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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask why you’ve missed/delayed/declined cervical screening?

936 replies

chickentikkawhatswrong · 19/02/2022 13:56

I see a lot of the campaigns on Facebook about women not going to smears or putting them off for too long.

However it’s generally stats and doesn’t seem to delve too far into the actual reasons?

If you are reluctant what holds you back from attending?

OP posts:
TimBoothseyes · 20/02/2022 17:40

@RedToothBrush

Check out the search facility... Just saying.
As I suspected. Best not feed it then.
BadNomad · 20/02/2022 17:42

Many women will willingly have a smear test. But many only have it because they are frightened, threatened and shamed into it by a system that doesn't care about them as individuals. And then there are others who won't force themselves to go through it.

Coercion is not consent. That is why it is a big deal. That is why it is traumatic for many. That is why it is a no.

Historybubble · 20/02/2022 17:43

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

Igloo79 · 20/02/2022 17:45

Historybubble, you don’t get to decide what is traumatic. Many women here will have experienced traumas that they don’t want to put into words and post on the internet. I haven’t given the details of my rapes here, and I won’t. You don’t get to demand what you deem a good enough reason for women to feel like they do.

okthx · 20/02/2022 17:46

@Historybubble
But it IS traumatic!
No one raped me during my smear test. It was fast and not too uncomfortable. But it triggered a couple of months long health anxiety that I can’t control. For me personally it’s an unnecessary procedure as I’m HPV negative and that’s what they want to check anyway. But it triggers me. Now I’m delaying my health check because I know they will harass me about the cervical smear. There’s something I NEED to check, but I can’t face them at the moment, I have enough in my plate. How is this OK?

okthx · 20/02/2022 17:51

@BadNomad
Thank you!!
I feel so relieved to be understood.
It’s the politics around this screening, that’s what deeply worries me. I know how high is the risk of over treatment with this test. I know that there’s no much point to it for HPV negative person in monogamous relationship. I know there’s a less invasive test available and I paid for it privately. I know that I’m HPV negative, but they still don’t trust it and can’t stop putting judgments on people who’ve made an informed decision. There’s no excuse to that.

BloomingTrees · 20/02/2022 18:01

According to the cancer research site there are over 200 types of cancer (it can basically happen in any part of the body). The biggest killers are lung, bowel, breast and prostate so I think the more recent awareness and screening for bowel cancer is good.

You are much more likely to die of skin cancer than cervical so I don't understand why there isn't more awareness on checking moles.

I don't understand the health care system's obsession with getting women to have smears. Yes make it available, yes make it free, give the statistics clearly and concisely, list the risk factors and then let women make up their own minds.

My DH has NEVER been spoken to about male cancers -this isn't good either.

Ereshkigalangcleg · 20/02/2022 18:03

One is just plain arrogance. But there's also an element of women who want their own choice to engage in the programme to be validated, and are thus threatened by anyone who has reached a different decision. You can really see the difference between them and women who do have screening because they think it's the best choice for them: the latter don't need the external validation.

YY.

ughwhatnow · 20/02/2022 18:05

I was removed from my GP's list several years ago, due to my informed choice not to participate in the cervical screening programme.

I rang them to ask why the solution to my 'non-engagement' with one non-compulsory screening test was to effectively remove my ability to engage with primary healthcare of any kind. I was told that it was about their funding, and that if I booked a smear there and then, I would be put back on the list.

Coercion, basically.

JuergenSchwarzwald · 20/02/2022 18:06

Coercion is not consent

ha ha - vaccine passports anyone? It's another side of a many-sided coin. You must do what we say or you are being stupid and inconsiderate.

Igloo79 · 20/02/2022 18:06

That’s absolutely appalling, @ughwhatnow. I’m so angry on your behalf.

okthx · 20/02/2022 18:09

@ughwhatnow
So what happened after that? Have you registered with another GO practice?

Livelifeinthebuslane · 20/02/2022 18:10

There’s something I NEED to check, but I can’t face them at the moment, I have enough in my plate. How is this OK?

