Getting worse after biopsy

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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. 

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  • Posted

    I just had a biopsy today , worst pain I ever had , but I suffered for years and was the only option , could not deal another minute . I don't exactly know your kind of pain , but I think it's close enough!! I'm hoping you get the answers you need . This has ruined my relationship on a sexual level , thankful my boyfriend understands and is supportive !! Feel betta !!!

    Sincerely

    Donna

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  • Posted

    You poor thing...I feel so sad for you...too young to have this affliction. I have my LS mostly controlled by natural means and my skin is much improved with the methods I use. Not sure where you live...I'm in the states. I use a cleanser called Cetaphil...very soothing and non-irritating. If you don't have access to that a non-perfumed coconut oil soap is next best or a non-perfumed olive oil soap...the more natural the better. I use witch hazel in a spray bottle for rinsing after toileting...it may sting a little if you are irritated, but it helps heal you more quickly. Here in the states they use witch hazel pads on stitches after giving birth. Others us 2 pinches of bicarbonate of soda in a 8 oz. spray bottle if they don't tolerate the witch hazel...but I feel the witch hazel is best. I then put just a little 99% pure or higher aloe vera gel all over the area...stops the itch and helps condition the skin. My area looks almost normal now.  I do have some scarring, but even that has improved. A doctor friend who is also into natural medicine has advised me to see a doctor who specializes in hormonal imbalances...you might want to look into that as you are so young...there may be an answer there for you.  Coconut oil is also a good, natural moisturizer and has medically proved healing properties as does witch hazel and aloe vera. Everyone has some imperfection...none of us are perfect. Love yourself for all the positive things about you...that is what others love you for.  Accept the things you can not change as fretting about them will just take you to a dark place...and that more than anything would make others not attracted to you. Smile at yourself in the mirror every morning and say "I like myself"...and believe it. Hugs to you!
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    • Posted

      thats lovely renee...thank you for the inspiration which has been repeated to me in my own thread where i'm feeling a bit down.

      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.

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  • Posted

    Glad you found this site.  There are many 'sufferers' here who can give you some support and hopefully you won't feel so alone anymore.  At least that's what I hope - that you will feel the support of many fellow LS patients.  This indeed is a dibilitating disease and not immediately easy to live with.

    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.  

     

      

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  • Posted

    I use only water down there to cleanse and I own a bidet which is great. For moisturising I use Dermeze and for the ointment I use Advantan fatty ointment because it is absorbed better than a cream. I attend a special clinic devoted to this condition. I keep it under control with this treatment. Monitoring and treating are the keys. I am sorry you are so young. It seems unfair. All the best!
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  • Posted

    Hi poppydnotneh,

    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.

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  • Posted

    Hi Poppy, so sorry to hear you are having such a rough time. After 3 years of suffering I was diaagnosed with LS and Vulvodynia.After lots of different tablets and steroid cream I didnt get much relief. I went on holiday for a week and everything went away, I worked it out,the only difference was the water, where I live we have flouride where we went on holiday didnt. I started using bottled water and things improved,try keeping a food diary or start drinking bottled water in case it is an allergy causing it. The steroid cream does make the skin very frigile and tender,I now use John sons 3 in 1 nappy cream with Zinc everytime I urinate and the skin has improved no end, and started taking zinc and copper tablets as zinc helps healing..Do not use and perfumed or scented products in the shower or bath and use Double Base shower Gel if possible and blow dry the area instead of using a towel.. Hope this helps you, I would have tried anything and everything, I had a filter tap fitted in my kitchen and also used a filter jug and bottled water.My symptoms did come back after 4 months and I realised I needed to change my filter.After changing the filter it all cleared up again. I also use Euthymol tooth paste as it doesnt have flouride in it. Good luck will be thinking of you

     

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    • Posted

      wow thats brilliant advice anita...and so specific.THANK YOU !

      am dashing out to buy a water filter....!!! can you recommend a particular brand ? i'm in UK.

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    • Posted

      We bought the sink water filter from ebay it took my son 15 min to fit,and the jug from Asda. Really hope it works for you.Please let me know
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    • Posted

      yes ok! thank you so much. can you tell me the name of the brand you got? on ebay...and well also in asda...sorry!!
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  • Posted

    type in 271 5856 91032 and its £14. 89. and we bought Asdas own brand water filter.Please let me know if you have any improvement
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    • Posted

      thank you so much anita. I hope it will help others too x i will get back to you once i've hunted this down and have got it fitted !
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  • Posted

    hi poppy

    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!!

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  • Posted

    Gosh I feel bad for you.  I liked Renee's advice too and so the only thing I would like to say is please think very very carefully about having  the corrective surgery if it is only because you hate how you look down there!!! because it could make things far worst, and remember no one looks pretty down there in the middle of a flare...I think its easy to forgot that! and once all the sore areas,cuts, white patches etc clear up  you will actually look normal again......just something to think about.
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