Biopsy needed

Please do research this thoroughly. There are many of us on this site suffering with LS and I don't remember anyone having their LS cut out before, with the exception for a diagnostic biopsy or biopsy in the case of ominous skin changes or cancer. But apparently cancer is rare for LS sufferers. I'm really concerned about the advice being given by your GP. Listen to Dr Goldsteins lecture before making a decision.

I think the poster was referring to Dr Goldstein.  T there is a link on this site, a Webinar where he talks about LS for an hour, you will need a pen and paper.  If you go to the top of the page and click on Lichen Sclerosus, then on Newbies, and then scroll down until you reach the link.  

On a separate matter it sounds like your GP is just doing what a lot of GPs do when they dont really know the answer to something...guess!!!  he's got it all wrong, what they are going to do is probably take a small biopsy from the area, I think that's all, not remove the whole white area, which is completely the wrong treatment.  

This is why it is important to try to visit a vulva clinic when you suspect LS because they see LS a lot and know what it is immediately. 

Joe,

My biopsy took longer than I expected it to, however I was having a flare up at the time it was taken.  If it is inflamed, red and hot to touch, or if there is purulent drainage, I would call the doctor for an immediate appointment.  Otherwise, if it is about the same level of pain without heat or drainage and no fever, you can probably wait until your next appointment.

As far as the lab results, you can call the doctor and ask for the results.  In the meantime, you can research the results and when you go to the doctor, you can be prepared with questions.  Write them down.

Best of luck!

Thanks ChrissyC.  I am not going to agree to surgery if he tells me that is the treatment. I guess I have to wait and see if it is LS anyway.... sometimes I wonder because the irritation, burning sensation I feel is not just localised - he said I have a white patch - but extends all the way up to the clitoris, so maybe it means it is something else.  I would have thought the irritation would have been where the white patch is.  Who knows... I will definitely look for the lecture and continue reading up about it. 

Tee hee! Bless you, no problem. Good luck with biopsy and diagnosis. Do let us know. x

Thanks, I will! Probably won't be till end of July.

Just realised I'm talking to you across 2 threads. Just to clarify - a biopsy to say yay or nay to LS is one thing and all well and good. Surgery to remove the areas affected is another matter entirely and NOT well or good.

Hi Chrissy,

I know obviously sometimes results could be inconclusive or false (although less likely), but I wonder when you say biopsy results saying yay or nay to LS, is this what you would expect the results to say?  I just wonder because I still have to wait till Friday to discuss my results with my doctor but the results sheet just mentioned candidas and chronic inflamation so I am still wondering if this rules out LS or if that could still very easily be refering to LS even though that was not sepecifically mentioned on my results. Any googling I have done has resulted in vague answers so still not concluded, I am trying to be patient but can't stop my mind coming back onto it every now and again.

Hi there Joe

A biopsy specifically taken to look for the presence of LS will clearly show whether it is present or not. BUT if steroid ointment, usually Clobetosol, has already been prescribed and is being used to relieve symptoms then this can falsely show that LS is not present. Good luck for Friday, do let us know. I am with you all the way, reliving my own experience. x

Hi Chrissy,

Thanks for your reply that is useful information, yes it was taken for that purpose/ exzma.  But yes I had been using Clob again for about the 5days before, she said it would be find though as she took the biopsy from an area that still showed changes but obviously that may have influenced the results a little...  Thank you, I just don't know how to cope if she concludes it is still something chronic like LS, it has been getting me down so much over the past few months, I am only 22 and feel like these issues mean I can't identify with my age group anymore and I feel like it has really changed who I am (for the worse obviously).  I will just have to wait and see though, hopefully I will find a way to make it better. x

For what it's worth, if LS is confirmed, I have read a study (can't remember which) that found that if treated correctly the chances of remission are very good in women under menopause.  It isn't a life sentence, but you have to inform yourself about how to deal with it effectively.  Being on this forum is a very good first step.

Margaret

Hi Margaret, 

Thanks for the hope! Yes I would like to think its a possibility... when my gyne first saw me and thought it was LS she suggested it wasn't necessarily permenant, with treatment it could possibly go, maybe with hormonal changes too possibly.  However, if it is LS I didn't seem to respond particulalry well for the steroid creams, no significant change and actually have had more negative symptoms since I started putting creams on that area.  But yeah I guess I will see  

Ah bless you! It changed who I am too even though I'm post menopause. But I do understand how you must feel at your age. Firstly there are a surprising number of young people with LS, you are not alone. Maybe start a new thread stating your age and gain support of others in your age group. Just knowing you are not the only one really does help. And secondly as Margaret says you have more chance of sorting it in your age group than us oldies . There are loads of different things to try on this forum and something will suit you. If indeed you have it at all. 

