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
diana71766 kelly86460
Posted
kelly86460 diana71766
Posted
I hope so Diana, it just feels like we have a 'dirty secret' and have to keep our pain and being uncomfortable to ourselves.
I hope you are in remission and keeping well and am grateful for your message xx
sue162 kelly86460
Posted
Kelly,
I feel exactly the same as you with regards 'dirty secret' I said to GP the other day I feel disgusting down there she just stared at me as I don't think they realise how it affects some of us physcologically as well as physically.
kelly86460 sue162
Posted
Hi Sue, I think the Physological effects are harder to deal with than the pain. The pain is bad but we learn to live with it. Nobody can understand how it makes us feel unless they have it.
I'm not ready to give up sex and I want to feel sexy so bad but it is impossible with this disease.
I'm taking amiltriptiline at night to help me sleep and enhance my mood in the morning. It is helping but I still feel sad and depressed.
Did your doctor offer you anything to help?
My husband thinks I need to talk to someone about how this disease has made me feel... maybe we all do?
sue162 kelly86460
Posted
Hi Kelly,
you our are right. It's been a struggle with getting things sorted it's taken nine people to help of which I hate getting my bits out time after time. I've had to come off dermovate and coconut oil as I've come out in horrendous blisters but since putting nothing on since last Wednesday I looked last night and they are receding. I go Wednesday again to hospital. I'm still waiting biopsy results from five weeks ago. Once I get results I'm going to go to the Spire nearby to see a vulgar skin specialist as I think he will know more, just to spend more time answering my questions and I suppose for some professional reassurance, something I haven't had up to now. You sound better last few days. X
sue162
Posted
sorry dam iPad it'll make you laugh I didn't mean vulgar I meant vulva that'll teach me to read it back won't it x
kelly86460 sue162
Posted
It is Vulgar lol! I do feel better in the head since being on here. I don't feel that I'm on my own anymore.
I have seen a Vulvar specialist at Crawley Hospital on NHS. I wonder if that is near to you Sue?
sue162 kelly86460
Posted
No I'm up north, I thought it'd make you laugh, yeah it is vulgar lol. Were they any good at the clinic?
kelly86460 sue162
Posted
Hi Sue, they were good. Its a gyne & dermatologist clinic. I'm waiting for my results. I hope you get on good tomorrow. Let us know. Think you should mention how it makes you feel too. I don't think they take that into account. My consultant said that they can prescribe a short course of immuno-surpressant tabs if the steroid cream is not working. Good Luck x
samantha1970 kelly86460
Posted
Ladies. I just wanted to make sure you all know there is a list of vulva dermatologist who work for the NHS online. I won't post the link in case it's deleted. But please google The British Society for the Study of Vulva Disese and you can go to the clinics in U.K. Page and search there. The list is also provided there in PDF format. What I did was to check the list and then go armed with a copy of it into my GP surgery and ask for a referral to my closest option. My GP obliged and gave me the referral letter.
Ps I also use protropic.
I do believe with this disease, we are better together and share knowledge.
take care
kelly86460 samantha1970
Posted
Is the protopic working for you?
xx
samantha1970 kelly86460
Posted
Hi Kelly, I'm happy with protropic. I've personally had no side effects but everyone is different 😀 Xx
tabby72761 kelly86460
Posted
Dear Kelly,
i am so sorry to read your painful story.
i suffered for several yars before receiving my diagnosis. I even had a doctor tell me i had herpes.
my husband was understanding as he could see the painful tears and scarred tissues.
my new 'female gyno' (i only see females now, they are sympathetic to the torture of this dreaded dianosis) told me about a new treatment they have been approved to use in the u.s., The Mona Lisa Touch.
This is a laser resurfacing treatment which encourages the growth of new skin cells which a young and more flexible.
it has been a God send for me.
Not all insurance covers it yet, but I have heard some are starting to because of the success they have been having with it.
My doctor did the procedure in the office. It consisted of three laser treatments about six weeks apart. It is quite uncomfortable, but the doc gave me some numbing cream to apply.
i am more than six months post treatment and the itching is gone. The skin has a nice pink color again, and I can carefully be intimate with my husband.
i will be forever scarred by the condition as it attacks the structure of the vagina. I have no labia minora left. But I am thankful I went through with it, and recommend the procedure.
tabby
cynthia40883 tabby72761
Posted
kelly86460 tabby72761
Posted
Hi Tabby,
Thanks for your message. I'm sorry that you went hrough such an ordeal before getting the right treatment.
I have heard of the Mona Lisa Touch on this site before. I don't think it is available in the UK but could be wrong. I will talk to my Consultant next time.
I am glad it has worked for you, its encouraging to know. xx
tabby72761 cynthia40883
Posted
I have no symptoms now. Other an minimal itching occasionally. My husband and I do use lubricant when we are intimate, but at least we can be. It has been a God send.