33 with lichen sclerosus and very scared

Hi 

I came across your name and that you live in Vancouver.  I live in Abbotsford.  My dr thinks I have lichen schlerosus and I am so scared to get a biopsy that it is making me sick.  I was hoping to get some advice from someone who has gone through this.  She is sending me to a gyno to determine if I have this.  Thanks

 

hello.  I am so glad I have found this forum.  I am learning a lot and am beginning to feel a small lessening of fear and stress.  I was diagnosed with LS more than a year ago.  The Clobetasol works very well on the whitness and a very small dark spot I had unknowingly developed...but I get sick to my stomach and stress out soooo much when I see and feel and worry about the fusing of the skin on my bottom.  At first my Dr. told me LS  ONLY affects the vaginal area, so I didn't apply the Clobetasol farther back, but now I see the area around my bum is fusing and it is fusing very fast.  That is what is causing me to panic.  I had no idea it was a good thing to cut out coffee, so I will do that starting tomorrow (too late for today!)  I will do anything at all to halt the fusing.  I always  had low blood pressure, but the fear and worry of this disease has caused me to have high blood pressure and now that is another cause of fear.  I cannot seem to control my stress.  I am terrified of having to have surgery to cut away the fusing skin...has anyone else had to have that done?  I guess I am a big chicken.  I am nearly 70, and realize I have had LS for a very, very long time without knowing it.  My mother and grandmother had this condition, but it was called Leukoplakia a long time ago and was not treated as it seemed it only caused the skin to whiten.  Oh well.  I am writing here in hopes that someone will reply and offer some advice or some tip that has worked for her.  I live in the USA, but born in Ireland.

Hi Patricia,

It sounds like your biggest worry is the stress part and increased by the thought of having to have surgery. Perhaps it helps to know what may or may not be laying ahead.  

Are you interested in hearing about a procedure that will be done to me this coming Monday?  It's not as scary as you may think.  Perhaps it helps your worrying.

hello.  Yes, I would be very interested in your upcoming procedure.  I can't believe anyone is willing to reply to me so soon.  Thank you

The procedure is called 'dilation'.  No cutting involved.

My fusing of the outer labia went a bit too far after a recent flare up.  Leaving me with only a pinhole to pass the urine through.  What will happen is that they will stretch this small opening.  Afterwards I will have to keep this opening open myself with a dilator.  This stretching will happen under full anestetics.  

If you have any questions, please ask.  I will try to give an answer, within the experiences I have had this far.  

  

well...it seems you may be away from this board for now.  I do hope to hear from you when you have the time.  Actually, just reading your few words has already helped me calm down a little bit.  I put off my last Dr. visit in fact, as I do not want to face reality.  I use the clobetasol every other day still, even tho by now I ought to be using it only once a week or even less.  Maybe I have an agressive form of LS.    Anyway, I will be looking forward to hearing from you, hanny, and/or anyone else with any advice or even just the desire to talk.    :o)

hi...seems we have crossed wires here and I didn't know you had already replied.  Have you had LS for very long?   I still have very little fusing, although the outer labia is totally gone (and I didn't even hear it leave....) but what is worrisome now is I notice the area around the anus has closed in in an alarming way and so fast.  I don't know just what the solution to that will be, and I hate to think of whatever surgery may need to be done if the anus closes all the way.  I had a fistula repaired years ago and that was very painful.  Of course, the problem there was made worse in that my Dr. thought I had a squamous cell cancer and tried to cut it off, with only local anesthesia....and after starting to cut, he realized it was a fistula.  He tried to sew it up, and the stitches opened as soon as I stood up...so I went to a specialist who repaired the fistula properly, but it was pretty painful.  So.  I am afraid of what may be involved in cutting an opening in the anal area. 

I do hope your dilation procedure goes well and you get relief.  Do you have any idea what caused the recent flare up ?  Do you notice any relation between  your diet or anything else that makes the LS worse for  you? 

