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?

smallclanger

I think because they have to look at your cervix?

They have to look at it and then make comments about the state of it IME, just remembered that! More than one has has something to say about ?mucus, and other stuff that I can't remember now.

If self testing were available I’d participate and I suspect many others would too.

Self testing is the way to go.

Really? That goes back to what Expat and others have been saying. If you've got arthritis symptoms in one of your joints, you expect medics to want to look at it to make a diagnosis, but you assume that they will use the least invasive methods possible. Not so much if you're a woman - it's fine for our most sensitive parts to be pushed and pulled about whenever.

If a blood or urine test was developed, takeup rates for screening would rise dramatically. A self-administered test would be the next best thing.

I think the fact that young women appear to be liberated enough that they're saying 'Hey! This test is NOT acceptable to me!' is a positive thing for feminism.

Instead of the patriarchy sitting there saying 'why won't these women do as they're told, like the used to???!' They should be listening to women, and finding an acceptable test- self testing, or blood screening. A self test would be possible when the cervix is nice and low just before your period, and would have the added benefit of teaching women about their anatomy. Allowing a self test, with a teaching appointment, or a nurse to do it, would mean no more appointments than the current system, and I wonder if any more failures than the current system, if you count the number of women who are dragged back to their surgery several times because their cervix is difficult to find.

A screen for men requiring an invasive test into the urethra, or even a routine rectal speculum, would not be deemed acceptable.

smearsforfears Couldn't have said it better myself.
The whole procedure is archaic and distressing and seriously needs updating.

This thread has reminded me yet again that I need to rebook mine actually. Had cancelled mine due to coming on unexpectedly and was told that the only appointment they had available was for 4 weeks to the day Which would have been useless to me with 28 day cycles, assuming next was normal cycle rather than randomly early When I said this, they got quite pissy with me on the phone and said I might be struck off the practice for not rebooking. I told them I would be willing to rebook but 4 weeks to the day was useless surely. They then told me I cannot get an appointment for more than 4 weeks in advance. Was all a rather odd affair tbh and I still think that for some reason they were just being awkward with me cancelling at basically no notice..but I HAD no notice and obviously did not know I would come on near a week early.

I am so glad to read this thread! Yesterday I was driven mad by the endless media coverage basically implying that women who don't attend smear tests are just too silly or stupid or frightened to go, and hearing radio presenters tell me what to do with my own body. A colleague at work said she was equally annoyed to basically be told she was a silly woman who'd go for waxing but not a smear.

I am one of the women Jo's trust refuse to believe exist - someone who's looked at the risks and benefits of smear tests and decided not to have one. I'd strongly suggest that anyone who wants to know the facts starts with Margaret McCartney - a GP who doesn't have smear tests. She's written lots in the media, on her blog, and in her book 'the patient paradox' about this subject.

But some basic facts:
-smear tests probably do reduce the incidence of cervical cancer, but we don't really know by how much. Some studies say it's as little as 1 in a 1000 women.

-smear tests don't look for cancer but pre cancerous cells, which may return to normal on their own. You can end up having treatment, which can cause premature birth, or infection, when you never would have got cancer. You're much more likely to end up having unnecessary treatment than you are to get cervical cancer - which is about a 1% lifetime chance. And most women who actually die of cervical cancer are over 85.

As a woman I'm sick of being patronized and infantilized by the likes of Jo's trust. I strongly recommend any woman who feels the same e-mails or tweets to tell them.

said I might be struck off the practice for not rebooking

You know they are not allowed to do this, don't you? They can not kick you off their books for this reason. If they threaten to, you can log an official complaint.

lettucewrap, we (as in the family) were told that 23andme wasn't reliable for BRCA testing. There are so many variations of both BRCA1 and 2, over 600 and 23andme test for 3. The FDA in the USA have said that women should not rely on the test as it tests in a different way, sorry not technical but something to do with sequencing being 100% reliable and the method used by 23andme being less reliable.

You also need to see a genetic counsellor to understand the results, not always a yes no answer as they are constantly finding new mutations.

If you need the test then speak to your GP and see if you can get reliable testing.

the small clanger cervical screening is done at a cellular level so cameras not much use. They can show some changes but nothing definitive. The reason for the broom style instrument is that an entire sweep of part of the cervix called the squamo-columnar junction has to occur so that the entire cervix has been sampled

And by the way screening is unpleasant and painful in my experience. In the days when I still had them I once went to the GP, who had no idea what she was doing and couldn't even find my cervix (I have a retroverted uterus). I was there about half an hour and she drew blood. On the next occasion I went to the well woman clinic and was recruited into a clinical trial without any proper consent or explanation. I gave up after that.

But that's not the reason I don't go. I don't go because I don't want a treatment where I'm far more likely to end up having unnecessary heavy duty treatment like LLETZ than I am to derive any benefit. A secondary reason is I'm sick of being patronized and infantilized by both the NHS and some GPs. I finally took my name off the list after a 5 minute lecture by a male trainee GP who ignored me telling him I didn't want a smear and kept saying 'but it's really important' and "I've got a patient who's dying of cervical cancer'. I'd gone in with something completely unrelated of course.

If Jo's trust really want to encourage uptake they should work with the NHS to make the whole experience better, not tell women off for not going.

Elsie, I couldn't face tweeting about this because it would cause so much hassle.

