I have been put on the waiting list to see a dermatologist, they will, of course, be doing a biopsy at this appointment. My worry is, that since my appointment will not be for at least another twelve weeks, I will have healed enough with using my Dermovate that there will be no sore patches for them to take a biopsy of. I don't really want to stop using the cream as having a flare up is so distressing and painful, this is the last thing I want to have again. But, would it be better if I did have a flare up so that they have something to take a biopsy of?
NO that won't make a difference. a biopsy would detect cell differentiation without it being visible to you and in fact if too sore you could be turned away.
g may i ask why you feel you need a biopsy? its just a visual diagnosis of LS can suffice....if an experienced person has seen you.
IN my opinion - Don't let a flare up happen. The biopsy will show the LS anyway, is what I think.
I am just assuming I will be having a biopsy. I was visually diagnosed by a doctor almost a month ago and that doctor prescribed me Dermovate and said she would arrange an appointment with a dermatologist. Recently I saw another doctor to ask about the possibility of getting estrogen cream to use as well as the Dermovate and she said she was loathe to give me more stuff to use in case it cleared up too well and left nothing for the dermatologist to do a biopsy. So it was this second doctor that has said I will probably have a biopsy
Thank you hanny its a relief to think I won't have to encourage a flare up
thats ridiculous g ...and if i'd been the nurse attending on that Consultant i would have told her so. I frequently used to speak up for patients...especially to remind the strapping types that they were not playing rugby when they used the tackle approach during gynae exams!....but i find they have these lost moments and a bit of gentle humour brings them back to earth. I am sorry that you were given innappropriate advice on this occasion but I assure you a biopsy does not require inflammation to be present. I agree with the conclusion that you and hanny have come to between you....but more particularly that you already have had a diagnosis? is this correct? do you however still have some doubt about your condition as this would be another matter.
have you seen photos of LS and been able to compare yourself with them? are you comfortable first of all with looking at photos of the disease...not wishing to presume anything. would you actually wish to have a biopsy? these are questions you may wish to consider x
I'M NOT RECOMMENDING A BIOPSY...IN FACT THE OPPOSITE
why put yourself through that pain when you've had a competant person give an opinion. i'm wondering if this perhaps is the issue? Were you perhaps not confident in the person you saw first and feel a sense of doubt.... you can ask for a second opinion and still just have a visual examination if you felt the first doctor was unsure. i really hope this helps...i sense this is a difficult thing for you. even biopsies give false negatives....its not straight forward...thereafter there is then the issue of treatment and you don't want to let that get outside of your control either!!
I was researching LS myself when I had had problems for a while. As soon as I read up on LS and in particular looking at pictures and comparing this to myself, I knew straight away I had it. I don't know if I want a biopsy and add more scar tissue to what is already there. All I would like really is some peace of mind to know nothing is cancerous. If they have to do a biopsy to find that out then I will have one
thats right g you don't have to be sore on examination.
Definitely do not encourage a flare-up, because they can cause permanent damage. And if the other two doctors knew everything the dermatologist thinks, you wouldn't need to go.
I don't know if they will do a biopsy, I am just going by what others on here have said. I have never been to see the dermatologist before and really don't know what to expect. I believe the doctors diagnoses of LS is correct and I don't need a biopsy to tell me that. I really don't know what they will do
i think you've been very wise and entirely responsible.
please enjoy your visit to the dermatologist. they are lovely people and you will be well taken care of...within the confined limits of their knowledge as you'll appreciate... they'll prob give you a further prescription of the same thing plus something made out of petrol to wash with...but the intention is kindly!
although ultimately you will be your own healer and will grasp this in your own way the people you meet along the way do care about you and will wish you well... i am sure you will perceive this and receive great benefit from all this kindly attention....so don't worry g. i know this is easy to say ...but theres nothing nasty or painful ahead in terms of proceedures. if you maintain an alkaline diet its is very difficult for cancer to grow and you can self monitor as you have been doing. if i may suggest don't let cancer even enter your mind. many female GP's and medics decline these breast tests and smears...so often these come up with false positives and conversely false negatives ...so to say the least it is a very inexact science. but more importantly these tissue tests have limited value except to the health care providers who are keen for the remunerations to continue..... i realise this is an apparently unusual view but the stats are there as to the number of female medical practioners who themselves decline the tests...they know better about their lack of benefit.
i hope this is helpful to you to think about. i choose to mention it to you as i think you're someone who can see things in a positive light....so again there's nothing scary please rest assured. if you did want a biopsy that is something within your control which you could request at any time. i do hope this helps....you don't need to put on a brave face here ...and out there you can work with whoever comes your way....within their limitations
we've all had a warning to pay attention to our health....you've been part of our group effort to exercise creative thinking and to influence positively our outcomes so you're well on track and thinking outside of the box.
lots of love to you from marey x
They do a visual check for cancer at your annual ( or whatever) exam. My sore patch comes and goes,( quite bad these last couple of weeks actually ) but always there to some degree for 12 years or so now.
You would be lucky if it healed up completely. As Marey said, if it is too sore they would have to forego any biopsy,from that part anyway, if indeed one is planned. I rather think you would have beeen warned if that was so.
don't worry.
