I’ve never had a smear test and I don’t want one either

[Seventeenstars]

Controversial I guess, I’m 36.
I don’t think it’s necessary, as I’ve read about my risk factors and I don’t meet the criteria. All the men I’ve slept with (without protection) were virgins and yes I know they were for sure.
I also have no family history of any cancer.
My partner has prostate cancer in both sides of his family, his dad has it currently and he’s not even been offered a screening test for this.
I find this so frustrating and contradictory when women and men are treated so differently and if you refuse smear or breast screening you’re seen as an awful person, and those who do are morally superior.
Men aren’t coerced into invasive internal examinations.
I have an aversion to having things inserted in me internally and feel I have a right to that decision regarding my body.
There are home tests for HPV available, which I have done myself in the past - all clear.
My question is why do they persist with this archaic procedure when there are other options available?

I keep getting phone calls from my GP surgery trying to persuade me to book a test. I don’t understand why they’re always pushing it, but just totally dismiss other medical issues, which has been my experience several times.
Do they get extra commission for this or something?
There are even pop up ‘clinics’ and drop in sessions going ahead near me.

Of course I know I’ll be bombarded with replies saying I’m selfish, stupid and uneducated. I’ve even read other women saying that those who refuse should be denied any medical care!
But I have done my research and I am more than aware of the implications.

I wasn’t saying that, although the first question when you need intervention is ‘when was your last smear?’ - I was suggesting that if she did develop symptoms she would NEED treatment as she can’t sort that out with a DIY kit.

No one's missing that, they're just explaining that not all of the private home testing kits are as reliable as a properly performed smear test performed by the NHS which is why the NHS is taking its time (and nearly done) ensuring it jas a proper quality assured home testing kit that it's comfortable recommending for patients

Not sure where OP has given any indication that she expects to conduct cancer treatment via home DIY kit.

I haven't seen anyone saying that exactly, but to be fair, I've probably missed some posts! And yes, an effective home test kit is important, although plenty of countries provide official self-swab kits, so it shouldn't be difficult, really.

I'm not sure why a self-swab in the GP's office isn't going to be offered as standard in the UK though (unless it is?) - then the GP can discuss any potential symptoms to look out for, ensure proper hygiene, and explain how to do the test (in private, behind the curtain). It's the best of both worlds imo.

I haven't seen anyone except you explaining that. Loads of posters have not realised that the smear test now just tests for HPV, seriously read the thread back if you like. Many are missing that.

I'm glad it's not just me! I wondered what I'd missed, haha. Seriously, the number of extremely misinformed posters who think that OP is uninformed is worrying. It seems many women don't even know why they're getting a smear. They think that the GP will be likely to visually see cervical cancer (very rare), or that they're being tested for cancerous cells.

I understand OP's rather anti-medical intervention tone getting people's backs up, but she's not factually wrong about the screening programme.

I'd argue that she's also missing the visual check for any abnormalities too, but if she feels low risk then it's her choice. It just means that any issues will be discovered late and may be life-shortening. Tbh she sounds frightened more than any other reason.

It's not difficult per se but if they rolled out a self testing method that wasn't as effective as our current approved screening methods then there'd be a lot of unhappy women if a test was offered to them which isn't effective . The home testing kits have a variety of brushed and methods. The NHS has been testing all the available options and seeing how effective each of them are by doing a mix of confirmation studies in GPs to as well as in hospitals to check which self testing kits are producing results that match a hcp collected sample. These things take time though but as PP have said it's going to be rolled out soon at first to non responders.

I agree with previous PPs comments as well that even with a self sample the visual inspection of the vulva vagina and cervix can be as lifesaving as the sample taken.

Edited to add: yes some other countries already have these but not every county has a national screening programme with our standards and checks and balances, some countries have screening of course but with gynaecologists and no in the same way we have a defined government assured programme.

Well I only chipped in to reiterate after seeing other posters pointing it out but there's a lot of comments so easy to miss.

I am so very sorry you have gone through such trauma.
We both agree at the level of the individual you can’t know. My point is that the over-treatment (of cells that would never have developed into cancer but you don’t know that) can sometimes cause harm to a person too, a fact not many on here seem aware of?
But I think they are treating certain presentations more conservatively now so that will help.

It's interesting that the UK is finding it difficult to implement an effective self-swab option when Australia, The Netherlands, New Zealand, Denmark, and Sweden all manage to do it, but I suppose the NHS moves slowly with such a large population to cater to, etc.

A visual inspection can be lifesaving, but I would think generally a woman with visual changes would be symptomatic in some way, and therefore go to her GP about it?

I can't speak for other countries, but I know NZ has a good national screening programme, with GPs not gynaecologists, and I believe Australia does too. I have to think The Netherlands, Denmark, and Sweden would have good healthcare, but I'm not sure.

I do think though that the main issue on this thread has been the massive lack of knowledge displayed by many posters, not the efficacy of self-swab kits.

Thanks for telling us.

@Seventeenstars you make some valid points about the HPV testing. They don't look at the cervical cells unless the HPV is positive. I think maybe it's too soon to have stopped this though I do see why they are doing it but it does make me wonder why we are doing them at all. If all women did their own like with the bowel screening it could free up a load of nurse appointments and you'd just go for a smear if your HPV was positive. Mind you that may lead to deskilling of smear takers ....