This is partly how I feel too, I spent four months last year waiting for results about something that actually could kill me (whilst not being able to get any psychological support from the NHS because it doesn't fit into their GAD7 and PH9 scales) and I couldn't cope with one more thing when invited for a mammogram.

JuergenSchwarzwald · 20/02/2022 18:12

Offering an invasive sampling procedure in a doctors surgery, that a substantial number of women wont engage with is unethical when there is an initial screening test that could be done easily and safely at home. If I was HPV positive I’d go for regular smears. I’m not going for a smear only to establish my HPV status

An extremely good point.

And you can't compare this with a stool sample. Doing a poo and sending it off for analysis is very different!

ughwhatnow · 20/02/2022 18:12

Oh, I was shaking with fury on the phone, I've never forgotten it.

Irony is that I am a woman's health professional. I spend my days talking about informed choice and reassuring women that they are entitled to make any decision they want to about their bodies. Shame the wider NHS doesn't practice what we preach.

RedToothBrush · 20/02/2022 18:13

@JuergenSchwarzwald

Coercion is not consent

ha ha - vaccine passports anyone? It's another side of a many-sided coin. You must do what we say or you are being stupid and inconsiderate.

I don't agree with vaccine passports.

I have said this many times.

I think they are totally unethical and actually hcp debate whether they do anything to increase uptake or actually decrease it by causing resentment and entrenchment.

One thing we do know for sure is that vaccine passports cause protests...

ughwhatnow · 20/02/2022 18:15

[quote okthx]@ughwhatnow
So what happened after that? Have you registered with another GO practice?[/quote]
I went without a GP for a couple of years, then we moved house so I did register elsewhere then. And got endless badgering letters from them too. The opt-out system isn't fit for purpose.

I did a home HPV test last year instead. I'm not blase but the system as a whole and the screening programme itself is appallingly flawed.

neerg · 20/02/2022 18:21

When I have delayed in the past it has been a mixture of waiting for the right time period wise, forgetting, moving house and just absolutely hating it.
I was quite surprised once when I was three years overdue.
I am all up to date now!!

coatofsomanycolours · 20/02/2022 18:26

@coatofsomanycolours how was my post unkind??? How do you compare assault to a smear test lol. An assault is a sickening, horrific experience I do not wish upon anyone ever. A smear test is a smear test- an uncomfortable 10 mins experience that may save your life.

Because, in my opinion, you are unkind because you cannot accept that a smear test is anything other than "an uncomfortable 10 mins experience". I totally accept that is what it is like for you and the majority of others. But why can't you understand it is NOT like that for everybody. It is not for you, or for me, to decide how others feel, how others feel pain, for how triggering it can be for others who have been assaulted, and it is not for you, or for me, to dictate how others should feel or react either physically or emotionally. You can only speak for you! I can only speak for me. It is unkind to think otherwise.

You are totally entitled to say that FOR YOU a smear test is an uncomfortable ten minutes. That's great. But my experience is very different I could tell you dramatically that FOR ME a smear test has been over 30 years of trauma and anxiety because I know very well it could save my life but I was still unable to undergo it. But most of all it is unbearable agony that the medics understand. Others also have their own individual experiences and I think it is unkind to deny that and describe it as an uncomfortable ten minutes for them.

MumUndone · 20/02/2022 18:33

Inconvenience mainly.

Monday55 · 20/02/2022 18:35

I'm putting mine off because I'm pregnant and now allowed to have one. Otherwise I don't have problems with getting a smear test.

Terfydactyl · 20/02/2022 18:46

@ughwhatnow

Oh, I was shaking with fury on the phone, I've never forgotten it.

Irony is that I am a woman's health professional. I spend my days talking about informed choice and reassuring women that they are entitled to make any decision they want to about their bodies. Shame the wider NHS doesn't practice what we preach.

I've just googled opting out, to find phescreening.blog.gov.uk/2016/09/30/whod-opt-out-of-screening/

Even on there a comment makes the point that we may not fully understand what we are doing ( fucking patronising)
And another says we're supposed to be offered counselling??? One to one counselling to explain the benefits. I mean I'm over 18, I can make up my own mind and if I get it wrong then that's on me.

