Biopsy needed

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I now have a date for a vulval biopsy as the specialist thinks it may be LS. There is a white patch there - which amazed me because two GPs told me that there were no white patches.

Anyway I need to have this biopsy done mid July - my GP told me that if it does show LS then in all likelihood they would want to remove the white patch (vulval surgery scares me to bits!).  He said the steriod creams are not much good and they prefer to take the bit away in the hope that it will remove the risk of cancer developing.  I am left wondering a) how painful is that op, has anyone had it done? It will be under a local anaesthetic I think. and b) would LS come back and I need to have it all done again?

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  • Posted

    I had it done last year it's uncomfortable that's all. Are you not under a consultant as well, they decide what creams you can use. It's all very well your gp saying they don't help. They Don't have the itching that drives you mad.
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  • Posted

    The steroid cream in most though not all cases stops the itching and gets rid of the white patches IF it is used properly. I would only listen to your gynae or dermatologist. Gps just do not have the knowledge of LS. If you don't use steroid cream then what is to stop you getting more white patches ? I truly hope you don't of course but they can't just keep cutting it away surely ? The very best of luck anyway with your procedure. Let us know how you get on. Don't be afraid to ask lots of questions, lots of specialist are not very forthcoming in lots of our experiences.
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  • Posted

    sarah, I agree with caroline, the white patches are part of LS and even if you have them cut away they can come back.  I used the steroid cream for the white plaques when first diagnosed, and it went.  Recently due to being sick with other issues they came back, I used the cream and it went.  I think its a mistake having it cut away, honestly some the doctors are nitwits  and have no idea, they are guessing, and because they dont know what to do they suggest removal.  
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  • Posted

    thanks everyone. I don't itch but it stings. I will be sure to ask every question I can. Ihave only seen the specialist once and he wasn't keen on talking to me, much preferred writing up notes!
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  • Posted

    Hi Sarah,

    I have had two biopsies taken about a month ago and recently found out I do have Lichen Sclerosus.  According to what I've read, removing that white tissue does not cure the disease, and that it returns.  I have not known about this disease until recently and there doesn't seem to be any concrete cure, only treatments and unsuccessful attempts to cure.

    I was using the steroid cream twice daily and upon my checkup, my doctor was pleased and told me to use it once weekly.  In between, I'm using organic emu oil and 100% pure coconut oil, both available on Amazon.

    I am a Registered Nurse, specializing in Med/Surg and Geriatrics, but not a gyn nurse.  I had never heard of this disease before until I was diagnosed.  My opinion is that you see a gynecological surgeon or a dermatological surgeon for further treatment.  GP's are good, but they don't know everything.

    I did have the biopsies and unfortunately, yes, they were painful.  My doctor used local anesthetics, it didn't feel like they helped me.  But I must add, this may be different for everyone.  However, this doctor is my first gynecologist who addressed this, and I've gone to a NYC top gyn specialist and a University Hospital.  Neither had tested me or diagnosed me.  I'm 59 years of age.

    I do have one question for you though, per my research, there seems that many who have LS have Irish ancestry.  Is this true for you?  It is for me.

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    • Posted

      Hi Pansy,

      I thought about this a while ago and asked the question about skin type.  I am fair skinned and indeed have West British/Irish ancestry, but I don't think it is terribly significant.  There is a lady who contributes on here who has been a long term sufferer as I have, and who has a dark complexion and I'm sure there are examples from everywhere.  It is a very odd seemingly underresearched condition.

       

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    • Posted

      Thank you for your answer.  The Celts came from the middle east, so I am trying to put common denominators together.  I truly hope your biopsy will be less painful than mine.  Just try and relax, knowing you may finally have an answer soon.  Good luck to you and I wish you the best.  Feel free to write me anytime.
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  • Posted

    Hi Sarah,

    I agree with Guppy and Caroline.  Why cut away the white areas if they can be treated with steroids or Alistar's borax treatment.  Definitely get another opinion.

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  • Posted

    I don't think cutting away is the answer. My white patches went away very soon after starting steroid. Steroid doesn't cure the disease but I don't believe cutting it will either. In fact, one lady on here talks about the Koebner effect. Read up on that before you agree to surgery. Change of diet and steroid ointment and moisturizers should help you, though again, not cure.
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  • Posted

    thanks for all the replies. My GP said that 'round here' specialists tend to opt for the removal method rather than prescribe the creams etc. I will have to see what the biopsy result is, won't get that till towards the end of July I guess.
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    • Posted

      Sarah, I really would say no to the surgery to remove the white plaques. You NEED steroid cream, it is the only thing that will keep it at bay. Please read all the threads on LS and the talk given by a SPECIALIST in LS who knows far more about the condition that it would appear your doctors and consultants do there. LS has the effect of thickening the affected skin so the thining effect of steroid creams that most gps fear is NOT relevant to tho condition. In fact it is what makes it effective in bringing the skin back to "normal" looking . I'm so worried you are going to have a procedure that will be painful and unecessary
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    • Posted

      Can anybody remember link for the talk given by the specialist on this site so Sarah can listen to it. It has SO much information on it ?
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    • Posted

      I just responded but my message was blocked. (They don't let you include web addresses.)  Just look up lichensclerosustreatment.
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