Any other young ladies out there with LS ? 19 and need people to talk to who understand

Posted , 12 users are following.

Hi all, I've been struggling with the repercussions (especially sexually) of LS for over a year now. I'm 19 and feel totally alone, angry and frustrated. No one that I've met my age has even heard of LS and I was wondering if there any other people out there similar in age who understand.

2 likes, 13 replies

13 Replies

  • Posted

    Hi i was diagnosed at 19 and had symptoms since i was 18. Im 21 now and coping well. I had problems with sex but recently had a talk with my boyfriend and it helped, i think the pain i was having was psychological due to me expecting problems when there really arent that many. I think alot of young people are getting LS lately so dont feel alone
  • Posted

    Hi - I was diagnosed in my fifties and not one of my friends had ever heard of it either. It's hard not to think why me. I've managed to get to a point where it is under control. The important thing for me was to de stress my life, cut out sugar and spritz with bi carb/water after going to loo. Paw paw ointment at night. Vitamen E in the morning. This forum is wonderful for connecting to other people who understand.  Just yell out if you need more tips. Hope you have success with what you are doing 😊

    • Posted

      Second time I heard paw paw ointment. Is it better that Aquaphor ointment?
  • Posted

    Hi Amy, I was diagnosed at 37 but had symptoms for about 3 years before proper diagnosis.

    I have had 2 stem cell operations and 3 lazer treatments in the last 2 years...so success but definitely not cured. There is a wealth of support and advice on this group so you in the right place!

    It does seem that LS is either being diagnosed more or just more women are coming forward about it...either way you are definitely not alone!!! It is a difficult and private condition to explain to family and friends and that is why being on a group who understand and support you is so important, especially if you feel you are not coping physically or mentally.

    Sands xxx

    • Posted

      Can you please tell us about your stem cell operations and who performed it?
  • Posted

    Hi there.  I would feel the same as you.  You poor thing.  Well, I am over double your age and I got LS a year ago.  It comes and goes but for me the only thing that works is Dermavate Cream.  My nurse, not even my doctor knew about LS, only my private gynae!!  I only heard about LS in my 40's. None of my friends have it or if they do, it's rather personal and they haven't told me.  I do find that if I am stressed it flairs up.  It does come and go...... hang in there.

  • Posted

    Thank you everyone this is so encouraging. So glad there's a support group on here

  • Posted

    Hey Amy,

    I'm 23 & was diagnosed with LS a little over a year ago.

    I completely feel your pain

  • Posted

    I am 31 and have LS! I have been suffering with vaginal issues for years! Not one doctor knew what was wrong until I went to a new one! It's been hard I have not really found much relief, I think it's mostly my fault because I have not tired many things! The steroid creams are a no go for me because of the burning! I've been super stressed lately and am going on a 2 week flare up! It's hard and thankfully my husband is being understanding! I'm sad every day! If you need a friend I am here!

  • Posted

    Hi Amy! I'm 18 years old and have been dealing with this for about a year now. I totally understand what you are going through, and I know how hard it is to have no one our age understand how serious what we're dealing with actually is. Totally here to talk if you need it!

  • Posted

    Hi Amy! I'm 27 years old and I was diagnosed two years ago, but I suspect that I went undiagnosed for about 5 years. I 100% understand your anger and frustration. I also definitely understand the sexual repurcussions of the disease. On the days when things feel bad, it makes me feel bad about my body. I've had to say no to sex with my boyfriend many times. But I think it's important to say no, because you don't want to force things and make it feel worse.

    I find it really helpful to focus on the fact that I've identified what it is, I'm working on treating it and there are doctors who can help. Please know that you're not alone and feel free to reach out!!

  • Posted

    Hello! 

    I had had LS from what I can remember (the symptoms)  since I was 16, but never was diagnosed until I reached 21 and I'm 22 now . Honestly, I too feel the repercussions, especially at such a young age with it and luckily my partner understands that when I say I can't participate in any sexual activities, I literally cant. You're not alone, I promise. It can feel like a daily struggle sometimes!

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