LS closing anus

Hi Hanny,  I am so glad I checked my email before closing down.  It is 2a.m. and I am still awake because of stress and fear.  (Did I say I am a big chicken?)  I think your idea may work...at least I hope it would.   I have a dr. appt on Wed, but I am going to call tomorrow and see if she will fit me in.  The LS in the vaginal area is not bad now, under control.  I read about the suffering other women are having, redness, sores, pain, etc and I am glad I don't have that any more, but the anus now so involved has scared me.  Especially since my dr. told me not to even use the clob. in that area, as LS only affects vaginal tissue.  I have also read here that estrogen has helped some women, so I mentioned that to the dr. and she just shook her head and said it does not.  I understand now that she is not very well informed about LS, but I didn't know that at the time I went to her. I had a dr. appt scheduled for last month, but other things took precidence  (that looks not spelled right, but it is late and I am befuddled)...anyway, I skipped that appt. and now I am beating myself up so much that if I had gone, she might have seen that the anal area was closing over a bit and I could have been using the clob.  So I have added beating  myself up to my list of other stresses.  I am a mess. 

Hi Patricia--I'm so sorry that this is happening. Also want to send a little reminder to be gentle with yourself.  As you indicated, neither you nor your doctor knew that LS can strike on the anus.  And, this occurred when other parts where you had LS were doing well.  How could you have known?  And it happened so fast.  I am hopeful for a dilation procedure, too. I wish you well and I hope for a remedy and healing, soon!!!  All my best to you!  --Suzanne

I can totally understand that you feel stressed and full of fear.  Physical activity helped me a lot, working in the yard, going for walks.  Even cleaning house was helpful to live with the fear. 

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.  

Forgot:  Treat with Clobetasol, premarin and CMO.  (small amounts)  Good preparation for the dilating procedure.  Alternate with Emu oil and coconut oil, whatever gives you comfort.

OK...this is to my wonderful, helpful, wise, and kind supportive women...Hanny, Sarah, Suzanne, Libsan, and Suedm............I have to write this right away while the awful embarassment is only horrifying and not totally mortifying....wait, it is mortifying as well.  After a very trialsom day I am home and I do not have a closed-over anus after all.  I am almost wishing I had something even worse to tell as I feel a real foolish person....I was sooo stressed out and just so afraid, thinking of all the possible things I would have to go through to get this fixed. 

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....

Hi Patricia

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.

Thank you, Sarah...you are right!  I will stop worrying right now...well, maybe not stop  but slow down a bit  

You must be so relieved, Patricia!  No worries about embarrassment!  I'm so glad that you got some good news!  But, can you say more about the scarring?  It sounds like the nursed did affirm that there is scarring over the anus?  But, you are not apparently in danger of it being closed over?  No wonder you were confused!  Thanks for letting us know--so glad to hear your good news!  --Suzanne

Big relieve for all of us.  And indeed, the LS extends over,  Same with over the vagina.  I can attest to that.  My specialist, after the dilation, was able to inspect the vagina and again, nothing to worry there.  

Keep diligent about taking care of self, though.  Perhaps now with some more self confidence.  

Dear Patricia - there is no need to feel embarrassed about your real heart felt anxiety about your(apparent) sudden change in health, the fact your fears are foundless is fantastic - wonderful- I don't use hyberbole very often - but I think you must be SOO relieved, i feel as if i am smiling with you. And actually it does illustrate only too well how fear is usually worse than the event, and thus trying to put anxieties into perpective is really worthwhile.

