1. Community
  2. Women's health
  3. Lichen Sclerosus

What comes next?

Posted , 7 users are following.

hanny32508
hanny32508

After another flare-up the opening to pass urine has shrunk to no more than a pin-hole.  Needless to say, bathroom visits have become difficult.  Are there others who have come to this stage with LS?  And what are the possibilities to improve the situation?  

0 likes, 8 replies

8 Replies

  • hanny32508
    hanny32508

    Posted

    Possibilities should read: or options.  
  • Morrell1951
    Morrell1951 hanny32508

    Posted

    Hanny, that's really bad. Have you discussed surgery with your gynaecologist? I'm more optimistic about this since hearing Dr. Goldstein say the clobetasol ointment would prevent surgically opened scarring re-scarring.
  • ChrissieM
    ChrissieM hanny32508

    Posted

    I think I may be on the way there - even though I'm supposed to have 'very mild' LS the fusing has definitely speeded up. Tendency to get cystitis because of the difficulty of emptying the bladder - I have to lean right forward to make sure it has emptied.
    • hanny32508
      hanny32508 ChrissieM

      Posted

      Same here, Chrissie.  I will discuss in a couple of days with a doctor, to see where I'll go from here.  But in case there are people here who have had surgeries done, I would appreciate hearing from you and your experiences with it.
  • sheila49099
    sheila49099 hanny32508

    Posted

    hanny, this is unsettling news,  I have not become aware of that with me but I have

    wondered if the rectum will close up due to the itching.

    I have also been aware that there is much concern with LS and thyroid problems.

    I had my thyroid out a few months ago.  How come there is no help for us?

    It seems to be a hush hush subject.

    • Morrell1951
      Morrell1951 sheila49099

      Posted

      Sheila, I've read a lot about LS and looked at all the photos. I don't think the rectum closes, as it's a well-exercised muscle. The trouble with women's urethral meatus is that the labia can close over it like a curtain.

      LS is a difficult auto-immune disease (probably – it still might turn out to be bacterial and/or genetic). There's no funding because major life-threatening auto-immune disorders – MS, Diabetes Type 1, Graves Disease – are first in line for funding.

      Women need to speak up. We're all too good at grinning and bearing it. We tend to worry more about hanging onto men than helping each other. I'm the worst in that group – put up with painful sex for forty years, didn't ask the doctor why my clitoris was covered over, etc.

    • hanny32508
      hanny32508 sheila49099

      Posted

      We grinn and bare too much, perhaps.  I also think it's because it affects our woman-hood. (like man-hood)  We're 'no good' anymore.  I've noticed how careful I have become, not expressing.  

      Thanks for all the support on this forum.  Felt good.

    • hanny32508
      hanny32508

      Posted

      bare of course should be bearing
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.