Hi Patricia,

I'm glad to hear that you 're not as worried anymore.  But understand totally that you were, after your recent traumatic experience.  Yet, I would like to encourage you to go visit your doctor or gynacologist or ...  whoever knows more about the human body than we do.  With that: Do remember that you are in charge on what is going to happen.  Take your time to think things through and then decide whether you wish to go for a certain treatment or not.  

Of course I had hoped that this day (Monday now) would not come.  With me the diagnoses that I have LS came a bit late.  I had been complaining about the area for years, but no doctor picked up on what was going on. Till about a year ago when I went to the gyna for something entirely different.  This man knew at least what it was and made sure by doing a biopsy. He will also do the dilation.  (He's a precise and observant person. I think I can put my trust in him doing this procedure.)  

The most recent flare up was most likely caused by an ugly stressful event.  That and perhaps the very hot weather we were experiencing here at the same time.  My family doctor put me on anti-biotics, thinking there might be an infection.  Another experience richer: the anti-biotics stopped the flare-up, if only temporary.

I'm not entirely sure whether the strict diet that I was already following due to thyroid and adrenal issues has made a difference to the LS.  Leaving out caffeine, alcohol and added sugar and just recently the gluten diet (for intestines) have made a difference in how I feel.  More energy and getting more done in a day.  One thing stands out, I think:  The sugar.  

Hi Patricia, glad you found us! If you google the Koebner Effect you'll find it's about the way skin trauma can trigger LS and psoriasis flares. I was getting a regular tear in my perineum for years before I had my first child, but I do feel the episiotomy really set the stage for that tear to haunt my sex life for the next thirty years. That botched surgery you had is a perfect example of the Koebner phenomenon in action. You're certainly right to be using the clobetasol more often. I've seen some photos where the patient has a long tear right up her butt crack (sorry for the technical terminology). You're right that some people have a more aggressive form of LS. If I were you I'd be keeping that really slathered with coconut oil or vaseline, but not right when you apply the clob, wait half an hour till it's all absorbed. I expect you'll find quitting coffee helps quite quickly. Do you tend to have very loose BM's? Mine are so normal now.

You really need to find a way to calm yourself. Do you do any hobbies that require intense concentration? It's easy to say 'don't worry', but our minds don't take orders very well (except orders like 'eat that ice cream cone!'). If you find something to absorb your mind, it can't be in two places at once. Look up body scan online. It's a mindfulness-based stress reduction exercise. There will be instructions for a practice to do when you want to relax and fall asleep. Again, you're mind can't do two things at once.

I am grateful that you will share your experiences here.  I know you mentioned  a+ stressful event ... I have had too many of those recently, too.  Almost 1 yr ago my daughter died of a brain tumor.  She had been undergoing just awful side effects from the treatments, and finally just went to sleep.  Even though we were expecting it, it was still a shock, as we thought she had more time.  I know that event, and the 3 years preceeding it, were very bad for my LS situation. 

I read about a book that claims a person can cure an auto-immune disease by eliminating sugar entirely.  I think that may be my next endeavor...or at least to the best of my ability.  I have fibromyalgia, another auto-immune disease, and I  have read that sugar makes that worse as well.    I know my Dr. said that diet has nothing to do with LS, but I wonder.   I read here today about using emuaid soap, so I went to  eBay and bought a bar, another person here said to drink raspberry leaf tea, so my husband stopped at a health food store and bought that for me, so I will try that, too.  I already use emu oil on my bottom area, but sometimes it irritates it, and other times it makes it feel better.  I bought some underwear I saw advertised to "cure" LS, it was very expensive, as changing US $$ to pounds added quite a bit, but I have tried the underwear and it actually helps the pain, so, it is worth it.  (Costs about as much as one Dr. visit...)  I am trying to think here of anything you may be interested in trying, too.  I will be thinking of  you on Monday, and hope your proceedure goes well and is no trouble at all!  Please come back here and write when  you can.  I am sending good thoughts your way....

