My experience with HPV and Colposcopy

I’ve been reading posts on this forum for a while and thought it was time to post my experience as it’s been a very very trying time lately full of bumps in the road.

I had a smear feb 22 which came back HPV+ with no abnormal cells. I was completely floored. I’ve been in a 10 year relationship so didn’t expect this at all, but I felt reassured that I didn’t have any cell changes and thought maybe the HPV would go away on its own. Was told to come back in 1 year.

I have one child, and wanted to start trying for another baby at the end of last year, so I asked my GP if I could repeat my next smear early to have myself checked out before TTC. My GP wouldn’t do this so I ended up going privately at the start of December, completely convinced this was just a sensible precaution and that all would be well.

When those results came back high grade severe my world fell apart. I spent every second on Google, I convinced myself that I had cancer. The doctor doing the smear had told me that I had ectropion and I found that this can look the same as early stage cancer and fully convinced myself I was going to die and started thinking about writing goodbye letters to my daughter. (I suffer with anxiety quite badly and have had several health problems since having my child in 2020 as well, which made my reaction to this news even worse). This result came just 9 months after my last smear and I was absolutely beside myself and unable to function. How can you go from no cell changes to severe high grade in 9 months?!

I luckily got a cancellation appointment and went in for my first colposcopy really quickly on 14th December 2022. The red area of my cervix did turn white with the acetic acid, but not the thick whiteness I’d seen on pictures. The doctor said she thought it might be CIN2 and took 3 biopsies. The results came back in 2 weeks and were CLEAR. No cell changes at all.

I was completely baffled and let myself feel a bit relieved which was naive. I think I knew in the back of my mind that this could not be accurate because of my smear result. She said because my smear result didn’t match the biopsies that I’d need my case to be discussed at their MDT meeting. The problem was, because the biopsy was clear, they told me I was less of a priority and therefore would have to wait until the February MDT for my results to be reviewed, rather than being included in the January MDT. This meant a 7 week wait to have my results even looked at.

I told them I was worried something had been missed, because my smear result was so severe. So they agreed to give me a second colposcopy in the meantime while I was awaiting the MDT to let a more senior doctor look at my cervix. I had my second colposcopy today, the 19th January.

As soon as the acetic acid was applied, a thick area of white appeared and I was immediately sure that it was at least CIN3. This was absolutely not visible at my last colposcopy in December and I have no idea why that was the case. I had 2 more biopsies taken today from this new area. The doctor told me that she still wants to wait for the MDT to review everything because there have been so many anomalies, and some of my results must be incorrect.

I’ve now had another appointment booked which I’m assuming will be for my lletz procedure but it’s not until the 15th of March.

I completely understand that they want to review the information and figure out what’s been missed and why I have clear smears and severe smears, negative biopsies and CIN3 that was somehow hiding, but I don’t understand why that’s still grounds to delay my treatment by 2 more months. Previously I could understand them being conservative with treatment and taking my case to MDT if they weren’t sure if there were cell changes/what grade they were. But now that they’ve found the cells they don’t seem to have changed the treatment plan or the timelines.

I have no idea how so much has been missed or wrong in my case. It makes me very nervous because it took 2 colposcopies for the cells to even be found, so I’m not sure how to have faith in the screening programme going forwards.

I’m sure no one will have an identical situation to me, but if anyone can relate or give any guidance or clarity I’d really love to hear from you. For me this has been ongoing since mid November 2022, it doesn’t look like they want to treat until mid March 2023. I’ll have had 2 rounds of biopsies and one lletz at that point, so 3 different rounds of recovery. It’s exhausting having this hanging over me for months and months.

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The waiting is so hard, isn’t it? It’s so hard not to assume it’s a foregone conclusion and think the worst. I’m sure someone with more experience will pop along to offer some helpful advice but just wanted to say I sympathise and that it’s still entirely possible that the biopsies will come back clear and that it was the smear that was wrong after all. Did the Doctor say anything about the white area? I know it’s easier to say than feel, but CIN3 is treatable. It sounds like you’re really struggling with anxiety around this - I’ve heard good things about the Jo’s trust helpline, if you think that would help. I was an absolute mess for a day or two after my colposcopy but the anxiety did subside - I really hope you feel a bit better tomorrow x

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Thank you knitty for your reply. The doctor said it looks like CIN3. She told me if what they see at colposcopy matches the smear result then they’d usually remove it on the day, but because of all the anomalies ive had she said she wanted to wait until MDT on 13th February. However they’ve now booked my lletz appointment and it’s not until 15th March. I don’t understand why I have to wait so long when it should have been removed long ago. Ive apparently gone from no abnormal cells to CIN3 in 9 months, and the CIN3 was not visible at all at my last colposcopy in December. It’s all so confusing and I’d just like it removed as soon as possible so I can move on with my life. I thought I’d be enjoying a pregnancy by now and looking forward to expanding my family soon.

I’m so sorry you’re having to wait so long - I can’t imagine how daunting that must feel. I definitely think the baby factor makes all of these things harder - I’ve got similar feelings (I’m 36 and would still like to have another child if possible) . Do you think there’s any chance of getting a cancellation sooner than March?x

I really need to call them and ask them why the appointments been booked so far in the future. They’ve always been pretty good at getting me in quite quickly. They’re using all the anomalies as a way to delay treatment and I don’t understand. They can still treat me and then investigate what’s gone wrong later. It’s been determined that I need the treatment now so I don’t understand it.