35 years old and have LS

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Hi I'm just looking for someone a similar age to me who has vulva LS, I was diagnosed around 6 wks ago , treatment going well so far but I feel kinda isolated! I don't know another single person with this condition and my gynaecologist said it doesn't usually happen to people my age! I also suffer with health anxiety so as you can imagine I googling and worrying myself sick and I'm also worried that I'll get some other autoimmune disease !! Just need someone to talk too xx

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  • Posted

    Hi Tracey, I was diagnosed at the age of 33, 15 years ago. I probably already had it for a few years. I feel you. I also have had anxiety my whole life. It seems to be autoimmune- I also have borderline hashimotos which is a thyroid/hormone imbalance - sometimes it seems a hormone imbalance plays a big part. When I went to the gyno, i think it was just a standard check up and thats when she noticed my skin down there was very white. Then we did the biopsy and it came back positive for LS. It’s a tough condition in that its not widely recognized and steroid cream, according to western docs, is the only solution, which many in this group believes is not true. My recommendation is stick with us, we are here to support you, listen to you vent and give you virtual hugs. In the meantime I recommend cutting out all processed foods, white sugar and conventional dairy. If you eat dairy, try to eat it very rarely, and focus on probiotic, organic forms of it like grass fed yogurt, kefir etc (goat dairy is usually better than cow if you have to go dairy). I would also recommend imagining anything that turns into sugar in your body after its digested (white rice, pasta, bread, juices) should be avoided. If you can try no gluten this will greatly help. Hang in there. You are definitely NOT alone. 
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    • Posted

      Hi Lynn, thanks for your advice I will definitely take it on board my diet is terrible I must admitt. Already I don't feel Soo alone knowing there are other people similar ages who have it , although obviously I don't wish it on them. Thanks for your support xx

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  • Posted

    Hi! I’m sorry you suffer from this. You’re at the right place for support. I think I had LS in my anal area as a teenager already. (Undiagnosed) Eventually it moved to my vulva. I was diagnosed a few years ago after suffering for years. Am now 47).   I freaked out too when I looked at pictures and researched it. I have health anxiety and I sort of feel sort for awhile after diagnosis. I actually find the condition relatively easy to manage now that I have steroid and some natural products. Read through the threads. This site has helped me immensely !! Incredibly!! There were two ladies that were so consoling on this site. Hanny was one of them and she’s still on here. I went almost gluten free sometime ago and my LS basically disappeared but I didn’t stick with it! 

    Lots of support here.  You’re not alone! 

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    • Posted

      Very helpful for me is EMUAID and emu oil. Some find coconut oil helpful. It actually irritates my skin but many seem to find it beneficial. 
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  • Posted

    I am 62 and was diagnosed like two years ago and mine started very mildly found by a biopsy!  Unfortunately I have now had a horrible flare up that I can’t seem to control.  I am on clobetosol but you will hear that you have to keep trying other products to find relief at times. Emuaid has helped me also found online but going to try yes vm that someone mentioned on amazon.
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  • Posted

    Hi Tracey, I’m going on 33 and diagnosed only a few weeks ago. I was turned away twice over the past year when symptoms got really bad, the first was told I had thrush (when I didn’t), and the second was told I was too young to have LS. When I couldn’t handle the discomfort anymore I was finally referred to a dermatologist where I was correctly diagnosed.  At this point I had googled like no tomorrow and brought myself to tears almost daily at what I was seeing and reading... all the things that ‘might’ be happening, and what ‘might’ happen in the future as I get older. I very quickly realised that I was fretting over what ‘might’ happen... I know that google often shows us the worst case scenario. I think we should actually count ourselves lucky that we have been diagnosed early.  There’s plenty of women out there who have probably had LS for years and are only diagnosed later in life, when things may have already worsened; and to them my heart goes out. I think it’s important for us to try to do everything we can now, to improve our physical and mental wellbeing... so that we can get on top of this horrible disease. This forums been great for not only learning useful tips, but also for the support, and the knowing that we’re not alone in this. Thank you ladies! (and gents out there!).  
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  • Posted

    There is a lot more women that has ls with all different ages it's a terrible disease and I hate it. Never have any relief hardly from the burning

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  • Posted

    Hi, I’m 47 and diagnosed with vulva LS 3 years ago. I have prescription for Dermovate steroid cream which calms soreness and itching plus white dots. I also tried Emuaid on some cotton wool but stung for few seconds when applied but then gave relief all day! I find Epsom salt baths soothing but be careful on open sores. Hang in there. Good and bad days. This chat group so useful as I heard about Emuaid through and got done on Amazon! X
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  • Posted

    Thank you all for replying. It seems that it's a very misunderstood illness by Drs etc, my gynaecologist said that they think it's autoimmune but there not really sure. She did also say she treats a 4 year old girl , poor Lil thing I thought. One day at a time for us all x

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  • Posted

    Hey Tracy,

    I was diagnosed at 22, I am now 25 and I totally feel your pain. I felt like my femininity was stripped away and was so angry that I can’t have sex with my husband without I being planned and having “supplies.” I’m starting to accept that I’ll have this forever. But you’re not alone! Finally after two years of being diagnosed I found a doctor that knew about LS and didn’t look at me like I was an alien. That helped me feel a lot better. Good luck!!

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