What is a "flare up" for you?
Posted , 8 users are following.
My doctor didn't describe LS very clearly to me in my first "diagnosis". The cream she gave me didn't provide relief as others on here describe. She gave me mometasone with little direction, I don't even know if I'm applying it properly - and now I've not been able to use it at all for 5 weeks before my biopsy on the 8th.
My main question is... When you all say you're having a "flare up" - is that just itching? Visible scarring/whitening that starts to happen? What does a flare up mean to you personally? I'm just trying to get a more clear understanding of how to manage the itching and what alleviates that. I have no visible signs of LS that me or my doctors can find, I just have insane itching that they have failed to diagnose and cure. I'm just not even sure what the steroid is trying to relieve. thank you all in advance and sorry I've posted a few times in the last few days!
0 likes, 35 replies
lynn_78641 hannah19230
Posted
the steroid reduces inflammation. the inflammation is occuring outside and inside. typically if the skin is white it means there is active auto immune situation going on- aka a flare up. for me its when the skin becomes pearly white and i become very itchy. do be careful with steroid use. not too much and not too often- always wash your hands with soap and dry them after application. this is really important. lichen sclerosis as of 2012 has officially been classified as an auto immune disease so it can go into remission but it doesnt disappear. ive got an advanced version which sucks! had it for two decades at least. another treatment for itching is 3-4 tsp of baking soda in a warm bathtub or you can also use borax which is naturally occuring. same amount. these will make the skin softer and more alkaline and can relieve itchiness. both baking soda (sodium bicarbonate) and borax are safe to use- the key is to try not to scratch as scratching can cause the skin to break (Ls patients have more breakable skin especially when they use steroid cream) and then scarring can occur. the scarring is what you want to avoid- if you feel itchy and you have nothing with you you can run cold water over the skin in the bathroom and tap dry. always use 100% cotton underwear, no skin tight leggings if possible and keep it aerated at night so no undies! avoid sugar and dairy and gluten or at least sugar.. hope this is helpful.
hannah19230 lynn_78641
Posted
this is very helpful, thank you. You mentioned yours is advanced, is that due to delayed treatment/diagnosis? or just the progression over the years?
thank you so much for the information and tips
xo
hannah
Betilda67 hannah19230
Posted
Hi Hannah,
I saw your message and I thought that I would answer you. Several years ago when I lived in NW FL I was diagnosed with LS. I didn't have anything except intense itching. It was miserable especially in the evening. Nothing that the doctor prescribed or I tried on my own worked. I had a friend that was in her 70's and she told me that she used to get extreme itching also. She said that it was so extreme that she used Rubbing Alcohol on it. I know that is really drastic, but I reached the point that I tried it. What I did was take a white face cloth and wet it with the Alcohol then press it against my vagina where the severe itching was. It hurt really bad for a few minutes, but after a little bit it quit hurting and quit itching. It didn't bother me again for a month or so and when it did I used the Alcohol again and same result. I think that I only had to do that two times and I have NEVER had the intense itching again. I don't know if that would work for anyone else or even if anyone is brave enough to try it. I am just saying what helped me. It was worth the short discomfort to get that horrible itching to stop.
Good luck and I hope that you find something to help you.
hannah19230 Betilda67
Posted
hi!
wow, this is interesting. so since you did this, you've had no itching or signs of LS? Do you still have LS?
thank you!
beverly52803 hannah19230
Posted
I wonder if itching and itching only could be an allergic reaction rather than LS? You don't mention what kind of doctor you've seen. Was it a dermatologist or gynecologist? I just googled the steroid you are using (assume you've done so already) and it is a medium strength steroid often used for allergies.
If I had to wait 5 weeks with nothing offered for relief I would use cold compresses and attempt to remove foods from my diet that most commonly cause allergic reactions. You can google that also. Can't supply a link because the moderator will block the post unfortunately.
Many of us who have been diagnosed with LS avoid sugar, gluten, dairy, eggs, etc. You might be able to narrow down something specific in your case.
I don't get itching and didn't know I had a problem till examined by a gyn who saw visual symptoms. Good luck.
lynn_78641 hannah19230
Posted
combination of both. i was diagnosed in 2003 after a biopsy from a white patch. i treated it properly with steroid (all there was at the time) for a few years but it seemed to go into remission. so i assumed it went away.7 years went by with no symptoms and then they started returning. i looked down to see that my anatomy was fusing and changing so i started treating again. for my steroids only temporarily treat the area. they dont slow it down at all. for me its been lose lose with this condition. i just tested positive for lyme so now i know Ls often is triggered by lyme. i must have gotten the bacteria in my teens. for me i need to treat the lyme and have been informed the symptoms will regress. praying. the best test to get are not standard ones. pm me anyone if you need suggestions of where to test. many people with lyme have LS. good luck and hope for you its better
hannah19230 lynn_78641
Posted
Hi Lynn -
I'm so sorry to hear that, so you've had no relief or remission since it came back? How long did you have symptoms before you started treating it again? Or did the fusing start again with no symptoms?
