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.

The bit i don’t understand is this; I keep reading that HPV can come and go in your body. So if I test negative for HPV on one day, does that mean a month later I could be tested and it say HPV positive? If the HPV is in its “dormant” state in your body does that mean the test wouldn’t pick it up and you would be told you’re HPV negative?

I am HPV positive, I had symptoms (years ago) and had grade 3 changes to my cells which caused me to need a loop excision. I am meant to have yearly smears for 10 years however 8 years in they have decided I don’t need yearly smears as I am now ‘HPV negative’. I explained I know I have HPV as that’s what caused the changes previously however they now say it’s lying dormant in my body and so I don’t need regular screening. I’m baffled how they know it won’t flair up again tbh! So yes I agree with you, it’s stupid and they shouldn’t just test for HPV 🙄

@Twoforthree it's a bit worrying! The only way I can see round it is to pay for an MRI scan privately maybe once a year or so.

All my follow up appointments have been over the phone due to Covid as well. I've not been examined since my last treatment in hospital in June last year.

I did have an MRI in July this year which showed no apparent signs of re-occurrence. So that's something.

@Amima

So basically they are saying you can't get cervical cancer without getting HPV from a sexual partner first? 99% of cervical cancer is caused by HPV. Women in the other 1% don’t matter, they’re just left to die of cancer.

Yup. It sucks.

They did a similar thing at the time when they first started vaccinating all the virgin girls at 13yrs old against HPV. My friend was around 5 years younger than me and asked me about cervical screening procedure. I told her to get one because it should have been done by now but when she asked she was told she couldn't have cervical screening until 25 years old, that was the new policy. So it went from 19yrs old (or 3yrs after you become sexually active, if that was under 16yrs old) and every 3yrs thereafter, to leaving people untested for almost 10yrs from the get go.

I remember in my teens the national campaign that was something to do with Cosmopolitan magazine (and I expect various women's charities perhaps?). It was to stop the postcode lottery. Some women were only getting cervical screening every 5yrs instead of 3yrs. Some places were using a shorter scraper thingy that didn't reach the cervix. The campaign was successful and rules were changed so it was every 3yrs and they had to use the long scraper thingy to get cells from the cervix itself. This was because women were dying from cancer detected too late with the 5yr screening interval and the shorter scraper was obviously ineffective.

Now's all going backwards again with the rules.

I paid privately for the vaccine once that became possible. That involved a negative test first. Based on this, there's no point me going for the smear then?

Changes to screening will actually prevent a great deal of harm and anxiety that used to be inflicted on women (I know this might be controversial).

So many women thought they were ‘saved from cancer’ after having treatment for abnormal cells detected while they were under 25. The reality is that the vast majority of these cells would not have become cancer. Instead these poor women were subjected to invasive treatment, anxiety and potential issues with future pregnancies.

I was never sure what the situation was with the vaccine if you're not a virgin. If you've already got the virus in your body but it's dormant, can the vaccine protect you? Does anyone know for certain? Because if someone has a negative HPV test that doesn't mean the virus isn't in their body just that it's not currently active. So does the vaccine not only stop you catching the virus but stops it activating if you've already got it? The whole thing is confusing.

bluetongue I suppose I just find it a bit of a coincidence that they decided to adopt this policy out of the kindness of their hearts around about the same time as they needed to find money from somewhere to vaccinate all the virgins.

I mean, they're not seemingly bothered about putting women through what can be an upsetting, painful and, it appears, unnecessary cervical screening procedures, even though in a lot of cases they aren't going to test the sample for cancer and they could do the HPV test some other less invasive way. Where are their kind hearts in this scenario?

My best friend a few years back was diagnosed with cervical cancer after pushing her gp no HPV now infertile

I'm going to suggest again that posters read the links I've posted because most of the comments here are answered in them, with the evidence of why the programme is run in this way:

• age of first screening
• primary HPV screening
• test of cure
• screening intervals and the evidence for 3 or 5 year screening after a negative test

All of this has been based on studies comparing approaches and data analysis of the outcomes.

Cytology after radiotherapy - the cells can have bizarre changes in them which are incredibly difficult to interpret, giving a diagnostic dilemma for the cytologist and then very difficult for the clinician to manage that woman. That's why MRI follow up took over.
Again can I suggest using Jo's trust "ask an expert" facility to get more information on this.

