Colposcopy Results - Vague and Ungraded

Hi guys, I’m new here so please be gentle. I’d like to state that I am not writing this to put anyone off or worry anyone in any way but I need a little reassurance and guidance.

I had my smear in early November 2023 and had the results come back as HPV positive with abnormal cells. I then waited what felt like an age for my colposcopy at the end of January 2024.

The whole appointment was a bit odd with having the anxiety build (with an extra 50 minute what which felt like hours!) and then the appointment. I should state that I do not have an issue with and have always encouraged students to do their thing! (We all have to start somewhere, right?!)

Firstly, the trainee colposcopist gave me some inaccurate facts about the HPV vaccine - not a huge deal as I already had it at 14 and I did correct her with the overseeing doctor clarifying my point. But then moving into the colposcopy itself, I then had 3 medical practitioners gawking at me.

They all looked incredibly worried at the thick white blob that appeared stuck at the top of my cervix… reassuring…! And as much as they tried they could not get it out - in comes 2 biopsies. Whilst this was ongoing they began to ask the trainee about her training to which I find out, with my legs still akimbo, that it was all online and this was her first placement. Again, no issue with this but she was then laughing and joking about how she was glad to have 2 experienced people with her as she didn’t really know what she was doing - after all, when all of your learning is online and through videos it can’t be easy. Fair enough. However, they could all see how upset and worried I was with anxiety and kept asking if I was okay - I always try to be brave so rather stupidly I said yes. For anyone reading this that is awaiting colposcopy - speak up, ask the question.

Anyway, we get all done, dressed and into the consultation room again and she was trying to talk to me but my head was all over the place. She handed me some leaflets and sent me on my way.

I got the results around 6 weeks ago. Well, what they have determined as ‘results’. This letter simply says “The biopsy performed in the clinic was reported as viral changes. As the changes detected are at a mild stage, it is not necessary to recommend any treatment at this time but it is important to continue to monitor your condition”.

Vague.

To be followed by repeat smears every 12 months.

I had a gastric sleeve just over 2 years ago so I have B12 injections everything 12 weeks and my nurse is amazing. I spoke to her about it today and she agrees the letter is a little vague and suggested I get on here and converse with you lovely people as well as put my experience in writing back to the colposcopy clinic and ask for a second opinion.

What I’ve read so far has lead me to believe that the thick white blob was the cells reacting to the acid and looking at the results table on here puts me at CIN1 (as the clinic couldn’t be bothered to grade it). In 60% of cases these will heal themselves with the immune system, however, having had the gastric sleeve my immune system is not very good and it takes me a longgggg time to heal from anything.

So, I guess what I’m here for is some reassurance or guidance on how to proceed and to find out if the likelihood is that I’m just in my own head like we all are and if I should just trust the process.

All the love, G x

Hi G, I’m so sorry you had to deal with this, honestly this sounds beyond awful. I had a traumatic colposcopy experience too and it’s horrible to deal with; even worse when your results are not explained in a way you can understand. I’ve also had to deal with these ridiculous evasive letters, I had the results from my LLETZ today in this fashion and my personal response was to call the colposcopy and ask for a proper explanation. If I’m completely honest I didn’t get one (the nurse just said she wasn’t a doctor so didn’t really know and I’d have to wait 6 months for a test of cure smear) but I did manage to get my actual histology report which was a lot more useful, and I’ve booked an appointment with my GP to discuss this now I have it and my options. Genuinely the biggest lesson I learned from that first horrid colposcopy was to speak up and ask questions and that made my LLETZ a lot more comfortable, and now that to be honest I don’t 100% trust my gyno to give me a straight answer I think I’ll be asking to see someone else. This is not the normal colposcopy experience and you have every right to explore your options, I don’t think asking for a better explanation of your results or even different options for who can treat you is remotely unreasonable. Sending hugs and solidarity this stuff is no fun at all and we shouldn’t need to fight every step of the way for decent treatment x