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?
Possibilities should read: or options.
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.
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.
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.
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.
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.
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.
bare of course should be bearing