Re payment for smears. I just looked at our practice accounts for a couple of years ago when I retired. We got £1200 for the whole year for all our patients. That really not very much money .

A visual inspection can be lifesaving, but I would think generally a woman with visual changes would be symptomatic in some way, and therefore go to her GP about it?

This has been suggested earlier in the thread yeah. I don't know myself. But nobody who thinks visual inspection for an asymptomatic woman is important has given any stats as to what they think gets picked up that way. I suspect we may not have much data.

I am talking about MY body, no one else’s

Why post at all, then?

I couldn't give a flying fuck what you do or don't do to your body. But you're posting here with a very clear agenda in the hope that other women will agree with you and apply the same principles to their bodies. You really, really aren't here just to share your own view. You're definitely hoping that other women will think 'Wow, she's right' and come round to your own way of thinking, and that's fucking irresponsible of you.

And yes, I would say that to your face. I've said pretty much exactly that to someone's face in a similar real-life conversation about cervical and breast screenings. I couldn't give a flying fuck if you end up with undetected cervical cancer because you don't bother with screenings, but I do care if other people end up with undetected cervical cancer because you've been spouting off online about how screenings aren't necessary.

FWIW, my sister would be dead now if it weren't for routine smear tests.

@BauhausOfEliott This is misinformation leading to unfounded anger towards OP. What's truly lifesaving on a national screening level is effective HPV testing (and HPV vaccinations), not smear tests themselves.

@YouChair Following this thread and being curious, I've had a good search for any statistics or information on how often visual inspections during a routine pap smear actually detect any cancerous abnormalities, and all I've found is this:

"In 1939, [Papanicolaou] collaborated with gynecologists Drs. Herbert Traut and Andrew Marchetti on a clinical trial to study Papanicolaou’s screening test. Over three years, the researchers tested the cervical cancer screening test on more than 3,000 women. The researchers diagnosed 179 cases of cancer, 127 of which were cervical cancer. Nearly all the cervical cancer cases were invisible to the eye and visual inspection of the cervix and would not have been discovered without looking at cells under a microscope. Papanicolaou and Traut published the study’s results in 1941 and 1943."

That says that nearly all the cervical cancer cases were invisible to the eye, but of course not whether the women with visually detected changes felt abnormal symptoms, nor how many were non-HPV cervical cancers and so wouldn't be picked up by a self-swab in the modern day. It also doesn't state how many of the non-cervical cancer cases were detected by visual inspection. So no, not a lot of data!

After just having gone for two scans and a biopsy for postmeno bleeding I think you're mad. I'm waiting for the results to hopefully get the all clear on cancer. They aren't pleasant and the biopsy bloody hurt but I'd rather it be caught early.

Oh I completely agree that other countries are ahead of us on this and the NHS can be slower to implement things. No idea if those countries health systems are as chronically underfunded as ours 🫠 hopefully they aren't but it's definitely something the NHS have been doing and working on and as I say doing population research but I don't think they do a very good job of advertising what they're working on. I didn't mean to say they're finding it hard to find an effective one, what I meant was it's taking them some time to test all the options available especially when you need overstretched GP surgeries and hospitals to help you with that research it's just not quick sadly.

A visual inspection can be lifesaving, but I would think generally a woman with visual changes would be symptomatic in some way, and therefore go to her GP about it?

Not necessarily. You could have something visually on your cervix with no symptoms. Or changes on the vulva. A lot of women aren't sure what's normal for them or regularly self inspect or know what symptoms mean anything. Someone could have a lot of itching they think is probably harmless but embarrassing and not seek help and a HCP during a smear could notice actually the skin looks like it has an abnormality that means they might have some precancerous changes, but sometimes those don't even come with any symptoms.

Skin changes on the vulva suggesting a precancerous skin condition for example, can present visually sometimes long before symptoms and not every woman is regularly looking at their vulva in a mirror 🤷🏻‍♀️

And this is one of the reasons that I will never have any more smears (I had the last one at 49.) Also, they have almost ALL been painful and unpleasant! (I am late 50s now...) And I will never ever go for a breast screening. Until they offer women better ways to have a smear test, and an alternative to breast screening that doesn't involve having your breasts squashed and flattened (like pancakes) between 2 large metal plates, I will NOT be having either one again.

My Body.

My Choice.

However angry it makes some women on here, it is MY BODY. MY CHOICE. No amount of whataboutery and emotional blackmail from anyone is going to bully me into changing my mind.

That's more than fair x. When they took the punch sample in my biopsy it hurt like hell for 5 seconds. I really don't want to have to go through the hysteroscopy as well.

That sounds like a symptom in itself? I agree it's plausible there are some instances where someone comes into a GPs for asymptomatic screening for a condition, wouldn't attend otherwise and something else is picked up while they're in there.

The people bringing it up have been vague about numbers though, and I think if it's important enough to suggest it as a reason to attend, it's also important enough to be clear what we know and don't. On vulval cancer specifically, as it's more common in women who've aged out of cervical screening, there perhaps isn't much data on a link between test attendance and conditions that might go on to progress to vulval cancer.

Oh I agree it's a symptom but not necessarily a symptom women are aware of unless they look at their vulva and many women don't. Vulval cancer also can be picked up in its precancerous phases in women within the screening age as well.

Maybe that's an indication we need to do better at talking to women about what vulval cancer symptoms might be. It's important in itself.

This is called social Darwinism.

Well done op!