FWIW I was in the surgery one day to sort out a prescription and apropos of nothing I simply said I want to opt out of the screening. The receptionist did it there and then, no asking if I knew what I was doing, no trying to change my mind. She trusted that I knew my own mind. Since that day I've had a lightness about me.
I wish I could tell you what happened at my terrible awful smear that made me like I am about them, but it's too traumatic sadly.

Graphista · 20/02/2022 18:52

Who has been guilt tripping you?

I know it's not me you asked but:

The govt - letters, ad campaigns giving it "its just a bit of discomfort" "no need to be embarrassed" etc as has been said it's ignorant, condescending and patronising crap!
Hcps
Posters on threads like this...

It does feel its more about control and coercion of women rather than giving a shit about them.

Definitely

I am sick of the way women are treated and the comparisons with all kinds of bullshit for a very invasive and often very traumatic procedure and who are then told in the most minimising of ways to 'stop being embarassed and go for a smear'

Me too

And it IS bad enough when its authorities (mainly led by men!) doing this even worse when it's other women who frankly should know better!

@MolkosTeenageAngst re smaller size speculum I make them show me the 2 sizes so I ensure they ARE using the smaller one had so many arguments with hcps on this one drives me nuts! They assume because I am overweight that I have a large frame inc pelvis I don't!

@musicviking1 that's appalling but I can't say I'm surprised I've heard similar from others. In that situation myself I would insist on a cover, the rest I would end the procedure and complain. Totally unacceptable but I also understand lots of women in such a vulnerable situation struggle to complain - so it shouldn't bloody happen in the first place!

I've had the situation where they've tried to pressure me into having students present inc male students - no fuck off! It's hard enough for me as it is without that bollocks!

Graphista · 20/02/2022 18:54

@thingymaboob the point is there are non invasive tests that could be carried out so that not every woman has to go through this one.

Especially given they don't even test the smears now UNLESS hpv is present. I've had a...varied sex life but I've always been careful sexual health wise and I'm pretty sure I don't have hpv this thread has prompted me to plan to get a test for that done.

At the very least as several posters inc myself have said why not screen for hpv first and then only call for smear those who test positive for it? Though even that's not ideal.

We have explained why and you haven't listened, just like the NHS dont listen. well said!

Similar to @coatofsomanycolours (and you are not a freak! I think this thread very much proves that) I actually usually have a high pain threshold probably at least partly BECAUSE of all the stuff I've gone through

I don't say it's painful because it's uncomfortable I say it's painful because it really bloody hurts!

@bitemyarsenic and @RedToothBrush medical misogyny is still a HUGE issue! @sanluca medical misogyny is a problem with female hcps too it's a very ingrained issue

This is also basically the answer to your question @KattyR786 - because it is something only women get, only women go through. Things that also or only affect men are NEVER treated in the same way

Honestly google the phrases "medical misogyny" "medical gender bias" - literally killing women because even very basic things like baseline anatomy and physiology are taught with the male body as default. which is stupid because it is not just in the sex and reproductive system that we differ biologically there are many differences - but I'm veering off topic now. You will be horrified at what you find/learn I am sure

Its yet another area where womens health concerns are either not discussed or dismissed

Women's health generally is not prioritised at all

Graphista · 20/02/2022 19:04

@bitemyarsenic as you are also an hcp can I ask what you think would work to address medical misogyny? Or at least what we as patients can do to ensure we get good quality treatment?

I have been having to fight for DECADES with hcps mainly male gps but also female gps and practice nurses just to be heard!

Medical conditions ignored, misdx, mistreated on numerous occasions mainly because they didn't LISTEN to me.

This includes losing 3 babies to mc when I feel sure at least 2 of them could have been avoided.

@Porcupineintherough I agree gp staffing could be staggered/shift work without necessarily a need for extra staff although I think in many cases surgeries are already understaffed and that does need to be addressed but then it's a v complicated issue given gp surgeries are essentially private contractors to the nhs and aren't actually part of the nhs and never have been

I turn 50 this year I'm dreading my 1st mammogram but feel I really definitely need to go for this as there's a history of breast cancer in the family.

