Comments for Worldwide Lichen Sclerosus Support http://lichensclerosus.org Wed, 16 May 2012 16:46:41 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on Stem Cell Treatment Italy and USA by admin http://lichensclerosus.org/italian-stem-cell-treatment/#comment-7606 admin Wed, 16 May 2012 16:46:41 +0000 http://lichensclerosus.org/?page_id=198#comment-7606 Lou. There is a good female dermatologist in Victoria who is knowledgeable about LS. Dr Tanja Bohl. Lou. There is a good female dermatologist in Victoria who is knowledgeable about LS. Dr Tanja Bohl.

]]> Comment on Men only by Mark http://lichensclerosus.org/men-only-2/#comment-7578 Mark Tue, 15 May 2012 13:07:56 +0000 http://lichensclerosus.org/?page_id=128#comment-7578 Hi All, I was diagnosed with BXO 3 years ago, I noticed some white patches on my glans and my foreskin was becoming quite tight. I did not have much help from my doctor so went about researching natural cures for it, as I found the cortisone creams were making it worse. I came across terrasil max - this was a saviour for me, I applied it every morning and night and my foreskin started to loosen, and my glans started to look more normal. For a year now I have had no symptoms (touch wood), but I am left with white scarring on foreskin and glans, but everything works better as it should Also - I cut out dairy and gluten, and this helped a lot, BXO could be a reaction to a food intolerance, but you usually feel other symptoms too if you have an intolerance. Does anyone know of any treatment to remove the white scarring? Hi All, I was diagnosed with BXO 3 years ago, I noticed some white patches on my glans and my foreskin was becoming quite tight. I did not have much help from my doctor so went about researching natural cures for it, as I found the cortisone creams were making it worse.

I came across terrasil max – this was a saviour for me, I applied it every morning and night and my foreskin started to loosen, and my glans started to look more normal. For a year now I have had no symptoms (touch wood), but I am left with white scarring on foreskin and glans, but everything works better as it should

Also – I cut out dairy and gluten, and this helped a lot, BXO could be a reaction to a food intolerance, but you usually feel other symptoms too if you have an intolerance.

Does anyone know of any treatment to remove the white scarring?

]]> Comment on Stem Cell Treatment Italy and USA by lou http://lichensclerosus.org/italian-stem-cell-treatment/#comment-7547 lou Mon, 14 May 2012 13:25:23 +0000 http://lichensclerosus.org/?page_id=198#comment-7547 Hi, I am also in Australia, and would love to know of a doctor here who you could recommend seeing regarding LS. My main sysmptons are thinning of the vulva/anal skin area, with regular fissures(splitting, tearing of skin), but it is seldom accoompanied with burning and itching, ( I count myself lucky for that) although sometimes it has occured before. During both of my pregnancies LS symptoms have mostly vanished (which concinves me that this is a hormonal based problem) and after the birth of my second son it all stepped up a level. (bugger!). I treat LS as holisitically as possible, and I have not gone down the road of steriod creams as yet. I have recently descovered a skin balm from New Zealand that has been a miraculous turn around for me personally.. called Antipodes SAVIOUR Skin Balm, all organic and natural ingredients,(google it) it has healed any open tears that Ive had within a day or two, and since I have been using it for the last 3 weeks every morning and night in the areas of the vulva and anal areas that usually tear, I have not had any reoccurance of this problem and it even seems like the scars have become lighter and healing into healther stronger looking skin. I have started having more regular sex with my husband too, who has been at his wits end over it all. It really has been a saviour to me, as I was starting think my marriage wasnt going to make it through with LS causing major problems in our relationship, and this has wore heavily on my soul, as I want so much the my children have both parents around living together and being able to love one another in all ways natural... LS puts so much pressure on my relationship.. I understand why the Italian Dr also works alongside a physcologist, as sometimes that part of this condition makes me suffer as much as the physical side! I hope anyone that reads this and decides to try the Antipodes Saviour Skin Balm has as much success as I have, I realise it is early days yet so I will try and update more as I keep up with it. I also have some dermitilogical problems on 2 of my fingers (different hands), and had a rash type of thing appear on the tops of my hands and the skin balm cleared them up after repeated use, to my great releif. I am also taking supplements for Leaky Gut syndrome, which a homoeopath has said could be a deeper cause of why I have LS.. not sure , but willing to give it a go.. can only be benificial longterm anyway. Thank you to everyone for sharing.. it means a lot, and massive thanks to Doctor Casabona for dedicating his time, knowledge and compassion towards woman with this most unfortunate condition, I hope one day I can have this stem cell treatment to help resolve LS and regain my full womanliness... Hi, I am also in Australia, and would love to know of a doctor here who you could recommend seeing regarding LS.
My main sysmptons are thinning of the vulva/anal skin area, with regular fissures(splitting, tearing of skin), but it is seldom accoompanied with burning and itching, ( I count myself lucky for that) although sometimes it has occured before. During both of my pregnancies LS symptoms have mostly vanished (which concinves me that this is a hormonal based problem) and after the birth of my second son it all stepped up a level. (bugger!). I treat LS as holisitically as possible, and I have not gone down the road of steriod creams as yet. I have recently descovered a skin balm from New Zealand that has been a miraculous turn around for me personally.. called Antipodes SAVIOUR Skin Balm, all organic and natural ingredients,(google it) it has healed any open tears that Ive had within a day or two, and since I have been using it for the last 3 weeks every morning and night in the areas of the vulva and anal areas that usually tear, I have not had any reoccurance of this problem and it even seems like the scars have become lighter and healing into healther stronger looking skin. I have started having more regular sex with my husband too, who has been at his wits end over it all. It really has been a saviour to me, as I was starting think my marriage wasnt going to make it through with LS causing major problems in our relationship, and this has wore heavily on my soul, as I want so much the my children have both parents around living together and being able to love one another in all ways natural… LS puts so much pressure on my relationship.. I understand why the Italian Dr also works alongside a physcologist, as sometimes that part of this condition makes me suffer as much as the physical side! I hope anyone that reads this and decides to try the Antipodes Saviour Skin Balm has as much success as I have, I realise it is early days yet so I will try and update more as I keep up with it. I also have some dermitilogical problems on 2 of my fingers (different hands), and had a rash type of thing appear on the tops of my hands and the skin balm cleared them up after repeated use, to my great releif. I am also taking supplements for Leaky Gut syndrome, which a homoeopath has said could be a deeper cause of why I have LS.. not sure , but willing to give it a go.. can only be benificial longterm anyway. Thank you to everyone for sharing.. it means a lot, and massive thanks to Doctor Casabona for dedicating his time, knowledge and compassion towards woman with this most unfortunate condition, I hope one day I can have this stem cell treatment to help resolve LS and regain my full womanliness…