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

Again, mostly to: Hanny, Sarah, Suzanne, Libsan and Suedm...but also for anyone else to read, but to the first group with real and warm afffection.  Your replies to my "after Dr. visti"...made me feel so much better.  My husband kept telling me not to feel stupid, he said feeling stupid would make me neglect seeing the dr. another time if I thought I may be mistaken...and all of you have made me regain my spirit.  Thank you!  As for the thick "bridge" that was almost like a tight sling over the opening....I felt for it this morn ing  and it was gone.  I kept trying again to see if I was mistaken, but it has "melted" back into place it seems.  So no wonder the dr. didn't see anything...if I had not been too scared to check it before I went to the dr., I wouldn't even have gone.  All I can say is I was so distraught over it...and believe me, it WAS there...I could hook my finger under it even, it was tight and seemed attached on each side, and it did cover  most of the anus.  It did.  I was so annoyed with it that I put the clobetasol on it three times!  ..I was telling myself that I was being foolish, that I may be damaging surrounding skin, but I wanted that thick bridge gone.  I was afraid to say I did that, because I am afraid of giving wrong adivice, but Suzanne asked what happened to the skin, so this is all I know for sure.  I put the clob. right on and under the bridge, but was careful not to get it anywhere else...And I always keep emu oil on all the  undercarriage (love that description)....and I forced the dr. to see me without an appt because for once in my life I was determined and assertive for myself.

I have been thinking of you since you had your proceedure, I know you were in pain and I was upset when you said you cannot tolerate any pain medication...that had to be very difficult for you to endure, esp since we have to go to the bathroom everyday and anticipating the pain is just as bad.  After I had the dr. visit yesterday, I tried to understand myself a bit and why I was so terrified of the surgury I was sure was in my near, near future....I remember my mother telling me about the terrible surgury my nanny had to undergo years and years ago...now that I know more about this condition that we share , LS, I know that is what my nanny had.  She must have been even more embarassed to show anyone, as women used to be even more modest that today.  She had the most severe case and her surgury was so extensive, my mom would just say they had to remove everything..and my mom would say it with such a sudder. My mom had to go back to Ireland to take care of my nanny for months. And my mother had LS, and she died of anal cancer.  So I guess my fears go back a long way.  I know the anal cancer was not about the LS.  I have gone on line and looked at some of the pictures of severe LS and I feel so sorry for the poor women who were too afraid or modest or poor to go to a dr. before the condition ever got so bad, but I guess that is just what my nanny must have done.  She didn't have a forum like this to talk about things that no one talks about in public

Hi Patricia,

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.  

thank you hanny....I have to tell you this.....the way I picture you in my mind...I see you as a very proper English lady, working in your garden in gloves, with a straw hat and a basket for all you bring in....and the expression "Stay calm and carry on"....springs to mind, too!

Hi Patricia, When i was diagnosed only a few years ago (2006) this site nor many others relating to LS were up and running.There were no learned articles i could source at the time,  there was one American site that had been  around for a couple of years i believe because the research request had ended; where women were asked to write  to the site giving their case histories and experiences. This was BEFORE potent steroids were the normal treatment. About the 1999-2000's Treatments were often  male hormones anti inflammatories and anti histimines i think i recall

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

Oh that description of the bleach scrubbing almost made me sick....how could she stand the pain?  and keep doing it.  So, so sad.  Probably no one will remember, but decades ago there was a harsh laundry soap called Fells Naptha...no idea what it meant...anyway, my mother told me that when my nan went to the dr., he asked her what she was washing with, Fells Naptha??  She must have been trying to wash it away, too. 

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. 

I laughed when i read your comment about men's feelings for their bits-- they all seem VERY precious about their tackle - We must raise the Banner for:

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

Had a good chuckle. It made my day. I'm Canadian, in BC. 

Stay calm and carry on, could be my slogan. 

And I mostly wear gloves in the garden/yard.  

I don't have but a minute, I'll write more later. I read about your nanny and her surgery...I suppose her LS developed into Vulvar Cancer, it happens - rarely. Sounds like she had a radical vulvectomy. Either cancer cells developed in the anus or her LS returned and that caused the cancer in the anal area. Either way, I am sure it was horrid. I am glad your mother was able to go and help her. Good luck with everything!