I'd love to know why they have to pressure the breasts to do this given for other radiography this is not necessary, supposedly it's to keep everything still why then not develop special bras that are suitable for radiography that keep boobs in place and have patients hold their breath or do it lying down or something?

I do wonder if people on here who don't have a smear would choose to decline treatment if they did develop a gynae cancer

It would depend on the exact circumstances

it’s not about the nurse it’s about the woman’s feelings!

Good point

I think this bears repeating

Any woman has the absolute right to decide what, when, and in what circumstances, a foreign object is inserted into her vagina by another person

I am actually appalled at the amount of women on this thread who have suffered poor treatment by HCPs.

I'm appalled but not surprised given my own experiences especially with primary care which is INCREDIBLY hard to complain about without risking ending up with no GP!

@heather2908 that situation alone is utterly ludicrous! They really need to get their heads around the fact the job is to suit the patients and not vice versa! But then I think this is a major problem in primary care they've gone into healthcare but want an office job!

I was removed from the roles of my previous gp because i wouldn't have one. Numerous women have had the same problem.

Again appalled but not shocked! They have FAR too much power!

GPs have to get a certain % of women to have them. Otherwise they dont get cash.

I think an awful lot of people don't know this I've had hcps try and tell me I'm wrong about how the funding of gp surgeries works.

I started looking into it way back - again massively off topic I'm afraid - but this is also why it's so damn hard to get a referral to a specialist when needed - because it costs them! And they don't wanna lose that money!

The way the system is funded creates a massive conflict of interest.

Totally agree - but then I'd have primary care fully part of the nhs and salaried and I'd have enacted that in the 50's (had I been about and had the power to do so) the GP's back then who refused to become part of the nhs should have been left to be private, and eventually they would have either passed on their private practices to other private physicians or the practices closed, while the nhs trained and employed its own primary care physicians.

As it stands the nhs/taxpayers pay to train them and they then basically become private practitioners able to pretty much set their own pay and conditions for which they again charge the nhs.

It's a farce!

why can't they do something similar around getting staff to understand the impact of trauma?

Well quite

I experienced Csa but thankfully it never reached the level of full rape - I've had hcps use that fact against me on several occasions. As if I'm exaggerating how I feel or as if not being raped means I wasn't "really" abused.

@123usernamesilly appallingly dismissive and ignorant posts there!

How can it be so painful?

Because our bodies ARE NOT YOURS, because we have scarring, because we have gynae conditions, because we've experienced trauma and however hard we try not to we tense up...

Tons of reasons!

I honestly don't believe you're a woman

@namechanging202020 same goes to you - read the actual thread! Don't make assumptions and DO NOT dismiss our experiences

Whining?! I guarantee you have NO IDEA of everything I and others have been through in terms of pain, medical stuff and trauma your posts are disgustingly cruel and dismissive and I am willing to bet you wouldn't cope with the HALF of what I have dealt with! I've had Mh hcps themselves say they couldn't cope with it all that they're amazed I'm still going!

We're more intelligent and well educated than you are clearly! Given you can't even open your minds one iota to accept that you are wrong!

I'm a former hcp myself patients and their bodies and experiences vary greatly! I worked in elderly care and when I did I cared for people who'd been through wwii. Some had been soldiers, some had been in concentration camps etc

Can you IMAGINE if I had treated them as "making a fuss" when they wanted their care carried out in particular ways?

Bloody insensitive and idiotic to not even try to understand how others feel.

Women: we feel coerced, bullied, minimised, and not listened to.

Other women: shut up, shut up, shut up!

No i will not shut up until women are listened to on this.

Exactly!

@JanisMoplin that's a kind perspective to take thank you

@Sassbott Thank you for both doing that and making the effort to understand

I'm not buying the visual check based on my own experience of numerous checks they've not noticed/missed obvious things - like that I'm bleeding! Also cysts they've missed - sorry @bitemyarsenic maybe they're supposed to ime they don't always.

