Women failing to attend smear tests

[guardianfree]

Women generally but young women in particular - 1 in 3 not attending.

www.independent.co.uk/news/uk/home-news/jos-cervical-cancer-trust-charity-smear-tests-terminal-illness-health-wellbeing-hospitals-a8171011.html

I know they're unpleasant (and often feel humiliating) but what can we do to reassure women that they can be life savers?

'expatinscotland im sorry you have had such a horrendous experience. If a nurse can’t locate a woman’s cervix she will be referred to Colp or Gyn where they will try and perform a smear test. I look at smears every week where the woman is sent to a colp/gyn just for a smear test, no biopsy involved.'

If you have even bothered to read my posts, which you didn't, just honed in on 'women can be referred to colpo/gyn for a smear' (which isn't entirely true) then you would have also read that I have never had a 'horrendous' experience with smears. In fact, I find them painless. But don't let that interfere with your agenda of patronising women who do experience pain during them by saying they can just go to colpo clinic for a smear. You also completely overlooked the multitude of women who have had HCPs put them in pain trying to find their cervix and/or do a smear test.

Just saw this on page 2 from @Phoenix1973

"I hate smears so much I have a double brandy before I go in. And I don't even like alcohol. I take it to get through that.
I was lucky as I was tested before the start age was 25.
They found pre-cancerous cells when I was 21. I had laser treatment and was fine physically. I've never been right mentally since."

I'm so sorry that's happened to you but the reason that the start age has now been raised to 25 is that women younger than that frequently have abnormal cells that will return to their normal state on their own. So the chances are that the treatment you had was unnecessary, and as you say, it's had a really bad effect on you mentally.

This is why Jo's trust ARE wrong to try to scare women into having smear tests by exaggerating the risks hugely. I've certainly e-mailed and tweeted them to tell them that. They are a single issue tiny charity beta.charitycommission.gov.uk/charity-details?regid=1133542&subid=0 with a talent for publicity. If you want proper accurate information on cervical cancer go to the Cancer Research website. Not Jo's trust.

I wouldn't mind Jo's trust if they gave factual, balanced, information, which is that cervical cancer is a cancer a woman has less than 1% lifetime risk of getting and that screening can reduce that risk, but we don't know by exactly how much. But instead, if you look at their twitter feed, it's full of stories about women who missed their smear and got cancer. The plural of anecdote is not data.

Of course we can't toadsforjustice.

As I said upthread, it's genuinely fascinating the level of anger and contempt that opting out of smears inspires in some quarters. There's a good dissertation to be written on the reasons for that rage, I think.

No you are not allowed to. The charity supposedly for women and promoting awareness of cervical cancer doesnt want you make a decision they dont agree with.

For anyone who wants to feedback to Jo's trust, they have a survey up.

www.surveymonkey.co.uk/r/cervicalscreeningforsurvivors

This is specifically with regard to survivors of sexual assualt, but you don't have to be a survivor to fill it in. I do think it's worth telling them (politely) what you think, hopefully they will get the message and refocus their efforts on improving service provision, not reprimanding women for not having smears.

@RedToothBrush - Jo's trust assure me that they recognise screening is a choice, but that message doesn't seem to have got through to their PR people.

I would urge people to contact them directly. I doubt with their tiny resources they're trawling mumsnet to see what we think.

Why is there nothing about the risk of screening on their website?

I dont buy it. Sorry.

As I said upthread, it's genuinely fascinating the level of anger and contempt that opting out of smears inspires in some quarters. There's a good dissertation to be written on the reasons for that rage, I think. I think there is a fair amount of anger from the people who do opt out. If we say we don't find it painful we are liars. A bit of tolerance on both sides wouldn't go amiss.

After reading all this yesterday it made me think, when you look at the stats for most women the chances of cancer of the reproductive organs/breast are relatively low. I've seen both my grandmothers, my mother and 3 aunts die of these cancers, I've seen cousins diagnosed with them (thankfully survivors) It isn't surprising that people have different perspectives is it.

I am so pleased that I started this thread - I took the charity's words at face value (that'll teach me) but the posts on here from so many women have been a real education. Not just into the issues of having smears but also issues of consent, risk, aspects of health and sadly the occasional demonstration of a lack of empathy and kindness towards women.
Thank you everyone.

