Getting worse after biopsy
Posted , 10 users are following.
I'm 22 and was diagnosed roughly a year and a half ago. I had a biopsy 1 year ago to confirm LS. They cut most off her white away leaving me In a condition I hated so I now am meant to be having corrective surgery but my skin might not cope with it. In the past month or so it's just gotten so much worse. Itchier and tearing so easy. every day it looks awful and I feel sick knowing how damaged the skin is and how dangerous it can be. I'm only 22 and I this is now getting mw down every day. I use the creams. I know it can't be cured but I'm worried how it's gonna look and feel in a weeks time yet alone in 10 years. I don't know anyone else with this problem but I feel horrifically alone and scared. I'm booked in with my hospital in May and have begged for an appointment sooner but does anyone. Have any tips on how to cope with it. I'm so embarrassed of myself and its ruining my relationship.
0 likes, 15 replies
donna40100 poppydnotneh
Posted
Sincerely
Donna
renee77108 poppydnotneh
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lizziewizzie renee77108
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i love your natural med suggestions and am going to try them out. i suspect its a systemic issue and when i feel up to it i'll start exploring but i like your ideas for treating the localised skin issues. thank you again.
hanny32508 poppydnotneh
Posted
I hope you can take the time to browse through the many discussions and learn as much as you possible can about LS. That's your first weapon of defense, I would say.
From my angle a lot of questions pop up - what medication are you using? (Globetasol is our main ointment at present.) (some use Protopic) What are you using to make the skin moist and flexible? (I use coconut oil or emu oil for instance) Are you on hormone replacement? Do you have other auto immune diseases?
What about your diet? (I have cut out sugar, alcohol, most dairy and gluten) Are you under a lot of stress? Stress is a big trigger for LS.
Soothing for me are baking soda rinses and baths. I rinse with baking soda and water after every bathroom visit and then apply a new layer of coconut oil or emu oil. Twice a week I use a very thin layer of Globetasol.
Hope the above somehow gives you a start. Wishing you WELL.
kathleen65757 poppydnotneh
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lizziewizzie kathleen65757
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is the advantan ointment chemical-free as far as you know?
liz
dani2590 poppydnotneh
Posted
I'm 24 and was diagnosed about 3 months now. I'm also quite young like yourself and am scratching my head wondering why/how on earth did I get this..
Where are you from? I'm from Sydney, Australia. I was horrified when I found I have this. Still haven't adjusted and am having a hard time.
Renee had some helpful advice. And she mentioned looking into hormonal imbalance. I'm now on the hunt for a good doctor who specialises in hormonal imbalances. A good naturopath or chinese doctor may also help. I know for a fact that my hormones are all over the place.
LS has also affected my sex life. Lucky my partner is understanding. We've had intercourse twice in the last 4 months. The specialist I see has prescribed me topical estrogen to strengthen the vulva skin and prevent tearing. Have you looked into this? Estrogen applied to the vulva can help restore the skin. It doesn't cure LS but it can be a good adjacent treatment. I still have a great deal of anxiety about sex, I'm afraid to attempt it, fearing I'll tear or make it worse somehow.
I know how you feel. I've never felt so scared or isolated in my life but this forum has been a great help. Feel free to post any questions or concerns you might have.
anita1951 poppydnotneh
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lizziewizzie anita1951
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am dashing out to buy a water filter....!!! can you recommend a particular brand ? i'm in UK.
anita1951 lizziewizzie
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lizziewizzie anita1951
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anita1951 poppydnotneh
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lizziewizzie anita1951
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lizziewizzie poppydnotneh
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so sorry to hear of your predicament. you could always present yourself in casualty if things get really bad. ....ask the triage staff to seek some advice from the burns unit as they often have to deal with dissolved body parts....egg white is very helpful for skin repair. there is also something that we use for horses for cuts below the hocks ....just can't think of its name at the mo...but a saddler would know. it hasn't been trialled on humans so it maybe declared unfit for humans but it is a very effective repair and it would definitely help to prevent further excoriation and to promote healing. i think it has allantoin in it which is also in egg white.
have you read anita's tips? brilliant!!
Guppy007 poppydnotneh
Posted