Comments for Worldwide Lichen Sclerosus Support http://lichensclerosus.org Mon, 20 Feb 2012 21:17:54 +0000 hourly 1 http://wordpress.org/?v=3.2.1 Comment on The Basics (main information) by admin http://lichensclerosus.org/the-basics/#comment-5305 admin Mon, 20 Feb 2012 21:17:54 +0000 http://lichensclerosus.org/?page_id=21#comment-5305 Hello Gal. I am familiar with Burt Bees products. The thought of putting it on my genitals makes my eyes water just thinking about it! I also have LS on other parts of my body and I find that creams that I would never dream of using on the lady part, are good for using on the body LS. Hello Gal. I am familiar with Burt Bees products. The thought of putting it on my genitals makes my eyes water just thinking about it! I also have LS on other parts of my body and I find that creams that I would never dream of using on the lady part, are good for using on the body LS.

]]> Comment on The Basics (main information) by admin http://lichensclerosus.org/the-basics/#comment-5304 admin Mon, 20 Feb 2012 21:15:27 +0000 http://lichensclerosus.org/?page_id=21#comment-5304 Hello Mo4. Its always hard to hear of another young one diagnosed with this. I expect we can all remember being 12 and finding everything about growing up and being a woman was very embarassing and having LS on the top of it is really challenging. I know so many good dermatologists who treat young girls and sometimes advice about future care and the importance of checking and using treatments comes best from the doctor. I can only suggest that you try to offer your daughter the view that every part of her body is important and that skin everywhere on the body needs to be cared for - not just make up and fun things but all of her skin. That in her case, becoming a woman means extra attention and checking and treating is a good thing, not just for her but for every woman. Sometimes it is not easy being a mum - I hope this helps a little. Hello Mo4. Its always hard to hear of another young one diagnosed with this. I expect we can all remember being 12 and finding everything about growing up and being a woman was very embarassing and having LS on the top of it is really challenging. I know so many good dermatologists who treat young girls and sometimes advice about future care and the importance of checking and using treatments comes best from the doctor. I can only suggest that you try to offer your daughter the view that every part of her body is important and that skin everywhere on the body needs to be cared for – not just make up and fun things but all of her skin. That in her case, becoming a woman means extra attention and checking and treating is a good thing, not just for her but for every woman. Sometimes it is not easy being a mum – I hope this helps a little.

]]> Comment on The Basics (main information) by admin http://lichensclerosus.org/the-basics/#comment-5303 admin Mon, 20 Feb 2012 21:07:02 +0000 http://lichensclerosus.org/?page_id=21#comment-5303 Hello spmc. You are doing very well with learning how to navigate the internet. Nobody knows why lichen sclerosus happens and every doctor has their own way of either answering or avoiding the question of 'why do I have this' - it is still a mystery and there is a lot of speculation all over the internet. When I was diagnosed in 1994, I chose to make sure that I kept the discomfort under control and have a good quality of life and this is a good plan. One day, someone will find the answer for us but in the meantime, we need good doctors with lots of care and kindness and expertise to keep us comfortable and enable us to have a good quality of life. I also have this problem on my arms and leg. Be well spmc. Hello spmc. You are doing very well with learning how to navigate the internet. Nobody knows why lichen sclerosus happens and every doctor has their own way of either answering or avoiding the question of ‘why do I have this’ – it is still a mystery and there is a lot of speculation all over the internet. When I was diagnosed in 1994, I chose to make sure that I kept the discomfort under control and have a good quality of life and this is a good plan. One day, someone will find the answer for us but in the meantime, we need good doctors with lots of care and kindness and expertise to keep us comfortable and enable us to have a good quality of life. I also have this problem on my arms and leg. Be well spmc.

]]> Comment on The Basics (main information) by admin http://lichensclerosus.org/the-basics/#comment-5302 admin Mon, 20 Feb 2012 21:00:28 +0000 http://lichensclerosus.org/?page_id=21#comment-5302 Hello Jade. Sorry to hear about all these problems. There are all sorts of things that can happen to the vulva that are not LS and it would be best to try to get medical help and a diagnosis of what is causing the symptoms, they may not all be related to herpes, but someone could explain more about it to you. There may be more than one thing going on in that area. You do not say who diagnosed the herpes? Sometimes vulval conditions are misdiagnosed as being herpes. The issues with herpes are not always about 'catching' it in the way you describe and there is an excellent support group, here in the UK, who may be able to help you http://www.herpes.org.uk/ Sadly, this site cannot tell you if you have LS or not but your GP can refer you to a dermatologist who runs a dedicated vulva clinic. A list of some clinics can be found at www.bssvd.org Anyone who has problems in this area of the body is 'unlucky' but in your case, there may be a lot of help for you and the possibility of getting well, it is all down to finding a good doctor who will make thorough examinations and tests and who is knowledgeable about vulval disease. In any event, you deserve to find the best of treatment so that you can live a normal happy life with your partner. Please come back and share with us, as to how you get on. Hello Jade. Sorry to hear about all these problems. There are all sorts of things that can happen to the vulva that are not LS and it would be best to try to get medical help and a diagnosis of what is causing the symptoms, they may not all be related to herpes, but someone could explain more about it to you. There may be more than one thing going on in that area. You do not say who diagnosed the herpes? Sometimes vulval conditions are misdiagnosed as being herpes. The issues with herpes are not always about ‘catching’ it in the way you describe and there is an excellent support group, here in the UK, who may be able to help you http://www.herpes.org.uk/ Sadly, this site cannot tell you if you have LS or not but your GP can refer you to a dermatologist who runs a dedicated vulva clinic. A list of some clinics can be found at http://www.bssvd.org
Anyone who has problems in this area of the body is ‘unlucky’ but in your case, there may be a lot of help for you and the possibility of getting well, it is all down to finding a good doctor who will make thorough examinations and tests and who is knowledgeable about vulval disease. In any event, you deserve to find the best of treatment so that you can live a normal happy life with your partner. Please come back and share with us, as to how you get on.

