Lichen sclerosus Clitoris disappearing
Posted , 24 users are following.
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
0 likes, 26 replies
Guest andi6406
Posted
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.
tracyg Guest
Posted
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.
monique93969 tracyg
Posted
monique93969
Posted
samantha1970 andi6406
Posted
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
fran24104 samantha1970
Posted
Thanks so much for the link. I hadn't seen that before and it really explains a lot.
HesterBell samantha1970
Posted
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.
kathryn07219 andi6406
Posted
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!
mel78288 kathryn07219
Posted
i feel for all of us on the forum .
as said before, we are rare and this disorder is scary. I went undiagnosed for years and the doctors would just prescribe topicals for yeast infections and clobetasol but it wasn’t until a good 10 years later (and I started this probably around 24-25 years old and I am currently 48 ). my Internal medicine doctor did a punch biopsy and said, I think this is what you have. I then went to a specialist for skin disorders and they confirmed it.... LS.
I can honestly say I wish I had known then what I know now because I would have been much more consistent with the clobetasol. I know if I had, I would still have some of my parts.
for the gal above whose boyfriend is looking at you funny... you need to have a good chat with him if he's the one you were gonna marry. if not, you go find yourself a good guy whose father and grandfather are totally bald- yes, i said bald! because While you are losing your parts, he is losing all his hair and, it’s a pretty fair trade!! also, stay away from guys who just wanna do the wild monkey dance because that's not gonna last. find a guy who loves you for your personality and life similarities .... thats what you will relay on when its too painful to engage.
as for me.... i have been with my husband for 28 years ( i got lucky he started balding about 38 years old) but i can actually say... i am now scared beyond because my clitoris disappeared within a few months of my self checking.my inners have been gone for about 10 years now. i am now left with patches and a tiny opening to urinate ... everything is shrinking and now I'm wondering... what's the next phase?
its just so crazy to think this is happening but I'm thankful to know I'm not alone. hopefully we can all help eachhother prepare for the next steps through sharing because I'm
too embarrassed to talk about it with my dear friends.
sending you all a hug and a reminder don't scratch!
sue162 andi6406
Posted
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
fran24104 andi6406
Posted
Metta andi6406
Posted
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
Guppy007 andi6406
Posted
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.
ravenrose andi6406
Edited
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.
mel78288 ravenrose
Posted
i feel ya....i think i will take the insane itching over losing my clitoris!