Ironically, in the time I last posted on this thread and now, I have just had another phone call from a friend who has an ongoing mysterious health condition and it has barely been taken seriously over the last two years because they couldn't figure out what it was - she's collapsed at work this afternoon so I am going round.

once again, when I think about the things which seriously affect our health and quality of life on a daily basis and get no interest....then all the resources for like this. Proper headdesk moment!!! So much rubbish in my Twitter feed yesterday and still today!

Absolutely right. Complain in writing so you've got a record - e-mail is best. To be fair my GPs practice were very supportive when I said I wanted my name taken off the list and made no attempt to dissuade me.

I can understand you not wanting to tweet, but Jo's trust have a contact e-mail on their website. I think it would be a good thing if women contact them directly - politely, but pointing out how patronizing the whole thing is.

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.

I totally agree, I need to get "in the zone" before I get in pain. If I forget at the dentist it is impossible to get on top of it, I have great problems with fillings in my lower back teeth as apparently I have deep roots and the anaesthetic doesn't work properly or something like that. I have to prepare myself but I do get good results.

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.

Well that was what I said, we should be telling people it might be fine/uncomfortable/painful and absolutely they should stop if you ask. My dentist is very good with that. I've been lucky with smears and never had a nurse who wasn't kind and supportive and I've never had to ask them to stop but I certainly hope they would have.

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.

Women who speak out saying this is not their experience are not being listened to. I fail to see how this post recognises that reality. It just says that the experiences of these women are 'not normal'. Yet you see so many women saying that.

Women are conditioned not to complain or actively told not to share this or 'they might scare other women from having a smear'.

Perhaps you could convey that there is a problem here that is not fully recognised and that women are not listened to when they vocalise their discomfort.

Just telling women its 'not normal' isn't good enough.

Doing something to establish how widespread the problem is and why this might be affecting smear take up rates is what is needed.

Not shit about embarrassment.

Vicxy yes that exact story is so common less the threats part.

How the fuck are we supposed to know when we're going to have a period? Many women are irregular. They should know this they are a doctors surgery!

Threatening to remove your healthcare essentially because you had the gall to menstruate at a time that was inconvenient for them is appalling.

Is there any way to complain about this stuff without it being right to the people who did it in the first place?

If self testing were available I’d participate and I suspect many others would too.

Self testing is the way to go.

You can't self-test. The person has to look at your cervix as part of the exam. You'd also never be able to do a swipe and get into the os. Even the medics sometimes have a bit of a job.

I really don't know why the fuss over smears. I'm in my 60s and have had loads as well as vaginal surgery. Sometimes a smear was a bit ouch but it lasts for a few seconds.

being nervous makes it worse. You can ask for a smaller speculum, ask them not to crank it open too far if it's hurting, ask them to be gentle.

You don't have to lie there passive and mute while someone does this.

I had no idea Vicxy's story was a common one, I was reading it like

Well it's happened to me, without the threats. Unexpected period, not being able to book in advance etc. Basically no consideration given to the complexity of trying to combine the usual factors (work, childcare etc) + not allowing appts more than a certain amount of time in advance and there only being a very small number + the fact that many women do not have a regular cycle. They have acted as if the whole thing is highly inconvenient to them.

Remember I was going every year for years so maybe have more experience than lots of women and because it was quite often it made it seem all the more difficult

I have a feeling it may have been 6 months early on? But this is going back decades now I'm not sure. certainly it felt like every 5 bloody minutes.

In my experience 'slight discomfort' is medical speak for 'fucking agony'.

It is not normal for a smear test to be agony. Slight discomfort may occur but nothing more.

AAARGH. Why the total denial that woman are often not honest with HCPs about the level of pain/discomfort and this will ESPECIALLY apply to those of us who have been raped or violated in the past!!! Fucking hell, shit like this gives me the rage.

My rapist said I loved it really

Midwives at my traumatic birth said I’d consented when I hadn’t

Bitch nurse who shoved the speculum up and hurt me was not someone I wanted to confront

NO ONE LISTENS AND NO ONE CARES to our experiences so how on EARTH can you know what’s normal

Then you have the issue of women shaming other women. 'Pull up your big girl pants!' Being told they shouldn't be uncomfortable with sharing a ward with random men after giving birth because 'you didn't have a problem with men and intimacy 9 months ago', it's just uncomfortable because you don't relax, etc.

My h had a vasectomy. His choice. I spoke to him at length later. They were very good, tell us if you feel pain and we'll stop, giving him pain relief, numbing of the area before the local anaesthic was given. But I had a colpo with no pain relief, Mirena insertion and told just to take paracetamol before coming in. I've had multiple surgeries on my knees and one on my ankle, again, loads of reassurance and pain relief, but when it comes to GYN pain, you're told to suck it up.

Yes it is a common story now. I used to ring up when the time was right and get an appointment that week. Then one time I rang up and they said there were no appointments for 3 weeks, which made it exactly wrong and then they brought in the 3rd degree on when your period is etc - it all gets a bit personal and infantilising for a phone call.

Women are all different our bodies are all different why would we not have different experiences?

We're not fucking robots.

Why would a 16 year old not have a different experience than a 45 year old whose had lots of children?
Why would a woman who has trauma not be different to a woman who does not?

They only worked out what our clitorises were like a few years ago for fuck's sake, imagine how many women have had their sliced through during surgery as the surgeon had no idea it was even there. Our bodies are and always have been deemed simultaneously too difficult, prone to malfunction, but also not worth bothering to research. Look at heart attack. We are dying because our bodies are assumed to be just slightly crap versions of mens, with some dodgy icky bits.