]]> Comment on The Basics (main information) by admin http://lichensclerosus.org/the-basics/#comment-5301 admin Mon, 20 Feb 2012 20:45:29 +0000 http://lichensclerosus.org/?page_id=21#comment-5301 Hello Emma. Sorry to hear about your little girl. This is a lot to go through in one so young. I hear a lot of talks by the medical profession on LS in children. It seems that using a hormone cream can sometimes be successful in unsealing the labia and I think the treatment that was mentioned was Ovestin. It is possible that your dermatologist has tried the steroid route first to see if it would work and he/she may offer this treatment as the next thing to do. I am due to be at a medical talk in late May, where one of the UK's experts on childhood LS will be speaking about it but this is going to be too late to be helpful to you. May seems such a long time to wait for another appointment. I wonder if your dermatologist could see your daughter sooner if the current treatment has failed and as her vulva is now almost completely sealed. I wonder if it is worth phoning the dermatologist's secretary to see if the appointment can be brought forward? I am happy to mail you/talk to you one to one, if this would be helpful. Mail me at admin@lichensclerosus.org In any event, please update us if you are able to, and let us know how the appointment goes. Hello Emma. Sorry to hear about your little girl. This is a lot to go through in one so young. I hear a lot of talks by the medical profession on LS in children. It seems that using a hormone cream can sometimes be successful in unsealing the labia and I think the treatment that was mentioned was Ovestin. It is possible that your dermatologist has tried the steroid route first to see if it would work and he/she may offer this treatment as the next thing to do. I am due to be at a medical talk in late May, where one of the UK’s experts on childhood LS will be speaking about it but this is going to be too late to be helpful to you. May seems such a long time to wait for another appointment. I wonder if your dermatologist could see your daughter sooner if the current treatment has failed and as her vulva is now almost completely sealed. I wonder if it is worth phoning the dermatologist’s secretary to see if the appointment can be brought forward? I am happy to mail you/talk to you one to one, if this would be helpful. Mail me at admin@lichensclerosus.org
In any event, please update us if you are able to, and let us know how the appointment goes.

]]> Comment on The Basics (main information) by emma http://lichensclerosus.org/the-basics/#comment-5297 emma Mon, 20 Feb 2012 16:02:26 +0000 http://lichensclerosus.org/?page_id=21#comment-5297 My little girl has been suffering from LS for almost 4 years, she turns 6 in July. Her valva has almost sealed up completely and we have just finished 4 weeks of Dermovate and a week of Trimovate which has had no effect. We are due back to see the dermatologist in May and was wondering if there was anything i should be asking for. My little girl has been suffering from LS for almost 4 years, she turns 6 in July. Her valva has almost sealed up completely and we have just finished 4 weeks of Dermovate and a week of Trimovate which has had no effect. We are due back to see the dermatologist in May and was wondering if there was anything i should be asking for.

