Hi Sye. Yes I've had no problem with the coconut oil. It gets hard naturally when cold but if you hold it in your hand a moment it will totally soften. I put it everywhere because I read it wS important to keep the whole are moisturized. Of course, like you, I'm new at this. I also bought some aquaphor cream yesterday. I like it. It's like Vaseline but much better. Have you tried the borax yet?? I started that via the info in a thread here and it has helped amazingly Sue. Helped itching, soreness, and most of my white is going away??? Look for the thread ... Experiment with Borax. The lady who started it seems to have a very caring husband, and he researched this. I've since been reading about it on other sites. It sounds strange but does not sting and I was scared enough to try anything!!
How long before you get your biopsy results? maybe you ask on that thread if anyone had a biopsy and used the borax/water to help heal.
Best to you. I see my doctor tomorrow. Nervous but I need a consult.
Oh I've seen other people say not to wear pads. I've not. I also read not to use pads or band aids OVER steroid cream because it can cause the body to absorb even more of it. And in the genital area, it absorbs more readily anyway. I've been researching so much ; I hope I don't sound as though I know a lot though. It's all new to me but I believe in being our own advocates too since doctors seem to rush you through and tell you so little. Sometimes you later learn they didn't know either! I've been simply wearing cotton undies and loose pants for now. i will admit seeing some white go away with the borax dips helped me mentally. I know there is more to it than that. I'm afraid not to use some steroid thus far. Sorry you are still so sore. Let me know if you try the borax thing.
Willow, that must be good the white going. I agree we have to look out for number one as to everyone else we are number two except of course close family and good friends. I think people with some disease or ailment end up know as much as the dr we see, I've no idea what borax is I've googled it before but in uk I don't know what this comes under name wise, if anyone reading knows it's uk name or where you get it. I've no bath just shower so I don't know how it would work in shower other than sitting in a bowl lol. I'm so frightened of putting stuff down there with skin being sensitive that's all. I don't get how we use steroid to keep it at bay and some don't but alternatives keep it at bay. My results are about three weeks so another week. Any information I get I will share and I'll be wondering how you get on if we share knowledge we learn a lot. The area was yellow bruised but the bruising is fading now. I don't think I should put oil on the stitches though it's hard atm putting stuff on avoiding other areas, Imagine having no internet we would know nothing, you sound more positive.
I agree. Without the internet I would feel so alone with this diagnosis. It's not one you can talk to people about. It would be so much more frightening. I think without this site, I would be a basket case by now. I'm still not good, won't lie, but knowledge is power and I believe having a group of people so willing to share is healing in itself.
I do think you would have to order the borax. I read of many others in that thread who did. I would be careful too until you are healed from biopsy but I'm thinking maybe others on that thread went through biopsy too and may have advice about that and borax, plus how to get it there.
Oh and I only make a solution in a cup. ( that thread tells you how). It's very diluted and the consistency of water. I dab it on with a cloth. That's all. Let it dry. Then I put a cream on. I do it after I use the restroom so it's cleansing as well. It does not burn. Well, a little tingle on a few spots at first but the next day , nothing!
It sounds like the biopsy must have been terrible. I'm so sorry. My doctor mentioned it so tomorrow she may send be for one. I hope not.
I'm still a little confused about the fusing. Not sure how far mine has gone but I want to avoid any more damage. I'm only using the mild cortisone cream now. Maybe she wanted to see what it would do before giving me a biopsy etc. ugh. Yes, I'll keep you posted and you too please. If I could attach a link to the borax thread I would. Read it all . It may give you some peace and hope. You can tell I'm having a more positive hour.!!! It changes constantly when I think of this. Somehow, I feel less of a woman. Is that silly. But it's true.
Wow sorry that was so long. It's all that's on my mind so I'm too wordy.
I will be thinking of you at the dr, remember your questions and ask about the fusing. Yeah I have the up and down like you I had one at dinner out of the blue, sometimes it's when we aren't as distracted maybe. Never heard of borax I have sodium one so I'll have a bath when away at the weekend with it. I did put some coconut oil on this afternoon melted it a bit. It's just about spending more time on ourselves isn't it. Yes I think the Drs only know proven ways ie ointment and biopsy. Nice to chat to likewise people otherwise I would be like you very isolated.
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.
Hi willow, I to was diagnosed just three days before Christmas ,
Bin really worried , I'm using dermovate ointment twice a day,
Even starting this treatment,it's spread to my anus and all round my bottom,
Bottom,I haven't left the house in a couple of days ,it's to painful
To walk,
I hope get some relief soon.
Hi Lorraine excuse me for butting in but I see that you have recently been diagnosed with LS and I am sorry about that. It is a particularly heinous condition but with careful management I am sure can be controlled I too have LS affecting my bottom. I was diagnosed 16 years ago and so very much has been trial, error and remission. Long periods of remission have helped but when it raises its ugly symptoms I still get upset and start questioning everything. I do take Fybogel daily (a naturel fibre enhanced powder mixed with water to drink ) it keeps my stools soft so as not to split my fragile anus unnecessarily. I wish you a HaPpY Healthy New Year in spite of LS. X
Good morning thank you for your kind words and your not butting
In at all,
We need all the help we can get, do you ever get many infection s
in both areas?,
I wish you a very happy and healthy new year ,
Try bathing with bicarbonate of soda, mixed with water..... Just put a heaped teaspoon of bicarb in an egg cup full of warm water, dip in a cotton wood pad and dab it on..... Instant relief for me......
xx
Thank you that's great, will do,
I have another infection,went drs today,
She has taken swobs,
I could of bust into tears this morning,
But, I guess if the antibiotics work I really hope I'll start feeling a little
Better,,,,