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Possible LS

Posted , 8 users are following.

g30rg313
g30rg313

I have been suffering almost constantly for the past two years with problems down below.  Itchiness, soreness, difficulties having intercourse.  Bleeding after intercourse.  I checked myself in a mirror yesterday and noticed angry red blotches and lots of white areas.  Also I noticed that a part that was there before was just not there anymore! I am 42 and have not gone through menopause yet.  I have recently been diagnosed with another auto immune disease, hypothyroidism.  Can anyone give me any advice, does it sound like I might have LS.  I've tried antibiotics, canesten cream, emollient washes, emu oil, olive oil, sudacreme, nothing seems to help! 

0 likes, 29 replies

29 Replies

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  • hanny32508
    hanny32508 g30rg313

    Posted

    Not so rare a disease as I was originally told.  ("LS is a rare skin disease")  Your doctor, Morrell, has about 1000 LS patients.  Dr. Goldstein had 1200 patients with LS.  Would all of us ask our doctors how many LS patients they have, I wonder what the outcome would be.

    By the way, my doctor did not volunteer to give me this kind of info, and why would he. Is a doctor actually allowed to give out this info?   A while back I was preparing myself to lead a support group locally.  But I was not given much hope  that I would succeed.  And thus I did not find any local LS patients.  There is no way of knowing who they are.  Or is there? Any suggestions anyone?

    • marieC
      marieC hanny32508

      Posted

      Hi Hanny, I suppose not many women would willingly admit to strangers that the had this disease, due to embarrassment, etc.  I think that we on here are the tip of the iceberg.  I think more publicity and knowledge of the condition within the medical profession and among women especially, but also men, as they can suffer with it too, is needed, but I have no idea how we go about this.
    • Morrell1951
      Morrell1951 hanny32508

      Posted

      I actually offered to coordinate a support group, but somehow I'm not sitting by the phone...
  • hanny32508
    hanny32508 g30rg313

    Posted

    Hi G,

    It would be great if LS could be mentioned in a women's magazine.  It's in a way a kind of 'neutral ground'.  Which magazine would be willing to publish, do you think? 

    • g30rg313
      g30rg313 hanny32508

      Posted

      Hey hanny smile I'm not sure which magazine would publish it, but I have contacted a company called featureworld with my story.  They are calling me tomorrow morning to discuss publishing it.  I told them my main concern is to raise awareness of this horrible condition.  Any help or advice about what points to get across would be appreciated.  Thanks
    • suzanne00
      suzanne00 g30rg313

      Posted

      So pleased to hear this g30--hope that meeting goes well.  And also thanks to Hanny and her helpful comments!  
  • hanny32508
    hanny32508 g30rg313

    Posted

    Hi G.

    It would be fantastic if you could draw attention to LS with the help of an article in a monthy women's magazine.

    Some of the things that come to my mind: To discribe the debilitating aspect; the fact that little can be done to make this illness more or less liveable;  next to the fact that too many doctors know little about it.  That too little research is being done.  That it will be important for patients with LS to at least receive regular check-ups.  That with neglect there is the possibility of cancer. 

    My abreviated rantings.

    Hope this will be helpful.

  • hanny32508
    hanny32508 g30rg313

    Posted

    Forgot to mention, G.

    That in today's oversexualized society it is surely not easy to talk about LS. 

  • marey
    marey g30rg313

    Posted

    This is great g....Good luck with the interview...great comments hanny!
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