I went for my first smear in November 2020- prompted by a growth my partner had found in his throat and had had diagnosed as a HPV polyp. He has since had this removed via surgery. This really lit a fire in me to get my smear done. I had put it off previously due to some history of trauma that I was yet to process psychologically.
The smear came back in December 2020 as abnormal with high cell changes, high-risk HPV and moderate dyskaryosis. While I know this can happen for a number of reasons, I was devastated and had so much anxiety, shame and guilt to process. I was open with my family re. the situation which was fab AND came with some negatives: i.e some unhelpful comments re. HPV and some restigmatising comments from uninformed people. This hurt me greatly.
My first colposcopy occurred in January 2021 and the colposcopist was lovely. She thought my cervix looked normal and could only see the smallest of areas that could be associated with HPV but not cell change. From her observation, she thought the smear could be incorrect. She took biopsies of the site regardless and sent them off. I was feeling pretty relieved! Unfortunately I developed a minor infection post biopsy which left me in pain for a week and on antibiotics. The results came back from the biopsy as showing high risk HPV but no abnormal cellular changes whatsoever. I was, again, relieved! The colposcopist informed me that due to the discrepancy the case would be discussed at MDT and the smear sample will likely be retested. She suggested that we would meet again at colposcopy in 6 months time just to monitor the HPV. I haven’t really thought much of it since!
I had my second colposcopy appointment a couple days ago (July 2021). The colposcopist informed me that the cell sample from the smear had been tested against and that the results still showed, without doubt, high abnormal changes and moderate dyskaryosis. For this reason, she was going to repeat the smear and then have another look with the solution for cell changes. We did exactly that: the smear was very painful this time and it did cause some bleeding but in a way I was relieved by how thorough she was being. She applied the vinegar and told me that there is a very very thin band of cellular changes- a halo effect- around the centre of my cervix. She suggested that it would be impossible to properly biopsy this as she would need to take multiple biopsies from multiple sites and it’s simply too thin. I thought this was good news! But then she said so we will wait for the smear to come back- if it is HPV positive still and the changes are still found, we need to discuss treatment options.
It’s difficult to explain but this has left me more terrified than before. Has anyone had this experience before? A small band of change too narrow to biopsy but still with a potential need for treatment? I am really scared in all honesty. I’m not sure what to do to help my body. I’m trying not to think ahead to the potential treatment procedures but I am scared. Having children is something that has become increasingly important to me as I have gotten older and I struggle immensely with the past experiences of trauma when I go to these appointments. I want to understand what could be going on and what could make a smear show something more accurately than a biopsy can. I do not want to be under treated and I do not want to be over treated. Does anyone have experience of this? Discussion of treatment from smear results alone?
I know I am incredibly fortunate to not be in a worse situation. I do. The uncertainty and the length of time this seems to go on for is excruciating! I had also hoped the colposcopy to be entirely normal and to be discharged from colposcopy. Bit of a blow AND I feel lucky and fortunate to have skilled kind and compassionate professionals taking my care seriously. So really a mixed emotional bag!
I’d just appreciate any input from anyone who has been in a similar situation- with a small, widespread, halo of change too thin to biopsy accurately.
Apologies for rambling- think I was processing my emotions via writing this!