I was going to update my previous post but since this one has quite a lot more content I thought I would open a new thread for those interested in biopsies.
I had the biopsy done and received the results on Saturday - to say they are confusing would be an understatement. I will write out the histo report as it is:
"Mild epidermal acanthosis and early superficial follicular plugging. Mild vascular ectasia within the upper dermis and this is associated with mild perivascular and periadnexal inflammation. There is early exocytosis of lymphocytes into the basal epidermis and basal hair follicular epithelium however, a lichenoid reaction is not obvious. No fungal organisms, no obvious dermal scarring. Appearances are mildand non-specific and are not diagnostic of lichen planopilaris. Neither however do they completely exclude it"
I am a scientist and although I understand these words on their own I am not a dermatologist, so I cannot decipher their meaning in this context. Although I know the terms, seeing them together does not enable me to say "this is typical of (disease)" because I simply don't have the knowledge or education
Now, the dermatologist who I saw originally was convinced it was LPP, but the derm who did the biopsy was not at all fussed and said "looks like dermatitis to me". The first derm (the one who was certain it was LPP) has said in her letter "The findings are non-specific, they are not diagnostic of lichen planopilaris however I do note that it may be so early in the course of the condition that there are insufficient findings to make this diagnosis". She has then said she wants to continue to follow up with me and that they may repeat biopsies in the future.
So basically I am no further forward. I can truly say this is a worse position now than when I started. I had made peace with the condition and what was going to happen, and was waiting and waiting to start treatment or any kind of progress. However now I am very confused. I apparently don't have LPP that they can state, but I also can't put any of this behind me and move on because I am going to have to keep going back until they decide.
I have been back and forward to the hospital over the past 4-5 years and I feel as if my life revolves around waiting for someone to tell me what's going on. I was so looking forward to getting on with things and I feel very wearied now.
I understand a lot of you may be saying I am lucky, but I don't feel it because as mentioned it can't be ruled out that I don't have the condition either.
Would appreciate any input or experience anyone has