]]> Comment on The Basics (main information) by Diana http://lichensclerosus.org/the-basics/#comment-5204 Diana Wed, 15 Feb 2012 22:53:05 +0000 http://lichensclerosus.org/?page_id=21#comment-5204 hi.... well my story is very similar to a lot of yours i'm 41 i started having symptoms of LS 12 years ago and spent 5 years been misdiagnosed with everything from herpes to bad case of thrush (which i do suffer from chronic thrush) and when i had done my own research and suggested i could have LS i was told i was too young to have it as it only effects older women !! luckily one Dr did listen to my sobbing rants that, "yes i was in pain, no i didn't think i had herpes and i couldn't live like this anymore" and quickly sent me to a wonderful gyno that listened and said that he suspected i was right i did have LS and to confirm this i had a vulvar biopsy i then started on a steroid cream which changed my life for the better!! i only use it now if i have a flare up but with the cream its under control within days i saw my gyno every year for four years till he thought it was dormant and i have had three wonderful years of a couple of flare ups and nothing much else .....until today itching back ..splits in skin... white patches and black spots ? but saw a great Dr who said yes LS is back and also diagnosed stress incontinence which is not helping and i feel is making it worse hopefully medication for this will help thanks for a great website i think nhs should prescribe this !!! hi…. well my story is very similar to a lot of yours i’m 41 i started having symptoms of LS 12 years ago and spent 5 years been misdiagnosed with everything from herpes to bad case of thrush (which i do suffer from chronic thrush) and when i had done my own research and suggested i could have LS i was told i was too young to have it as it only effects older women !! luckily one Dr did listen to my sobbing rants that, “yes i was in pain, no i didn’t think i had herpes and i couldn’t live like this anymore” and quickly sent me to a wonderful gyno that listened and said that he suspected i was right i did have LS and to confirm this i had a vulvar biopsy
i then started on a steroid cream which changed my life for the better!! i only use it now if i have a flare up but with the cream its under control within days i saw my gyno every year for four years till he thought it was dormant and i have had three wonderful years of a couple of flare ups and nothing much else …..until today
itching back ..splits in skin… white patches and black spots ? but saw a great Dr who said yes LS is back and also diagnosed stress incontinence which is not helping and i feel is making it worse hopefully medication for this will help
thanks for a great website i think nhs should prescribe this !!!

]]> Comment on Men only by pete http://lichensclerosus.org/men-only-2/#comment-5185 pete Tue, 14 Feb 2012 18:55:46 +0000 http://lichensclerosus.org/?page_id=128#comment-5185 i post below a report done many years ago on l.s. I t says "A new approach to the nonsurgical treatment of phimosis is Jørgenssen and Swenson's 1993 report173 in which clobetasol and gentle retraction were employed daily for up to 3 months and obviated the need for surgery in 70% of their patients. So all I can say guys is this is basically what I have done for nearly 30 years, but I have taken in past the "gentle retraction" bit to full massage with vit e oil and emu oil. and I am fully retractable. So seriously re consider circumcission, the report also states after circumcission it will often return to scarred tissue area. Guess it depends how much you want to keep that little bit of skin??? We each have to consider our own treatment regime, but dont always take your gp`s word on it, do your research. Pete i post below a report done many years ago on l.s. I t says “A new approach to the nonsurgical treatment of phimosis is Jørgenssen and Swenson’s 1993 report173 in which clobetasol and gentle retraction were employed daily for up to 3 months and obviated the need for surgery in 70% of their patients.
So all I can say guys is this is basically what I have done for nearly 30 years, but I have taken in past the “gentle retraction” bit to full massage with vit e oil and emu oil. and I am fully retractable.
So seriously re consider circumcission, the report also states after circumcission it will often return to scarred tissue area.

Guess it depends how much you want to keep that little bit of skin???
We each have to consider our own treatment regime, but dont always take your gp`s word on it, do your research.
Pete

]]> Comment on Italian Stem Cell Treatment by Grama57 http://lichensclerosus.org/italian-stem-cell-treatment/#comment-5126 Grama57 Sun, 12 Feb 2012 03:24:35 +0000 http://lichensclerosus.org/?page_id=198#comment-5126 I agree I have been suffering with this disease since I was 18 and I am now 54. Right now I am in the middle of a major breakout with peeling, burning, itching and everything else. Would love to have some relief from this disease. It would be so nice to live a normal life. I agree I have been suffering with this disease since I was 18 and I am now 54. Right now I am in the middle of a major breakout with peeling, burning, itching and everything else. Would love to have some relief from this disease. It would be so nice to live a normal life.

]]> Comment on The Basics (main information) by Jade http://lichensclerosus.org/the-basics/#comment-5098 Jade Fri, 10 Feb 2012 22:25:29 +0000 http://lichensclerosus.org/?page_id=21#comment-5098 Hi, my name is Jade and I am 20 years old. I have recently been diagnosed with genital herpes which I find it hard to believe as my partner and I have never been intimate with anyone else. Over a month ago, I developed lumps, lesions and blisters ''below" and it was so painful to urinate and move about. Even now I am still am red around my vagina, have awful discharge and itching. At the time of the sores, my clitoris was completely swollen and I had pains in my lower abdomen. I also continually break out in rashes on my arms and lower back, and before this I never had any skin problems. Also, I have trouble with bowel movements usually ending in bleeding when I do go and I can still feel pressure when I urinate. Could I possibly have LS or are we just an unlucky couple? Please help, thank you! Hi, my name is Jade and I am 20 years old. I have recently been diagnosed with genital herpes which I find it hard to believe as my partner and I have never been intimate with anyone else. Over a month ago, I developed lumps, lesions and blisters ”below” and it was so painful to urinate and move about. Even now I am still am red around my vagina, have awful discharge and itching. At the time of the sores, my clitoris was completely swollen and I had pains in my lower abdomen. I also continually break out in rashes on my arms and lower back, and before this I never had any skin problems. Also, I have trouble with bowel movements usually ending in bleeding when I do go and I can still feel pressure when I urinate. Could I possibly have LS or are we just an unlucky couple?

Please help, thank you!

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