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[Eddie]

Jacky0 and Milliemoo. Are you's both talking about a white almost waxy substance that gathers under the hood? And how much are you talking about?
Eddie. X

[JackyO]

I suspect that is what it is Eddie.  Because the area is fused it must collect under the skin and has nowhere to go and then causes pressure & occasionally becomes infected.  The amount is quite small but more when it's become infected and swollen but no more than the tip of my little finger at worst - so more than squeezing a spot but not copious amounts:(.

The GP said there are lots of little glands in the area that can get blocked.

I think her advice of leaving it alone has given me 6 months of respite and I have no idea what started it off this weekend - could just be build-up over the 6 months or tight trousers rubbing - I've been doing a lot of driving recently & trousers tend to bunch up in that region.

It's just such a depressing nuisance and I feel deformed:(

Jacky

[Elena]

Oh Jacky, I am sorry you feel so bad about it.  I used to feel as you do when I was younger, I guess I've had so long to get used to it and, to be honest, worse things have happened to me since so it's faded into the background.

I am intrigued that 6 months of leaving it alone has not led to a huge build up.  If I leave it for a week there is a build up.  I daren't leave it alone.  When I was googling some years back I found some info from an american site where it was recommended to manoeuvre the area around GENTLY in warm water for ten minutes each day. I started off doing that but then realised that I didnt need to do it every day, or for ten minutes.

Tight trousers are an absolute  no-no for me. I always wear loose ones.  Also, I never wear tights.

[Elena]

Oh Jacky, I am sorry you feel so bad about it.  I used to feel as you do when I was younger, I guess I've had so long to get used to it and, to be honest, worse things have happened to me since so it's faded into the background.  I think perhaps you have it worse than me as my main aim in preventing the build up, apart from not having pain or infection, is to keep the clitoris from becoming buried. I was warned about this by the dermatologist years ago.  Can the GP not refer you to a gynae to see if there is any way your clitoris can be unburied?  My inner and outer labia fused together back in my twenties but that's not a huge problem for me.  Well, put it this way what you don't have you don't miss.

I am intrigued that 6 months of leaving it alone has not led to a huge build up.  If I leave it for a week there is a build up.  I daren't leave it alone.  When I was googling some years back I found some info from an american site where it was recommended to manoeuvre the area around GENTLY in warm water for ten minutes each day. I started off doing that but then realised that I didnt need to do it every day, or for ten minutes.

Tight trousers are an absolute  no-no for me. I always wear loose ones.  Also, I never wear tights.

[JackyO]

Milliemoo

Thanks for your replies:).  Yes, it does sound like my fusion needs some help.  I will try & sort this in New Year.  Really don't want to get into it a few weeks before I travel. 

It's such an odd thing, I had no idea that it was happening until it swelled up 3 years ago when I thought I had an abscess.  The only thing I can remeber is using some shower gel that made me very sore & a few weeks after that it started.  It may be that the raw skin gave tissue a chance to fuse together:(.  I suppose you get used to it and knowing that its such a common problem makes me feel better and that people live with it.

Jacky

[Elena]

There used to be an online support group, I can check and post a link if anyone would be interested.  Or can PM you if link is not allowed on here.

[JackyO]

I've found the lichen sclerosus.org one:). Is that it.

Jacky

[Elena]

That looks like an international forum, the one I found was UK based but a quick search hasnt come up with it yet.

There is another forum on a site called Patient UK but I've just glanced at it. 

Think the link to the other one is on my old laptop!

[Taz2]

Is there anything here? http://www.bssvd.org/index.php?option=com_content&view=article&id=29:lichen-sclerosus&catid=8:vulval-conditions&Itemid=8   It does seem as if the UK support group is for Lichen Planus and not Lichen Sclerosus.

Taz 

[Elena]

That isnt the one I meant Taz; I wonder if it has packed up as it was only a small group.

[lily]

It's patient.uk - I've used it too because of problems.  Feel free to pm me anyone.

[JackyO]

Thanks Lily

I'll check this out in a bit:)

Jacky

[lily]

I'm sure I put co.uk in my post but the co has disappeared 

[CLKD]

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