I have all the symptoms described by people on this site, but my GP was very on the ball and noticed it very early on 7 years ago. She prescribed Dermovate and I was very good at pplying it. Subsequently when I've had biopsies (4 in total - 3 on one occasion when I wasn't warned in advance) - all the biopsies were negative for LS, but nobody actually gave any alternative diagnosis. I feel like I've been left high and dry. Manifestly there is still problem, but a lack of LS or cancer means that I am no further on after 7 years and the medics don't know what to do with me. I feel that this may be due to my doctor's original sight prompt treatment.
Three biopsies at once must have been really sore!
It sounds to me like you've been in remission awhile. Have you continued to use Dermovate?
I've read that even if the biopsies are negative, doctors are encouraged to diagnose LS and treat it if it looks like LS. If they diagnose it visually anyway, why do the biopsy (unless it definitely looks like cancer), right? Biopsies are not always positive in LS. Both my practitioners thought that I would get a biopsy, but I resisted and said that I would feel that I couldn't continue with them if treatment was contingent on a biopsy. They both stated that they could do a clinical diagnosis after I said that. Hmmmm... (wish they said that before I had to say that I would leave if they insisted on a biopsy). My concern is that likely is more about protecting their liability, documenting and supporting their treatment inteventions than about our welfare. I did not want a biopsy because the tissues are already inflammed, thinning, and traumatized. Taking a chunk out of such delicate, tender, and upset tissues does not make good sense to me. I and my practitioners will watch and make sure to notice any changes that could indicate malignacy, but I don't expect that to occur and I do take good care of my health. It does make sense to have input into our healthcare and see our doctors as co-adventurers, but not as gods. They're often trying to figure it all out, too. I waited several months for treatment because I thought that I had to have a biopsy and didn't want one. I regret that I didn't take charge of my healthcare sooner by gathering a team around me that support the reasonable decision not to biopsy if there is no evidence of malignacy.
I like the way you put it:doctors as co-adventurers, not gods.
When an honest doctor tells you: We know so little. We all need to be on board, don't we. Patient and doctor need to work together for the best result known at this moment in time.
Hi Morrell,
it's been strange. I've just emerged from a year long flare up (stress due to my mother's illness and death) in which I had to change the undergarments and type of trousers I could wear. It felt worse than ever before and I could not tolerate any friction (certainly not sex). I was using the Dermovate 2x daily when it was really bad, then cutting down gradually until now I'm on once a week following the regime suggested by Goldstein (warm baths etcetera). This has been really good and I've feeling far less anxious than I was during the real flare. Th thing that confuses me is that it was flaring when I had the biopsy. This logically indicates to me that this thing (certainly in my case) is an outside in thing. in other words, something is happening on the surface of the skin which is damaging it and eventually penetrating to the lower layers which then will show up on biopsy. So I'm back to investigating diets and the composition of pee and poo again, which are the only topical things which go near that area in my case (NO soaps or shampoos etcetera). If stress has an effect on the composition of either, that may be part of the answer. I do not have any active auto immune problems that have been diagnosed.
By the way did you get my email re survey thang?
Margaret, one way to see it is LS is an inside-out thing, the inflammatory cells are down in the 'basement ' layer under thickened half-dead skin which becomes very fragile on top, susceptible to any irritants. But then they also say LS sufferers are cursed with this irritable skin. The tendency to have this particular type of chronic inflammation is genetic.
I find stress gets my psoriasis going, but not the LS. I'm also seeing a horribly symbiotic relationship between yeast and LS. I found another doctor's Powerpoint presentation yesterday and she definitely said yeast is often a 'secondary infection' with LS. Stress gets my yeast going, so last week after a difficult day I got thrush and now my perineum has a bigger white area than it's had for many months and is starting to tear. Getting the sugar and coffee out of my pee and poo made a world of difference in a couple of months. (I had a kiddie-size ice cream cone at the end of that upsetting day last week, so that made it worse.)
I have tried to search in Google Scholar for articles refering to the changing composition of excreta, but have not found the right search words yet. The concensus seems to be that changing diet won't make any difference, but I suspect this is not wholly true. I also believe there is a genetic susceptibilty to this, which is all bound up with hormonal changes.
My skin (all over) generally feels delicate, but when I was younger I was covered in thickened tiny spots on the tops of my arms, legs and the sides of my face (not conventional acne). These were always an embarrassment to me and the area was red in colour and irritable. This became worse if I were anxious (I was a nervy, depressed teenager). I went on a high estrogen pill for a few months and everything improved including my psychological state. This latter may have been that I now felt like a grown up.
So having gone through the menopause and my estrogen being lower, i think I have seen the joining of two conditions - thinner skin and possibly more acidic excretion. I did go into the effect of oxalate crystals being deposited by excreta and this may still be a problem (a mechanical one - like sand deposited on skin which then rubs). This is in line with my family history of kidney stone (made up of oxalate crystals I think).
Sorry, I blow very hot and cold with this whole thing, often prefering to try and forget it until next time to put on the Dermovate. It generally starts to warn me that I need to.
It's good to talk to someone who gets it though. My diet has changed for the good, although I have 'done' chocolate yesterday. We'll see if there is a difference.