So sad, I just need to talk to someone
Posted , 17 users are following.
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
wendy14679 kelly86460
Posted
Hi Kelly, I have just been reading your message and wanted to tell you that I am thinking of you. You obviously know how all this works, as you have had LS for 10 years I think you said. In my case, everything seemed to be going really well until I went off to France for a month over Christmas. I had a special toilet seat installed at home, upstairs and downstairs, which is brilliant as you get properly washed front and back every time you go to the toilet. I don't seem to be too good with spray bottles, I either make a horrific mess on the floor or spray my clothes! Very soon into my holiday I had a nasty flare-up which stayed with me for the rest of my holiday. I always use coconut oil these days and, occasionally, emu oil which you have to keep in the fridge. I think the washing part is very important and diet definitely comes into the equation. I keep off citrus fruits, tomatoes and even bread! People say dairy foods are not good for LS, but I still have milk in my tea and coffee, just not too much.
?Yes, I felt desperate and sad to begin with,but I am getting used to no sex now! I try not to think too much about it, as it makes me feel guilty. It was too painful.
?Please take care and know that we are all in the same boat and supporting each other when we can. xx