When will I be allowed to refuse a smear test?

[nothankyou45]

I don’t want another smear test. I’ve said no. Lots. I’ve asked for it to be noted in the system.
And yet the reminders keep coming. In the post. To my phone in the form of text messages. I don’t know how else to say no. The surgery have recently created a form that I can fill out that will opt me out until the next recall. But not permanently. There is no way to say “no thank you” and just get on with my life.
Everyone seems to think if only I “truly” understood I’d say yes:

-Do I want to speak to a doctor about it?
I have. And I watched him note to not contact me further in my file.

-But it’s really important?
I get that. But unfortunately it’s not something I am able to do.

-But have you tried therapy?
Yes, CBT and EMDR

-Oh what about meds?
Tried to diazepam. Sorry that didn’t work either.

-Ok fine. Don’t do it but you’ll get cancer and end up needing treatment that’s worse than a simple test.
Right. Thanks

-If nothing else- think of your children! They need their mother!
As above, right. Thanks.

-Surely whatever has happened in your life can’t be that bad? I mean no one likes a smear but we just get on with it? … What happened?
What happened to being 45, reviewing the options, saying no and having it respected?

When do I get bodily autonomy? When will saying no be enough?
Or do I just need to continually fight the PTSD that each reminder brings? Will I one day be so worn down that I finally say yes? Is that how consent works now?

"Cervical screening in Wales extended to every 5 years: Why the switch? - Cancer Research UK - Cancer News" https://news.cancerresearchuk.org/2022/01/07/cervical-screening-in-wales-extended-to-every-5-years-why-the-switch/

Very interesting, read the comments. Cancer Research have replied

Thank you. I knew they'd gone to 5 years between tests but not the rest. They surely can find a way to look at who is more at risk and test them.

Bluntly, pizza doesn't hurt you where your rapist hurt you. A smear test does.

I don't think anyone has yet mentioned this:

A rapist takes away a woman's ability to say no, through threats, force, or coercion. He ignores her no because he thinks he knows best.

When the NHS won't stop sending smear reminders and GPs threaten to deregister women who refuse smears, they also take away a woman's ability to say no. The NHS ignores women's no becaue it thinks it knows best.

If the NHS wants rape victims to trust the smear process, they must first respect the right of the woman to refuse the smear, consistently, from the first time she says "no".

I say that as one of the women who attends smears despite sexual assault. (I need a whole day off work to recover from a morning smear, it's really not easy.) I recognise that not every victim is able to do that and I respect their right to say no.

You are supposed to have them up to 65 at I think 3-5 years apart. I'm 62 and due my last one soon.

It took me a long, long time to work up the courage to go for my first smear test (another SA surviver here) after being coerced and "threatened" with cancer 🙄 And it was fucking awful. After peeling me off the ceiling, the nurse said, "Oops. I'll use the smaller speculum. " I literally vomited in the bathroom afterwards before leaving the building and bled for nearly a week. All the people saying it's not painful, it only takes a minute...well, aren't you lucky.

They will need to give me a general anaesthetic before I ever get that done again. I've filled in the forms saying take me off the list. The letters keep coming. Even after ignoring the one saying if i dont respond within 2 weeks, they will take me off the list. The letters keep coming. I just put them straight in the bin now. Maybe people could try asking women what would need to happen for them to feel comfortable enough to have the test done. But they don't actually care. They'd rather just shame them.

Post menopause at 60ish it was very painful and I bled. I thought blow that again after trying to insert a pessary and failing last year. They stop at 64 anyway.

Maybe people could try asking women what would need to happen for them to feel comfortable enough to have the test done. But they don't actually care. They'd rather just shame them.

The smallest speculum should be standard for smears, as should cervical local anaesthesia during a IUD/IUS fitting.

Last time, I asked my nurse not to use the word "relax" because one of my attackers used it. Guess what she said and guess whose vagina promptly tried to clamp shut?

To clarify, I told the nurse that I was sexually assaulted and not to use a certain word because an assailant used it, and she used it anyway.

Yep. You're just another vagina to them. A job to do. You're not a human being who deserves dignity and compassion.

This. I don’t really understand the issue. I e never had a smear test, it’s my choice so I just ignore the letter.

Oddly I give a shit about consent.

If women do not want a smear I let them know they can opt out.
If women want a smear, then good for them, I'll not stand in their way.

Again instead of trying to force women to have an unwanted, invasive and now useless test, make the test better, find some money to treat the millions with ptsd/cptsd/had a horrendous smear once and just cannot go through it again/other shitty thing.

Women should be trusted. We have our own minds, we get to say what happens to our bodies. Consent matters.

I think the first poster is correct (per the NHS link someone kindly posted above, dated 2024). Extract

If a person’s sample tests negative for HPV, they will be invited back for routine cervical screening in 5 years . This is because their risk of developing cervical cancer is very low.
But if their result indicates the presence of HPV, they will be invited back for screening sooner or referred for other tests depending on whether there are also signs of abnormal cells in the cervical sample.

The last sentence certainly appears to indicate they do also check for abnormal cells as well as the HPV virus, although the HPV virus is prodominately used to assess risk.

I get that some women do not wish to have the test, nor hear about it, but it would be awful to dissuade others with mis-information.

You are exercising your right to bodily autonomy by not attending- you can’t expect the system to be altered to fit around just you.

For most people reminders are important, the uptake is too low especially in some population groups. They need to nag more in my opinion, not less. If it upsets a few people that’s just the way it is. The benefit is to the majority.

