Time to do something about MD ignorance

Posted , 12 users are following.

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?

5 likes, 38 replies

38 Replies

  • Posted

    You may have something there. I agree the word needs to be spread, thinking caps on everyone 😳
  • Posted

    I agree! Most people haven't heard of it, and think you making the whole thing upexclaim
  • Posted

    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.
  • Posted

    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

  • Posted

    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.
    • Posted

      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!!
  • Posted

    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?

    • Posted

      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.
  • Posted

    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.


    • Posted

      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.


    • Posted

      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.

    • Posted

      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?

    • Posted

      I forget which one, but she said in reply that the doctor wasn't really judging her, just pointing out a strange new phenomenon among young women. I had discovered this when looking up surgery last year. Elective surgery to change how women's vulva appear. Probably goes hand-in-hand with everyone shaving these days. God what a nightmare – the one time I caved after years of badgering by my husband in my twenties. What a horrible place to have stubble and ingrown hairs.
  • Posted

    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.
    • Posted

      I'm sorry that you learnt about the female anatomy in that way. That was abuse. The porn industry has a lot to answer for. As we used to say 'Women pay the price for porn'.

      You raise a vital issue here Morrell. The abuse of the rock era is all becoming known. In the 70's I had the good fortune to attend one of the early International Women's Conferences celebrating feminism. Among all of the fabulous events was a self exam workshop. Some of the women in the group allowed other women to view their cervix's via speculum...it was brilliant and so generous of those women to share knowledge of their bodies in that way.

      In the same spirit when giving birth I had half a dozen women attend on me so they could experience the process in advance and see for themselves what to expect in the future. It was so lovely to be told it was the most moving experience of their lives.

      This is surely how things were meant to be ....ancient cultures always shared womens mysteries and young women participated for just this reason ...not only to help but also to gain insight for themselves. xx 

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