Posted , 15 users are following.
I saw a gynaecology oncology consultant yesterday, who confirmed that I don't have vulvar cancer (hurray), but said quite casually that 'there is significant loss of vulvar architecture due to lichens sclerosus'. I tried to push him on what this meant and he said that both sets of labia have been reabsorbed into my body and that my clitoris is also being absorbed. I asked what could be done and he got impatient and said nothing, that it was very common and that he would refer me to a dermatology clinic. I asked again for more details and if it was associated with the split in my perineum, difficulty in passing stools and finding sex very painful and he (really, I'm not exagerating) became almost cross and said yes, the scar tissue is in a figure of 8 pattern around there but it was very common and that I shouldn't worry about it! He then stood up and motioned for us to leave, which we did. DH did say when we came out - well that was fast - we were with the consultant for just under 15 mins.
So, here I am, trying to be happy that I don't have cancer, but feeling completely lost and so, so upset...
I'm stunned that the loss of my sexual organs is nothing to worry about? Does anyone have any advice about where I can find a consultant in the UK who specialises in 'loss of architecture' and lichens sclerosus?
0 likes, 25 replies