Thank you, yes I think they are all good suggestions if that is the outcome. I really hope I don't have it but at the same time it is still so sad that anyone has to go through this!

It IS it really is! We all feel that, regardless of our age. There's a grieving process to go through as you come to terms with having something so difficult. There's the shock as well as you've almost certainly not heard of it and no one you know has either and you can't believe such a weird thing exists! I still feel really angry (and it's been a few years now) that we women undertake cervical smears and breast examination as a matter of course and yet no one warns of this! But on the other hand experiencing shock and grieving is true for everyone suffering all manner of conditions. LS is not life threatening, vulval cancer risk for women with it is hardly greater than for other women. But of course I really hope you don't have it too and simply wish you good luck. I'm more concerned about your use of Clobetosol and how definitive your diagnosis will be following your recent biopsy. We're all with you Joe as you go through this process.

Chrissy x

Yes the biopsy issue.  I definitely have LS (diagnosed by a hospital consultant by sight) , but have had 4 biopsies (3 punch biopsy at one time) which all proved negative for LS.  I didn't wish to sy this, but as Chrissy says you do need to know these things.  As I said before, in a woman of your age, even if it is LS, it is not a life sentence and once managed or completely in remission, you can carry on as normal.  Please be hopeful! Love Margaret

Hi Margaret, with so many biopsies giving a negative result how does your dr justify diagnosing it by sight only?

That's the thing!  I believe the first biopsy was the wrong type (Cone biopsy) the second 3 (all on one day) were utterly confused and came back as negative for Lichen Planus, but that was not what was being tested for by the consultant. In short, it was a total B***s up.  I am very loath to submit to further biopsies, until I am sure that I am going to get continuity of care etcetera, because every new consultant/registrar I see wants to do a biopsy. I have started tio refuse and am content to let the gyni advise and keep an eye on things and if it looks sinister, then I will allow another biopsy.  I'm getting an old hand at this condition - I just wish that I could attend a proper vulva clinic, where dermatology and gynaecology come together.

 

I've heard from others that consultants experienced with LS will diagnose without a biopsy if it is visually obvious. Why put you through it if they're sure anyway. But if they're really not sure then it just has to be done. In my own case I don't actually suffer any itching or soreness. Or fusing. Just whiteness followed by atrophy. In the early white stage no one was sure so I had it done.

So your punch biopsies weren't negative for LS but for LP? That's appalling Margaret, I really feel for you. I only had a single punch biopsy and it was fine but I wouldn't want to repeat it if I didn't have to. If your consultant is sure I don't think I would even consider another one. Are you happy with the management of your condition? I DID attend a vulva clinic but only once I'd had the biopsy and confirmation of diagnosis. The consultant who'd biopsied, diagnosed and prescribed (was dermovate ointment actually) couldn't answer any of my questions or relate to my own peculiarities of the condition. He only had a set speech to reel out and I had no confidence in him. When I told my GP she was quick to find me a Vulva Clinic, not exactly local but not too far and I was very happy there.

Well I was fairly happy with the two consultants I saw on the last three occasions, but there doesn't seem to be much consistency as they seem to move on to another post before I next see them.  I would be very happy to travel to Liverpool for instance, even though it would be an hour and  a half drive.

Mine was in Sheffield about a similar drive away from me. I was lucky enough to see the same person over a 3 to 4 year period. Completely on my own with it now though. 

Dear Joe, how did it go? thinking about you x

Hi Chrissy,

Thanks for thinking of me, meant to reply before but couldn't find the thread. Basically I asked my doctor, so what do you make of my results? And she says it is annoying because it is not very clear, one of those ambiguous ones. It is positive that it wasn't obviously LS, but when I asked, she agreed that it possibly still is but steroid cream may have interfered... She is not very set on that idea though and is exploring other options, she said it is also possible that the inflammation may be entirely down to recurrent thrush and that we haven't been treating that right yet. She took a swab to be analysed for atypical candidas as apparently there are other types that don't respond to the usual medication. Thrush definately does seem to be an issues, just got results from to gp confirming I had it again last week. Obviously you can still have LS and thrush but I am hoping she is onto something here and thrush is the main culprit for my symptoms (as this can be cured!) I read a paper and interestingly it said atypical thrush can appear and be confused with LS, can produce redness and tearing like I get too. So basically I just have to wait for more tests and results again for now! But yeah atleast we haven't just hit a brick wall...

You SOUND more positive. Fingers crossed for you. Good luck love X

Thanks! Yes I do feel less doom and gloom at the moment, but it still all hangs in the balance a bit I feel, my fingers are crossed for some sort of solution though... Unfortunately due to all the stress relating to this and preocupation I have had big issues revising for my exams!  But luckily my course leader has been understanding so I can take it later in the summer. x

I can imagine. It is certainly overwhelmingly preoccupying. So good luck with your exams as well as your condition. x