@RedToothBrush, no I don't believe them either. but if enough people contact them to say how seriously pissed off they are, they just MIGHT take notice.

BTW, I also complained formally to the BBC about what I thought was their seriously biased coverage of the issue - they were just reading out the jo's trust press releases more or less. Radio 5 breakfast was particularly bad - presenter haranguing women to get tested, no balance whatsoeer.

I do wonder if the designer vagina thing has anything to do with a woman's self-consciousness. The media and porn have a lot to answer for. 20 years ago, we didn't worry about pubic hair or whether we looked funny down there. I didn't anyway. Now I think about it.

@guardianfree - thanks for saying that, it's great when we can actually listen to each other and share experiences. And bust some myths in the process hopefully.

@Grannytomine - breast cancer actually IS common, relatively speaking, I think the lifetime chance of a woman getting it is now up to 11%. It's the cancer thats been most common in women I know, with colon cancer second. But the leading cause of death in women is now dementia. Previously it was heart disease - how many charities talk specifically about heart disease in women?

I think there is a fair amount of anger from the people who do opt out. If we say we don't find it painful we are liars. A bit of tolerance on both sides wouldn't go amiss.

Granny this is a discussion about women failing to attend smear tests. That is literally how the issue is framed. There aren't any charities devoted to persuading women not to go, utilising emotional blackmail tactics against those who do. Women who go for smears isn't posed as any kind of public health issue, despite the fact that some of them will inevitably be having treatment for issues that would resolve themselves and thus are costing the NHS more. Those of us who opt out are not starting threads discussing how to persuade women who've decided to go for a smear not to, even though it's very clear that sometimes women who attend haven't had access to sufficient information to make an informed decision.

Some people being told they're lying about smears not being painful to them, after several posts of guilt tripping, patronising and all out anger directed at those opting out is not in the same league and thus does not belong in the same paragraph.

Snowdrop18

Yes they do, te tge flu jab, particularly with those over 65 or at risk groups, those with asthma etc.

RogueBiscuit

Yes I'm a man....yawn....... I just like to look at information from medical professionals rather than some tin foil hat conspiracy theorist.........

Interesting discussion about the cervical cancer that was missed by smear tests and despite the women saying they knew something was wrong www.jostrust.org.uk/forum/cervical-cancer-newly-diagnosed/smear-missed-my-cancer-anyone-else-out-there-same

PramWanker a discussion involves people coming from different sides of the issue otherwise it isn't a discussion. Actually calling people liars does show a level of anger to other people which is just as unacceptable from one side as the other. If you want people to acknowledge your feelings a good place to start is acknowledging theirs.

Why is treatment after screening inevitable? My understanding is you are invited to go back, you won't be treated against your will, you have to give consent. Some people prefer not to know, some people prefer to have the information and then make the decision, both are valid and I understand both. I got hassle to have tests during pregnancy that I declined, the doctor wasn't happy but I chose to continue my pregnancy without knowing what the tests would show. I could have had the tests, discovered there was a problem and continued with the pregnancy or I could have decided to end the pregnancy, my choice. Of course I could have had the tests and discovered there was no problem but I didn't choose the test. With the BRCA1 I have decided to have the tests, if the test shows I have the mutation I will then make decisions about what to do next. I have relatives who have declined the test, some who have had the test and been clear, some who have had bilateral mastectomies and ovaries removed and others who have had a positive test but decided to have monitoring and wait and see. None of those decisions are wrong and they all have a perfect right to do what is best for them. At the moment I have no idea what I will do if the test is positive but I do know I will make the decision.

I think there is a fair amount of anger from the people who do opt out. If we say we don't find it painful we are liars. A bit of tolerance on both sides wouldn't go amiss.

I have no problem with women who want them. I do have a problem with people who harass me, bully me and tell me im selfish stupid and ignorant for making an informed choice.

This dynamic means I reserve the right to defend myself and think its needed to speak out so other women in the same situation know that they are not alone.

Also I think it important to highlight real reasons why women are declining, rather accepting this narrative of women who dont have them are stupid, petty or trivial because actually, if you are serious about increasing rates of uptake then those are the things that will be more effective than methods that are currently pushed.

