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Time to do something about MD ignorance

Posted , 12 users are following.

Morrell1951
Morrell1951

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

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  • gaye19269
    gaye19269 Morrell1951

    Posted

    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.

     

    • Morrell1951
      Morrell1951 gaye19269

      Posted

      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.
    • nannylin
      nannylin Morrell1951

      Posted

      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.
  • patricia38248
    patricia38248 Morrell1951

    Posted

    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.

    • marey
      marey patricia38248

      Posted

      so will i, thanks patricia; and morrell for the consciousness raising x
  • hanny32508
    hanny32508 Morrell1951

    Posted

    At the very beginning of my diagnosis by autopsy and miserable treatment via a gyno, I was determined to tell the world about LS and how the medical world doesn't seem to be able to guide a patient.  Accidently I received from a friend doctor some very helpful info, put it on a CD and gave copies to my family doctor as well as to my nature path.  They were both thankful at the time, but never heard anything further about it.  I have avoided the gyno. 

    One needs courage to 'go against the stream', I find, and I don't always have that available.  It also gives a certain amount of stress, explaining to people why you can't sit so easily. Indeed Morrell, I also fear the possible judgement of no longer  being able to 'perform' sexually.

      My LS's fusing is very far advanced due to poor guidance from the time of diagnosis.  Some days I feel so imprisoned, not even able to pee with any form of ease.  This year I'll turn 64 and have probably been suffering this disabling disease for many years. Overlooked indeed. 

    • nannylin
      nannylin hanny32508

      Posted

      How many times have I said I had a bad back when I found it hard to walk or sit properly - why, why can't I just be honest especially with female friends and explain the real reason. I have nothing to be ashamed of I haven't done anything to cause this but I can't face all the questions especially the ones about sex. I feel a failure even the doctor at my sexual health clinic was surprised that the lack of sex didn't bother me- would she like to have sex and feel like she was being attacked by barbed wire with itching powder on ! We are the victims of this condition and need support. 
    • suedm
      suedm nannylin

      Posted

      Sex is a private matter, whether you do or don't is no a matter for discussion or judgement! Friends who talk about sex ....! I am in a lovong relationship and no one else knows whether I Do or Don't! It is of no concern of theirs. Any more than I need to have a peep into my friends bedrooms....!

      As to letting people know why you are uncomfortable - if your bones creaked or your lips went blue  or you were breathless people may know the cause- if they understood certain conditions - and they wouldn't judge you - so why would they judge you for being unable to sit without wriggling or walking awkwardly...etc if they understood the cause?

      I got over the embarrsassment by saying The Itch on the Undercarriage is playing up..the euphemisms did help everyone

    • Morrell1951
      Morrell1951 suedm

      Posted

      Sue, that's a good distinction. I've been avoiding talking about it because I'm such a blabbermouth I assume I'll have to tell all, including our no-sex life. But I bet there are lots of couples who have intercourse on some sort of regular basis. Doesn't mean everything's wonderful. I look forward to beditime because I am 100% assured to be held closely for a long while and to get lots of kisses from a freshly-shaven face. No way could I explain to my friends how much better that is than all the years I've cringed in bed hoping to get away without it tonight, the tearing, the stirred-up yeast. So, as you say, they don't need to know that part.
    • suedm
      suedm Morrell1951

      Posted

      I envy your bedtime routine...sigh..I remember with a shudder my ham fisted (now ex )husband's approaches and I would lie on my tummy pretending to be asleep!

      My loving relationship is infrequent and too short - being 200 miles away from each other - but it is wonderful when it happens.

      If the subject arises curious friends  ASSUME I am celibate because of the description I gave initially of the progress of the condition - And because I am single and live alone with no obvious signifcant other. I don't elaborate!

      As an aside I have a group of 4-5 married couples with whom I socialise- I dont make a play for their menfolk so the women accept me - and make assumptions -so I am 'safe'; the men forget I am single and I get the impression that most do not have the response to their libido from their wives that ideally they would like - and the women say thank heavens i am too old to bother with all that mess! I smile and say nothing 'cept to chide them and remind them of my 'single' status so that my blushes are spared if these topics ever  come up !

    • Morrell1951
      Morrell1951 suedm

      Posted

      Sorry, Sue, I missed this. I think a few of my notifications get filtered out. Before I met my current partner I went through a few men. Four never would have been OK with celibacy, one was pretty much impotent.

      I just got a set of responses to a posting about this on the LS Facebook I joined. Maybe they're young, but I bristled at the number who talked about servicing their mates regularly. Granted, one admitted she's still horny, so she empathises. I have zero libido, so I just don't want to think about it.

  • ChrissyC
    ChrissyC Morrell1951

    Posted

    Sorry I MUST just speak here. It was me who had the doctor speak about minding my atrophied labia. It was a Consultant or specialist in England and not just a GP or family doctor. And it was a she. And she really really didn't chide me. She was chatting a bit helplessly as she mopped up my tears and happened to say how ironic her day's work was when she was one minute disuading young women from the current fad of having un-necessary labia reduction surgery and the next minute consoling such as me for the loss of mine. Since I have been seeing her she has been nothing but kind, supportive, informative and helpful with a strong desire to see this condition become the focus of research which she admits is just not happening. A vibrant Yorkshire lass in the 30-40 age range she admitted to me that because of what she knows and sees in her job she checks her own vulva at least once a week. And this subject came up as I chatted on another discussion and so I mentioned what she'd said. It doesn't really matter but I strongly felt I had to defend her as she has been an excellent consultant to me.
    • marey
      marey ChrissyC

      Posted

      PHEW.....!  Thanks for clearing that up. Chrisy...me and Morrell getting right heated up!!
    • suedm
      suedm ChrissyC

      Posted

      Well done Chrissy for defending your medic- I seel that we are too condemming at times. They are normall time pressured and exhausted, treating patients and keeping up with research is not an easy option, AND dealing with the Essex Girl phenomon wanting a labia reduction - WHAT ARE THEY THINKING ABOUT???? i suppose it goes with the tattoo mentality!
    • Holiday_girl
      Holiday_girl suedm

      Posted

      I'm an Essex Girl and wouldn't dream of having anything like that done like all the Essex Girls I know we seem to have got a bad name from somewhere like were stupid all to do with the programme which is filmed about 10 mins from where I live. As for tattoos I don't like them myself but youngsters that have them all over can you imagine what they will look like when old and wrinkly maybe in a nursing home will look awful .
    • Morrell1951
      Morrell1951 ChrissyC

      Posted

      Point taken, Chrissy. Pet peeve on my part as I was already atrophied in my twenties and my then husband thought my (small) vulva photogenic in close-up, a particular emotional low point for me. I jumped on it as it struck a nerve.

      I'm impressed you have such a great doctor. Mine's good, too. I try to help the other patients see she seems bossy, but it's because she cares. She said something to me that compared looking after me with looking after her mother.

    • ChrissyC
      ChrissyC Morrell1951

      Posted

      That's absolutely fine Morrell as I said on the other discussion. I do understand this is so emotional for all of us but I did want people to know so I hope you don't mind.
    • suedm
      suedm Holiday_girl

      Posted

      Sorry - Holiday Girl  was thinking of the rather interesting Essex Girls on the TV reality show - not individuals per se, I cant understand why tattoos aren't done with fading inks.

      As an aside a friend spent a fortune on her kitchen and bathroom tiles -They looked great however 5 or so years on she was bored with them ...  And you can go into other rooms, but with your body tattoed....sigh

      The reversal is desperately painful, first degree burns with lasers are used to burn out old unwated tattoos

      The Spice Girls have a lot to answer for - as has David Beckham!

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