My Dr. thinks I may have LS. My vulva burns and is sore. However, there is no itching at all. Everything I have read regarding LS states that itching is a main symptom. Can anyone relate to this? Thanks.
HI
yes definately, I am the same as you no itching but sore and red with blistering and ulceration at the fourcette area either side. Sometimes I get a horrid burning inside for no reason either. Do you use a good moisturiser? as I think this does help. Also last week I was sore and had to use the dermovate the reason being some leggings where the seam touched too much. I cant have a bath anymore as it causes terrible soreness. I replied just to reassure you x
i think that LS can present in so many different ways and each case is different for each person which is why it is notoriously quite hard to diagnose. although mine did first begin with an itch that i first put down to thrush, long term itching is not really my main symptom - soreness, redness, burning, skin tearing after sex are my main gripes with the occasional itchy spell around the time of my menstrual cycle. so i recommend you have a biopsy to confirm xx
I do recall at the very beginning an itch only a small area and put thrush cream there, it didnt work though so maybe that was the start of it. I had three biopsies which came back inconclusive, very common with L S so biopsy doesnt always show it.
My main symptoms were pain, redness and burning when peeing. very little itching. I DO AGREE that everyone's symptoms are a little different. I had a biopsy done on 6 areas and all 6 came back positive for LS. Between dietary changes, using Emuaid and staying moisturized with coconut oil or v- magic and using Dr. prescribed Clob , I am finally in remission ( no active signs of disease). As per NANCY B's research and report, I take 18 vitamin/ mineral supplements to support my autoimmune system and hv my life back- there are architectural changes that will never come back and loss of sensation, but I am not a slave to LS anymore. GOOD LUCK TO YOU!
ah yes thats unfortunate it came back inconclusive but i agree its common from reading others experiences on here, 3 biopsies poor you! i hated the biospy
have you had any treatment for LS yet? does it improve your symtpoms? i found moisturising and washing with a prescribed emolient has improved mine alongside the steroid xx
karen, why would they have done so many biopsies? Did you have various symptoms on 6 parts of your body that weren't typical of LS? Sounds very painful. My gyn did a careful examination and saw enough to assure her it was though I was having no pain or redness. I had a fleeting inner vaginal itch, but that responded well to flagyl so am pretty sure it was bacterial. Maybe LS (or AV which I also have) makes us more susceptible to bacteria. I don't know. The itch finally resolved in the fall so possibly heat had something to do with it. Do you plan to continue taking all those supplements?
Thank you Sue for your quick reply.
Hi Maryann, I have never had the itching but burning...wow and it is so bad inside and out I cannot sit, I have to use a donut and carry it everywhere I go. I have many talks with my GYN because I do not have any white spots or tearing. I do not think mine is LS but she will not do any more testing.
If she will not do anymore testing, go to another DR! There is no reason to suffer when there is help available! I let LS run my life for 5 months, now I HARDLY ever think about it. It took me 5 months to get into one of the top LS specialists in HOUSTON, Tx , USA- DR VAYAS, but it was worth it and she saved me! Please go to another DR! GOD bless! Karen
My LS has only ever burned . When having a flareup it feels like someone is sticking a match on my genitals every 30 seconds.
Hope this helps.
After testing me for every STD in the book ( pretty funny since I was a virgin when I married 25 years ago) - initially thought it was HERPES because it was so painful, she took 6 samples from labia minora, majora, perineum, up near clit and near anal hole- all 6 positive for LS. Unfortunately she left practice and soent 6 werks setting up her new office, so I had no treatment for 6 weeks, so I read everything I could and treated myself with EMUAID, PERRINS and a moisture barrier cream to heal the ulcerated areas. Was finally given CLOB and that put disease in remission ( with dietary changes and supplements). Yes, I will continue to take supplements to build and maintain my immune system. THESE INCLUDE VIT D3, K2, B12, VIT A, ZINC, SELENIUM, TUMERIC, GLUTAMINE, MAGNESIUM, CALCIUM, VIT C, BORON, A multi- VITAMIN, Omega 3, METHYLFOLATE, PEPZIN - GI ALOE vera JUICE AND APPLE CIDER VINEGAR. I buy most of them on AMAZON WITH FREE SHIPPING , and believe it is all tied to leaky gut syndrome, so I AM HEALING MY GUT!
karen, once diagnosed how were you treated?
HI Emmy,
I seem to be like you I use Yes moitsturiser and clob for keeping it under control during a flare up. The biopsies were horrible a very personal area to have them done isnt it. Im post meno so I think that caused it also I had bicycle injuries down there and then L S set in. x
same here changes of structure to the minora that wont come back x
emmy, what is the prescribed emollient you use to wash? My gyn gave me a handout that said simply no soap.
Maybe you could send it via PM so it won't get blocked? thanks
will post and message u just to be sure.
the emolient i have been prescribed to wash with is called cetraben and it comes in a big pump bottle so i just keep mine in the shower and wash with it but it can be used throughout the day as a moisturiser too, this one works for me, its soothing and doesnt feel like its been applied whereas others have felt tingly or unomfortable
i was given a prescription for CLOBASET not much help with it then we tried vegasam ( I think) then we tried another cream, then lydacaine. She us genuinely sympathic and has said they try this and that and some respond to this abd some respond to that I have yet to find that MAGIC POTION thx for your interest KAREN BY the way what was it that you were treated with that helped you.
Thanks Karen. Happy to hear that you are doing so well.