Can you still have LS with a negative biopsy result?
Posted , 6 users are following.
I had a biopsy two weeks ago and have been told by the receptionist that everything was 'satisfactory'. The GP wanted the biopsy to reassure me that it wasn't cancer. He had already said it was 'highly likely' that I had LS, particularly as I responded so well to the steroid cream. So, I won't know until tomorrow, when I see him, whether this means that I definitely don't have LS, or whether it means that I don't have cancer (which is a good thing!).
Does anyone know if you can still have LS even with a negative biopsy result?
0 likes, 15 replies
sue162 Cheetah
Posted
Hi Cheetah,
my sympathy, I'm the same totally confused now. I asked the same this morning to the Vulvar specialist, the biopsy was not done on the white minora which I was told in November was L S but was done further down where the skin looked inflamed and red, so saying you don't have LS when a certain area that may have it was not biopsied surely comes back as false negative I don't understand either. My red bit came back inflamed no cancer or L S but I said to the Specialist I wasn't told to stop dermovate and so wouldn't that give false negative?
Maybe be someone will clarify it with us, but on the positive side for you no cancer or VIN was found.
Cheetah sue162
Posted
Thank you, Sue. I stopped using the Dermovate two weeks before the biopsy, but that was because I had read on here that it was a good thing to do to get an accurate result. I mentioned it to the doctor and he agreed, but I don't know whether he would have told me to come off the Dermovate if I hadn't said. I think my GP is working on the basis of the treatment being the same whether or not I have an absolute diagnosis. So, for me, I think it will be managing it as best I can and keeping an eye on the situation as well!
Take care.
sue162 Cheetah
Posted
Also, sorry Cheetah. If we don't have LS how come two like tear lesions healed with dermovate and a big blood blister on my white area? Same as you how come dermovate works but might not have L S. Was it because the dermovate helps excema etc and so it healed this or even moisturised the area?
Jessicat Cheetah
Posted
When I went to my dermatologist when I first had symptoms but didn't know what was going on. He put me on dermovate for a couple of months to see if it worked as he didn't want to do a biopsy as he thought he would be certain on a diagnosis through whether or not the dermovate helped my symptoms which it did. He also said that if it was eczema the dermovate would completely clear up the symptoms not just help. So from that i gathered that my symptoms had improved but were still there slightly, so it must be LS and he diagnosed the LS. I hope this helps. I do think if the dermovate improves your symptoms there is a high chance it is LS, that is only from my experience. As some people may not respond to dermovate and still have LS
Cheetah Jessicat
Posted
Yes, that's what I think my GP is working on, Jessicat. I responded quite well to the Dermovate, but the inflammation hasn't cleared completely. Thank you.
sue162 Cheetah
Posted
It will be interesting to see what tomorrow brings remember to ask loads of questions Cheetah
victoria86572 Cheetah
Posted
Cheetah
Edited
Thanks for all your repies. So, saw the GP this morning and no cancer cells (hurray!), but chronic inflammation. They also checked for fungus! Thankfully, no fungus! No actual mention of LS, although I don't think he asked the lab to look for this specifically. One of my two remaining red areas were used for the biopsy. The doctor then said he would like to treat the symptoms as they stand, i.e. use the steroid cream etc. At the same time, he asked if the itching had returned after a month without the cream - it has a little - so I think he believes it's LS anyway, particularly as he had said it was 'highly likely'. Like you, Jessicat, after two months on the Dermovate my symptoms had improved but not disappeared completely.
Back to the steroid cream. I've been told to use the cream maybe once a week, if I need it. He's based it on the amount of itching I get - use the cream until the itching disappears. Then leave it until the next time. Does this sound OK to you? To be honest, I would have preferred a more detailed regime. However, if I continue to use bicarbonate of soda after going to the toilet and coconut oil, I would think this should limit the amount of cream I need to use anyway. Your regime sounds good, Victoria. I'm to let him know when I've finished the Dermovate so he can monitor how much I'm having to use and see him annually to keep a check on things. However, if I'm unhappy, or things change, I'm to see him before.
Would be interested to know what you all think, particularly about how often to use the steroid cream.
Thanks again.
sue162 Cheetah
Edited
Glad to hear the news Cheetah. You sound you have someone helping who is on the ball. I don't understand the inflammation thing though but then I don't know much about biopsy per se. Does it mean the cells look inflammed, if so don't they find with what or is it too complex?
Mine came back inflammation even with being tested for L S. I got told by one dr I don't have it but when I told a family member last night, they were right in what they said 'you have to be careful not telling someone they don't have something when they do as no treatment could spell disaster and be accountable especially if discharged with no follow up'so I don't agree I don't have it, especially if other people come back inflammation or does that mean technically non conclusive.
Cheetah sue162
Posted
Hi Sue. The doctor simply said it was 'chronic inflammation' and the cells were damaged by this inflammation. He didn't offer any reason why and, even though I tried to ask him if it was LS, he was obviously not going to commit himself, probably for the reason your family member gave. He just kept coming back to 'chronic inflammation'. As he's carrying on with the treatment for LS - I was concerned about whether he would or not - I'm not too bothered about a proper diagnosis. As I said, I think he believes it is LS as he initially talked about it when I first saw him and discussed the treatment with me before I had the biopsy. I'll be sure to keep an eye on the area for any worsening symptoms or changes - something I never did before and probably the reason the inflammation was so bad when I eventually went to the doctor!
sue162 Cheetah
Posted
Hi Cheetah,
i think i understand the inflammation now
. Like you say if the ointment helps and you are checking yourself that's good news for you. I never knew any of this existed. You'll know of any changes yourself as you know what's right for you and your body and what it looks like x
samantha1970 sue162
Posted
sue162 samantha1970
Posted
rosemarie22701 Cheetah
Posted
Hi there I know your post is from a while back but I was wondering if you ever got a definitive diagnosis? I have had 5 biopsies for LS so far 4 have come back as chronic inflammation. I am still waiting on the 5th. I have one white spot that doctors have been hacking away at. My doctor told me that if this biopsy comes back as inflammation then I don't have LS. I want to believe her but at this point of almost a year I am apprehensive. I have used clobetasol with no real relief and also tacrolimus also with no real relief. The only thing that has given me the most relief is estradiol cream. I hope you have been given some answers and are feeling will today. Hope to hear from you.
Cheetah rosemarie22701
Posted
Hi Rosemarie. As you will see my original post was 6 years ago. Although I was originally told I had chronic inflammation, the same as you, it wasn't till I asked to see a dermatologist, who did another biopsy, that I got a diagnosis of Lichen Planus and not LS. So, I've been coping with that for the past six years, using Dermovate (clobetasol) to keep it under control. Over the past few months the inflammation has gradually declined until now there is no sign of it. Unbelievable! Apparently, it can simply disappear, or burn itself out. Are you seeing a gynaecologist, a dermatologist or a GP? I think it's far better to see a specialist and I would certainly ask to see one if your latest biopsy comes back as inflammation. I hope that you finally get a diagnosis and good treatment. Take care.