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27yr old diagnosed with LS and feeling so low.

Posted , 8 users are following.

steph8923
steph8923

Hello everyone, 

I don't really know what to do with myself, but finding this group has been a little comforting. I was diagnosed with LS just this week after suffering for nearly a year with doctors and nurses failing to realise what was going on. 

I'm 27 and am really struggling with how this condition is affecting me. I basically feel like I've been robbed of my sexuality as I have lost a lot of sensation and believe my clitoris has shrunk and become much less sensitive. On a separate note I was diagnosed with PCOS at 20 which coincided with the loss of sensation in both of my nipples (I do not know if it was related to my PCOS or not). I feel so depressed to think that I may no longer be able to experience any pleasure sexually and worry about how this will affect my relationship now or any future relationships I may have. 

I have been prescribed Dermovate which I am using, but I am aware this is for the itching, skin thickening and discomfort. I am not expecting it to help with the problem I outlined above. 

I feel so low about all this. I feel like my life is over. I know it sounds melodramatic but I just feel so depressed about life with LS, I don't really know if I can cope with it.

I guess I'm wondering if anyone can relate to this. Most discussions I've read online centre around the problems with itching etc. and are often by women much older than me. I could really do with hearing some hopeful stories if anyone has any and is kind enough to share. 

Thanks,

Steph 

1 like, 11 replies

11 Replies

  • amanda43686
    amanda43686 steph8923

    Posted

    Hi Steph 

    i have also recently been diagnosed and have very similar symptoms to you although I have been treated for thrush for several years due to discomfort and burning. I have just turned 39 and waiting to see the dermatologist, following a visit to the gynaecologist. 

    I have read that there is relatively simply surgery that can be performed if the clitoris has fused over in order to increase and bring back sensitivity but I have not spoken to anyone about it yet. I will be asking about it when I get my appointment through. Will keep you posted, I am sure something can be done it may also be worth looking into stem cell treatment and prp I am researching it at the moment. My thoughts are with you it's such a difficult thing to come to terms with, good luck will keep you posted.

    Amanda

    • steph8923
      steph8923 amanda43686

      Posted

      Hi Amanda, 

      Thank you for getting back to me. I really appreciate it. I'm glad you have brought those possible treatments to my attention as I was not aware of them. Please do keep me (and others) posted if you do ask at your appointment. Thanks again. 

  • melissa0
    melissa0 steph8923

    Posted

    I am 34 and was diagnosed about 9 months ago. I was so down and feeling depressed for a while after my diagnosis. This group has really helped me. I still have questions but seem to have a better understanding of myself and what I can and cannot do.

    Let me know if you have any questions. Hang in there.

    • steph8923
      steph8923 melissa0

      Posted

      Hi Melissa,

      Thank you for your positive reply. It helps to know that there are such supportive people here. 

  • joe41286
    joe41286 steph8923

    Posted

    Hi Steph,

    My diagnosis is actually still under question so don't exactly know where I stand atm, but have had several months living with the diagnosis of LS and am only 22, I have found it so hard and have felt exactly the same. There have been days where I litteraly haven't felt I want to carry on living if I am going to have this as it just robs you of so much! Sorry to be on such a downer too but I completely understand sad. But as others have said I think when people know for sure they have it, over time they often figure out ways of managing it so it doesn't impact their lives too much and feels more normal again, fingers crossed! I wish you all the best!

    • steph8923
      steph8923 joe41286

      Posted

      Hi Joe,

      I'm sorry you have been diagnosed with this too. It all feels very cruel. I have also felt like I don't wish to carry on living if it means I have to put up with this. I know exactly how you feel when you say that. I just hope that as we are at the beginning of this journey that we will get better with treatment. Thanks for getting in touch and feel free to message again if you ever want to talk. All the best to you too.

  • mary09950
    mary09950 steph8923

    Posted

    Hello Steph,

    I can tell you I had problems with LS in my twenties for about six months and was treated with testosterone at that time (they don't recommend that treatment anymore) also also hormones for BC. Somehow it went into remission so possible for you. I believe it was the BC pills and less stress that led the remission. It has reoccurred 30 years later but I think I am able to control it.

    Keep your head up, talk to your provider, try keeping stress down and listen to others advise here, you'll be okay. I found great relief keeping areas covered with Aqiophor ointment along with prescribed steroid.

    I was you, I know how you feel and I wish I knew then what I know now about life, love and the challenges women face. Be good to yourself, you can find happiness and relief, I know!

    • steph8923
      steph8923 mary09950

      Posted

      Hi Mary,

      Thank you for your positive encouragement. I am trying to keep my stress down as I know this is something I have to work on - I'm finding it a challenge at the moment but will keep working on it. 

      Thanks again for your kind words.

  • christine12255
    christine12255 steph8923

    Posted

    Steph,

    I feel for you, I really do. My dermatolgist told me that surgery in some cases can be done. Your provider could refer you to specialist who would be knowledgeable in this area if needed. I am a lot older than you and have no inner labia and problems with vulva etc, some women have it a lot worse.  Do discuss other treatments, surgery with your provider - there are alternatives.  God bless you.

     

  • jeri24294
    jeri24294 steph8923

    Posted

    Dear Steph, my heart goes out to you.  I am older and sex is no longer an issue with me and my dear husband.  All I can tell you is keep an open mind, and listen to the wonderful women on this site.  Try all you can to help  auto ammune diseases.  I use pro biotics, and keep sugar to a minimum but haven't given up my wine or scotch.  Let us know how you are doing.

  • Jessicat
    Jessicat steph8923

    Posted

    Hi I'm 20 and was diagnosed with LS when I was 19. I know how upsetting it can be, but my boyfriend seems to understanding. I suffer mostly with itching and soreness, I haven't experienced fusing or white patches.

    I read on the forum that borax solution can be used to help and free any shrinking and fusing, I think it was a post by Alistair. It is worth a read if that is your main problem, I think the steroid cream just keeps the fusing at bay so it needs to be maintained

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