Lichen sclerosus biopsy

Posted , 15 users are following.

Hello!

Is it necessary to have a biopsy to diagnose LS? It's very obvious because of all the symptoms that I have LS, but the nurse practitioner wants to do a biopsy. Anyone here had a biopsy done? I'm terrified.

thank you!!!

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16 Replies

  • Posted

    Hi,

    I had one the first time I was seen by my gynocologist and it was positive for LS. It's a good idea to have one if possible, at least from all the material I've read. It's a little painful, but not for too long in my experience. wishing you well!

    Marny

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  • Posted

    hi, the only reason i had a biopsy was because the clinic i went to thought i might have cancer down under and suggested i see a gyn. it took me almost one year to get up enough nerve to have the biopsy because i was terrified. so i did get it and diagnosed with LS. the biopsy did not hurt. the novacaine shots pinched and when i was sufficiently numbed she did the biopsy. not everyone gets one. unless things start to change dramatically, cancer has to be ruled out.

    how are you treating your condition? follow your gut on what u want to do. hope i helped. take care.

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  • Posted

    I haven't had one and my gyn never suggested it. She conducted a very long exam, explained the signs, showed me medical book photos of symptoms I had (though I could barely see them once home, other than the very faint thin white line and some whiteness along the edge of one labia). I have been using a steroid, the lines are gone, and according to the doc I am responding well to the treatment so I see no reason to have the biopsy myself. From what I have read some doctors think it's necessary, others don't.

    I believe it is to rule out cancer, but I have read that cancer is most apt to develop if the LS goes untreated.

    Has the NP explained to you why she thinks you need to have one? You could start there.

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  • Posted

    I do think that biopsies are far to easily bandied about as a first option !

    I've never had one... my GP recognised what are very obvious symptoms, if you know what you are looking at. You are entitled to treatment without the biopsy. i would refuse and commence steroid treatment. NB. My GP started me on Mometazone, rather than Dermovate (clob). Not as strong, but very effective and gives you somewhere to go, if necessary. If the NP refuses, get a second opinion.

    Good luck.

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  • Posted

    hi i had one wish i hadnt it did come up that i had Ls but it was clear i had it anyway .

    since i had it done now over 8 months ago it wont heal keep getting flare ups in the same area it seems to me its scars me more made the skin more sensitive

    it was painful for a long time and still breaks in the biopsy area

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  • Posted

    My LS was diagnosed just by examination by gynae. I have some fusing but no white patches. No doctor has said I need a biopsy. Perhaps you can ask the nurse why you need one if symptoms are obvious.

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  • Posted

    My gyn tried to do a biopsy after I had been to numerous appointments for over a year without relief. I had asked to be referred to the vulvar pain specialist, so he said they would be requesting it anyway, so if we went ahead and did it, they could at least have the results at my first visit. However, I guess I've had so much nerve pain the last year that he couldn't get the area numb so we didn't go through with it. Of course, I was scared that the specialist would want to try, but she looked and said that it was definitely LS and she saw no reason to do the biopsy. She said she only recommends a biopsy 1) if the diagnosis is not clear or 2) if an area is looking suspicious as being cancerous.

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  • Posted

    You need to have a Biopsy to confirm the presence of LS - otherwise you will ALWAYS be dealing with suspected LS, only! I had a biopsy and it is relatively painless. A very small sample of skin tissue is required for this, hurts far less than cutting yourself accidentally and heals much quicker than that.

    I would recommend what the Nurse Practitioner is suggesting you need to do ....

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    • Posted

      Maybe it isn't as easily diagnosed in men? My gyn is a vulva specialist, has many LS patients and never mentioned a need for a biopsy. Her diagnosis wasn't "possible" LS, but that I had LS. Personally I would not subject myself to a biopsy unnecessarily. US doctors tend to be test crazy if anything, so I am comfortable knowing if the doctor had any doubts tests would have been ordered. Can't speak for UK system however.

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  • Posted

    Hi !! i had one to diagnose 5 years ago.... came back Ls confirmed. Just had a second one 6 months ago for hyperpigmentation... i felt nothing with first one but second one ...i think he didnt wait enough before cause it hurt a bit. Both times healed very well and fast. for me it was a positive thing to rule out cancer. My gynacologist is head of gyne dep at Biggest hospital in Québec province and president of the order if gynecologists of Québec and i follow what he says. i think it is part of being followed properly with this condition. but then again. its my opinion. good luck... ❤️

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  • Posted

    I had two a little over a week ago. The numbing shot is the worst part and it is a small needle.

    I was very anxious as well and I will tell you it was not as bad as I made it in my head.

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  • Posted

    1. Hi, I had colposcopy biopsy last September, a bit painful but the heal

      ng process was fine. lichen sclerosus was ruled out and the pathologist informed my gynecologist that I had inflammation of the epidermis.

      This was a huge relief until 3 months after biopsy, white skin appeard on my clitoris. My doctor wrote to Gynecologist who said for me to continue using clob and that he didn't need to see me. I feel rather confused about all of this especially when I thought that clob shouldn't be used on the long term. Has anyone else experienced this, could this white skin be scar tissue, I look forward to your reply.

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    • Posted

      Barbara, it sounds like you need to see a Genital or Vulval Skin Specialist - sounds rather strange people writing to one another - what is wrong with Medical Professionals seeing you in person to see how you are getting on?

      You can ask your Doctor to refer you to one, or simply do an internet search for a one in the region in which you live, or nearest large city ......

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    • Posted

      barbara, why would you have scar tissue there? Is that where you experienced the inflammation? As I understand it with LS the white areas are plaques although in my case I could barely see anything. I'm beginning to think it almost doesn't matter what version of skin problem we have the only treatment for them is steroids. Of course LS has the extra added punch of anatomy actually disappearing whereas with psoriasis skin seems to thicken.

      Did either doctor tell you it is possible to have a false negative with a biopsy?

      From ACinternist:

      The good news about lichen sclerosus is that we learned in 1988 that you can stop it in its tracks,. Topical steroids are the first-line treatment of choice and should be applied once or twice daily for four to 12 weeks, then tapered to once daily to twice weekly for maintenance.

      This is such an important message...If you stop steroids, the disease will come back. It's a chronic problem that isn't going to go away.

      The first line of defense comment is interesting. Does anyone know of a second? Also, what on earth did women use before 1988?? I use a weaker steroid than clob. Although my gyn had me using a protocol of twice a week she has said if I have any indication of it coming back to use it as often as I need to. She is a vulval specialist.

      Please keep us informed. Hope it calms down.

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