Hi all, I have posted my story before for those who remember.. I had surgery yesterday to rectify the fusing and narrowing to my vaginal hole. The surgeon cut the fused skin up to my 'wee hole' and at the bottom of the hole down to the gooch?.. (apologies if you don't understand it's hard to explain). Today I am very sore, taking Oramorph and plastering Dermovate all over. I was just wondering if anyone else has had or is due to have this surgery?? Thank you xx
Hi, I had it last year, my advise is to get a rubber ring to sit on for the healing period...it really does make things a lot less painful... and it WILL hurt when you urinate so helps to have a sodden flannel at the ready (water only). I found the first 4 days the worst and it then improves pretty rapidly. I wish you all the best x
Hi! I had the same surgery, with a BIOPSY, over a year ago and it felt like someone had driven a bus up my parts! I was bruised and sore for a out 3 weeks! I had salt baths every day and kept putting cream on where the split was (where it was unfused)! it will heal ...honest😊😊
reading other people's posts and yours. this is really interesting to read that several of you have had the surgery. My situation is weird and I often wonder if I will need surgery. The problem with me is atrophy - my anatomy is literally disappearing. As though all the parts are melting together and it seems I have less and less of what i used to have. So how on earth would I have surgery if there is so little left? I have had this diagnosis for 18 years and at time of diagnosis I was already noticing my skin going white and everything getting "simpler". So if they were to cut something open i dont understand how that would work out? My inner and outer labia have completely fused together as one, my clitoris is barely visible and surrounded by a whitish ring, everything above it is fused and flattened out. So I guess Im interested to know if what i am writing makes sense to anyone.
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?
Thanks for your feedback, when one has atrophy down there, or in the case of my anatomy, the tissue literally shrinks and thins out, so there is nothing hiding underneath my fused skin . also i know that when scar tissue builds up its scar tissue and that is really hard to work with, if i were newly fused down there i suppose that would be changeable. honestly i dont even know a specialist i would consult about this.
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.
wow i am so sorry you had to go threw surgery for the skin condition i did have almost the same situation and also thought i would need the same type of surgery but went with a wellness doctor and her advice was the O-shot ,read up on it but at the time of the appointment to do the o-shot she could barely get the needle inside of my vagina to even do it ,i remember her just injecting where she could also she couldnt even get her fingers in there to open it up for the shot but later i could tell a differnce woth the o-shot and clobetasol 0.05 which i had to use it everyday for a month straight and now i use it twice and sometimes once a week, now i can get a paps smear and also have sex ,, what im trying to say with this this condition is due to a skin condition it dose not stop with surgery it will still shrink back down over time if you do not keep up the health of the skin in that area
Yes sitting down is very painful.. I have to either sit on the side on my bum cheek or lie down... It feels as if I'm wearing tight jeans that are digging in my vagina. Constant ache at the bottom of my vagina and stings 24/7.
Having a wee stings and I just apply Dermovate after each wee.
Day 1 over... onto the next xx
Ahh yes the bus i can relate to!
Did you find the surgery helped? and what cream was you applying after surgery? My surgeon said plaster in Dermovate. Can't wait to feel improvement its so sore at the mo x
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
Looking at my before surgery & after surgery pics I can visibly see that the fusing at the bottom of my vagina was alot thicker than the fusing at the top (just underneath wee hole)... The fusing at the top was almost transparent and before surgery when I stretched my vagina from the sides you could see the tightness of it. But the fusing at the bottom was thick scar tissue. I'm guessing thats why i had to go under GA and why the bottom is so much more sorer than the top!!
i have the same as you with the thinning and fused skin at the top... doc says my inner lips are fused and theyre too late to save.
Are you in the UK? X
Thank you for replying x
How did your vaginal hole open back up to normal size after the injection if you don't mind me asking?
I have no idea what tools they used to open my vaginal hole back up but it feels blistered and looks and feels so sore. Urinating is chronic.
Surgeon did say as soon as its no longer sore and has healed (putting it bluntly) just put something up there to keep it open... haven't had sex for about 18 months as its been impossible... x
OMG you poor thing. Yes I understand your lingo haha. I find the area to the entrance of my vagina in the lower area feels tight. When I have sex it feels like its been stretched and causes pain. This totally sucks. I hope it doesn't get any worse. I hope you heals fast and it helps you
OMG you poor thing. Yes I understand your lingo haha. I find the area to the entrance of my vagina in the lower area feels tight. When I have sex it feels like its been stretched and causes pain. This totally sucks. I hope it doesn't get any worse. I hope you heals fast and it helps you
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