Thank you Patricia.  Hope you will soon be coping better.  It is sometimes so hard to overcome life's trials.  Sorry to read about your daughter.  My sincere sympathies.  It will take time to heal that scar as well.  

Ratz!!  I just spent 20 min replying to you, Ms Morrell...but none came through!!  How annoying.  I have no time now to repeat it all as my husband will be home in a few minutes...but I want to thank you for your words and advise...I am anxious to see if stopping coffee helps.   I will be here later tonight or tomorrow to reply to other things you said and suggest.  I will go to both sites you mention....do you think the vaseline will help stop the fusing?  The skin almost feels a bit sticky and I wonder if that is what helps it fuse to itself?  (guess "sticky" isn't too technical either)....and yes, the BMs are loose!!  that is very recent and I don't know why.  I haven't really changed my diet so don't know why the change.  Oh, I am a bit ticked off that my entire post was lost and I don't have time now to say all I wanted to say.  Oh well, I will be back, and thank you for writing....

thank you, hanny.

Glad to hear from you, Hanny.  I hope that you are doing okay mentally and physically while you are waiting for Monday.  --Suzanne

I'm so sorry to hear of the loss of your daughter, Patricia.  That sounds devastating. --Suzanne

Patricia, 'sticky' is exactly the right description of the problem. Two raw surfaces bond together. So oily stuff may keep them from doing that. When I first noticed my fusing twelve years ago, in total ignorance I responded by scrubbing with soap all the time. BIG mistake.

I look forward to hearing more from you.

Life isn't hard enough but one trial has to cause another. There's nothing harder than out-living your child. A few years ago our youngest sister was found dead in her room – she'd had mental health issues and chronic drug abuse which caused a burst aneurysm. My remaining sister and I both lost half our hair at the same time.

Hello to Ms Morrell and everyone else who is here this evening.  Ms Morrell, I am so, so sorry about your sister's death.  What a tragedy.  People with mental health issues just have such a difficult time understanding themselves.  It is so hard for them ...  I am so  very sorry for you and the rest of  your family.

I want to reply to your post about your scrubbing with soap...it seems like the right thing to do as we all think cleanliness is the answer to everything!  My Dr. told me not to use soap, and I am sure your Dr. did, too, once you got to a Dr.,  but I saw a post here earlier that using emuaid soap helped a lot so I am going to try that once I get the soap I ordered.  May I ask you another question:  you say you had fusing 12 yrs ago...has the fusing stopped?  Is there a stopping point on it's own?  Did you have to have surgery or any thing else that stopped the fusing?  That is my main concern now, as the pain and burning are not so bad most of the time.  And I will definitely use coconut oil and emu oil more often now that I realize that "sticky" is happening.

I understand it is getting late in the evening, but I will check back tomorrow in hopes that there is more information coming from you.

(I am trying to get down a cup of raspberry tea....wish I liked tea of any kind!  I am coffee all the way and now I am going to give that up!)

Thanks Suzanne.

So sorry to hear about your sister, Morrell.  --Suzanne

My fusing happened quickly around menopause - the hood tightened over my clitoris. I was celibate for seven years and vaguely expected to have trouble starting up again if I met someone. It was difficult, but I managed to have intercourse in 2008. Looking back, though, it was always painful. My big episode in August 2013 was that as my inner labia were in the final stage of sticking together and completely burying my clitoris, I developed a cyst under it big enough to take me to emergency. Then I was sent to a gynaecologist who diagnosed LS after a quick look. When I explained to my husband what this disease was, he was open about how he'd known all along that I was in pain – that was why he always cut intercourse short. It was a turn-off for him to be causing me pain. In the past year that 'seam' has disappeared and a tough bridge has continued to form across the top of my vagina. The tear in my perineum comes and goes and each time scarring tightens it a bit. This may sound awful, but having heard about Hanny's pinhole opening, I appreciate I have slow LS and I still have a relatively large introitus. I believe that being thorough with my treatment and refraining from trying intercourse will prevent extreme narrowing.