Thank you xo
Guest lynn_78641
Posted
Do they have any idea when you contracted the Lyme disease? I'm thinking it could be a trigger for LS? Since LS is AI, the med journals I've read suggest there are triggers that spur it on.
lynn_78641 Guest
Posted
egg biscuit - i havent asked but i will see if there is any way to tell- if i look at when i got LS then its probably early 2000's, but could also be something i got as a teenager or even as a child in camp. it can be transmitted sexually, which reallt sucks! so i could have gotten it from or given it to my hubby or someone before him. i was anxious as a teen and lyme can cause anxiety- there is so much im learning about it, its fascinating. lyme mimics LS and can trigger it, it doesnt mean everyone with LS has it, but its apparently not too uncommon. lyme causes an auto immune reaction in the body if the the bacteria is not attacked early on. so anyone with fibromyalgia, chronic fatigue, MS and many others would benefit by testing as lyme is the great imitator. the standard lyme tests are not sensitive enough to detect because the bacteria doesnt live in the blood, but rather in the tissue. so a very sensitive test is needed. auto immune is one of the descriptions of the 3rd stage of lyme - my hope is to treat the bacteria of lyme gradually and the symptoms of LS go into remission. when i posted all my conditions in a lyme group, many people said "oh those are all classic symtoms of lyme, and treating it will help to put symptoms into remission. so im keeping my chin up!
beverly52803 lynn_78641
Posted
lynn, I've been reading conflicting theories on Lyme. Did your doctor say yes, a very remote chance or proven cases of sexual transmission?
I know they have found it in semen and vaginal fluid, but thought there weren't proven cases.
When you say lyme mimics LS, you mean people with lyme have all the symptoms of LS, but it is not LS? How would they prove that...via biopsies? Is what you have lyme mimicking LS? Did you have a biopsy where lyme was found instead of LS?
Re anxiety, there are an awful lot of anxious people around. Having LS is certainly starting to make me somewhat anxious, but that's from knowing I have a problem I can't figure out how to control.
Best of luck to you in fighting whatever you have.
Guest lynn_78641
Posted
I would get immediate, strong treatment for the Lyme as that can have long term damage, maybe already has. Let us know what drugs they give you for the Lyme and anything else that might help us all put these pieces together. Thanks and blessings,
biscuit
hannah19230
Posted
So, I went to my secondary gyno today and told her about the possible LS diagnosis from the specialist. She examined me and said "you do not have LS" - she repeated it many times to me and made it sound like there is no chance that is what is causing my symptoms. I am relieved, but also confused as many of you have expressed no visible signs of whitening/fusing, but itching. Honestly not sure what to do from here. She still doesn't have an explanation for my symptoms other than stress 😕
hannah19230
Posted
alright, i honestly want to see your thoughts... do any of you see signs of LS in any of these photos?
Guest hannah19230
Posted
Hannah,
I don't see LS or evidence of Lyme in any of those photos, at least the way the camera angle shows it.
hannah19230
Posted
Alright - I went to a very sweet, empathetic doctor on Tuesday. I hadn't seen him before, but he mentioned being well versed in LS, so I just wanted his opinion. He said my vulva and vagina look perfect inside and out, but as I listed my symptoms, he mentioned LS as well. Since I've bascially tried everything, and can't try Clob until after my potential biopsy next Wed, he wrote me a script for a Valium cream. I went to a special pharmacy where they literally made it for me. Super random and not something I had heard of before. I just got the cream today and am waiting to hear from him on clarification on how to use it. Has anyone tried this?
The last two options I've been given to try are the Clob and then Amitriptyline to see if this is a nerve-ending/nerve flare issue.
Blehhhhh I don't know if I'll ever know if its LS until I show white patching...???
So confusing. I hadn't had a real breakdown over this, but I cried for hours after seeing him. I was so positive and hopeful that day, and he came in so nice and full of good-vibes, I was just hoping for a miracle. Oh, well. I'll update after next week, I'm sure this is all very confusing for anyone to follow. lol
Thanks everyone ❤️