Alternatives to the current speculum test are in the process of being trialled, search for YouScreen on Google.

• what borderline changes are (see the cytology reporting documents on the NHS CSP site)

It might also be helpful to understand what screening programmes are, the BMJ had some good summary articles. It isn't possible to design a screening programme to identify 100% of people with a disease.
Why? Because of the sensitivity and specificity dynamic.
Increase the sensitivity to pick up more cases and the false positives go up, leading to over investigation and possible over-treatment.
Increase the specificity to counteract this, and you risk missing cases.

The English pilot sites started trials of secondary HPV testing in 2001. This was six or seven places. National roll out was in 2012 (secondary HPV testing). Depending on when posters who've mentioned not being told about HPV were diagnosed it might be that you weren't in an area covered by a pilot site.

The NHS CSP main summary page is
here
with links to explanations and evidence base for the organisation of the screening programme. There's also links explaining what the test is.

This thread has made me worry again.

I went for a smear in Nov 2019, nurse couldn't see my cervix properly and I also had been having bleeding after sex so she sent me for a colposcopy.

Went for a the colposcopy and it came back as high risk HPV, but all clear on the colposcopy so no need to return for 3 years.

I'm still having the bleeding after sex. I called the doctor in May and they arranged a face to face appt to have a look at my cervix, doctor called me and cancelled as she had to self isolate, I haven't got round to making the appt again,

Should I be worried or not? GP seemed to think as the colposcopy was clear the bleeding wouldn't be related to that and could just be because of a polyp or my coil (I had the coils for 2 years before the bleeding after sex started)

I completely agree with you op. I've had hpv detected in my smears for years. Two years ago, I had to go for a colposcopy (spelling?) which fortunately was fine. Then my smear last year was completely clear apparently. So I'm back to 3 year smears. I'm going to go private for yearly ones. I'm not waiting 3 years to see if the "abnormal " cells detected a couple of years ago have developed into anything else.

I agree OP - I do not and cannot have HPV because I don't have the sexual history for it - and since they won't screen for cancer without it, the govt is basically just saying people like me should fuck off and die.

this site suggests that not bothering to test for actual cancer is an international problem too - www.cancer.org.au/cervicalscreening/about-the-test/what-about-non-hpv-related-cervical-cancers

says a lot about the global attitude towards the value of women who don't make themselves sexually available

@nosyupnorth Unless you are a virgin and have never had any type of sexual contact, you could have dormant HPV.

@Hopeislost I'm not a virgin but my partner and I were both virgins (and still only been with each other) so I'm guessing this is the same for me?

(As in I can't possibly have it)

Apparently this is the rule now.

Where did you get this from?

I"ve never had HPV. Had a smear test recently just as I've always done; received a letter, made an appointment and that was that.

I am pleased you started this thread. I raised the same points with the nurse who did my smear test and she got really quite arsey with me.

@Trinacham HPV can be transmitted through close skin to skin contact, oral or anal sex, so being a virgin doesn't necessarily mean that you can't have it.

@hopeislost yes i have never had any sort of sexual contact. that is why i am pointing out that it is messed up that they only bother to screen for the std linked type now even though there are other types, yes the non-hpv types are less common but 1% of several million women in the uk is still thousands of women, who if they don't have hvp will not get their cancer identified and offered treatment because when it comes to the health of women it is considered okay to cut corners.

@GreenFingersWouldBeHandy the rules changed a few years ago, they still call it a smear test and advertise it as protecting against cancer, but now they check for HPV first and only look for cell abnormalities if you have it. They are quietly stripping away the protections in order to cut costs while letting people think they are getting a full check.

Nuffield Health offer dual screening. I go every 2 years due to previous cin 3. I dont fully trust the new system.

Honestly this is making me think there's no point in me going anymore, at least for NHS testing. I was vaccinated against HPV three years before I became sexually active, and have had a very low amount of sexual partners so in theory I would be very low risk of having HPV.

@bailey999 how much does that cost for the dual screening? Think I’m going to look into it . Would subsequent treatment be on the NHS do you know?

Cost cutting by the nhs. As long as they catch the majority of cases, they don’t give a shit about missing a few. Women will have to die before this is rectified.