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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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  • Guppy007
    Guppy007 kelly86460

    Posted

    Hi Kelly, I totally understand.  

    With regard to ulcerative colitis, I also have this disease.   It is manageable if you are on the right Medications. Are you taking anything for this long term?  I am taking immunosuppressants and I do believe it does help keep my LS in check as I rarely have a flare up.  That being said, my diet is super strict, not through choice! and so it could be that through avoiding gluten and dairy that this helps me.

    With regard to Lichen Sclerosus, it is manageable, but it takes some work.  When you say you are in pain, what exactly are your symptoms, have you cuts? or sores?  as one of the worst aspects of this disease is the long list of symptoms, it's a bit daunting, but as I said once you know how to manage it things don't seem quite so bad.  For example, I found early on that cuts and sores are best treated with a baby bottom cream and the white plaques with Clob, although there appears to be a lot of success with women using Borex.

    As already mentioned, spraying yourself after using the toilet with a small bottle of water with a little salt helps keep everything free of urine, and its important to always make sure that afterwards you dry off thoroughly and use something like coconut oil or emu oil to keep things lubricated. 

    It is definitely worth going through some of the older posts as there is a lot of knowledge here, especially the post on Borex.

    • kelly86460
      kelly86460 Guppy007

      Posted

      Hi Guppy,

      Thanks for your message. I am taking mesazaline for the colitis. I was on steroids three times in the past 12montha and 2 different immunosurpressants. I put on 2 stone in weight and lost alot of hair and terrible tiredness, fatigue. Now i am a maintenance dose 2000mg x2 per day of Pentasa. All the while I was on syeroids and immunosupressants my LS dissappeared but it is now back with a vengance for 4 months.

      My symptoms are cuts/splits on my perinieum and scar tissue where everything has shrunk. Sometimes I feel as if I have broken glass in my knickers!

      Redness and swelling too. The baking soda baths have helped with itching but I may be overdoing it as my inner thighs are itchy and rashy too.

      I have ordered some borax but i am dubious of using it ..It doesnt sound right to put a cleaning agent on my lady bits?

      I will give it a try tho.

      I saw my gyne/dermatolist on Friday and they took a biopsy as said the LS was visible but 'arcitecture' is good. They thought I could have Psorisis, eczema and LS!

      We will see when the results come back and hopefully get the right treatment.

      The posts on here are invaluable and a great source of knowledge.

      Thankyou xx 

    • Guppy007
      Guppy007 kelly86460

      Posted

      Hi Kelly, It sounds like you are on a good maintenance dose for your UC, its good you have that under control.  I have no experience with using borax, but my understanding from reading the older posts is that it seems to work for the white plaques of skin that is the hallmark of LS.  I cannot imagine it would be great for the cuts though, but I may be wrong, not sure. I found Desitin baby cream worked for open sores and cuts.  It may be that you have to treat the whole area with different stuff, which you could do by using a Q tip to apply the borax carefully on any white areas and your fingers to carefully apply cream to cuts, it is important to use a hand mirror to make sure you apply creams in exactly the right area and not on healthy skin.  I think the cuts are without doubt one of the most painful aspects of LS, it is agony! and so I do sympathize.  With regard to bathing, maybe try just a salt water bath for a while, and then go back to the baking soda after a while, LS seems to like it when you mix things up a bit.  

      One of the most important things I learned is that when you have open cuts and sores is that you have to be super vigilant.  When I have had these awful problems, what I do is for the first two or three days I use baby cream after bathing (less is more) then, when I feel like the pain is less intense I try to dry the cut/sore  out by meticulously drying the area after bathing, the drying of the area is important as it helps it to heal, sometimes I have even used a hairdryer set on cold to help things along.   Try not to exercise or allow yourself to get over heated while you have these cuts as it seems to aggravate the problem.  

      Let us know how you get on.