]]> Comment on How to use this site by pete http://lichensclerosus.org/how-to-use-this-site/#comment-7538 pete Mon, 14 May 2012 07:46:40 +0000 http://lichensclerosus.org/?page_id=252#comment-7538 Hi Denise, sorry to hear your conditions get you down so much. It is hard to live with sometimes. I hope your husband is able to support you through these difficult times. Its not easy, I know but when a few of us went to the first world conference on l.s. in Birmingham we were told of lots of ways to be more imaginative with our difficulties, sexual needs and those of our partners. good luck Pete Hi Denise, sorry to hear your conditions get you down so much. It is hard to live with sometimes. I hope your husband is able to support you through these difficult times. Its not easy, I know but when a few of us went to the first world conference on l.s. in Birmingham we were told of lots of ways to be more imaginative with our difficulties, sexual needs and those of our partners.
good luck
Pete

]]> Comment on Lichen Sclerosus and pregnancy by Robin http://lichensclerosus.org/lichen-sclerosus-and-pregnancy/#comment-7453 Robin Fri, 11 May 2012 02:34:15 +0000 http://lichensclerosus.org/?page_id=383#comment-7453 Hi ladies, I had a very different experience with LS and pregnancy. My LS was discovered during pregnancy even though I had been experiencing perineal tearing during intercourse for years. I was officially diagnosed after my birth (emergency c section after 23 hours labour) and seeing a vulvar specialist. I sometimes feel like it was meant to be that labour didn't progress for me. I was diagnosed with a severe case at 27 just after the birth. Two years later I was preg again and no real improvement in LS despite vaginal surgery to remove perineal scar tissue and open up clitoral area. My OB was very concerned about a vaginal delivery and I was scheduled for a second c section. I hope u can deliver vaginally if that's your goal, I wish I could have. U dont want to bring u down, but I feel it's also important to talk about the other possibility, which is, in some cases vaginal delivery could be far more damaging in the long term. This is a very personal and individual decision. Good luck to you :) Hi ladies,

I had a very different experience with LS and pregnancy. My LS was discovered during pregnancy even though I had been experiencing perineal tearing during intercourse for years. I was officially diagnosed after my birth (emergency c section after 23 hours labour) and seeing a vulvar specialist. I sometimes feel like it was meant to be that labour didn’t progress for me. I was diagnosed with a severe case at 27 just after the birth. Two years later I was preg again and no real improvement in LS despite vaginal surgery to remove perineal scar tissue and open up clitoral area. My OB was very concerned about a vaginal delivery and I was scheduled for a second c section. I hope u can deliver vaginally if that’s your goal, I wish I could have. U dont want to bring u down, but I feel it’s also important to talk about the other possibility, which is, in some cases vaginal delivery could be far more damaging in the long term. This is a very personal and individual decision. Good luck to you :)

]]> Comment on Men only by John http://lichensclerosus.org/men-only-2/#comment-7437 John Thu, 10 May 2012 21:53:23 +0000 http://lichensclerosus.org/?page_id=128#comment-7437 My doctor recommended I have a circumcision as I'm relatively young (25) and the problem will only develop. The steroid cream seemed to help a little but the phimosis just got tight as soon as the course ran out. Not 100% on this one! It's OK at the moment, if it gets any worse I could consider it, but for the time being I'm coping. Has anyone else here had a circumcision in their 20's? John My doctor recommended I have a circumcision as I’m relatively young (25) and the problem will only develop. The steroid cream seemed to help a little but the phimosis just got tight as soon as the course ran out.

