Why are there so many women on this forum who've never heard of LS, who were diagnosed after having it many years and now the damage is done?
I watched a silly movie recently about the early days of Viagra. The pharmaceutical reps were hounding the doctors with all sorts of uses for it besides its main use. Where are all the drug reps who could be handing out flyers to doctors with pictures of what LS looks like?
What do we need to do to raise the profile?
You may have something there. I agree the word needs to be spread, thinking caps on everyone 😳
I agree! Most people haven't heard of it, and think you making the whole thing up
Would be a good idea to have posters in doctors waiting rooms like they have for breast cancer or articles in ladies magazines so it would bring to peoples notice there is a problem for lots of people and they are not alone with this like I did for 12 years.
The Pharmaceutical industry follows the money, they will do R&D for a condition that has volume sales, While our numbers seem to be increasing because of medics better awareness(?) still not a huge profit to be made. So no mileage from sponsored leaflets...
Would the Health Lottery Fund be interested in awarding research money for the condition?
There have been topics raised in the past by programmes like Woman's Hour in the UK but that was several years ago. Perhaps script writers for daily "Soaps" could be bombarded with information/case histories
I do tell friends to tell their daughters and their friends to get a mirror and LOOK at their normal for them, anatomy, and not put up with a "Thrush" diagnosis
I also tell people about this website
I agree with Sue i think soaps would be a good way to spread the word. Unfortunatley in this day and age more women would find it "gospel " if it was mentioned in a soap as opposed to a doctors surgery. Sad but true.
I'm in my seventies and never heard my mother talk about any personal health matters. It was all she could do in these days to explain periods to my sisters and me.
My own generation has been more open, but I think part of the "LS awareness" problem is we still don't talk openly about it outside forums. Or is it just me?
I think part of the problem is ourselves - we need to open up more.
Re the medical profession - didn't we in the UK have this aim of putting our health details onto the national health computer? Did they drop that brilliant idea? First thing I thought when I heard that was - what a good way to find out just how prevalent this LS is. Then maybe it will get the attention it deserves.
Also it could throw up info about other possibly rare diseases.
Our local radios might be happy to do interviews with a couple of sufferers and a medic perhaps?
I am not a Twitterer, but it would appear that the young do send messages via social media and it "goes viral"- is any one out there familiar with the ways the young communicate- Facebook Myspace- and the most recent method (what is it called?)- because the young now think Facebook is for their parents...- but perhaps not quite their grandparents!!
Joodie, it's true that our own silence is half the problem. Even now I'm loathe to talk about it because women friends will see my relationship without sex as a sort of failure, or a fake. This is my emotions talking – half of them probably never make love anyway, as is often the case in long marriages. I once used the phrase 'bad sex' to a female co-worker and she looked at me as if I'd used the craziest oxymoron. It's not unlike erectile dysfunction. I'm pretty sure men don't tell their buddies. But how come it's all we hear about on the internet? Money, that's why.
I see Lichen Sclerosus dot org has been raising awareness for twenty years. So, this may be where we point people to donate.
• To make an awareness amongst family doctors and the general public.
• To ensure sufficient awareness and education to facilitate a good outcome for the very young children who are being diagnosed now and who will have to grow up with LS. To make a future for them.
• To encourage medical professionals to research the truth, whether or not using potent topical steroids does delay or prevent progression to vulva cancer. There is some anecdotal evidence to support the theory that using steroids may be a factor in avoiding vulva cancer.
• Educate patients and doctors on the truth about steroids. Encourage good education and abolish the across the board statement that ‘steroids thin the skin’.
• Raise the profile for lichen sclerosus in men and male children.
And female anatomy is always shown to girls as a diagram in cross-section. I didn't know what normal vulva looked like till in my twenties I was dragged to a rock'n'roll concert that had funky strippers as the opening act. Even then I was vaguely aware that mine had hardly any 3D features. My first internal was by a young female doctor who remarked on how 'clean' I was. There was the first missed diagnosis, 1972.
Thank you Morrell. So we can contribute to lichen Sclerosus dot org at least. One small positive step.
I wouldn't do a radio talk in my own area as my accent is not local but would be willing to do it elsewhere.
We could write magazine articles but I think they would want proper medical input from the people who know less than we do. Hmm.
Honestly, I have my own block against talking it up, so I don't know if this is realistic. I don't really expect any research breakthough, but it's ridiculous that doctors can't recognize something so visually obvious.
One woman on another thread had a doctor chide her about minding having atrophied labia while women regularly ask her for cosmetic labia reduction surgery. Boy, would I like to give that doctor a piece of my mind. Incredible.
I was one of those who compained to my doctor about a problem in this area and two years later it was diagnosed as LS with scaring damage already evident. I had never heard of LS and I was 59 at the time.
I feel I had LS even before I began experiencing symptoms which I felt I should bring to the attention of my GP. I think we ladies usually put up with problems in this area due to the embarrassment/discomfort associated with the examination. Maybe we could talk to our GPs or specialists to find out the best way to go about making doctors and medical students more familiar with the LS presentation of LS and just how common it really is. I am sure there are many health professionals out there who are not familiar with LS.
I think social media, brochures and posters are a good start in informing other women about about LS.
I'm seeing my bright young gynae next month. I will be giving her a picture of what I've learned here about MD ignorance. She has opportunities to talk it up with colleagues and especially GPs and emergency docs.
You are absolutely right, more people should know about LS. How many people are out there suffering in silence through embarassment and lack of knowledge.
I have been thinking for a while about writing to my daily paper - the Daily Mail - and asking them to put something in their health section about it and now I intend to do just that.
I don't know if they will do anything about it but we can only try.
Well done Morrell, in bringing up this need to publicise LS.
I will do the same when I get a specialist appointment I don't think health professionals realise how widespread this problem is and how it affects women's day to day lives and self confidence.
what the hell was that about? How dare the ignoramous judge one of our number ...he has been PAID and 'educated' ahem terrible cough i've got... to take care of patients.
i regularly had to intervene to defend women from rugby tackles in both pre and post natal outpatients....and they want more pay. WE ARE NOT SATISFIED.
May I check out the thread you mention? Is it recent on here?
good plan! x
brill