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?

You perhaps aren't familiar with ptsd then. @StephanieLampshade

Op I'm honestly conflicted with this. I 100% agree noone should force you into anything. You're within your rights to exercise your bodily autonomy as and when you see fit end of.

However, I'm also not sure that it's good enough for a gp practice to essentially wash their hands of a woman who's experienced trauma. If they all did this then i think the danger is that it could become too easy for women to be removed from the smear test register with no follow up, no genuine effort to try to work flexibly to help that woman feel as safe as possible to help them get the smear done. Or to check in in future to see if she still feels the same way or if perhaps things have changed because sometimes they do - they did for me and truthfully I probably still wouldn't have gone if i hadn't got a reminder and decided do you know what I am going to try it again. Then women who have had certain traumatic experiences could inadvertently end up at higher risk of certain illnesses etc not being picked up.

A self swab would be a better way of doing things for sure.

DM has never had one. Just ignore the letters?

I'm also not sure that it's good enough for a gp practice to essentially wash their hands of a woman who's experienced trauma.

I agree it's not good enough, but that's what our NHS does.

Thank you for all your replies. For those of you who “get it”, I’m so sorry that there are so many of us in this boat. For those who find me rant-y, ridiculous and ungrateful well, I hope you never find yourself in the position I am in.

yes, I have PTSD. I am medicated daily for it. I have done all the therapy and tried using heavier drugs for any sort of intimate exam. But the fact is, I simply cannot cope.

the letters through the door I did just bin and ignore. Even when the surgery started handwriting more and more passive aggressive notes along the top:
”THIS IS YOUR FIFTH REMINDER!!!!”
I just would mention again to my kind GP why I wouldn’t be taking up the offer and and could I please be removed from the recall system.

I physically watched him remove me from the system on his screen.

but nevertheless less, it would begin again.

the texts are new. First one last week. It was so unexpected as previously they had always been through the door. This felt too personal, too much an invasion of my space.
I tried to ignore it but soon the nightmares started. And now I’m stuck in loop that feels quite desperate.

of course I know it’s my choice to ignore them all. But it very much feels that my voice, my decision, for my body, just doesn’t matter.

Again.

I complained to my surgery more than once that the nurse carrying out the smear tests, did so quite aggressively. The test were also conducted on a bed with one side of it tight up against a wall , leaving no space to let legs be in the correct position ( she did it with my one leg against the wall when legs should be flopped apart - it looked and felt like she was trying to crank up some old victorian vehicle!)

Surgery not interested, it is part of their income
I said okay, I will not be having one till it is done properly
I could paper my walls with reminders

Maybe then they should think about how one utterly awful smear puts a woman off for life, organise some decent therapy for those women who were raped and cannot, literally cannot have a smear, and start checking more than just hpv. Or yanno make moves to self testing for hpv. Taking a no as a no, not a maybe when weve made her submit. Among other things.

OP, I visited my surgery, asked the receptionist to opt me out. She did and it took I think 7 years for any reminders. I've recently had a reminder, I will do the same again soon.

I have a letters from two different consultant gastroenterologists on my NHS record saying that it isn't appropriate to call me in for a smear any more. And yet, here comes another quick flash of PTSD when the inevitable text message arrives.

I don’t think I have had a reminder for a while because I used to ignore them. I told a GP that I wasn’t interested at some stage.

Clearly the ones on this thread that don't have a clue about smear tests can't be trusted.

But smear threads are always the same on Mumsnet.

It's almost as if there were a group of people wanting women not to be screened.

I’ve had two mastectomies due to cancer, and I still get letters for screening mammograms ( at the same screening service at the hospital) , texts telling me to book a mammogram, letters from the GP telling me off for not booking a mammogram and warning me about cancer… I’ve phoned asking them to take me off the list, but still the letters come. It’s upsetting, to say the least.

Fill out the form I posted to CSAS and it will stop. CSAS is the cervical screening administration service - they control the "reminder" system.

I agree that pushy text messages about an invasive examination when you have PTSD are intrusive and predictably distressing.

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

Complete the form and it stops.

I remember I opted out, but went to the surgery for some vaccinations and the nurse started on at me to have one done (she could do it then and there apparently). I suffer from needle phobia so was already a wreck from having my vaccinations and the last thing I needed was someone doing an intimate swab.

I still get letters and texts even though I've opted out.

I get it saves lives but the way women are bullied and made to feel doesn't feel right to me.

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

The people who send the reminders aren't reading the letters on anyone's record. Get CSAS to take you off the reminder list.

You can opt out, and there is a process to it. But despite that, you will probably still get the GP receptionist telling you and everyone else in the waiting area that you are overdue... and also being told when you are seeing your GP for something totally unrelated.

Years ago, I had was copied into a report from my GP to the MH team about my MH struggles, and it mentioned I was overdue a smear. Totally inappropriate.

I still get letters and texts even though I've opted out.

If your opt out has been processed by CSAS the only communication you should get is a letter confirming you won't receive any further letters or texts.

If you're still getting letters and texts then you haven't been recorded as opting out, just as a non-attender/non-responder.

The NHS is full of people with zero understanding of consent.

There are a group of people that don’t want smear tests and don’t want to be constantly harassed to get them or piled on in posts to be told how pathetic and irresponsible they are. They couldn’t give a toss whether other people have smear tests and don’t harass people who do.

I've only ever had one when I was a young woman circa early to mid eighties.

Never had one since and never will.

How long have they done this? I'm another with PTSD from a traumatic experience and having a smear is horrific for me. I really thought they still looked at cells.

Years.

You can refuse any of these tests or checks absolutely any time you like. Just throw the letters in the bin.

I'm so sorry that so many of us feel this way - I also had one smear pre-assault and refuse them since. I am slightly relieved though that this thread hasn't turned into the normal guilt trip. Thank you to those who may not have experienced trauma or who don't refuse smears themselves for understanding that it's not that simple for some people.

That's the point though, and it's the reason I won't go for a smear.

Not all cervical cancers are HPV related, but I'm highly unlikely to have HPV and if that's all they're testing for then I'm just as at risk for non-HPV related cancers with or without the pain and lack of dignity of the smear test, because it won't show up any more.

Around 10 years. I was so bloody cross when I found out. And then for the last 5+ years (because that is when I found out) to have nurses/GPs telling me why it was so important to look at the cells when I knew that mine would not get checked.

My friend has been on a seesaw for a decade with HPV tests. She gets a positive one so they wait the next one is negative. In-between she's had two children again had to wait, then Wales announced smear test every five years she was told the last time she had one (still waiting on results) she's decided to go private for peace of mind.