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?

Ovarian cancer is much commoner and more deadly than cervical, yet there is no screening for it and limited awareness of its symptoms.

"Offering BRCA screening to all women has been suggested recently"

I agree that this is unlikely to be affordable right now. I think it'll continue to be only those likely to be in high risk groups from family history (and perhaps extend next to those whose family history is unknown).

And also perhaps if there is a need to run a gene test on a woman (for any reason) there could be a way to add on BRCA (as the cost of growing the cell line would be incurred anyhow)

I've not got much further through the thread than the comparison to going to the dentist. In fact I think there are similarities , lots of people are scared of going to the dentist. Some for obviously understandable reasons relating to past dentist experiences , others for less easy to pin down reasons and feelings of anxiety. Both procedures can leave you feeling like an object being prodded and made to do things that don't feel natural or possible. The difference is culturally we all know and accept, even expect people to be scared of the dentist and an industry is building up of dentist who brand themselves as skilled in dealing with nervous patients. For a smear test instead we are branded as 'embrassed', 'unwilling to make time' , 'risking our children being motherless' How about a bit of acknowledgement that there are valid reasons for not being comfortable with the procedure, that it can be difficult and that staff will accept that and treat you with that in mind. 'Embarassed' trivilialises our feelings and experiences.
It's the same as breast feeding where they constantly tell us is easy it is and won't acknowledge or help when we experience the many potential difficulties.

Everyone will have problems with their teeth. Cervical cancer is a lot rarer than dental caries and gum disease.

Also, I come out of the dentists with shiny teeth - not keen on getting my fanjo polished

'I did the old NCT classes where it was all about relaxing and breathing and it can make a difference, again maybe doesn't work for everyone but I know if I can get my breathing going and relax it can make some unpleasant procedures more bearable, last year having a colonoscopy was a case in point.'

That comes from within you, though. I've been practising yoga for 20 years now and have used it quell panic attacks, get through some medical procedures, etc. But someone telling me to do it won't work, it'll probably ramp up my anxiety because I have PTSD. I try to, anyway, and I'm one of the fortunate ones who doesn't experience painful internals or smears (I've also had colpo and LEETZ when I was 30 and I do have HPV) because by the time someone is ordering me to relax I have already tried.

It's better to tell people that there's a range of experience and some people find it painful and if you do then to not hesitate to say so and they will stop what they are doing rather than bark at someone to relax.

Injections and needles are another useful comparison. There is quite a lot of sympathy for needle-phobic people, even though they may miss out on various medical treatments.

FWIW, I find injections a thousand times less distressing than a smear test.

actually belonging to a sentient being and not just being some kind of lump of meat with a hole in the middle of it

Pretty much sums up the attitude of around half of the women HCPs who’ve had call to go near my vagina.

All the male doctors have been excellent. Wish there were more male nurses around, I’d request one for a smear.

Cervical cancer is very rare. There's been issues with the info leaflet they send as it horribly exaggerates the risk. Cervical cancer accounts for less than 1 per cent of all cancers. In 2015 there was just over 3,000 cases of cervical cancer. It sounds a lot until you consider there are 65.64 million people in the uk and half of them are female.

It's also worth noting that false positives work both ways so the reality is that some women get told they have cancer when they do not. It's interesting that testicular cancer rates are around 2,300 in the uk yet there's no mandatory screening tests and men's balls are not regularly examined at every opportunity.

Ovarian cancer is much commoner and more deadly than cervical, yet there is no screening for it and limited awareness of its symptoms.

Awareness follows where charities go and where money is.

Cancer charities by their nature have an agenda. Its a whole industry in its own right. And whilst not for profit, there are many individuals who do make a very nice living out of them. You need to be aware that it therefore isnt necessarily in the charity's interest to give unbiased information and it is in their interest to over inflate the perception of risk.

This is why cancers which dont have a big shiny pr machine are not thought to be as bad or as prevalent. Which can lull us almost into a false sense of security. It also has an influence on where money is put into the health system itself by following public opinion rather than actual risk. Which is utterly wrong.

Cancer charities are not inherently bad, but its worth pointing out how they do focus minds and give false impressions of reality.

Cancer charities also thrive on the notion and support of 'survivors' (and people who think they are survivors).

This is in part why despite having a well known charity, Alzheimer's doesn't get the same level of donations. There are no miraculous recoveries and individuals who can shout about how it 'saved their life'.

All this is important. This is also why I object to the smearforsmear campaign as its not really getting to the heart of why women decline and is totally superficial and just about pr, not the issue it claims it is most concerned about.

Its not about women in essence. Its about the self promotion of the charity and raising its status.

I was most annoyed yesterday looking through the Jo's Trust website. I could be wrong here but despite looking I could find no where, where risks of screening are mentioned or discussed. If I'm wrong please do correct me on this, but i'm firmly of the opinion that if you are promoting screening that you should put these risks out there and easy to find if you are truly putting women first.

Braca gene testing (and a whole pile of other genetic info) can be done cheaply and easily (around £100-120), through the post using 23andme, takes about 3 or 4 weeks to process.

There’s a package of “locked” results (Braca, Alzheimer’s risk for example), that you have to consent to unlock each individual result when your results come through. I unlocked all mine - all ok thankfully but I’m very much in the “I want to know camp”. Can’t understand my MIL at all, who also did 23andme but has declined to look at any of the medical information “I don’t want to worry” she says... to me, I worry anyway so I’d rather know my actual risk (even if it’s high). There’s always SOMETHING you can do to lower the risk, or at least prepare, but each to their own I suppose.

