Hello ladies
Was hoping to talk to some women who have been through this already. I've been to 2 family doctors who both believe I have lichen sclerosus. My skin around my vulva has lost its pigmentation down to my anus. It is itchy sometimes they gave me steriod cream to use till I see a dermatologist which isn't till Feb ( I'm in Canada). I suffer from anxiety and am freaking myself out. It recently has become sore sometimes only on the right side. I've spent far to much time on Google and am worried I have vin. I go for a colyscopy on Oct 15th for LSIL and all this together is overwhelming.
There is a vey good lecture by dr. Goldstein about LS. The link is on this forum. I know for sure the link is in a thread I started about pseudocystic smegma abscess. I was diagnosed with LS 6 years ago after the birth of my 4th child. I really had it under control and was fine until the past 6 months. I just got my period back after having child #6 and for some reason I am having all sorts of problems! I am hoping it is just my hormones getting back to normal or maybe I am just getting old and it is getting worse! Really, for me once i got things under control with the estrogen and clobetasol cream, I have been alright and LS has been manageable. Everyone is different, but try not to fear too much, you should be able to manage this. Oh, and stay off google! I had myself convinced that I had vulva cancer. It just makes things worse and LS gets worse with stress.
Hi Christine,
All the ladies on here can totally empathise with your situation, there is a lot of very good info on this site, you will realise you aren't alone in your feelings of anxiety but should also realise that LS is a manageable condition. kb is right, anxiety makes LS a lot worse, I'm having flare ups at the minute as my father is ill and I'm going through a house move...boy am I itchy! My vulva and around to my anus has lost pigmentation too, it's a definite symptom of LS together with itching for a lot of people. My Dermatologist (UK) tells me to use the Clobestol daily when I have flare ups, her advice is to have ointment rather than cream as the skin absorbs the ointment better and doesn't wipe off so easily, also apply it at night rather than through the day to give it a chance to work whilst you are sleeping. You could also try emu oil or coconut oil to keep the area moisturised through the day. Urine can be an irritant too so is best not left on the skin. Try an emollient when washing yourself, definitely don't use perfumed soap or shower gels, avoid tight fitting clothes and wear cotton knickers, some women even go commando when they can! It seems like a lot to remember and I'm sure others will give you more ideas, but once you get into a routine all this becomes second nature, you will find a way to manage it, oh and definitely stop googling!
Very best wishes, Hazel
Hey, I'm your age & live in Canada too. I have seen a few dermatologists in Vancouver. The wait is terrible but keep using the clobetasol cream & try to reduce your stress. Stress is the culprit for my flare ups. It's a depressing condition but can be managed...at least we can try to think positively. Relax & breathe.
Hi Christine,
So sorry that you have all of this going on. I hope that the LSIL turns out to be a false scare. It can all get so worrisome when stuff happens with our bodies. The LS can be frustrating and uncomfortable, and can also be challenging to navigate in a relationship. However, a lot of women on this site have seen their LS go into remission for long periods of time and this can be especially true when premenopausal. All of us notice some patterns when it gets better or worse and try to do more of whatever makes it better. There are lots of ideas on this forum--have a look around. These range from how to take care of the LS vulva (bathing, creams), how to apply the steroid (see the Goldstein lecture), and how we might improve our health overall to lower our autoimmunity. I have found everyone here friendly and warm, and never feel like I share TMI about anything. The Goldstein lecture that KB mentions is definitely worth a listen.
Can you tell us a bit more about you and what you are most nervous about?
All my best,
Suzanne
It is indeed scary at first. You don't know what is happening, it was probably an illness you've never heard of before. When I received the diagnoses I didn't know either. Hard to talk about to friends even. I myself am so glad I found this forum. There has been such good sharing and support given by the people here. Dr. Goldstein gives some good info. I encourage you to take some time to visit his website.
The positive is that your family doctors have diagnosed LS in time. They also have given you steroid cream. Add to that coconut oil or Emu-oil to help with moisturizing. I rinse after every bathroom visit with water and re-apply with oil. Be diligent with the steroid cream. It will keep LS under control. Don't apply too much of it, just a small amount at the time. Some say pea size amount.
Very important is that you find your calm and no longer be nervous about it. Stress is your most worse enemy. I suggest you try to avoid caffein, alcohol and sugar. Every little bit helps to keep things calm. Wear cotton on your skin or when possible wear nothing at all. Avoid soap.
When you have the time, browse through the various topics on this forum regarding LS. It may be too much to absorb all at once perhaps. It can be overwhelming at first. Take it step by step.
I keep a little notebook next to my computer to write down LS info that I consider helpful. (one forgets so soon)
I visit this forum regularly. Somehow it pulls me through the rough times. It is my hope that you find some support here as well.
Wishing you well.
Christine, I'm in eastern Ontario. It's good that you're going for colposcopy soon, because the gynaecologist who examines you will have much more experience diagnosing LS than the GPs. He or she won't even necessarily do a biopsy. I worried for months before my first colposcopy after LS diagnosis (a year ago) and she just looked with the magnifier (colposcope) and said it looked good – no punch at all!
Here's the link to the discussion here where we were allowed to post the link to Dr. Goldstein's lecture. It will definitely make you feel better to know how much we can do to manage LS. It never has to lead to cancer.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
Everyone so far has given you great advice. One thing I would repeat and emphasize from my own experience is sugar. The major flare that took me to emerg last summer, even though I know now I've had LS for 40 years, was probably set off by eating excessive amounts of sugar. Our pee and poo are caustic to LS type skin and some foods make that much worse. I haven't cut out every bit of sugar, but I no longer eat any large servings – like a butter tart, an ice cream cone, a candy bar, etc. After I made this change, I got better very quickly. If your bowels are loose, that could be irritating your perineum (that's where my white patch comes and goes, too). I finally decided to see if it was my two cups a day of coffee were causing that and they had been! So now after one year of Clobetasol – it works very slowly – and some lifestyle changes (as everyone here says) I'm pretty much in remission.
We'll be glad to hear from you more. If you must google things, try 'stress management'. Anxiety only makes it worse.
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....
hello Christine, I understand totally how upset and scared you are. I am, too. I also have awful anxiety and depression and fears...I am freakiing myself out, too, because I just noticed my skin fusion is getting worse and I don't know what will be the next step for me. I think I may be making my condition worse with the stress I am adding to it, and every time I feel even a twinge of pain I panic. I wish I could be one of those brave women who takes everything in stride, but I am soooo not.
The fact is, the clobetasol propionate that I use is helping the symptoms of burning and pain. That is good, right? The fusing is a worry, but it seems that you do not have fusing, so if you only have the burning and pain, that will be mostly eliminated using the steroid ointment. (and use the ointment if you have a choice, not the cream)
I saw a link on this site to a lecture and I will listen to that as soon as I can. I was watching grandchildren today, so I did'nt want to have that in the background!
There are a lot of really great women on this post and many excellent suggestions and a real willingness to help.
I understand how scared you are now. But lots of women have had this condition for years and years and years, and just go on dealing with it and you will, too.
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....