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?

Use this:

https://www.csas.nhs.uk/contact-us/screening-cease-info/

They process it pretty quickly and then you get a letter confirming you'll never receive reminders/invites again (unless you opt back in).

I guess it depends on your life experience. A family friend died 10 years ago from cervical cancer; she was 32, she had two young children, she never attended a smear and by the time she went to the doctors gravely ill it was too late. I guess I wouldn’t want to put my children in the same position if I can avoid it. I’ve recently queried my test results as I want to 100% sure. If they don’t look into enough I’ll go through my partners private work medical.

I opted out of having smears done years ago. I don't get reminders but I do get "oh while you're here shall I book you in for a smear test", every single time I see the GP. The GP that said "it says here you don't wish to have a smear test, I'll book you in for one anyway", got one of my best glares.

I'm sorry about your family friend, but she could easily have died from another cancer. Her sad tale shouldn't be used to pressure other patients. It's not like comprehensive health screenings, including screenings for the development of other cancers, are so widely available. Why should women be pressured into HPV smears specifically, while little screening is available to them for other cancers?

It shouldn’t be pressured but the offer is there to try and protect us from this ‘hidden’ illness. True there isn’t screening readily available like this for other illness but that’s the thing, it is available. Maybe in the future more screening we be regularly available for other diseases. Of course the OP should be allowed to refuse if she wants. But is the treatment (if at the treatable stage) of cervical cancer better than potentially avoiding a screening? I don’t know, everyone has their own choice and I understand the OP has PTSD. I’m not trying to be unkind or rude, I’m just being honest.

I've had a hysterectomy and STILL get the reminders even though I've told them about 10 times. Completely inept 🙄

@Precipice What I’m trying to say is she could have been saved by a screening. Her children could still have a mum and I know she regretted it until the end. It could have been caught sooner, she may still be here. It’s not to pressure but I do think it’s important to be tested and for me knowing someone whose time was cut short by this disease makes it all the more important.

I bin the letters. Last time I saw a nurse, she asked me if I wanted a smear test, I said not even a little bit and she left it at that.

How about just ignoring the reminders instead of writing a lengthy, huffy rant online? You're obviously aware that turning down a smear test is within the rights of your own bodily autonomy however that is not the norm across society. The system is set up for the masses and not the few exceptions. Just because you have trauma about it does not mean normalising refusal for a potentially lifesaving test that millions of other women may need reminders for.

It's the same energy as anti-vaxxers. You can be anti-vaxx and nobody will force you or your kids to get vaccines. But there will always be posters, campaigns and reminders for vaccines because that is simply the normal state of public health for the vast majority of the population.

I would encourage you to tell the doctor about your fears/PTSD and see what they can do. It really is a life saving test. I was put to sleep whilst they removed my cancerous cells, which were identified in a biopsy that was prompted by a smear test showing abnormal cells. They don't usually put you to sleep for this procedure, but I have anxiety and was terrified- your GP will help you & may offer options.

I had avoided smears for years and may not be here if I had left it any longer.

But the smear test is not done in a vacuum. The Op has said that just getting the letters pushes her into PTSD. What do you think that having an actual smear test will do to her mental health? And what will that do to her life expectancy?

For most people (me included) there are considerable upsides for having smear tests.

But for the Op having a smear test comes with considerable risk. Likely much higher than the risk of cervical cancer.

That's crazy!! I don't know what I'll be able to do to get screened then, maybe nothing!

Not necessarily pointless as sometimes there are visual abnormalities of the cervix that will mean a referral for colposcopy with a gynaecologist.

I just ignore / delete as appropriate.

I do attend smears but due to a pregnancy the dates went out of whack. I was constantly getting texts and letter reminders (even though I was in date), even the one saying they’d remove me from the list. I had to contact the surgery 3x before somebody properly acknowledged it and sent an apology text. The reminders were also triggering to me as somebody with health anxiety (I’ve also had EDMR and CBT). Keep nagging and contacting the screening people to get yourself off, hopefully someone will listen!

I'm with you OP. And it's not as simple as 'ignore the reminders'. Those reminders send you down the mental PTSD rabbit hole. It's shit. My docs send a letter saying I can ask to speak to a gp about my concerns. When I call up to do that they say they'll call back but actually just send my a poxy leaflet instead. So now I do nothing.

Just ignore ,they are not compulsory! You can tell the GP surgery and come off the list

Certainly living up to your judgemental user name. Is it really beyond your comprehension that smear tests are so traumatic as to be impossible for some women.

The Op has already answered this. She has PTSD. That is her diagnosis.

Never had a smear and never intend to. Its a barbaric medieval test we have a much better alternative to and the only reason the smear was insisted on for so long was dumbshit nhs budgeting which i suspect if it applied to men would have been changed years ago -_- i make this clear constantly to the medical staff that try to convince me but sure enough it never sinks in. I used the proper opt out service which bought me a good few months but then they must have forgotten...

This https://www.csas.nhs.uk/support/pc-cs-007-002-cease-informed-consent-v3#:~:text=To%20remove%20your%20name%20from,do%20NOT%20use%20this%20form. Says it permanently opts you out.
Think I must have completed similar years ago as I’ve never had an invite, ditto mammogram, bowel screening and anything else they do.

It isn’t even called a smear any more - it is cervical screening and they only look at the cells if HPV is present. Given the HPV swap is so much less painful than the smear I opted for that instead (I paid via Superdrug) if it had come back positive then I would have gone for a smear.

op - would doing a swap yourself at home be an option for you?

You should request your post is removed, it is incorrect and misleading, they don’t check the smear for abnormal cells unless HPV is present in the sample.

Could you self test?