Other “fun” results such as a breakdown of your ancestry, % neanderthal genes etc are separate from that, and “open” and then there’s the raw data, which you can run through 3rd party software to find out a HUGE amount about your risk factors for various things (cost 0-about £20 to do this)

It’s a tiny price to pay for so much information, l learned so much from it (some confirmed suspicions I had about having a certain genotype, some useful medical info about some medications I can’t process due to having the “wrong” enzymes, not being able to process some vitamins very efficiently (so I take care to get plenty).

Back to the original point of the thread- I was prompted by this thread to call and make an appointment with my practice nurse in a couple of weeks (smear about a year overdue ), not been avoiding it as such, but slightly erratic cycles now I’m ancient mean I’m never sure when to make an appointment for - I never seem to remember at the beginning of a cycle, to pick up the phone and make an appointment- ah well, it’s done now.

Shiny teeth? I've come out the dentist having had my mouth stretched wider than feels possible, whilst two or three instruments are used inside it, tearing my lips. And on bonus occasions being told that of course the anaesthetic is still working. My point is that If I relay that I would be met with sympathy and a recommendation of a decent dentist. With a smear test we're told not to be embarrassed and pull ourselves together.

I was most annoyed yesterday looking through the Jo's Trust website. I could be wrong here but despite looking I could find no where, where risks of screening are mentioned or discussed. If I'm wrong please do correct me on this, but i'm firmly of the opinion that if you are promoting screening that you should put these risks out there and easy to find if you are truly putting women first

If you read why this charity was set up, you will see that it exists to stop that happening to anyone else. So the agenda is to push cervical smears on everyone, not to search for balance.

expatinscotland I see you quoted me. I also said " in my view" and was talking about my own experience, nobody else's. I won't lie and say I find the experience painful or traumatic, when truthfully, I don't. We don't all have the same bad experiences. Yes I understand others may suffer pain and trauma but the service is there to be used to pick up potential serious health problems. No one is forcing anyone to attend, and unfortunately that's the risk they take. A smear test will always carry some level of discomfort and embarrassment as would other procedures.

Not sure wether or not to get involved with this. Part of my role at work involves the cervical screening programme. It is not normal for a smear test to be agony. Slight discomfort may occur but nothing more. In cases where the patient finds it too uncomfortable a referral should be made to get the smear performed at colposcopy.

The programme is flawed but it does work for many women. That being said I completely understand why some women do not attend

Slight discomfort may occur but nothing more. In cases where the patient finds it too uncomfortable a referral should be made to get the smear performed at colposcopy.

That’s totally unworkable with the number of women saying they find smears very painful.

RogueBiscuit "Cervical cancer is very rare"

this is my interpretation of the stats as well. I appreciate that some people just read "risk" but I find it extraordinary that so much is targeted at a condition that is so rare.

'Slight discomfort may occur but nothing more. In cases where the patient finds it too uncomfortable a referral should be made to get the smear performed at colposcopy.'

You don't get referred to colpo clinic unless your smear has come back abnormal because a colpo is a biopsy.

I believe the PSA blood test for prostate cancer is preferred by men who are not keen on the alternative. A physical examination of their rectum. Funny that.

Surely there should be a less painful and embarrassing way of examining women.
Where's our simple blood test?
Smear tests are so archaic and medieval. They've hardly improved at all and it's no wonder so many women dread them and will often refuse them.
If they are told they need further investigation and treatment, the treatment for suspicious cells can do a lot of damage. My sister had something called diorthermy, where they burn the precancerous cells and she says it damaged the cervix to the extent she now is less sensitive down below. She thinks it destroyed nerve endings.
It was either that or the cone biopsy that did it.
when you go chopping and burning stuff away on your undercarriage, it's bound to do some lasting damage.

Women can't win.

"A smear test will always carry some level of discomfort and embarrassment as would other procedures"

?

Hardly any other common GP procedures carry the same level of embarrassment and probably discomfort.

Although I don't go to the GP very often and so maybe wouldn't know. Generally they just check my blood pressure which is definitely not on the same level.

When you have even women denying that there is any reason at all for women to feel any different about taking off all their lower clothes, getting on a bed, spreading their knees and having a stranger stuff something the size of a smallish dildo up their snatch, and then "opening it up" and scraping around, than having say their eyes looked at with a small torch, then I don't really know what the fucking point is. Why should HCPs be sensitive or gentle in that case. It's nothing.

somethingfromnothing, if you don't mind me asking: why can't cervical screening be done with modern tools such as the little cameras they use for laparoscopies and associated gut biopsies?
Why can't a small, narrow instrument be used, like the one I had for my painless and relatively comfortable vaginal swab?

Colp is what they gave me at 16, they cut a bit out with a loop? I think they said at the time.

That is different from a smear?

i was up in stirrups for that one. And it took longer. No pain relief or anything. So why would that be better for a woman who finds smears painful? Very confusing.

icenasliceplease

When I googled earlier there were links about hpv vaccine and saying that it could mean only a couple of smears a year

other links saying test for hpv could week out high risk women for smears

You're right it is medieval.

The 'small level of discomfort' is just not so for a lot of women and that is being completely disregarded in many instances. That's wrong. And yes, where is our 'simple blood test'.

You see it all the time when it comes to women's health. Women being given oral paracetamol after CS when they are crying in pain. Women with endo being fobbed off for years. Women with horrendous periods being told, 'Just get a Mirena' instead of investigations into why they are experiencing such symptoms. I was fobbed off for 10 months with a Mirena, kept being told 'it'll settle' when I never stopped bleeding despite tablets to stop it, no sex drive at all and cystic boils of acne on my back and shoulders. Offered anti-depressants when I expressed that my mood had tanked. But research into the male pill stopped due to side effects reported.

At my last smear, the nurse said that in ten years or so, the test would be superseded by a blood test? They've increasingly found smears ineffective and unpleasant, so an alternative was in development. That was last year.