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

    Im 26 and also been told the same by my gyni. Had it for close to 4 years now and going through a particular bad patch right now. My advice to you is stay away from the internet! Im currently looking into diet changes to see if that makes a difference for me. I have seen many people say emuaid is good but that isnt available to me in the uk. Best of luck on your lichen journey! ,❤

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    • Posted

      I have been using emu oil from Amazon and cocunut oil from aldi they both are really good. I have got to stop googling about it it's driving me crazy and feeding my anxiety. It's awful to have at any age but Soo young I keep thinking what have I done to cause it. Hope everything works out ok for you xx

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  • Posted

    I too am a very anxious about health issues and my LS I have googled the life out of my pc ,convinced myself I have cancer down there if anyone can help I'd like advice too. I am Dr phobic too so daren't go

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    • Posted

      Hi my gyni told me the cancer risk is very minimal, she said she's sees 16 people a month with LS and she's never seen cancer in LS patients so try not to worry although ino it's easier said than done xx

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  • Posted

    I am 40 and was diagnosed 2 months ago.  I’ve had anxiety for 20 years.  I completely feel for you.  I feel like I’ll never be the same sad 
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    • Posted

      I first suffered after my nan passed when i was going through a tough time with anxiety and panic attacks. I just assumed it was a result of stress and would go away i cant believe 4 years later and im still suffering sad
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  • Posted

    I was diagnosed at 27.  I, too, felt and still feel isolated. I don’t know anyone with this condition other than on this forum. It will get better. 
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    • Posted

      Yeah when I told my family etc everyone is like eh I've never heard of it! So makes you feel worse in a way xx

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    • Posted

      Yeah they try to understand but if you don’t have this, you have no idea what a flare up really feels like. I’ve had this for about 5 years and only get a flare up like once a year 
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    • Posted

      What do you think prevents big flare ups? Im in the middle of my worst flare up in such a long time. So many disrupted sleeps and itching constantly. I wonder if its because i have been out of routine as ive just finished uni so not working regularly etc not eating in as much of a routine or as well. I dont know sad just feel so emotional!!
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    • Posted

      Have you changed anything that you can pinpoint? I was diagnosed  10 weeks ago ( I am 47), still get my period every 28 days. I hv cut out sugar, most carbs, I eat a low oxalate diet; no chocolate, no nuts or seeds, no soy, no whole grains, limited dark, leafy greens. 

      I noticed if I eat  5 M& M’s  or hv a soft pretzel I am itchy the next day.  Otherwise my LS is under control. I am going to try Gluten-free and see if that helps. 

      There has to be a reason that you just started to flare, you hv to find out what it is. Coukd be diet or stress.

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    • Posted

      Honestly I have no idea what prevents them to what starts them up. Stress is a huge factor but who doesn’t have stress, right? I have to say I use Aquaphor everyday in the morning and sometimes at night if I feel quite irritated. I never wear underwear without Aquaphor. Too much friction causes issues. I also don’t have the classic itch that so many have, mine feels more like fire and inflammation. Sitting on a match is how I describe it to people. 
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    • Posted

      Hi Karen, that's really good to know. I'm 32 and I just found out I may have LS, even though I haven't really noticed any symptoms... I've been really stressed but if you have had success with diet changes, I won't be too upset. The doctor said it's very treatable and not to worry, but everything on the internet is so terrifying.

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  • Posted

    Hi Tracey I'm 45 and was diagnosed 5 years ago but had several misdiagnoses for quite a few years before that.  I was told exactly the same how rare it is at younger than menopause age.  I find the internet useful for self treatment and have taken what the experts say and used it to my advantage.  Some days I manage it and other days I don't at all.  I also have urethral syndrome possibly caused by LS but of course the consultants won't say either way !  You can learn to live with it, after all, we have no choice really.  Just try to listen to your body and do what suits you.  And dont' forget you can order stuff from Amazon dot com.  The Emu Oil just made my skin burn so I can't use it but coconut oil helps massively.  Wishing you all the best - you are not alone.  

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