I was diagnosed with LS two days ago with great surprise and am so depressed. It is Christmas Eve and I hope everyone is enjoying their time. I can't stop crying!!! I know you understand. I'm so glad I found this site because I feel lost. My GP told me to get Otc cortisone and use for a month. And that I would probably need biopsy and to be checked for cancer. After reading, and googling I see most people are immediately put on Clob. The video on here says to never get off of it as well. Should I request that? I feel so depressed. Any advice or stories of hope would be appreciated. I do realize it's holiday right now though.
Hi. Don't feel too bad. It is a manageable disease. Go back to your Gp and tell them you have researched this illness and discovered the best known treatment at the moment is Clobetasol or decorate(same Thing) ointment not cream to use daily until under control then reduce to twice weekly maintenance. Mention this site as most Gp's know of it. Goodwick. Try to enjoy Christmas. It will be fine once you get over the shock of diagnosis. All the best season wishes and for 2017
Assuming that you are currently itching and miserable? Fastest way i have found to deal with it is to put a heaped teaspoon of bicarbonate of soda. (Baking soda) into half a mug a warm water, Dip in a cottonwool pad, and dab it on all the itchy bits..... INstant relief for me and makes me feel much more able to cope...
Going undiagnosed is much worse than actually knowing what is wrong...... Now you can move forwad and get on with dealing with it...
xx. Please dont cry... There are loads of us this forum and we dont all cry all the time....
Enjoy Christmas, and sort this out in the new year.
xx. NMD.
My dear Willow of course you are crying as your GP is a Clod!!! If I had been you I would be crying too. He/she scared you and that is dreadful. Ok Willow so having said that Dry those tears don't google any more and any questions you may have regarding LS there will be someone on here who can help and clearly advise you. You are not on your own though it may feel like it now.
you really do need to have a biopsy to get absolute diagnosis. So try enjoy ChRisTmas and ask your doctor to refer you to a LS specialist /consultant Whilst you are waiting wash the area in Dermol 500 and use it as a moisturiser also. If you are experiencing soreness perhaps ask doctor to prescribe a mild steroid cream to keep on top of it. Obviously it difficult to advise without knowing what you are feeling in that area. I would try keep it simple and try to relax and then you can get support and help with management plan including perhaps looking at diet which can be a factor for this really dastardly condition X
Thank you Nelsmydog. Yes pretty miserable right now; pain and itching. Otc cortisone ( very mild) is helping a tad. I WILL try the soda suggestion tonight ! I've seen your name in a few places as I've read today and you seem to have great advice and a good attitude toward this plight. I guess it's just so new to me plus I had no idea I had a problem. ( thought maybe a yeast infection). I've never even heard of this and wondered what had done to cause it. Now I'm learning more and it's apparently autoimmune. It just happens. Ugh.
Yes, I don't mean to sound too pitiful, I am under so much stress the last year so I'm not quite myself. But... I will be. The crying will not last. Thank you very much for caring. I am very private and thus is so personal. I'm feeling a little better just knowing this group of women are willing to share with each other.
Thank you so much. Yes. I got totally freaked out. And frankly I'm not sure she is well versed in this problem. I will get some Dermol and will talk with her next week. This group's info has really helped me feel like I'm at least not alone. Have a lovely Christmas in the meantime Sedg. I will update you. With heartfelt thanks.....
And I will also stop googling!! I think I've found a great place here for info and camaraderie and that truly helps.
Hi willow.
i feel I need o reply as I know you must be upset. Here I am Xmas day I got told I had it end November and I burst in to tears when having white areas looked at. I think what sets this apart from other diseases is we can't really ask for support from friends and relatives as I don't think they know what to say. I got the Clob cream but then asked for ointment as it spreads easier as if it is sore down there the cream I found not to spread but other people will be different. I'm coming over positive here but I aren't I'm the same as you very anxious about it all, I used the Clob cream and then ointment and it did work well. Really got rid of the soreness and the white stopped spreading. I think the consultants make it worse for us by not explaining. I came on here and googled and spoke to people on here who are brilliant and have had it for years. My consultant said it isn't just for cancer but for any skin complaints there. I had biopsy done Thursday. Don't look at images on Google my consultant on Thursday told me they are very very worse cases.
Sue, how nice of you to respond on Christmas Day. Yes you are so right. I feel isolated because you can't talk to people about this. It's too personal and embarrassing. I have pretty much missed the holiday this year because I know people would see that I'm upset ( I can't hide it well) so I've stayed away.
Like you, when I got home I looked and saw the white skin and I fell apart. I admit that I'm not good about medical issues. I'm even a fainter when giving blood or getting shots so that doesn't help I'm sure!
I'm seeing my gp next week for a consult. I told them I was having a very hard time dealing with this and needed to have more info. I'm losing my good insurance on Dec 31. So that worries me too. I will have another kind but not as good...just when I need it! That adds to my distress so much. I will ask my doctor about going ahead and getting in the Clob ointment. The over the counter cortisone has helped a little but everything I read says you should attack it right away with Clob. I also tried the baking soda/ water last night. It eased it ...but I'm still fighting major fear and depression over this, I can't lie and pretend otherwise. Thank you so much for caring Sue. I hope your biopsy wasn't too difficult. That scares me too. I'm here for you too if you need to emote. I'm so sorry you gave this but it helps to know we're not alone.
