Not the Christmas gift I wanted...

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.

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.

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.  

Hi Willow,

So glad you are seeing results already!  I guess it really doesn't matter which treatment (borax, baking soda, etc.) works, since I continue to use them all, and I think they all work together.  I haven't used steroids at all.  I had a skin issue on my leg a year ago and the doctor prescribed a steroid, the same that is used for LS.  Anyway, after a week or so, I started noticing significant hair loss (on my head) and looked up the side effects.  Turns out hair loss can be a side effect. So I skipped the steroids and searched for natural ways to tackle the LS.  Baking soda baths were a huge help, then Alistar came out with her borax treatment and my improvement skyrocketed.  All the white areas are gone, and almost all of the fusing has released. Every time I examine myself, I'm shocked at the amazing progress and healing.

I never had a biopsy, since my doctor diagnosed me visually.  If you are seeing improvement, I question if you really need to go through the pain of a biopsy.

Also, speaking of that video, the one with Drs Goldstein & Runels, I'm not really convinced we should give it such importance.  If they really knew all there is to know about LS, why have they not suggested all the things we have found here that have been a godsend?  It seems to be a bit of scare tactics, showing the worst possible photos, plus they are working on a procedure that they will eventually market.  If my vulva is healing and returning to normal, then it seems to me any risk of cancer has dropped without the use of steroids.

Anna...thank you for addressing the video. It was bothering me a little.  You are so right...he was also hoping for monies to do research for a product...you're so right.   Not that he isn't  truly dedicated,  and  gave great information, but the way he stressed the steroids and said the only patient he ever saw with cancer was one who stopped seeing him and using steroids,  stuck with me.   It all depends on the person and their individual case, I would think.  I've seen other places on the internet that mentioned no need for a biopsy in some cases as well and that sometimes they don't heal easily.  So...I  hope tomorrow my doctor  doesn't sugggest that.  (Obviously, if something looks suspicious, that would be different)   I'm honestly a little worn out with thinking about all of this over the last week.  I miss not having to worry about it truly.  But, I am SO grateful for you and other posters here and this great place for sharing.  You can't just talk to anyone about this and that makes you feel lonely on top of being frightened.  Thank you all so much for being so open with this newbie.  It has truly saved me.   

Hi Willow, you are very welcome.  You are right, this is not the kind of thing you can discuss with friends and family, so the others on here who are sharing this challenge have made it so much easier to work through and realize we are not alone.  The worry and fear you now have will eventually subside as you see your progress, and begin to feel normal again, so hang in there.  It will get better!  Best of luck with your doctor's appointment.