Glad you got it lol its hard to explain things over typing lol..
The bottom bit of my vagina was a lot thicker scar tissue than the fusing at the top..
Have you got any steroid cream for the tightness? I did find before surgery using steroid cream moistened the area and it felt less tight and didn’t tear/cut as easy.. although sex was still impossible I used it on the inner lips area mainly.
Thank you for the support 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!!
Sounds awful. You poor thing. You sound very brave. Good that you are counting down the days and each day it will get a little better. Do you have a rubber ring to sit on?
it was with every painful/sore moment! Before the op I could not have sex with my husband, vaginal opening had really closed! surgeon not only sorted that issue but smoothed out the scaring I had from the stitches I received over 28 years ago from giving birth to my son! I was very lucky that my private health insurance paid for the op as I don’t think the nhs surgeon would have done as much! stick with it! x
im in california
I had my treatment via NHS in UK x
Thank you for the support x
I don’t have a rubber ring 
Don’t know any local shops that would sell one ..
Oramorph and Dermovate seem to be taking the sting away just can’t get rid of the constant ache at the bottom of my vagina when I stand/sit/lay down x
Exactly the same as me!
Haven’t had sex for 18 months.. doc says put “anything” up there to keep it open once the soreness has gone down.
I also asked her to have a look inside as I thought (still do) that there’s an issue inside too (because when my partner tried to get in i felt there was a ‘wall’ and to get through it felt like his penis had to pop thru something if that makes sense??).. She said all was fine and she thinks its because I was already expecting pain/soreness during sex my vagina was having spasms and tightening up… sorry for the details just wondering if you had this? x
Sarb I find myself applying the steroid cream begging it to work x
Yes I did and I know exactly what you mean by the popping issue! it will get better! my surgeon prescribed dilators, various sizes, to use a couple of weeks after surgery! I have also been prescribed vagifem to take twice weekly for maintenance but I use I a week! x
the hole opened back up by me using vagina stretchers its one i got off of ebay i could put it in and leave it in over night and also using different size dilators ,lube and once i got it open enough got a boyfriend and started having regular sex like once a week sometime we were able to do twice a week , i find if i go long periods of time with out sex i start to close up some , just recently we went two months without sex because my BF was out of town alot on business and i could tell my vagina hole has gotten smaller and the start of sex was a bit hard for me but once it got in it was fine but after i was soar for three days so i know now i have to have sex at least once a week to get it normal again ,once i was able to have sex back to back two times in a row which was something i haven’t been able to do in years ,you know that saying use it or loose it ,its true for us so use it as much as possible so the whole stays open plus after sex my vagina feel normal ,looks normal it kind like sex is helping the situation some kinda of way ,so i forgot to tell you i do go to bodylogics MD’s to get my hormones checked regularly thats the wellness doctors i mentioned earlier ,if i had not gone to them my condition would have gotten worse of course my medical plan do not cover the charges but it worth it to have a normal life again so if you can goggle them and read up on them and the O-shot the have lots of utubes on it i think im gonna get another one on my next office visit ,i hope everything goes well with your surgery i know this whole thing is very hard for you because it was extremely hard for me going threw it i myself almost looked into having surgery but went the other route first ,also we have to be careful because a lot of doctors don’t even know alot or even understand this condition and we become test dummies for them at our own expense ,so we kind have to be our own doctors and do lots of research to find answers to our own conditions ,i hope this info could help
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.
Thank you for your help x
Do you know if the dilators are cheaper on the NHS or off Ebay? Doc did say to me sex will help… too sore to try yet but feel nervous already! x
really! Was the popping feeling inside or outside? Mine was inside… My surgeon hasn’t prescribed any dilators.. What does the vagifem do? X
Also, I am feeling a constant ache at the bottom of my vagina just wondering did you get that day 2 after surgery? X
it took nearly 3 weeks for me to be able to sit comfortably and it stand for a good week when I went for a wee! the vagifem is a hormone (like a tablet which I shoot up my hoofer (Sorry for terminology) )! it keeps the vagina moist and it has helped! it’s early days for you and you will be sore! I found it a painful experience but it will get better, plenty of salt baths…it will be worth it x
Thunder_Thighs, may i ask where you live? Sounds like your doc was good and was able to also smooth out scar tissue? Im wondering now since i have fusing at the entire top area (from clitorus up) if that can be unfused and maybe there is actually folded skin underneath? So confused about the anatomy situation down there!
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!
Yes I’m struggling to sit comfortably and even when I’m standing I can just feel the constant ache at the bottom of my vagina.
Doc said not to soak in bath for 2 weeks? I’ve just been rinsing myself with the shower head just warm water.
Did you find you had to strain to get your wee out because mine are struggling? X