I fully understand the mechanics of fusing). To me if something fuses it sticks together and can't be separated. What I have I would call disappearing, or as you say melting. I can't figure out how that can be resolved with surgery unless parts were "created" out of skin from elsewhere and that just doesn't seem possible.

Does anyone know or had experience with any parts that can be "recreated"?

exactly. I think we are saying mostly the same thing. My atrophy is one of the side effects of LS for me at least. When I was first diagnosed with LS in 2003 via biopsy, the doc had noticed my skin was white around the clitoris. Now through research, this group and observing my own body's process - it seems that when Im in a "flare", its all white down there, almost as if someone bleached my skin. AND not only have the parts "fused" or "melted" together but I also have atrophy becuase what used to be a fleshy situation down there is now void of fleshyness and shape, and is just what seems like everything has flattened out. So surgery would not work for me unless there is some brilliant plastic surgeon who had done this hundreds of time and literally recreates the inner and outer labia from skin grafts, which is not going to happen in my lifetime. So i think surgery is for people who have totally closed up and its causing infection or things to be trapped. As for scar tissue, my whole anatomy looks like scar tissue - like a scar that is pale - my understanding is that when the skin bruises easily or breaks from sex or other stuff, scar tissue forms over the areas and has a different texture. Lets just say i feel like i am the poster child for LS. And im not proud! Ug.

lynn - I feel I am going the same way, but as regards surgery, I did read somewhere that fused or atrophied tissue is 'still there' and can possibly be 'recreated'. This is a memory of something I read so I may be mistaken but it kind of makes sense. Parts of our anatomy cannot simply disappear unless physically cut away surely?

Lynn I am so sorry to hear this is going on and while everyone experiences some atrophy as she ages, the whiteness does indicate a tissue attack. Surgery could open up a path for urine or widen the vagina for sex but recreating parts is a ways off. There's a lot of literature on that in the gender reassignment field and it is complicated, expensive and often several surgeries are needed. Who wants to go through that. . That would be a last chance option. Have you tried any of the de-scarring creams? Mederma or Bio-Oil or Squalene...there're many of them.

Sarb, this may sound over the top, but with leprosy or Hansens' Disease parts "go away". I realize it's a different disease, but leprosy is at least curable as it is caused by a bacteria. I don't know of any other disease where parts of the body evaporate. If LS is an auto immune disease then theoretically our immune system is attacking our bodies, but in what way? I have read there really isn't consensus that LS is an AI disease. Certainly wish someone would figure it out...SOON.

The surgery I had was to open my vaginal hole back up as it had almost fused fully together... sex was impossible doc said she could only fit 1 finger in before surgery (2 after) ... I have had LS of the vulva all my life (I'm 21) but only got diagnosed this year. My inner lips have fused together completely at the top and doc has already said that is too late to save. They've "disappeared" and I only have my outer lips. I was either born like it or it happened from a child but as far back as i can remember it has always looked how it does now.... My clitoris is completely fused over and cannot be seen at all..

I guess the surgery would only benefit you if your vaginal hole was fusing together and you couldn't have sex or had problems urinating? Doc said i need to have sex or put something up there as soon as ive healed to keep it open..

hope this sort of helps x

My inner lips are completely fused together, my clit is covered and i only have my outer lips. doc says "the inner ones are too late to save", so as far as I know it cannot be 'recreated'?

I had fusing at the top of my hole (up to my wee hole) which looked transparent and when I stretched my vagina out to the sides I could visibly see what needed to be unfused as it was so thin and tight.

But at the bottom of my vagina I had scar tissue and I didn't realise until looking at the before surgery/after surgery pics how badly fused the bottom was and how far upwards my hole had actually fused. I thought it was more the top bit but it was more the bottom. I don't know what tools they used to unfuse me but the bottom bit feels blistered and is so sore and swollen.

I can tell the difference in the pain as well.. the bottom is so much more sorer than the top. I guess that's due to the thickness of the scar tissue at the bottom? PAINFUL! x

Doc says my inner lips are completely fused and there is no saving them as it has "gone" ... wish I knew what that meant x

My inner labia are fused together completely and are always completely white. No matter how much steroid cream I use, the colour never goes.. Doc says the fusing of my inner labia is "too late to save" and has "gone".. /:

(before surgery) If I lay with my legs open and stretch my vagina out to the sides everything is flat. I have the same as you my whole vagina looks like scar tissue..

I had the surgery and my hole wasnt completely shut it was approx 2cm in length and about an inch width ways. Doc said before surgery she could fit 1 finger inside after she could fit 2... I am way too sore to be trying yet! Ahh x

Beverly, strangely enough i thought of leprosy too and questioned my reasoning. And from all the chat on here about surgery I can see there is little hope of regaining the architecture. I guess i was clutching at straws. I am with you on why cant doctors work out if it is actually an AI disease, there simply doesnt seem to be enough research being done. It is such a frightening process that we can do nothing to stop. I find myself angrily applying steroid thinking to myself 'Oh no you dont'! Battling with my own body!!

Sarb I find myself applying the steroid cream begging it to work 😦 x

lynn, you don't mention using hormone cream. Are you, if so which one and for how many years? As I had already been diagnosed with AV but was not using any estrogen cream any mild discomfort I had been feeling I assumed was caused by the AV. I stopped having pelvic exams (too uncomfortable) and due to age they didn't seem necessary. Three years after diagnosis went to see a gyn and was then diagnosed with LS. That was a year ago.

Since then I have been using both a hormone cream (estradiol) and used triamcinolone steroid. I found the hormone cream plumped everything up and added vaginal moisture which certainly helps. My response to both was rapid and positive. However, about 6 months later a buzzing feeling on the clitoral hood began, so I used the steroid daily. Saw the gyn 4 months later (I had been out of state) she upped the steroid to clobetasol, The buzzing seems more or less under control, but one inner labia is gone and I hadn't felt anything unusual there.

I agree the surgery sounds appropriate only for scar tissue. I have no idea what if any options there are for women like us who are progressively losing parts of our anatomy.

Donna recently mentioned the O shot which I have seen online, but not as a treatment for LS. Are you familiar with it? I will do more research . Will PM you an article as we are not allowed to include links.

dr.n. tissue attack as in auto immune - my body is attacking my own tissue? Its been going on for a while now. I have not tried scarring cream, I'd be interested to try any natural supplements. I have been told that the white skin is a sign that the condition is active and to use clobetasol, but that worreis me as it is a steroid and sometimes it doesnt take the white away. I also wonder what kind of surgeon does surgery not just for vaginal situations, but specificlaly for LS patients - someone who is a specialist in the area. Thanks for your compassion!

lynn, did your dr not tell you that LS is an auto immune disease?? Curious as to what exactly your dr said. There are some who disagree re AI, but I don't think they have any firm or proven theories as to what is causing it. If you read up on it one theory is it is bacterial, but I think that would have been proven via testing by now.