You'll have a few headaches from quitting coffee, but not for long. It's so worth it. I don't miss it at all now.

hello.  Well, this is the first morning without coffee....yikes.  I am having a cup of the raspberry tea.  I added lime juice and it helps a lot.  I also downed about a tsp. of coconut oil...I am really going to be shaking up my whole entire body over trying to halt or slow down the LS.  I am trying so hard to be confident as my normal nature is sooooo pessimistic.  The mind over matter thing isn't my strong suit.

I am sorry to hear a bit more of your LS story...about your intimate life pain.  I don't have to worry about that, and haven't for many years.  So maybe what caused me so much stress (an uninvolved husband) has really been a bit of a blessing in disguise. ?.   At least I have no trauma to the area, right??  Like y ou, I felt a guilty bit of relief that I am not as bad off as Hanny.   I have been thinking of her since reading her post yesterday and will have her in my thoughts right until her procedure is over.   I can't say enough how glad I am that I went searching on line yesterday for some new information about this LS, and I came across this blog/forum.  I already feel that I can do something for myself instead of just fretting that this LS will do as it pleases.  

I am thinking of listening to the lecture that was mentioned here, but in a way I am afraid of what I will hear...or mostly see...as he shows photos of surgery?  I also cannot "soak" as he recommends as arthritis prevents me from getting into a bat h   tub and I only take showers.....  oh well, I will do the best I can.

And I am looking forward to not missing coffee!!

Good positive thinking! I think of our celibacy as a wonderful gift from my husband.

There is plenty we can do for LS over and above what the doctor says. Coming here I'm always discovering more. I also learn a lot by researching things contributors mention.

If you can't get into a tub, maybe you could get a great big sponge, soak it with warm water and snug it between your legs while you shower. But wait till you've soaped and rinsed your body – you don't want the sponge catching soap suds. Nice to have an excuse to have a really long, not-so-'green' shower!

The key pieces of info on the video are using the steroid ointment rather than cream, Dermovate brand rather than generic clobetasol (twice the cost, but it lasts a whole year), the pre-soaking, and rubbing it in for 90 seconds. (You don't want it running over onto heathly skin outside the vulva.) The early section convinced me I don't have to worry about thinning the skin with the potent medication – LS skin is way too thick.

Oh thank you so much for the advice.  I love the idea of a big sponge to "soak"....I would never have thought of that myself.  I will buy a sponge right away.  After the tip to use emuaid soap on bottom area, I tried to get it in a local health food store yesterday, but no one sells it, probably because it is very overpriced....$20.00 a bar on eBay...but I bought on yesterday anyway.  The raspberry tea was $8 for a small box...and the Dermasilk undies I bought were $155.00 for two!!  This LS is expensive.

At least the Clobetasol is not expensive, yet.  But the prescriptions my first Dr. ordered when she thought it was a bad yeast infection, were expensive and when I went to the ob/gyn the next day who diagnosed the problem as LS and not yeast,  she told me NOT to use the previous day's prescriptions.   Sheeeshh.  I have not had the best success with Drs.  One totally misdiagnosed the fistula, and the other misdiagnosed LS as a bad yeast infection.  My poor bottom was sooooo swollen and awful she guessed it was yeast.  Shouldn't a Dr. at least suspect something is going on with such a terrible condition?  Anyway, that is over, and now I had a biopsy so know it is LS I am dealing with and am getting treatment and regular check-ups and the thing that is helping my mental state the most is being here and able to actually talk to other women with the same problem I have.  It is a tremendous relief to know there will still be more ideas and tips and suggestions I can use.

I have a sneaking suspicion that my spelling is suffering and I blame that on the level of stress I am trying to keep under control.  But I am getting tired of hitting "backspace" and re-typing, so if my spelling is upsetting, I am sorry....or maybe it is just the lack of coffee??