Not 100% on this one! It’s OK at the moment, if it gets any worse I could consider it, but for the time being I’m coping.

Has anyone else here had a circumcision in their 20′s?

John

]]> Comment on Finding Doctors by alfreda http://lichensclerosus.org/finding-doctors/#comment-7416 alfreda Thu, 10 May 2012 11:04:39 +0000 http://lichensclerosus.org/?page_id=13#comment-7416 Hello , I am new to this site and i hope I can find help as well as assist others. I recently went private, to see a dermatologist although I could not afford it I was desperate. I had no idea what I was suffering from in spite of seeing different doctors and nurses at the surgery, who told me that 'many women suffer in this way,' so join the club , seemed to be the answer. I have had irritation and itching in the clitoral area for over five years. I have used numerous over the counter treatments which has probably aggravated the condition. I have been prescribed Dermovate and it has helped but I am now decreasing, as intructed, the application of Dermovate and it has started to irritate again. After reading the article on how much to apply I think that I may not have been using enough. I am seeing the dermatologist next month and hope and pray that I get better. Lastly, am I wrong in feeling quite angry that I and obviously many others have got worse because of ignorance of the condition? Hello ,
I am new to this site and i hope I can find help as well as assist others.
I recently went private, to see a dermatologist although I could not afford it I was desperate.
I had no idea what I was suffering from in spite of seeing different doctors and nurses at the surgery, who told me that ‘many women suffer in this way,’ so join the club , seemed to be the answer.
I have had irritation and itching in the clitoral area for over five years. I have used numerous over the counter treatments which has probably aggravated the condition. I have been prescribed Dermovate and it has helped but I am now decreasing, as intructed, the application of Dermovate and it has started to irritate again. After reading the article on how much to apply I think that I may not have been using enough. I am seeing the dermatologist next month and hope and pray that I get better.
Lastly, am I wrong in feeling quite angry that I and obviously many others have got worse because of ignorance of the condition?

]]> Comment on Men only by pete http://lichensclerosus.org/men-only-2/#comment-7399 pete Wed, 09 May 2012 08:18:51 +0000 http://lichensclerosus.org/?page_id=128#comment-7399 If you are in uk? and have the funds, maybe consult the stem cell treatment options available in Italy. Check the Italian forums, maybe younger lads might know? If you are in uk? and have the funds, maybe consult the stem cell treatment options available in Italy. Check the Italian forums, maybe younger lads might know?

]]> Comment on Men only by pete http://lichensclerosus.org/men-only-2/#comment-7398 pete Wed, 09 May 2012 08:16:58 +0000 http://lichensclerosus.org/?page_id=128#comment-7398 Hi I think you maybe have to go with what the specialists advise here unless anyone else has experienced this. All I can say is though I have had l.s. for nearly 30 years and have managed to keep on top of it, by pulling the foreskin back and forth, massaging the region using oils, this would be somewhat more difficult for your young son. The implications for doing this are unthinkable. In older males I personally would advise not having a circumcission, but in a youngster I have no experience, nor have I read about long term effects on the penis / removed foreskin with regard to ls returning there. Keep investigating on the web, see what turns up. Pete Hi I think you maybe have to go with what the specialists advise here unless anyone else has experienced this. All I can say is though I have had l.s. for nearly 30 years and have managed to keep on top of it, by pulling the foreskin back and forth, massaging the region using oils, this would be somewhat more difficult for your young son. The implications for doing this are unthinkable. In older males I personally would advise not having a circumcission, but in a youngster I have no experience, nor have I read about long term effects on the penis / removed foreskin with regard to ls returning there.
Keep investigating on the web, see what turns up.
Pete

]]> Comment on Men only by Josh http://lichensclerosus.org/men-only-2/#comment-7353 Josh Mon, 07 May 2012 09:36:24 +0000 http://lichensclerosus.org/?page_id=128#comment-7353 Thanks for posting that Nick. My derm has given me some Clobestasol incase the Elacon he gave caused a reaction so I guess I'll give it a shot Thanks for posting that Nick. My derm has given me some Clobestasol incase the Elacon he gave caused a reaction so I guess I’ll give it a shot

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