But yeah go on, push the idea that I'm the one who is intolerant.

breast cancer actually IS common, relatively speaking, I think the lifetime chance of a woman getting it is now up to 11%. But a big difference to 90%. So for women in general the risk is low compared to women with the BRCA mutation. At the moment I would settle for the 11%.

I have a dodgy cervix, I can’t get past 3cm it twists in ways it shouldn’t. It took 1hr 45m to fit a coil which failed by the way, got pregnant and had a miscarriage. on average it takes 30-45 for a smear because I have to get in all sorts of positions so they can get to the damn thing. The small talk runs out, my face is burning because the nurse usually ends up calling another nurse who calls a doctor who all stand around looking at my bits. It’s embarrassing to ge honest but I have 2 children, been through labour, c sections, numerous painful sweeps.

I dread it absolutely dread it but I’d dread my children without me more.

It is uncomfortable and we all worry about all kinds of things.

Woman should be free to decide what they want to do, no one should judge another we can advise and give opinions doesn’t mean the other is right just means we are all human with our own beliefs.

I would always go for a smear test. I have a retroverted cervix, so it's a little bit painful, but it's worth it. The cervical screening programme is possibly the most effective of all our screening programs in terms of delivering benefit without causing harm - I think the jury is very much still out for breast screening, by comparison.

It works too - "
In women aged 35–64 years, regular screening is associated with a 67% (95% confidence interval (CI): 62–73%) reduction in stage 1A cancer and a 95% (95% CI: 94–97%) reduction in stage 3 or worse cervical cancer: the estimated OR comparing regular (⩽5.5yearly) screening to no (or minimal) screening are 0.18 (95% CI: 0.16–0.19) for cancer incidence and 0.08 (95% CI: 0.07–0.09) for mortality. It is estimated that in England screening currently prevents 70% (95% CI: 66–73%) of cervical cancer deaths (all ages); however, if everyone attended screening regularly, 83% (95% CI: 82–84%) could be prevented."

www.ncbi.nlm.nih.gov/pmc/articles/PMC5117785/

Again granny, you are comparing two things that are not comparable. There isn't any equivalence. One can see that it isn't acceptable for women to be told they're lying about painless smear tests, whilst also understanding that the scale of the problem facing women who don't attend is much larger (and note that some of the women who've discussed their pain free smears are also against the way in which this issue is framed, eg expatinscotland).

You aren't entitled to extract agreement that someone being angry with you on MN is the same as being berated by HCPs, with being threatened with deregistration from your GP, with being subjected to emotional blackmail and attempts to persuade you into a procedure without informed consent, as the price of your engagement.

Also, who said anything about treatment being inevitable after a smear? It's very obviously not, since many women never have any.

Jenny17 this exact thing happened to someone I know (normal smears, cancer high in the neck of the cervix) and she had a hard time getting anyone to give her a second look even though she had symptoms. I wonder how this is reflected, if at all, in statistics. And I wonder how many women ignore their symptoms because they've ticked off the smear on their 'to do' list and think they've been given an all-clear.

Screening does not pick up everything. My mum was diagnosed with stage 2 breast cancer only a few months after a clear mammogram, and even the diagnostic mammo didn't pick up the palpable tumour. The ultrasound showed something but didn't reflect what was really there. It was my mum who found it, not the screening, and it came as a terrific shock to get a diagnosis so soon after a clear screen.

PramWanker when you said, some of them will inevitably be having treatment for issues that would resolve themselves and thus are costing the NHS more. I thought you meant there was an inevitability to having treatment, some of it being unnecessary. I can see you might have meant only some of them would have treatment.

I am entitled to feel however I like. If someone calls me a liar it isn't up to you to decide how I should feel. Bloody hell we don't need the patriarchy to attack us do we, we do such an excellent job among ourselves.

Redhead, no wonder you dread that. It sounds awful. If they know it is that bad is there anything they can do to help? Different I know but when I had a colonoscopy I had some med that left me awake and aware but much less aware of what they were doing. Can't think what it was called, the doctor said I would feel like I'd had two strong G&Ts. When I told him I was tee total he said I was in for a treat. Made me laugh as he approached with the camera, didn't feel like a treat!

I suppose if you aren't tee toal maybe two G&Ts would do the job!

Good luck with the next one.