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So sad, I just need to talk to someone

Posted , 17 users are following.

kelly86460
kelly86460

who is going through the same worry, sadness and grieving for my ladybits, my sexlife, my womenhood my life....

I am consumed with worry, I've read the emails on this site for a long time but never been brave enough to join in. I'm desperate now... Things have got really bad. I've been having a severe flare for 4 months.

I'm living witgh severe pain everday. Its the first thing I think about when I wake up, the last thing before I go to bed. 

I've had the condition for 10 years, I'm 45. I was diagnosed with Graves disease at 33 years and this followed soon after. It took a a year to be diagnosed. I was given clob and the name 'Lichen Schorosis' handwritten by the nurse on a scrap of paper.

I thought I was sore from sex, I didn;t realise I had a disease.

Now when I look at previous emails on this group 'strep B' comes up.

My first baby, George was stillborn. The postmortem reavealed I had a Strep B virus that had caused a placenta abruption...

Last year I was hospitalised with severe Ulcerative Colitis. It was bad... another immune disease.It has taken 12 months to get the symptoms under control. Whilst on a strong dose of steroids 45mg, I had no LS.

My skin was pink & plump and no tearing, itching, fissures... it was bliss.

I then took two immuno surpressants, both made me feel awful but again my LS was in remission. Since stopping the meds my LS is Chronic, Sometimes I can hardly walk., but I do. I can't exercise although I've put on 2 stone due to the steroids. I've also got scorisis in my hair.

My immune system is so wrong that my body is attacking me.

I go to work full time, walk my dog, have two teenage boys that need lifts here and there and support in everything they do.. I suffer in silence. Its so painful that I take 2-4 tramadol per day and amiltrypiline at night,

My labia majora has shrunk, my labia minora has halved and living in constant pain is really getting me down,

I broke down two days ago, told my husband to do some research on LS as I have always tried to hide the details from him, he just thinks I'm 'sore'. Well he did do some research amd tonight gave me some 'emuaid' that he had ordered online.

I'm grateful and thankful it has opened our discussion on LS. We have both been waiting for me to get better, be  normal, Well its not going to happen, we've got to live with it how it is and make the best of it before I lose everything.....

I just want to know if anyone else has felt this desperate & sad or di I need some help with comimg to terms with losing my sexuality?

xxxx

 

1 like, 62 replies

62 Replies

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  • justine89448
    justine89448 kelly86460

    Posted

    Hi your not alone this is a great site and we truly do understand. For me I do see a difference when I change my diet especially the sugar side of things. I also have bowel problems and I'm intolerant to fructose. There is an immune suppressant cream called protopic you could try however it does take sound 6 weeks to work. Good luck xxx

    • kelly86460
      kelly86460 justine89448

      Posted

      Thanks Justine, its so nice to know I'm not alone with this awful disease and symptoms,

      I spoke to my consultant who is a dermatologist in the gyne clinic on Friday about Protopic. She said the same that i could take 6 weeks to work,

      I had a biopsy and we will discuss when the results are back.

      Thanks as had not heard of it before your message xx

    • justine89448
      justine89448 kelly86460

      Posted

      Hi for your cuts I would recommend hydromol it's a bit like Vaseline but much better. You can wash with it too

  • sue162
    sue162 kelly86460

    Posted

    Hi

    just wanted to say as other posters have said we all feel the same and wish I could give you a hug, sometimes we need a massive hug.  You have a lot going on.  It's good to discuss it with your husband you need to.  I never even got a scrap of paper just google to do which frightened me to death. and so I came on here.  The trouble with L S I have to come to realise once I took it in what I had it's a disease which we need support with just like any other but I just feel shame terrible shame because you can't discuss it with anyone other than very immediate family.  You are doing well and need a pat on the back xxxx

    • kelly86460
      kelly86460 sue162

      Posted

      Thanks Sue, I did need a hug, you're right, sometimes you just need someone to say everything is going to be ok.

      All of the messages gave me so much stregth for my appointment on Friday.

      I don;t know why we all feel so much shame but we do... its because not talked about, shared on posters or leaflets or sex education etc.. thats why we feel like we have some dirty secret.

      Its not our fault though, its an immune diesase.

      Sometimes I want to wear a T shirt with 'Ive got LS ' on it and see how many women approach me ...none would though as its so shameful and we wouldnt want to be judged.

      I hope your doing ok and I really appreciated your message, thanks xx

       

  • lorraine72329
    lorraine72329 kelly86460

    Posted

    Dear Kelly,

    I'm sending you massive hugs, xx

    Thank you for being so brave and writing your words down,

    I've only just been diagnosed with this awful desease,

    I don't know much about it ,

    But, I read everyone's words and think of all you lovely people ,

    Every day,

    And hope one day there is a cure,

    From this forum I feel I have gained so many new friends,

    Thank you ,....

    Your not alone, xxxxx

    • kelly86460
      kelly86460 lorraine72329

      Posted

      Thank you Lorraine, I felt your hugs through your message and words.

      It was a great comfort and I felt stronger with each message of support.

      I hope you are coping ok and I can help you one day xxxx

  • claire12259
    claire12259 kelly86460

    Posted

    Hi Kelly

    Im sorry you are suffering so badly. I found that changing my diet basically put my LS into remission. I gave up dairy, gluten and sugar. I also take MSM. After a while I reintroduced gluten and tiny bit of dairy and the very occasional bit of sugar. Try going on a major detox - no junk food, home cooked organ veggies etc, no alchol and to begin with no/little fruit. Also no fizzy drinks. I think you will find it will improve your symptoms and although not fun its easy to do/no expense.  Good luck, hope you find your solution soon XXX

    • cynthia40883
      cynthia40883 claire12259

      Posted

      Why MSM, CLAIRE? This is the first I have heard This. What is the thinking behind this?
    • claire12259
      claire12259 cynthia40883

      Posted

      Hi Cynthia,

      MSM flghts inflammation and it does something to mucas membranes. I was gonna copy and paste you some info but there is loads of stuff on the internet, just google it! XX

       

    • cynthia40883
      cynthia40883 claire12259

      Posted

      Thanks CLAIRE, I Did Google it. It has many properties and can help with osteoporosis, which I have, thinning hair, inflammation, many things. Do you have any side effects from it? I will try it!
    • claire12259
      claire12259 cynthia40883

      Posted

      Hi Cynthia,

      No I never have, but I only take two tablets a day now. I think initially I took more - maybe 4 a day. I always try everything and this is one thing I have stuck with. I also have a very sensitive bladder and I believe it helps with that too. Its quite cheap thank goodness! Good luck, hope it works for you! XXX

    • kelly86460
      kelly86460 claire12259

      Posted

      Hi Claire, thanks for your reply, I am seroiusly going to try and give up sugar. (im eating a bit of coffee & walnut cake at the mo..) I think if it has helped you and others on this forum then its got to be wortyh a try. The problem I have is Ulcerative Colitis needs stodge, i,e, Bread, rice, pasta, potatoes - things which pass through the bowel slowly.

      I can cut the sugarthough, so will try and let you know how I get on xxx

       

  • claire12259
    claire12259 kelly86460

    Posted

    Organic veggies!!!!

     

    • kelly86460
      kelly86460 claire12259

      Posted

      Meant to say that I went to Holland & Barrett today and asked about MSM powder. Its going in the 'penny sale' on Wednesday, so you can buy two jars for £15.00 x

       

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