LS closing anus
Posted , 10 users are following.
well, this is something I never thought about, never mind have. I have posted on this forum before, but this is something new. My ob/gyn told me two years ago that LS only affects the vaginal tissue. Well, I never used the clobetasol farther back, and only discovered that my anus is almost closed! This happened so rapidly. I have looked on line at many, many sites, but when discussing anal LS, there are only one or two lines, saying it may cause constipation. All say surgery isn't recommended because the skin will just grow back. So, what am I supposed to do? I only have an opening the size of a pencil now. So odd. I am upset that my dr. didn't know about LS affecting the anus, and only read about that here, which is why I looked at my own bottom the other day. Is it too late to use the clobetasol now? I am pretty upset and worried and scared. Does anyone know anything about this, or even experienced it? Thanks for any replies....
2 likes, 31 replies
hanny32508 patricia86334
Posted
I have had a special procedure done to open the opening still left to urinate. It is called dilation and happened under full narcose. I'm still recovering from this procedure which happened only a short week ago. My thought is that perhaps such a procedure can be done with the anal area as well. Of course I'm not a doctor. However, the stretching of the skin seems a possibility. I can urinate again, though still sore of course.
Best of course is to talk to your gyna about this or other specialist for that matter. And don't wait too long. A person must be able to go for regular bathroom visits.
When you explained that it happend so rapidly, I suspect, Patricia, that you and I have a very similar kind of LS. (Not all LS is the same, I now know.)
Thinking of you.
patricia86334 hanny32508
Posted
suzanne00 patricia86334
Posted
hanny32508 patricia86334
Posted
I understand now that it was the unknowing that caught me. After I had visited the specialist it seemed better somehow. I then learned there was still something that could be done. LS is LS. The medical world has no cure. But luckily there are ways to be able to make things liveable.
Doctors are learning as well. They need to see and hear from us. No two LS cases seem the same, I learned via my doctors. A challenge and a half for them as well. Careful observation and an openness to possible solutions is much needed.
I hope you soon find a doctor who is able to truly help.
hanny32508
Posted
patricia86334 hanny32508
Posted
My regular Dr. was not in her office today, she was on call at the hospital. Her nurse suggested I see the nurse/midwife instead...I said I didn't think that would do any good and I wanted to see my regular Dr. who has been treating me for 2 years..an aside: I took the great suggestion to try to find a Vulvar specialist, and there are actually several withing 2 hrs of here...but, when I tried to call the few that are in Asheville, NC, all the phone lines were down in the whole city. I even called the hospital to try to see if they could reach the clinic for me, but that line was down, too. So, since I was so desperate, I opted to go to my reg. Dr. anyway, as I thought I had to have this fixed immediately, if not sooner! Well, I really liked the nurse/midwife very much. She has patients who have LS, and I told her my fears and then she did the exam. After the exam, she said to me: there is nothing at all wrong with the anus. I said: What!! There has to be! It is all closed over with scar tissue. She said what I had seen and felt was scar tissue, but it was extending over the anus...the anus was fine underneath! All that terror for nothing. Well, at least I had my checkup..right? She had to talk me into believing her that all was good. I asked her several questions and was answered each one. When I was ready to leave, I said to her what on earth am I going to tell my husband? I have him convinced I am in for major surgery...I told her I thought since I didn't need any treatment for the LS...I probably could use a reference to a good psychiatrist as I was feeling as if I am crazy.
I must say the support and suggestions and warm concern we strangers here have for one another gave me so much comfort when I was sure I was going to have surgery of a not very happy kind. I will do my best to reply to anyone here, a regular or new one, even if all I have to add is some comforting words.
I am glad you cannot see my blushing face....
sarah33278 patricia86334
Posted
That is fantastic news unnecessary worrying don't worry we all worry. Cause for some celebration well that's one less problem you have to worry about. Great news.
patricia86334 sarah33278
Posted
suzanne00 patricia86334
Posted
hanny32508 patricia86334
Posted
Keep diligent about taking care of self, though. Perhaps now with some more self confidence.
suedm patricia86334
Posted
We have been brought up to fear the unknown and as Hanny said it is not KNOWING that is so frightening
I am delighted that you found help from this site - i know i have. Dont be afraid to discuss the condition with your female friends and relatives- they may be as fearful and embarrassed as you but not knowing what to do about their situation.
