Why is there so little known about LS

Hallo You did not leave a name so I cannot address you personally. Yes I agree that the medical profession do not seem to be educated where LS is concerned. After two years and 3 consultant gynecologists my consultant dermatologist explained that the gynecologists simply do not recognize LS and therefore misdiagnose as thrush etc. I had to have my medical records sent to a professor in America who advised that I be checked for LS. From the postings I am of the opinion that the women are no longer accepting the diagnosis of thrush and the menopause and insisting that the medics do more research. So it seems that we have to educate ourselves and keep one another informed as how to manage this disease. I think the fact that it affects our \"private\" parts inhibits us women from speaking more openly about this disease coupled with the fact that there is no known cure. Perhaps the younger generation will sit up and realize that this disease has to be brought out in the open if we are to be taken seriously when we present with pain and itch etc. I do not know if this disease has been covered in the series \"embarrassing bodies\". We as women are all in SHOCK at the lack of interest by the medical profession. I think the women on this forum should stick together and post regularly giving advice to those recently diagnosed with LS.

Thank you for your reply. I am 29 years old and have just recently been diagnosed - the steroid cream does not seem to be working anymore and the consultant I saw has said to stop using it for a week to see if it settles.

Once I am on the mend I think I will start writing to magazines/papers to see if they will write an article on Lichen Sclerosus. I know it can be embarrassing to talk about our private parts but really think talking about it helps.

Mine started off at the end of October when I was pregnant and ended up having a miscarriage at 10 weeks. I had 9 internal scans which made things 10 times worse and ended up with lots of tares. I did not know what I had then.

At the moment I am very down and am in constant pain and having difficulty walking due to the burning pain and soreness. This website is helping me come to terms with what I have and making me feel like I am not the only one who has this awful disease.

Poppy x

Hallo Mickey1

We are all shocked when first diagnosed but once you start to daily maintain your vulva things will improve physically and mentally. Wash only with aqueous cream (soap free). Then use your steroid cream. Then use a barrier cream Paladin you can order it of **** its great to relieve soreness.

LS can be related to many things :Hormonal imbalance - Emotional stress etc Chin up

[color=green:b90baeedbe][size=9:b90baeedbe][b:b90baeedbe][i:b90baeedbe](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:b90baeedbe][/b:b90baeedbe][/size:b90baeedbe][/color:b90baeedbe]

Hi Mickey 1. Sorry just searched **** (on your recommendation mayocovie) and found that there is no site of that name...it is ****. Sorry just thought i would say incase you couldnt find it . Also embarrassing bodies did do it and someone has said they saw it and the lady they used was far gone with LS and it was frightening.I think that is bad for the newbies as they would be able to manage their LS easier and not get to that stage....They should have taken it from the start and shown different stages at least....

Also Thanks for advice, mayocovie and I agree with your points...

[color=blue:6f6a6f5dc2][size=9:6f6a6f5dc2][b:6f6a6f5dc2][i:6f6a6f5dc2](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:6f6a6f5dc2][/b:6f6a6f5dc2][/size:6f6a6f5dc2][/color:6f6a6f5dc2]

Here at Patient UK, we have several articles --> https://patient.info/DisplayConcepts.asp?WordId=Lichen+Sclerosis&x=18&y=17&MaxResults=50

These Patient Information leaflets are also available to a vast majority of doctors for use in their consultations with their patients.

Regards

Lin

Hallo Guest. Unfortunately you did not leave your name. Thanks for pointing out the spelling error in **** I did not know that LS was covered in \"embarrassing bodies\". I agree strongly with you that it would benefit women greatly if LS was shown at the initial stage and followed up at the different stages as it progressed. Women might then be given an opportunity to recognize that their conditions have been or are being misdiagnosed and perhaps seek a second opinion. With this condition time is precious.

[color=orange:98e9a1e7b2][size=9:98e9a1e7b2][b:98e9a1e7b2][i:98e9a1e7b2](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:98e9a1e7b2][/b:98e9a1e7b2][/size:98e9a1e7b2][/color:98e9a1e7b2]

HALLO LIN.

Re: Patient Information Leaflets

Would you be able to inform me as to how I could get a copy of these leaflets. I live in Ireland and have NEVER seen any Information Leaflets on this subject.

All you need to do is click the link that Lin provided. This will take you to the search results for lichen sclerosus on Patient UK (the sister site for this experience forum). You can then print information off from Patient UK if you would prefer to read it at leisure.

Patient UK Content Manager

Patient UK content manager.

Thank you for your reply. Would you be in a position to explain why the LP forum is no longer being used by people suffering with LP. Does another forum exist perhaps. Would really appreciate an answer to this question.