Atrophy in Lichen Sclerosis

I was terribly upset by the loss of my inner labia and was confounded when my consultant told me that she has many applications from (young) women for surgery to reduce theirs. Apparantly, in line with many other aspects of the so called beauty industry, they are obsessed with thinking theirs look different to others' or one side is bigger than the other etc etc. She said she always refuses unless there really is a problem eg sometimes they really do protude too much to be comfortable. I understand why she told me to make me feel better. Unfortunately I liked mine just how they were and remain gutted by the change. They are completely gone now. However I think your attitude to your daughter is extremely sensible. Its just that my clitoris is also visably smaller now although so far I can still orgasm and my vagina remains fine. I don't have the fusion problem that others seem to affecting the clitoral hood, vagina and urethra opening, or the itching. I truly hope the same remains true for your young daughter so just keep an eye out for that as well as of course the (rare!) cancerous changes. All the best!

It is very frustrating as my daughter has been suffering for 5 years and constantly told it was thrush and constipation, may be if we had caught it sooner we could have stopped it happening, not sure how much longer she will let me check her. Her consultant kindly told her that she had to check herself as there was the 10% increase risk of cancer - can you imagine an 11 year old understanding how small 10% is!?! - I wonder about consultants sometimes!!

I can well see the problem with continuing to check her as she grows up. The trouble is at her current age I'm not sure how body aware she will be down there - you almost need a sexual awareness of yourself don't you. Out of curiosity just how was she diagnosed in the end? She didn't have the dreaded biopsy did she?

I understand your strong feelings regarding this and of course you are absolutely right in everything you say. In defense of my own consultant she was only responding to MY distress at the loss of my labia and just happened to say that trying to console me was rather ironical for her as she spent so much of her time trying to disuade young women from having un-necessary reduction surgery. She is completely proactive in all the other possibilities for me. I only mentioned it in response to Jo and I still think her attitude to her daughter is sensible IN SO FAR as the loss of labia goes. I consciously drew her attention to the other important issues in case her own consultant had neglected to do so. Gently I admit but I completely agree with all you say Morrell

Sorry, I kind of jumped all over that, didn't I?

That's ok. You're passionate and rightly so. We need more people like you if we're going to get this appalling condition in the public and medical eye as it should be. I've been thinking about the outcry that exists regarding deliberate mutilation of female genitalia in certain cultures. And yet this condition exists causing young girls to suffer similar mutilation affecting the whole of the rest of their lives and hardly anybody even knows about it unless they are a sufferer themselves. I only started with it in my 50's and hearing about Jo's young daughter, your own childhood Morell and now mila14992 'young and scared' has put a whole new perspective on it for me.

You WERE lucky and isn't it appalling that it should come down to luck! I'm sure the diagnosis is reliable without the biopsy Jo, I certainly didn't intend you to think along those lines. I only asked because I had one and I couldn't bear to think of an 11 year old going through the wretched thing. But by the sound of it she's had some pretty horrible things done anyway bless her heart. So was the constipation caused because the anal skin was fragile and painful or because of fusion\adhesion of the skin? The need for anal stretch makes me think the second ....?

I was always constipated as a kid. I remember my aunt being in the bathroom with me and cautioning me against straining. I had stomach aches, too. My whole life I've had occasional bleeding from hard BMs. All of which I assumed were normal, at least too trivial to mention to a doctor.

I'm convinced it's much more common than the stats indicate. So many women and girls are afraid to complain. There should be a checklist for girls to self-diagnose like Mila did on today's new discussion. Jo, weren't you the one who said there's a closed Facebook group?

Hello, yes there is a closed members page, so you just email and ask to join, I believe there are 600 members!

I'm in! There are over 900 members now.

I can't find it

Spelled Lichen Sclerosis not sclerosus, in case that was it. Facebook is not like Google, close never counts.

Hi ya, I am in the Lichen Sclerosus group, may be it's UK based? X

Oh, right. There are several under that spelling. The one that says it's a closed group with 576 members is Lichen Sclerosus - LS

Yep, that's the one I joined, the lady who manages it is very on top of things. It's worth trying everything and then deciding which you find more beneficial I suppose. I have been looking for one aimed at children so my daughter could join in but the adult one is a little too adult and graphic. May be I should just start it on Facebook? 

I think you should definitely join a child one. If you don't have their careful system of accepting photos, then the admin people have to process them to make them available, it might not bee too much work for you to just vet the new members. You're in a dangerous area with young girls and this topic, open to weirdnesses. There are some truly evil people out there. Good reason to do without the photos.