To think that you shouldn’t need to have HPV to access a smear test?

[Amima]

AIBU to think that women shouldn’t need to be HPV positive to access a smear test? Apparently this is the rule now. The NHS collects the sample from you and tests it for HPV. If it’s negative then they won’t do the actual test that checks for cancerous cells. All of this fuss about how important it is for women to get smear tests, and now they’ve basically put a stop to them.

I had a test beginning of the year after not having one for 7 years. Mine showed I was hpv positive with borderline cells and to consider booking for further investigation but no assigned appointment on the letter. I called and made an appointment and Went for a coloscopy where the doctor took a biopsy to check. A week later I had a letter with an immediate appointment the following day. Doctor said Cin3 was detected and removed with a lletz. I have a follow up appointment in 6 months. So within a month of the smear I had gone from borderline cells to cin3 needing immediate removal. If I hadn’t have thought to book the further appointment from that letter then it scares me to think what may have happened.

It’s perfectly sensible and the best use of resources.

Buy your body can clear hpv so even if you have had cells removed in the past you can then become hpv negative. In the past when they didn't check for hpv sunken who had cells removed would have been hpv positive.

@Amima

So what’s the point of me ever having a smear again? I don’t have HPV now. I don’t have sex with anyone except my DH so I’m not likely to catch HPV. Therefore every time I’m tested I already know I’m going to be HPV negative and they won’t screen my sample. So why would I bother going for the smear?

Can I suggest you contact your GP to discuss your individual risk factors and review the screening protocols.

That is awful.
It's changed to every 5 year in Ireland unless HPV is present.
The nurse said it shouldn't matter it is only a screening and I shouldn't depend on the results if any other symptoms are present.

I've always tested HPV negative but had laser excission for pre-cancerous cells in 2009, not long after I had DD2. Had "borderline changes" several times before which meant more regular smears (joy!). Are they saying that now none of that is necessary as it would be so likely to result in cancer if I were not positive for HPV?

I hadn't realised this.

My last smear detected borderline changes but the letter says as I was HPV negative there was no further action needed. I have just had my letter as my smear is due again. I have been with OH for 20 years so presume that this smear won't check for those borderline changes again?

@TeaAndBrie

I had a test beginning of the year after not having one for 7 years. Mine showed I was hpv positive with borderline cells and to consider booking for further investigation but no assigned appointment on the letter. I called and made an appointment and Went for a coloscopy where the doctor took a biopsy to check. A week later I had a letter with an immediate appointment the following day. Doctor said Cin3 was detected and removed with a lletz. I have a follow up appointment in 6 months. So within a month of the smear I had gone from borderline cells to cin3 needing immediate removal. If I hadn’t have thought to book the further appointment from that letter then it scares me to think what may have happened.

Did you discuss the difference between the smear result and LLETZ with the colposcopy doctor as they might be able to explain further? Alternatively Jo's Trust have an ask the expert feature.

Are they saying that now none of that is necessary as it would be so likely to result in cancer if I were not positive for HPV?
If you don’t have HPV they won’t even do the smear screening, so they won’t know if you have borderline changes or not. Because they now think if you don’t have HPV then you can’t get cervical cancer. Which is bollocks imo.

So many women on here saying they were HPV negative but had Pre cancerous cells, it is concerning. I know they have to protect the public purse and demonstrate cost efficiency etc but really this seems like cutting corners to me, looking at the cells in each sample seems a far safer even if more expensive way of protecting women.

@danadas

I hadn't realised this.

My last smear detected borderline changes but the letter says as I was HPV negative there was no further action needed. I have just had my letter as my smear is due again. I have been with OH for 20 years so presume that this smear won't check for those borderline changes again?

The testing protocol changed in 2019. It used to be that some of the samples* were tested for hrHPV after being looked at (cytology). Now the hrHPV test is done first. If your last test was 2018, then the hrHPV was done after someone saw borderline changes to see if those changes were due to hrHPV. As the sample tested HPV negative then that's why the letter said no further action needed. The test this time round does the hrHPV check first instead.

*borderline changes, low grade dyskaryosis and negative cytology when on follow up for treatment. The primary HPV pilot sites were already doing the HPV first though.

