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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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  • Bchatham
    Bchatham kelly86460

    Posted

    We're here, in the trenches with you...we grieve with you and 100% understand. Post more and get advice and let us all be here for each other. This is one of the most positive and helpful places on the internet! Hang in there!

    • kelly86460
      kelly86460 Bchatham

      Posted

      You are so right, I wish I had posted years ago, the information is vital.

      I have a gyne appt tomorrow and I am going to ask to see a Vulva specialist 

  • deb09833
    deb09833 kelly86460

    Posted

    My heart breaks for you and me and all of us. 

    I can only talk about me and what has worked - please no negative comments. I had not told my husband initially either and in hindsight trying to go through it all alone was a bad decision. I wish I had of told him sooner. I had to stop any stress as it just cause horrible flare ups. I changed my diet, cut out sugar (still have occasional wine I'm not a saint). After using clobetesol for five years I haven't had to use it for about 10 months now. I only use paw paw ointment and occasionally diprosone if it feels wrong.

    I still regularly spray with water/salt or water/baking soda. I mix it up. 

    After going through a range of emotions from denial, anger (lots of anger) to hope I realised that people have got it a lot worse than me. I can still walk my dog and smell the flowers and enjoy my family - I'm not being so hard on myself.

    i moved house and miss my salt baths. I would highly recommend if you can escape for a bath and relax. Only salt in the water.

    Hope you can trying and find some peace with it Kelly - 

    ??

    • kelly86460
      kelly86460 deb09833

      Posted

      Thanks Deb, I wish I had told my husband earlier too. He is trying so hard but feels useless. He is coming with me tomorrow to see Gyne. Last time I saw him (a month ago) he changed my steroid ointment to momentasone? Its made things worse. 

      You are right about stress and all the emotions you go through..

      I was just extremely sad last night.

      I feel much more positive since getting replies and understanding.

      And I am lucky in lots of ways xx

  • Octopus_1289
    Octopus_1289 kelly86460

    Posted

    I know only too well what you are going through. I am in n this same situation for the best part of twenty years. Thankfully, my husband was understanding. But not at first because we were just married three years. He thought I was just not telling the doctor everything and that there was some doctor who could help me. Well seventeen years later we both have researched this together and he knows as much about this as I do and he suffers for me. This disease goes into remission then comes back with a vengeance. I get large itchy blisters if I come off prednisone for any length of time. That drug scares me but I have no other resort. I, too, get depressed and I feel less than a woman. I wish that I could help you but only thing I know is that doctors do not know enough about this to help. Wishing you luck. It helps to talk it out here.

    Io

    • kelly86460
      kelly86460 Octopus_1289

      Posted

      Thanks so much. You are very lucky to have a lovely understanding husband. 

      How much prednisone do you take? 

      I have a cupboard full of it as I was on it for my colitis.  It made me very edgy, anxious, restless and I put on lots of weight.

      xx

    • Octopus_1289
      Octopus_1289 kelly86460

      Posted

      35 mg a day for 10 days. prednisone makes my legs swell and gives me a headache. But it does help make the itchy rash go away for s month or do.

      Thanks for the comment on my hubby. He spends far more time researching LS than I do. He was in med school in his younger years but got out and got himself another career. He understands medical terminology better than me too. 🙂

    • Octopus_1289
      Octopus_1289

      Posted

      That should read 25 mg per day. Though a dermatologist once put me on 50. Much too strong.

  • Octopus_1289
    Octopus_1289 kelly86460

    Posted

    I know only too well what you are going through. I am in n this same situation for the best part of twenty years. Thankfully, my husband was understanding. But not at first because we were just married three years. He thought I was just not telling the doctor everything and that there was some doctor who could help me. Well seventeen years later we both have researched this together and he knows as much about this as I do and he suffers for me. This disease goes into remission then comes back with a vengeance. I get large itchy blisters if I come off prednisone for any length of time. That drug scares me but I have no other resort. I, too, get depressed and I feel less than a woman. I wish that I could help you but only thing I know is that doctors do not know enough about this to help. Wishing you luck. It helps to talk it out here.

    Io

  • cynthia40883
    cynthia40883 kelly86460

    Posted

    The depression is overwhelming. I have had this for 3 years. I too have thyroid problems, so many of us do.There is one doctor, An allergist - immunology, who uses gamma globulin to boost the immune system. I would have to qualify by proving my immune system is abnormal. He believes this would make the LS disappear. Have you or anyone else tried this type of therapy? He treats many different disorders this way. I wonder if you might also consider the borax treatment. So many say this has really helped. We all have to pretend that we are ok, even when in excruciating pain. I only have memories now of a normal active life. I guess I have abandoned sex because now my focus is on just surviving each day. This group of women has made all the difference. So glad you found us. The stem cell therapy that a few have been able to get from Dr. Newman, has a pretty good rate of success, but too expensive for most. All I can say is consider trying some of the coping remedies from this group. Spray yourself after urinating, at least with water, some use a very mild baking soda solution or borax. Use unscented huggies after BM. Skirts are better, no underwear, or cotton, if necessary. Nothing with perfume or dyes in laundry or toilet paper. Avoid sugar, it is a catalyst. Caffeine is another problem.I can drink tea. I take an acidophilus capsule , along with other supplements. I am a big fan of Tumeric, anti-inflammatory properties. Stay connected to this forum, support is a must. We are here. Bless you
    • kelly86460
      kelly86460 cynthia40883

      Posted

      Thanks for your reply Cynthia. Its so good to get some feedback and support & suggestions from others who are living with the same disease.

      I have had a look into Gamma Globulin. i;m not sure if anyone in the UK is looking into this but will investigate further.

      Its difficult for me to knot wear underwear as I work in sales and wear tights and trousers through the winter.

      I'm going to give sugar a miss and see if it makes any difference,

      I add tumeric to lots of my food but Ithink you have to eat so much of it to make a difference.

      Just being in contact on this group is a massive boost and a lovely feeling to know I am not suffering alone.

      Thank you so much xx

    • cynthia40883
      cynthia40883 kelly86460

      Posted

      Kelly try and get the turmeric supplement. It really helps with inflammation. I also use acidophilus supplement made for women. I get at Wholefoods. It helps to keep the flora in.That are balance, thus less itching. I would be miserable if I had to wear all of those clothing layers. I wish u could wear long skirts instead of slacks, underwear, and tights. You would gain a lot of relief, if you could remedy your wardrobe.
    • kelly86460
      kelly86460 cynthia40883

      Posted

      Okay Cynthia I will get some tumeric and look into the acidophilus too.

      I am cool in the summer as I can wear skirts and long dresses and baggy trousers without underwear. Winter is different though as its so cold.

      Weekends and eveinings I rush home and live in my PJs and long nighties... my poor hubby! xx

       

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