Hi EB

Reading your link makes me so sad because you are so young to have LS. I am nearly 60 and have been diagnosed also 3 month ago. Looking back I realise I have had it for much longer - possibly 10 years. I have been back and forth to the doctors over the years only to be told I had thrush. Like you I have never had white spots. When I had sex with my husband the pain was ridiculous. I felt as though there were tiny paper cuts on my vulva - which was bright red. I wash with Hyromol which calms the burn and itching down for a little while. The steroid cream was great at first but not after continuous use. I have just read that maybe a diary/gluten free diet may work? Here is hoping as I will try anything. I will come back and let you know. I hope the new Perrins continues to work. Take care Rob X

I just found out I have LS I'm scared!
don't know how long I have had it?

I know this thread is kind of old but hopefully you get this...Don't feel alone! I am also struggling with LS. My journey has been quite a mystery and very frustrating. I was diagnosed in 2005 at age 15 by a pathology test the dr had sent out and my parents and I were never informed! So when symptoms started gradually in 2013 both my GYN at the time and I had no clue where to start. They told me I had razor irritation and sent me home. A year in a half later I started having painful sex, small tears and irritation so I visited a new Dr. for answers. I coincidently had a yeast infection and the dr seemed more concerned with that but she did mention to me the LS she saw in my chart from 2005. This was the first I had ever heard of LS. After researching online, a lot of minor symptoms I'd had over the years made sense now... I realized it wasn't normal to have the pain we deal with. Anyways, the Gyno I saw didn't explain much and I was left with more questions and concerns than answers. Well 8 months later and I'm suffering from the most severe symptoms I've had yet. My perineum and vulva on one side swelled up huge and was extremely painful all of a sudden a few days after having sex. I went back to the GYNO and the NP called the Dr. In to look because she didn't know what she was looking at. The Dr. Came in and said "I've never seen this before", can you imagine how scary that was?? they prescribed me clobetosol but didn't provide any further details, advice or suggestions. I felt on my own once again. After one day of clobetosol cream my sensitive, sore, thinning skin split into a bunch of tears and felt worse than ever. I cried and cried and finally my dad advised me to call my dermatologist. My derm referred me to a specialist in Vulvar dermatology but my appt is 2 weeks away! So now I'm just waiting for the cuts to heal and get back to a somewhat normal life. It definitely scares me my boyfriend won't want to deal with this but he's being extremely supportive. I just hope and pray I won't have worsening symptoms as I get older because I'm only 26 and haven't had children yet or marriage. Ive also noticed the shrinking of my outer vaginal lips which is scary. Hopefully I'll be able to use the steroid cream again once the tears heal. It seems to me from what I've read online that LS is something we were born with and is genetic, however flares with certain hormonal changes which is why menopause triggers it so I'm wondering if the birth control I'm on could be a factor and is messing my hormone levels up. I've also heard friction from sex could be a trigger. There's just so many possibilities I could write for days. Let me know if anyone has any relief or advice!