Your body can clear HPV but surely it can leave behind the damage? It does seem worrying too me. My old gynaecologist (in an eu country but had trained and worked in the uk for many years at consultant level) told me it was a disgrace that smears were only 3 yearly and that it was purely a financial reason. We had them yearly. This seems like an even bigger step back again because of cost.

looking at the cells in each sample seems a far safer even if more expensive way of protecting women
But you can’t even pay privately. If you don’t have HPV there’s no way to access cervical screening, whether NHS or private. I’m shitting myself because I had cancerous cells but they won’t do a follow up screening because I don’t have HPV.

“BelaLug0si”
Thank you for recommending Jo’s trust, I will definitely have a look.
I did try to ask the doctor but he couldn’t seem to tell me.
I have my 6 month check up colposcopy soon and I’m dreading the procedure and the results and seriously hoping for not another lletz :(

@Wineandroses3

So many women on here saying they were HPV negative but had Pre cancerous cells, it is concerning. I know they have to protect the public purse and demonstrate cost efficiency etc but really this seems like cutting corners to me, looking at the cells in each sample seems a far safer even if more expensive way of protecting women.

Where have women said this? I read posters saying their follow up test after treatment were HPV negative.

Borderline changes and low grade dyskaryosis can be caused by low risk HPV types. Jo's trust has a useful info section on HPV

@Amima

looking at the cells in each sample seems a far safer even if more expensive way of protecting women But you can’t even pay privately. If you don’t have HPV there’s no way to access cervical screening, whether NHS or private. I’m shitting myself because I had cancerous cells but they won’t do a follow up screening because I don’t have HPV.

I know, it just seems wrong! Is there any other way to detect cervical cancer other than via the smear test? Like a scan of something that you could pay private for? I half wish they would just allow women to have their cell sample back at least that way people could have it looked at privately if they were worried, although I know in reality that’s not fair on those who couldn’t afford to pay private. Also, If a woman has symptoms of cervical cancer and goes to the GP how do they check for it in that instance?

The OP has said she had cancerous cells but HPV negative

@liveforsummer

Your body can clear HPV but surely it can leave behind the damage? It does seem worrying too me. My old gynaecologist (in an eu country but had trained and worked in the uk for many years at consultant level) told me it was a disgrace that smears were only 3 yearly and that it was purely a financial reason. We had them yearly. This seems like an even bigger step back again because of cost.

There was a study published a few years ago (pre-HPV vaccination) which examined the relative risks of screening intervals. Yearly made very little difference in the UK. Countries have different policies and different set ups for screening. E.g. US had been doing annual but revised that to 5 years here The UK national screening committee publishes a review of the NHS CSP recommendations in 2019 is the most recent here

I believe some EU countries may not be using HPV testing which could influence the screening intervals in place.

[quote Sunshinedaisymeadowsxx]@Amima I am in your position too, previously CIN3 removed, high risk pregnancy since as my cervix was so weak. Recent smear.. not sent off as no HPV shown up… it doesn’t make sense at all. I had two large chunks of my cervix removed…..[/quote]
I’m in exactly the same situation. Living outside of the uk I was regularly tested for this exact reason. As soon as I moved back to the uk it stopped.

@MegaClutterSlut

So thats 5 women on this thread so far, hpv negative but pre cancerous cells. My cin3 or the other womens cell changes wouldn't of been picked up with this way of testing

Why the hell weren’t they using message boards to make this decision instead of ... you know millions of real woman’s data!

PurpleMarie Sun 08-Aug-21 00:13:07
MegaClutterSlut

So thats 5 women on this thread so far, hpv negative but pre cancerous cells. My cin3 or the other womens cell changes wouldn't of been picked up with this way of testing

Why the hell weren’t they using message boards to make this decision instead of ... you know millions of real woman’s data!

If you re-read their posters, they had HPV negative results on their followup samples 6 months after treatment. This means the treatment worked.

I'd have thought more and more HPV tests will be coming back negative as more and more people are vaccinated before they're sexually actively?

If you re-read their posters, they had HPV negative results on their followup samples 6 months after treatment. This means the treatment worked.
No. The treatment was not to get rid of HPV. There is no treatment for HPV.

I am confused. Is the test for HPV and cell changes different?

Information used by the UK national screening committee to make the decision to move to primary HPV can be read
here
See the supporting documents section.

It's also important to note that if any woman experiences symptoms such as post coital bleeding that she should see her GP about it, regardless of whether she's screened negative on her last test.