Autoimmune Lichen sclerosus

Women's health
1

I thought I'd take a look at the patient.info front page to the LS discussions since I hadn't read it since last december 2017.  At the time, they referred to the cause of LS as a "mystery" but thought it might have something to do with autoimmunity and hormones.  

I see today August 21, 2018, that at some point the doctors involved with Patient.info have totally overhauled the page making it much more "user friendly" including a cute story by a journalist who tells of a woman who was cheerfully and easily aided by early detection and dermovate.  Since there are no quotation marks I'm interpreting this as a made-up conversation for making the medical professionals diagnoses on here "palatable" to us idiots (warning that was cynicism). 

Then down below that paragraph, there are comments from Dr. Emma Edmonds who went on to say that she does NOT think that LS is autoimmune. I looked her up online and find that she is a really brilliant dermatologist MD with her practice in the UK. I then dug further on her site to get to her biography. Yep, brilliant.. BUT... her work on thesis about LS was done in 1999. and something updated in 2005 I think.  

SO; We can have brilliant doctors doing brilliant work and they still can barely keep up with the amount of research in whatever subject every single day.

I very politely sent her a message through her contact form with the link to the article i had found from the Journal of Investigative Dermatology:  J Invest Dermatol. 2012 Mar;132(3 Pt 1):658-66. doi: 10.1038/jid.2011.369. Epub 2011 Nov 24. 

asking her to consider this article and let us know or let the patient.info Docs know what she decides after seeing this 2012 journal article.. 

See how the front page is currently.....

https://patient.info/health/vulval-problems-leaflet/features/itchy-vagina-lichen-sclerosus

2

I get a picture of an apple saying “sorry , an error has occurred”- I guess they don’t want us  reading it! 🙄🙄

3

Hi Karen and all....

I did find the article here - I think there was  an extra digit at the end of the original link.

https://patient.info/health/vulval-problems-leaflet/features/itchy-vagina-lichen-sclerosus

I identified with almost everything that was written in there, which for me at least was very encouraging. I have relied on Dermovate through the years with LS. My history ls is that I developed terrible sores, ulcers, itching and white bits about 15 years ago in my mid fifties, menopause time.  It was undiagnosed for a while, doctor treating for thrush, until she finally thought it might be LS and sent me to vulva clinic.  Two doctors - one a gynae and the other a dermatologist - examined me with huge sympathy for the itching, pain and soreness and because I could barely walk. They put me on Dermovate, I think it was twice a day for a few days and then once a day for several weeks, reducing then to twice a week - I cant remember now the exact times. Also no soap or anything with perfume, anywhere near the area, I have been using aquaeous cream, which for me seems to have worked, and I still use. I also occasionally use coconut oil, and have tried various other unguents mentioned on the website. I have also continued to use a small amount of oestrogen gel, which I am now beginning to wonder might have also been a help to keeping flares away.

So.. miraculously the terrible flare, the ulcers, soreness etc. did disappear with Dermovate.  But during all that time, I was so relieved to have got rid of the flare, the pain and discomfort, I had'nt noticed that my architecture had changed - and actually continued to change, till I seem to have lost my clitorus under the hood, and the labia minora is also disappearing.  I have not been able to face actually looking at it myself, but they have photoed it at the clinic, and kept record in order to be able to  compare in due course.  The advice was that I should continue with Dermovate twice a week, and I've had no flares, apart from slight cuts and soreness from time to time, I assume because of Dermovate. But the structural architecture still silently seems to be taking its own path - which is depressing. So I somehow ignore it - made easier as I am not in a relationship, as my partner has very sadly died. I'm not sure what I would be able to do if by some remote chance I was to find another relationship.

Sorry.... this has been a long post - and I have'nt been on the site for a very long time.  But having read the highlighted article, I felt my experince might be useful..... But the fact that my structure still seems to be changing, is disturbing.

4

Hi Nancy, yep I'm getting the same apple.  

I recently sent a note to the moderator asking why the recent thread on mercury fillings had been removed and they didn't get back to me..its all a bit depressing really.

Anyway, It will be interesting to see if you hear back from Dr. Edmonds and whether her views have changed.

5

Ahhh jsut found the problem - somehow and extra ambersand got in the url.. her is is without the mess up.. 

https://patient.info/health/vulval-problems-leaflet/features/itchy-vagina-lichen-sclerosus

6

Hi Nancy- loving your style-and looking forward to reading the response..

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yes, I found it too....

8

Awww - thanks Joe.. I appreciate that, really. haha I've always seemed to write or speak with boring nerd like info so I really am working on the "light touch". 

9

I got in! Some of the research is def. old school and I hope she updates it soon, if people see this first without checking the publication date, they are going to be misinformed!