I have mentioned before that i talked to friends about The Itch on the Undercarriage That Would Not Go. How it was worse when i was stressed and how difficult it was (is) to manage at times. I come back to the subject every now and then to them to remind them to LOOK at themselves and be familiar with their own bodies. By using euphemisms with some humour it is easier to bring the subject up for the first time
As to your blushing face - perhaps a joyful virtual hug from us all will return your complexion back to normal again
Sue
patricia86334 suzanne00
Posted
patricia86334 hanny32508
Posted
hanny32508 patricia86334
Posted
How lonely a path your mother and grandmother must have walked. In a way we are better off. Though medically amazingly enough, not an awful lot has changed. Perhaps we are better able to keep this mean disease somewhat under control. And we have the support of each other here and for which I am very grateful.
I often wonder how we, as a group, can make an impact on science in such a way that more studies will be done. I so hope that a cure will be found.
Thanks for your incredible sharing. I so much appreciate it.
patricia86334 hanny32508
Posted
suedm patricia86334
Posted
I remember only too well how a desperate woman from the mid west US wrote she thought LS was caused by lack of hygiene - she THOUGHT she HAD been clean - but obviously not enough - so she would scrub herself with bleach every day- The site was not interactive and i never did find out about what happened to her- apart from her bleeding burning and the fact she was at the end of her tether. I read about 300-400 case histories and they were so sad and no positive outcomes mentioned AT ALL that i ceased checking on line until a few months ago. This site is invaluable for new comers to the "club" and to people like me who have had the condition for about 8 years now, the suppport is fantastic even if one isnt actually participating in a thread. I totally understand your fear Patricia- i have nursed total (radical)vulvectomies in the 1960's and your poor grandmother would have had a very difficult time
These days tho things are so very much improved both with the surgical techniques early diagnosis and treatment options there is no comparision to what happened 50 years ago.
Friends are wonderful at supporting altho they are uncertain about what i mean at times. I screen shot the slides in Dr Goldsteins lecture and printed them off- one brave friend did look at the slides (i printed them for my local medical practice when i changed medics) She was aghast that i was experiencing a bit of what she saw. I normally dont go into graphic detail about what has happened to the undercarriage - the slides meant she understood and would tell the other females what to look out for.
I bleat on about self examination constantly. Breast cancer self awareness is the norm these days i want it to be normal to look hard at all of you and not think it yukky as some parents made one feel.
I think you were and are remarkably brave and now you must go and have fun - get a new hair do, manicure, posh frock, make over, Get that feminine feeling again - and NEVER be afraid to get proper advice from the medics, they would be horrified if you didnt go to them when you were seriously worried about something and didnt go because you might feel a clot!
Celebrate and try to get all stressors out of your life
Sue
patricia86334 suedm
Posted
I do wish this disease had a nicer name, tho. Who wants Lichen on her? A name like: Beautiful Bottom would be OK.
You are right that women generally sort of avoid their bottom as if it was shameful...I wonder why? Men certainly don't seem to feel that way about their stuff.
suedm patricia86334
Posted
Beautiful Bottoms
I LIKE that name!
I wikied the soap and this is a little of the text:-
Fels-Naptha is an American brand of bar laundry soap used for pre-treating stains on clothing and as a home remedy for exposure to poison ivy and other skin irritants. The soap was originally created around 1893 by Fels and Co. and was the first soap to include naphtha. The inclusion of naphtha made the soap very effective for cleaning laundry, but it was not generally safe for personal use.
Almost as bad as bleach i imagine
Think of the pretty forms of moss and you may like the Lichen name more; In Victorian times scientists often named stuff by description of what it looked like to them and then put it into Latin or Greek - or a combo!
Sue
hanny32508 patricia86334
Posted
Stay calm and carry on, could be my slogan.
And I mostly wear gloves in the garden/yard.
laura2218 patricia86334
Posted