Hi, have been diagnosed with lichen sclerosus for a few years. The mad itching has stopped and I though it all better but to my horror, my labia minora and clitoris have practically disappeared. i know some folk have said the parts have fused rather than shrunk. Is this true even of the clitoris? I can't see how it can have fused?? There seems to be a lot less flesh there. Am thinking to use an oestrogen cream to plump it up. It also feels sore in the area after orgasm.
Any advice? Much appreciated
I also have had LS for about three years.I am pretty much under control but labia minor on right side has what I called "melted. Only a small amount left. My specialist said that this can happen even when in remission and to just use a little extra clob on it to try to keep it from melting any more. She said this does not happen to everyone with LS, (guess we are we are theunlucky ones that it did) and she did not seem to concerned. Of course it is not her labia that is disappearing! I do put a very small amt of estrace on it once or twice a week to see if that will help stop it. This has not happened to my clitoris but I do have some scar tissue there.
Hi Andi,
Have you looked online at the labia library to get an idea of what different labia’s look like? You can google it. I found this helped me get a perspective on what’s disappeared/fused.
There is also a good article which I found put fusion and shrinkage into perspective for me on lichensclerosus dot net. Not sure I’m able to post it here.
http://www.lichensclerosus.net/docs/FUSING.pdf
Perhaps the dermatologist can advise you on your situation if it is atrophy maybe the estrogen cream could help.
Samantha
Those of us who use this forum on a regular basis will know that the "experts" know very little about LS. Fusing and tissue destruction would appear to be par for the course and, I suspect, happen to the majority of us over time. I am now unable to have intercourse or even a cervical smear as the opening has fused together too much and either action causes tearing and bleeding. I know there are some gynaecologists who recommend an op. to open the area up again but, when the tissue is already fragile, this is not an option for me. There are some aspects of this condition which you just have to accept or you will spend the rest of your life stressing over something you cannot change. I have found using organic virgin castor oil to be the only thing which relieves the itching, splitting and sticking. Just wish I'd heard about it a few years ago!
Same here andi6406, I haven't had the itching like some people though, I thought I was getting better then within a few days noticed both sides of minora have melted away flat, no edge no ridge anymore I found it very frightening. Of course we are frightened something experts do not understand. When something changes with our bodies we get frightened, it hasn't fused seems to have melted like candle wax. Clob hasn't stopped it doing it, interestingly it's where the LS first started as well. X
My labia minora has gone and my clitoris now seems to be moving into my vagina. I am using Clob and Borax but whether they are having any effect or not is impossible to tell. I still get itching as well. I wish there was a good proven solution for this.
Thanks so much for the link. I hadn't seen that before and it really explains a lot.
Dear andi,
My sympathies for your loss. I also have lost a fair bit of my labia minora and my clitoris has shrunk. I now make sure to apply Clob to the remaining clitoris as well as to the labia minora. Originally my doctor instructed me to apply it only to the labia minora. I know it is shocking. Early on, part of my labia minora fused together a bit, but mostly I've experienced atrophy. On this site I've read other ladies' accounts of the skin over their clitoris fusing together so that the clitoris was completely covered. I've also read accounts of ladies whose clitoris has completely disappeared. I wish you all the best in preserving your remaining labia minora and clitoris. It sounds like your itching and inflammation is under control, so that is in your favour.
Metta
Thank you for the link, Samantha. It is a really good explanation of the processes involved. What I don't understand, as someone who is recently diagnosed, with few symptoms and already extensive fusing evident, is how the fusing can take place so silently? How can such an inflammatory process occur with no symptoms? Thank you to anyone who has any thought on this.
Hester.
When I have had a flare-up in the past it always seemed to be focused on my clitoris. The only way round this for relief for me is to use the Clob cream twice a day for about 5/7 days. Nothing else, unfortunately, works in that particularly sensitive area.
I have also lost nearly all my labia minora but I am not unduly stressed about it anymore because there is nothing I can do about it. One tip that might help is to always make sure you use some kind of oil on your undercarriage before bed as this helps stop the fusing.