    • cynthia40883
      cynthia40883 kelly86460

      Posted

      I think someone said in a post about borax, that it really is a salt. With that in mind, it makes sense that it would heal. I don't think it is a soap as we know it.

    • kelly86460
      kelly86460 Guppy007

      Posted

      Thanks for your reply Guppy.

      I am using Sudocream for my cuts but seem to have small red blisters on the inside of my labia.

      No white plaques at the moment.

      I will order some destin from Amazon.

      I love exercising but I know that it aggrevates the LS. Plus I am waiting for my biopsy area to heal from Friday so will have a resting week xx

  • kelly86460
    kelly86460

    Posted

    Thank you all for your replies.

    I went to bed in a state last night but woke this morning to your messages,

    I am very grateful and got quite emotional that there are people out there who are going through the same.

    It made me feel instantly 'lighter' as I have been carrying this heavy load for so long.

    I will reply to you all, thanks again xx

    • Octopus_1289
      Octopus_1289 kelly86460

      Posted

      It helped me a lot to know that I wasn't alone in my suffering. I have learned a lot on here. Hope it helps you too. Hugs

  • hanny32508
    hanny32508 kelly86460

    Posted

    Not much to add to all the comments that are made by people here.  Just wishing you well!
    • hanny32508
      hanny32508

      Posted

      It is not an easy disease to live with.  Feeling less of a woman, sexually less able, is no easy feat.  The mental part I experienced as the most hard to overcome.  Having the support and understanding of a husband is half the battle.  Perhaps the support of a few trusted friends, that's a bonus.  But only the people who have LS themselves will fully understand.

      ?Practical aspect were already mentioned - I have been helped a lot with baking soda and borax baths and rinses.  Plus strict diet - no sugar, gluten free, caffeine free, no alcohol and limited dairy.

      ?

    • kelly86460
      kelly86460 hanny32508

      Posted

      Thanks Hanny, you are right. My husband has been great since i had my 'meltdown'. He wants to do anything he can. He held my hand while I had my biopsy on Friday and asked the Consultant some good questions.

      My group of friends and my boss know but do not understand the pain each day and I wouldnt expect them too.

      This group is a life saver.

      I am going to give up sugar tomorrow...it will be hard but got to be worth a try if it has helped you others.

      xxx

       

  • Bridge_of_Sighs
    Bridge_of_Sighs kelly86460

    Posted

    Oh Kelly, a big hug to you. Don't beat yourself up about the things you have or haven't done, You've told your husband now and look what he did! Bless him for getting you something that will help. You marry 'for better or worse' and he's stepping up to the mark, so well done you for letting him in.

    I cried for two years after I was diagnosed (five years ago after having lived with pain and discomfort for years before that and being dismissed as a hypochondriac before that). It's horrible and we've all been on a journey to accept ourselves in this new way. It hits at your womanhood, your sexuality and your confidence. It's also lonely because it's a difficult one to share with people you know. We are all here for you, we're all on this journey too, standing behind you. Courage and strength. I'll put some links from this discussion that have been really helpful;

    Here's the 'New to LS' link from the top of this site

    https://patient.info/forums/discuss/new-to-ls-start-here-297241

    Here's the thread on Borax which has given instant relief to many on this site

    https://patient.info/forums/discuss/an-experiment-with-borax-502021

    Here's a webinar by Dr Goldstein which is informative about how to get the best results from steroid ointment. It's long, make yourself a cup of tea and watch.

    http://www.lichensclerosustreatment.com/

    A big hug to you,

    Bridge

     

    • kelly86460
      kelly86460 Bridge_of_Sighs

      Posted

      Thanks Bridge, The links are really useful.

      I've spent the weekend watching & researching and I feel lots more positive and informed.

      It is sad that we all have this disease to deal with.

      I wonder if we are lifes 'worriers' and bear stress for everyone.

      I know that I do but also that it has to change.

      Thanks for the hug! xxx

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