Also, it seems we both have husbands who, for one reason or another, are not making our condition worse.    :o)

Hello, Hanny....

Still thinking about you and also wishing you did not have to face Monday, but you will be so much better and so relieved in your mind once the procedure is over.  I  have found that the things I have most dreaded and feared turned out to be much less than I thought they would be...now that still doesn't help me as much as it should...but I do know that fear is bigger in me than the actual event.  And I am so grateful for all the wonderful pain relieveing medicines that are available now.  Anyway, I am thinking about you.

Thank you, Patricia.  I need all the help I can get.

I know.  Hearing words of bravery from such a big chicken as I am may seem crazy.  However, I do know from experience, that once you are actually starting the pre-op procedure, answering the million questions over and over again, there is a calming effect that takes over.  It's as if, well, there is no turning back and let's just get this show on the road.  You said you trust  your doctor, and you will have no cutting, and your bottom will be soooo much better after....however, it is the anxiety of waiting more than anything that you need to go through  until Monday morning.  You will have no cutting, so no stitches...and no one will fault you for saying you need to rest and take it easy for a day or so!! 

I am thinking about you, and probably so are lots of the women on here who may not be as fond of typing and expressing themselves as I am!!

Bravery does not exist.  One has no choice at some point in one's life.  My mind at present seems preoccupied and I can not be creative as I usually am.  Just work in the yard and do housework.  Being tense in some way releases itself only in cleaning and gardening for me.  House and yard profit.  

Just keep typing and expressing Patricia.  It will do you good.

 

Two more sleeps, Hanny. Thinking of you. One thought. Just in case the doctor assumes you want to be dilated enough to have sex, you might want to make sure they're not overdoing it. We had a contributor here recently who'd had it done – too much, too fast. You don't need a lot of dilation – just enough so you can take over and accomplish it gradually at home (I'm thinking with heated oil as midwives do). Anyway, putting myself in your shoes, that's what's occurred to me.

perfect suggestion....I was wondering a while ago if maybe we, or some of us, should do that sort of thing anyway?  I hadn't thought of the heated oil, but would it be a good idea to gradually keep that area soft and open and not wait until it fuses?

And to Hanny...yes, there is no such thing as bravery, I wish there was and I could buy some somewhere.  But we all do what we have to do when we have to do it.  I am glad you like yardwork and can do that.

I think you're right, Patricia. If I were getting very narrow, slow gentle dilation might be a very good practice to do regularly. I'm a long way from that, still just a bit too narrow for sex.

I guess I am just grateful I no longer am bothered by no sex....I am glad I am not young and going through this. 

I hope I made it clear, however, repeating the message won't hurt.  Thanks for thinking of me and the extra tip.

 

I agree with what's being shared about dilation. Further, I've come to the conclusion that trying to dilate the vaginal tissues, or have sex that stretches the tissues with a too narrow introitus, is damaging if we are still in the active stage of LS (i.e., not in remission).  If the tissues are in active LS, they are of a different type than normal stretchy vaginal tissues.  The tissues are thicker, more rigid, and prone to tearing.  And as you point out Morrell, probably they are at great risk for the Koebner phenomena and increasing the damage from LS by doing so. I tried that in the early, active stage of my LS, and made no progress (and may have worsened my LS).  Each time that I would painstakingly dilate the intoitus, it made no difference to the following time and I would have to start over as if I'd never dilated at all. So I backed off and am basically waiting for the LS to improve (which I think it is with the steroid cream and reducing sugar from fruit in my diet).  If the tissues aren't kind of stretchy and elastic, my guess is that this is not the time to try to enlarge, but to wait until there's improvement in the LS.  

That's a very good explanation, Suzanne. We go into so much more detail here than doctors have time for.

Patricia, I was young and went through it and I can't decide whether I'd have been worse off knowing. I'd have had a clear explanation for my sex-obsessed husband and if he'd reacted badly, I'd have been out the door. You can't rewrite history. I still had two great kids after sex had become our main point of conflict.