Take care and thank you again.
Hi Willow,
it doesn't matter it Xmas day. I just know how you felt and feel. It does slowly sink in and once you've got more knowledge you end up with a lot of knowledge to question Drs then. Plus I think we need someone to talk to. You sound like me a private person and so find all this a bit much all the investigations and like you say way too personal. I just broke down in the biopsy in tears it was just too much, I know they see things all the time but that doesn't work being told that. like you it has made my anxiety and depression worse. If you read things though and see the ointment does work which I can say has for me I've only used it for two weeks but then had to stop because of the biopsy. I'm at a loss I ride my bike everyday except today and I can't. Your insurance must be a stress I don't know how tHat works I aren't in US. You do sound a bit better though. X
Yes Sue. The personal part of it is really hard for me. I guess I'll have to get used to it. And how true that not being able to talk to anyone makes it so much harder. I think this site may be a godsend for someone like me. I am trying to be better but honestly it's a facade right now. Like you, it has made my anxiety levels soar and I've never ever been so depressed. I have little crying jags so I don't want to around family right now. I've spent the holiday pretty much alone by choice, not wanting to bring anyone else down. I'm sure I will adjust. It is just still unreal to me and what I saw on Google made me feel that the rest of my life would be so different and isolated. I don't mean to be dramatic, but it feels very dramatic to me. I hoe I've day I'll be able to calm other people when the feel like this at first. Thank you. Your words have helped me. I know it is new for you too, and I wish you the very best. I hope you can ride your bike and enjoy the day Sue.
That's ok. I do the facade as well. You aren't been dramatic it's a diagnosis same as any other that's what I believe. You just need some emotional support atm. You'll have positive spells and low ones, I'm bit better today then rubbish another day. Anxiety and depression makes things harder to cope with there's nothing really left for a crisis.I never knew anything existed like this shows what I know last time I checked it no way was I like this. I think once you get your ointment you'll feel a lot better. Did you see specialist about it or dr? You could make a list of questions you need to ask.
I just saw my regular doctor. She seemed to know immediately and said it was quite easy to tell. I was getting a yearly exam and Pap smear. Like you, I had no idea it even existed or that I had a problem. I read stress may have a lot to do with it as well. Who knows. I will do that ...make a list of questions for her. She will likely send me to a gyno but I'll have to get a new one with my insurance changes. Our insurance system is truly terrible. I hate losing the doctors I trust because of that. I just pray I'll find one who knows about this and Is good with nervous patients. I hope your biopsy went well and is healing. I'll be praying you'll get good news.
Wow you had good dr, that's good. Yeah you need to mention you're anxious if you get referred. I didn't have to my leg shaking about twelve inches made it obvious lol it always does that, I can't seem to stop it.
Maybe though your dr will just deal with it for now with ointment and then see how you go for now if it clears or improves then that's good,
Well that made me chuckle about your leg because I understand it so well. Believe me, I needed a light moment. I'm making myself sick with worry though I know it won't help. I wish I could control that better!!! Yes, I hope my doctor seems to know a lot about it when I see her again for a consult on Wed. Thank you so much. This site and you and other responders have saved me over this holiday.
Hi Willow, We have all been there and done our share of crying. I haven't yet seen anyone mention sodium borate (borax) in this discussion. Look up "An Experiment With Borax). I should also mention that many of us have found relief & healing without using steriods. Consider baking soda baths, the borax treatment, emu, coconut and other oils, wearing cotton panties, avoiding wheat, dairy & sugar, etc. There are many great tips on here. Don't dispair! If you get in the habbit of doing these things, you will see major improvements and will begin to feel normal again. Examine yourself -taking pictures will help you see and appreciate the positive changes. I was first diagosed last spring and now I'm like a new person. Will probably alway need to do the baking soda, etc, but it's not that difficult and becomes 2nd nature after a while.
Thank you. I'm beginning to adjust to the shock. Today I only cried twice so that's a start!!! I did see the borax thread and started it. It honestly has helped SO much. I use it several times a day, along with the over the counter very mild steroid she told me to get. Bought some aquaphor today and have used coconut oil too. Also have baking soda. Bad thing I won't really know which worked best because in my fear, I'm sort of doing them all. I did take pics ( something I never thought I would be doing!!!) and the difference so far is amazing.
I see my gp on Thursday and am anxious to see what she says. I really don't want to go through a biopsy if I don't have to. It seems some people here didn't. Do you not use steroids at all Anna? When I watched the video on here, the specialist said to never stop them to avoid cancer. That's scary. I would rather not use them but I'm still just unsure.
I appreciate your response so much. So glad to hear you are doing so well! Gives me hope.
Willow, Was the coconut oil ok? Any did effects? It's just I only have to read someone with side effects and I don't do something. I got organic and for babies but it seems so hard, Is it all hard and do you soften it? I suppose I can't get enough on my finger and I'm wondering is it the wrong thing. Then I'm worried having never put anything there about a reaction. Do you put it on the white and not white areas? I have stopped wearing pads. When I think about it without knowing any better, I was wearing pads whilst biking thinking it was protection from cycling but maybe it got too hot etc there. I do feel cooler now I've stopped wearing them. It's just high maintenance all this isn't it.
Sorry dam iPad I meant side effects.
Forgot. If you can get away with biopsy try. I'm still sore with mine.