I am rather upset at LS and losing clitoris I mean that is my woman hood and without it I feel I'm a eunuch - yes usually for men who've lost manhood but as a woman who's lost womanhood.
I thought it was steroid cream not oestrogen cream. I do need to go back to Gynaecologist.
I found the article provided by Samantha quite good.
It's an interesting article about fusing, but it doesn't explain how it can happen so quickly and, more importantly, how the fusing can occur with no symptoms of inflammation or irritation of the labial tissue. I had no symptoms at all but my labia have fused completely over my clitoris. Does anyone have any idea how this process can occur in such a hidden manner?
I'm sorry that you are also going through this, but thank you so much for posting. I have only recently been diagnosed and my clitoris is sliding down and parts if me are growing together and I am terrified. Iwas starting to panic and immediately googled it and found these posts. I'm still scared of what the future holds for me and my lady parts, but at least now I know I'm not so alone. Thanks again.
Me too Im only 26 Im terrified I dont want to tell my boyfriend but he keeps looking at my vagina in suspicion and now hes avoiding me , I just know hell think its an STD and leave i DONT KNOW WHAT TO DO i FEEL LIKE MY LABIA ARE BURNING OFF!!!
MY CLITORIS ALSO SLID WAY DOWN FROM WHERE IT USED TO BE IM COMPLETELY HORRIFIED!!!
Hi, completely new here. So excited to find this forum. I’ve had lichen Sclerosus for about 5 years. See a dermatologist with an interest in vulval disorders. Use clobetasol cream, once a week for maintenance, but daily when a flare up. Noticing my labia minora is virtually all fused.
Currently, and the reason for googling support groups is that my cliteral area is stingy/itchy all the time at the moment. It’s like my hood is disappearing. I’m concerned this is going to be the norm and I can’t handle it. I’m putting clobetasol on daily on the cliterus at the moment, hoping it helps. Any ideas? Currently my sex life is fine (well it was pre hysterectomy 6 weeks ago, just waiting for clearance to restart), and I don’t want to lose this yet (if at all). I’m 42.
Hi there, try putting the Clob cream on twice a day for about a week to ten days in that area and hopefully that should do the trick. When I have problems it is usually in that area and its horrible..thank goodness the clob cream does the job!
Quite a few of us have lost our labia minora and I always say that whilst it is upsetting there are worst things, and some women are actually born without their labia minora and they do fine. Remember to use dilators regularly which keeps things open as LS wants to shrink and reduce, and the dilators stop that from happening.
Hi, I have been having the same problem (clitoris and labia minora disappearing) but today I checked it and it's so weird, but I think that the clitoris is reappearing. Before it almost seemed like it was just gone but now it almost looks like it is emerging from under the fused part. I haven't been putting anything new on it that I can think of, except to resume using my Terrasil (but that is for secondary infection). The only new habit for me is eating and drinking copious amounts of buttermilk and organic cultured cottage cheese. As I'm writing this, I'm also realizing that I started taking a vitamin D supplement this month. (The one i'm using is a liposomal Vit D supplement). I read somewhere else on this forum that some people had success with vitamin D and acidophilus.... I think the buttermilk and cottage cheese have lactobacillus. On the other hand, I still have the itch and so honestly, I don't know what's going on. But I just thought I'd mention it because several people have also mentioned that they had to quit dairy. I am lactose intolerant and dairy give me sebborrheic dermatitis... but with the buttermilk and cultured cottage cheese I don't have a problem. Since I have osteoporosis, I am going for it. So basically I don't have any explanation but I thought maybe for some of us, the clitoris isn't gone but is hiding under the scar tissue. Hope so!
Labor for 4 years no labor or sign of clitoris having a current flare up just by the way crying doesn’t do anything except give me a headache
Some body please help me. I have severe itching and dryness. It's the vulva, anus and clitoris. I have been to the doctor for two years and they can't find what's wrong. I have gone to a GYN and he said I don't have LS but no one will test me for it I have talked to my doctor and she said it's something wrong with my nerves. I don't even have a anal twitch please I am desperate for help