@KattyR786 Interesting re whether it has actually made a difference to rates too I didn't know that

The NHS should be ashamed of spreading fear, misinformation, and patronising its patients

Please note the majority of the time it's FEMALE patients they treat the worst

Some people don’t agree with you

No! You're not "disagreeing" you're telling us we're wrong that our experiences didn't happen or don't count or that we don't feel the way we do. That's a disgusting way to treat people.

@Bellalasagne1 while I'm sorry for what you have been through please read the thread more thoroughly as you appear to have not done so. We are not avoiding smears merely because they're "embarrassing" or "uncomfortable"

One thing I have noticed is that those of us who do find it painful haven’t accused the ones who don’t of being wrong

Well quite!

@okthx the endo was ignored/misdx for 14 years (despite me going to gps at least once a month with classic textbook obvious symptoms) I've had similar issues with tonsillitis which I usually get regularly at least 2-3 times each winter (funnily enough not this last 2 winters which is one reason why I am gonna keep wearing masks long after Covid is apparently dealt with! My asthma has been less troublesome too!), even after getting the endo dx I've had to fight for treatment and support, ditto the Mh stuff, dds disability was ignored/misdx for almost 12 years, I believe I have a thyroid issue which they keep dismissing, as I said before I'm CONSTANTLY berated for being overweight and pretty much EVERY health condition is blamed on that - everything from asthma, eczema hayfever and allergies (which I've had all my life), to the endo, to the Mh conditions, to my physical disability (result of car accident when I was a size 10!)!

They focus on all the wrong things imo.

but because they are barely in range the GP won’t treat

This is the problem I'm having with the thyroid stuff. There's a family history of other women having the same thing happen. Reporting symptoms for years, decades, being told they're within range and then post menopause condition worsens significantly and they're finally dx and treated but go through hell until the meds are at the right dose.

But even though I have explained all this - nah they don't bloody listen!

Plus nhs ranges tend to be wider than most other countries.

I occasionally had problems with anaemia when younger, when tested in uk was told I was fine, when tested in other countries immediately given treatment as they considered my levels unacceptable.

I feel like they don’t care about me as a person

This is ultimately the problem with primary care. No longer have a named gp, no relationship built, no continuity of care.

I've got around that to some degree by having a particular gp at my surgery as the only one I will deal with for the Mh stuff cos the others are either crap at it or seem to think it's not real!

They care more about their profits, their own pay and conditions than they do about patients in most cases. There are a VERY few good genuinely competent and caring primary care hcps but they are so hard to find! I'm moving house soon and I am DREADING Having to find a GP that :

Listens
Understands mental illness
Doesn't query the medication regime I'm on which mostly works for me - the last thing I need with the stress of moving is this getting messed about!
Let's me have a female hcp for certain well really most things I don't cope well with examinations by males

@bedheadedzombie thank you for understanding - it should be the default but clearly isn't

The lack of compassion among what I am assuming are young, relatively healthy women (maybe Hmm) who SHOULD be listening to us if only because the way we have been treated by hcps is often going to be your future too!

Because you're treated worse as you get older too! And various unexpected things become more painful, more likely to cause medical issues.

Difficulty getting appointments - another bugbear of mine BECAUSE it's not totally a lack of funding/staff/resources imo. To take the example of me and the endo - at least 10 appointments a year JUST for that, either reporting symptoms and trying to get taken seriously or having to make appointments to get medication to treat the effects (heavy painful bleeding, bloating, diarrhoea, migraine, vomiting, repeated urinary infections and vaginal irritation etc)

If I had been referred to gynae to get an actual diagnosis in the early years many of those appointments WOULD NOT HAVE BEEN NEEDED.

And I am sure the same applies to many other chronic conditions not just gynae ones, the GPS don't refer - again for financial reasons - which is actually a false economy because surely all those gp appointments cost in not only money but also in the time taken up by patients suffering from undx chronic conditions (and yes this usually happens to women! This has been researched and documented)

they essentially forced me into having it by withholding contraception until I had it which I also didn't like.

Totally unethical but I've had the same experience when younger. Now I would tell them to bloody well act ethically and not threaten/harass me but it is not easy!

Sadly it appears they can, there’s quite a few of them on this thread!

I'm not totally convinced they are all genuine posters or even women tbh

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