Persistent HPV and cell changes

Hi Hooch and welcome to the group.

I can see how worried you are, but at least the colposcopy is happening soon, and your cervix will be closely examined with biopsies taken if necessary.

I’m not sure why a receptionist at the gp was able to give you any sort of result-this is not normally the case, as they are not medically qualified. There is no such grade as grade 4 in relation to abnormal cells, or indeed cancer, so I’m not sure was this code relates to.

Abnormal cells (ie CIN) are graded at levels 1,2 and 3 depending on how abnormal they appear under a microscope. They are not cancer, but at the most serious level, CIN3, they could eventually potentially turn cancerous IF they are not treated. 

For some people, hpv can be persistent, but it doesn’t mean that a person with persistent hpv would ever develop cancer. Normally, if required, abnormal cells will be treated by a LLETZ procedure to remove them and then you would be monitored to check that the cell removal has been successful. If the CIN is low level, for example CIN1, there may not be treatment given, as you can only have a certain number of LLETZ procedures depending on how much of the cervix needs to be removed each time. Cells can sometimes regress, particularly in younger women, so that’s a possibility. You would just be monitored more regularly. 

A hysterectomy would normally only be offered for precancerous cells if you have already been through LLETZ procedures-it is not the first treatment usually offered. 

I hope your colposcopy goes smoothly for you and you get some reassurance on Monday. 

Sarah xx

Thanks Sarah

I think the receptionist was looking at the codes for smear tests as when I googled I found cat 4 high grade dyskaryosis (severe) on gov website.  She did say she wasn’t medically qualified and just read it.

I have had Lletz before - 2 years ago and I really struggled with the process.  I am post menopausal so think I would prefer hysterectomy if given a choice 

Thank you for replying - I read your profile and you are one strong lady ️

Hi Hooch 

It’s a code used to describe the level of CIN (dyskariosis) when they are categorised in the nhs from mild to severe, but it’s not an actual CIN level so that’s what I meant by only 3 levels of CIN. It could be confusing for anyone to be told this by a receptionist if they didn’t look on, for example, the nhs site where it is further explained, which is why receptionists should not be giving out information.  

I can understand if you’ve struggled with a LLETZ before and are post menopausal you would choose a hysterectomy if possible, and it may be that this will be  agreed to, depending on the findings at your colposcopy. 

However, I’m not sure if you’re aware that even a hysterectomy won’t remove the hpv virus as that’s not possible? You would need a follow up after hysterectomy surgery if you have it. The virus can cause cell changes in others areas, not just the cervix, so it’s important to be aware of that. 

Thank you for your kind comment- I did what I needed to do!

Sarah xx

I know this bloody HPV!!! After 4 years and it not clearing I don’t think it will ever go….

It seems to be harder to clear as we get older, and easier for younger women who perhaps have a stronger immune system.

I have to say that I don’t even think about hpv nowadays. I know I have it as I had an hpv driven cancer, but have no idea at any time whether the virus is active or dormant. It’s not something I give any headspace to now given my own situation, and not something that can be checked, so I just put it out of my head.

I do appreciate of course that it will be a worry for you, but any abnormal cells can be treated for you, even if not by a hysterectomy. 

Sarah xx