HPV comes and goes, I was HPV negative for years, then when not sexually active between 2 smears I was suddenly positive. Had CIN1 and a colposcopy. Went back for a follow up smear a year later and back to HPV negative and 3 year smear cycle again. If that year of positive had been between smears I’d have had no idea about it. People are very ignorant about HPV.

I recently had a smear test after avoiding it for about 3 years because I was the victim of a sexual assault.

I was honest with the GP and explained why I could not quite face having the test. She told me to just let her know when and if I felt ready and a year later we had another conversation about it and I decided to go ahead and do it. She advised me to tell the nurse exactly why I was nervous.

The nurse was really understanding. Made sure I was as comfortable as possible and she said that she would immediately stop if I told her to.

In the end it was not the most comfortable experience but we managed to do it and the results came back negative.

I knew that the creature who assaulted me had given me one strain of HPV (as I developed a genital wart a few weeks after the assault and was treated by a sexual health clinic) and although the signs of the infection never returned after that it was always at the back of my mind and I did not want my attacker to ruin my health more than he already had.

Doing the test gave me back some peace of mind.

I completely understand why some women don't want to go through the stress and pain of a smear but I just wanted to share my story and show that with an understanding GP practice it is possible to make the experience less traumatic.

For me it was a case that somehow I would have let that my man win if because of him I could no longer do a test that might spot cancer.

Can't you just ignore them and not get worked up about them? Same with flyers that come through the door, do you contact the companies and tell them to stop sending them ?

Your body, your choice, of course you don't have to have a smear ( I hate them), however they have saved so many woman's lives and I'm glad my 3 girls will be offered them.

Same. How can you drop your knees when one is wedged against a wall
I ask for it to be done while I'm on my side now

So you ended up having to tell two people what happened in order to get a smear done?

You still going to be ok in three years/five years to tell another two people what happened in order to get a smear?
Can you even vaguely imagine why some women do not want to recount what happened to them to even one person?
What if they had a terrible smear? Do they now have to also tell two people?
How many people you have to tell about an assault or rape or CSA or God awful smear is too many?

Why can we not just say NO?

Why is our no treated as a maybe?
CONSENT MATTERS

Yeah of course, PTSD and cPTSD always work like that.

How about our no is taken as no and if we go to the bother of opting out (which op has tried to do) then we are opted out. And no more letters and now texts come?
Or maybe the NHS could fund our counselling to become better, not offer quackery

This is the approach that I take, for the reasons you give, and it sometimes works.

It annoys me greatly that I have to disclose sexual assault at each test to only maybe get the gentle treatment I need.

Enough women are raped or sexually assaulted that I think we should all be treated as though we may have been, without having to ask for this or say why.

What this would look like during the appointment:

• the smallest speculum, automatically
• asking if there are any words or phrases we prefer to avoid
• being told explicitly "you can tell me to stop at any time and I will"
• actually stopping when we say

In the paperwork etc:

• a clearly-stated opt-out mechanism on the reminder letters
• respecting the opt-out
• signposting to self-test options

@Winnading

''You still going to be ok in three years/five years to tell another two people what happened in order to get a smear?
Can you even vaguely imagine why some women do not want to recount what happened to them to even one person?
What if they had a terrible smear? Do they now have to also tell two people?
How many people you have to tell about an assault or rape or CSA or God awful smear is too many?

Why can we not just say NO?

Why is our no treated as a maybe?
CONSENT MATTERS''

Wow....

I really don't see why you think it is appropriate to have a go at me for simply sharing my experience, the decisions I made and why I made them.

It is and should be each individual woman's choice and a no should be respected but you also need to learn that my choice was equally valid and should also be respected.

I just delete and ignore them

They don't. They only check cells if positive for HPV.

It is two different statements

If a person’s sample tests negative for HPV, they will be invited back for routine cervical screening in 5 years . This is because their risk of developing cervical cancer is very low.

Full stop. This is where the non HPV person's sample stops. They do not check cells.

But if their result indicates the presence of HPV, they will be invited back for screening sooner or referred for other tests depending on whether there are also signs of abnormal cells in the cervical sample.

The cell checking only happens if the result indicates HPV.

Winnading - agree. Just explaining that the financial 'incentives' don't end up personally in the GP's pocket.
The vast vast majority of non attenders don't actually complete the opt out form. I've completed one for some on in 13 years. They just don't book appointments or book them and then don't turn up.

@SamBeckettslastleap thanks, you are quite right. When I read that initially, I thought that can't be right, but I've read up and now understand why

'Almost all cases of cervical cancer are caused by HPV.
Some very rare types of cervical cancer are not caused by HPV. There is not a suitable screening test for these types of cervical cancer. Neither the Pap test nor the new Cervical Screening Test are able to detect these types of rare cervical cancers.
These types of cervical cancers are usually found when women report symptoms like pain and abnormal bleeding. Anyone who has symptoms should see a doctor without delay - it doesn't matter how old you are or how long it's been since your last Cervical Screening Test.'

Actually this thread has been so interesting. I' ve learnt a lot I'd never properly considered. Great DD had had chance to be vaccinated - I wonder how effective - will that generation's risk profile still mean they should screen?

@Becauseurworthit but that is what makes me so furious.

Your post explains clearly why non HPV women don't have their cells checked.
So why are we (the NHS, people on MN, the general narrative) still trying to push and guilt women into an uncomfortable and intrusive process for no reason?

The self swabs are easy and exactly the same thing is checked.

I'm not sure how many women would be happy knowing that the cells that were scraped were not even looked at.